Your Alzheimer’s Disease Stories

By WBUR Newsroom October 9, 2011

Side view of the brain (Courtesy NIH)

Are you struggling with Alzheimer’s or caring for someone who has the disease? Or maybe you have lost someone to Alzheimer’s? If so, we would like to hear from you.

Tell us your stories or post your memories in the comments section below.

You can also share your pictures by emailing alzheimers@wbur.org.

WBUR Series: “Fade To Darkness: The Age Of Alzheimer’s”

Susan

My mother has been diagnosed with Alzheimer’s for over 5 years now, and though she is now 80 years of age, she is still aware for the most part. The overwhelming sadness of losing my mother in the earlier years have evolved into making great efforts to spend as much time as possible with her. We now enjoy each other’s company very much, and when I go to visit and care for her, we have “slumber parties” together – she, her 3 dogs and me. We read gossip magazines before bed (she with the same magazine every night, as though it was new) or watch movies and cry our eyes out together. Of course, the next morning, when asked about the movie we had viewed the night before, she does not recall it at all. But her humour is still with her, and recently when I asked how strange it must feel not to remember things, she replied “well, I am 80 you know”. I brace myself for the darker days to come, when full-time care in a facility will be necessary, but for now, I am enjoying the moments I am able to have with her. This disease really is a “long good-bye”.
Paedreau

My Mother was diagnosed with Alzheimer’s and came to live with us in 2004. But long before that I had to battle with her doctor’s to get anyone to notice my Mother was deteriorating. Once she moved in with my husband and I, we really had only each other for her day to day care. The bulk of our time was spent getting through our day of work and caring for her. It was stressful and challenging. I really missed the opportunity to spend the last years of her life experiencing good times together. Right down to the sleep I missed listening to a baby monitor I set up to wake me if she wandered during the night. This is a sad, horrible thing for anyone to go through. They are lost and so are their families. I will never feel good about the care we gave her. I will always have doubt and guilt. None of our choices every gave her comfort of happiness. It was a series of lousy decisions and lifetimes worth of second guessing everything I chose. She passed away in 2007 and I don’t think I’ll ever make peace with it.
- Katie
  
  Why so hard on yourself? You and your husband did the best you could with what you had and were able to provide. I realize that doesn’t make it feel better when you wanted to provide more. But, life gives us limits. Sometimes because of the bad choices we’ve made that prevents us from extending ourselves in a ways we’d hoped.
  
  Try to make peace. I am sure that is what she wants for you.
- John Bourke
  
  Paedreau – it’s normal to feel as though every choice was the wrong one. Many full-time family care-givers experience that.
  
  My co-author, James Downey, put it very eloquently in a blog post he wrote entitled “I am not a saint.”
  
  He wrote and posted it during the care-giving cycle – I think you may find it helpful. Here’s the link: http://communionblog.wordpress.com/2007/10/26/i-am-not-a-saint/
  
  Jim’s mother-in-law died from Alzheimer’s Disease in February of 2008. My mother-in-law died of it in December of 2007.
  
  If you have the time, please read that link. And then follow up with this one:
  
  http://herfinalyear.com/wordpress/?p=158
  
  I think you’ll find Jim’s words to be a comfort, and a reminder that we do our best, we second-guess, and ultimately we quite likely did our best in spite of the circumstances – and in spite of, as well as ~because of~ – our human frailties.
  
  I hope you can find some peace in his words.
  
  – JB
Paedreau

Another comment…books such as The 36 Hour Day were very eye opening, but for me the book Death in Slow Motion by Eleanor Cooney was the best thing I ever read. I didn’t have to put on a smile and tell myself “I did the best thing I could” like everyone keeps telling me. It’s awful, and sometimes you just need to feel awful about it. Eleanor resonated my feelings exactly. A great book!
- laurieg
  
  Your story brought tears to my eye, literallys. Alzheimer’s is such a struggle for ALL family members. My mother passed away from it 3 years ago next month. Sometimes I have peace and sometimes I still struggle with some of the choices we made concerning her care/our care giving. There is nothing good about the disease process, it is a long, slow horrible goodbye.
Zach

The story of my father in law, my father in Alzheimers, and me; a father to be: http://www.carpekilimanjaro.com
Mecamoo

My mom had been diagnosed with Alzheimers for over eight years before passing. There is so much sadness with this disease, the worst being when she knew she was losing her memory.

I remember one time I asked my mom how she was feeling and her response was, she had to be sad because I wasn’t smiling. So from then on, when I was with her, I smiled.

Alzheimers is an ongoing wake. The family mourns every time a loved one loses another function or memory, until all there is left to mourn is their physical passing.

My mom had an indomitable spirit and never gave up. She conveyed her thoughts with a look, or should I say the “mom” look, and with a gentle touch or a kiss.

There were humerous times and events, even times when my mom laughed at herself.

The only advice I can give is to be there with them to protect, nurture and enjoy their company. Talk with them, even though there will be no response, and hold their hand, for the human touch is powerful.
Ostral

My mother had Alzheimer’s. Before my father passed away, he had organized everything pretty well for my mother’s continued support.

She remained an independent person to the end, very much into taking care of herself and her possessions in her own home, albeit in adaptive ways due to the deteriorating memory and wheelchair restricted movement. I set up a system of remote video monitoring and voice communication, to stay in frequent touch with her and to complement the role of parttime homecare helpers. She also had a home telephone alert service. We had been warned about potential Social Services demands that would restrict the independence she desired, but were lucky to avoid any serious issues. Although my mother had long term care insurance, the process for contacting the insurance company and initiating payout was very fuzzy. She was likely eligible well before the actual start of insurance payout.

Before the disease took hold, she had specifically stated in writing that no heroic medical efforts should be made to keep her alive. She died in the hospital following heart failure, apparently brought on by all night obsession with efforts to care for her terminally ill pet dog. Her wedding ring that she wanted to keep with her disappeared and sad to say was apparently lost to caregivers.

My frequent communication with her when she was alive became ingrained in my brain, so that I still occasionally have passing thoughts about calling her.
James

FYI: My wife of 60 years died of Alzheimers in 2005 at age 80. I cared for her at home for 5 years — until her last two weeks in a hospice section of N Shore Medical. It was a difficult, frustrating but amazing time. She lost all her skills one after another but always retained her humanity and luckily never got beyond my homecare capabilities. I don’t want to write the stories but have some funny ones.
Susan

I really appreciate people’s heartfelt stories shared here. My dad died of Alzheimer’s disease two weeks ago Friday — he was almost 85, and had been diagnosed six years ago. His wonderful wife was his primary caregiver, and I often felt guilty that I was not closer by (he lived in Cleveland, where I grew up) and seeing him more often. It is also surprising, given how you lose a person bit by bit with this disease, how incredibly sad and lonely I feel now that he is actually, physically gone. It was a blessing for him — he was in a nursing home, eating thickened liquids, very well cared for by a caring staff and hospice workers, but still, he wouldn’t have wanted to go on that way.

I do have some really important memories of my time with him these past six years, particularly in the first few years when he was at home and more “with it.” We sat together by the hour and watched WWII movies on his sofa — the same ones over and over again — “Patton”, “The Great Escape,” etc. Dad petted the cat and sometimes held my hand — he told me he loved me — something he actually became MORE able to do in the beginning stages of his disease than he had been earlier in my life!

It’s been hard to watch him lose more and more of himself each time I have seen him…and it made it too painful to think about how he used to be. In a weird way, now that he’s gone, I can do that again, and I “have him back” on some level.
Susan

I really appreciate people’s heartfelt stories shared here. My dad died of Alzheimer’s disease two weeks ago Friday — he was almost 85, and had been diagnosed six years ago. His wonderful wife was his primary caregiver, and I often felt guilty that I was not closer by (he lived in Cleveland, where I grew up) and seeing him more often. It is also surprising, given how you lose a person bit by bit with this disease, how incredibly sad and lonely I feel now that he is actually, physically gone. It was a blessing for him — he was in a nursing home, eating thickened liquids, very well cared for by a caring staff and hospice workers, but still, he wouldn’t have wanted to go on that way.

I do have some really important memories of my time with him these past six years, particularly in the first few years when he was at home and more “with it.” We sat together by the hour and watched WWII movies on his sofa — the same ones over and over again — “Patton”, “The Great Escape,” etc. Dad petted the cat and sometimes held my hand — he told me he loved me — something he actually became MORE able to do in the beginning stages of his disease than he had been earlier in my life!

It’s been hard to watch him lose more and more of himself each time I have seen him…and it made it too painful to think about how he used to be. In a weird way, now that he’s gone, I can do that again, and I “have him back” on some level.
Tricia

I lost my dad on January 6 of this year. He was 76 years old. My dad was diagnosed when he was 69 years of age. This is a devestating disease for the individual and especailly for the family. My dad was a kind, gentle man. The last year of his life was spent in a long term care facility. Although, his ability to communicate with me was limited, he had a zest for life and a twinkle in his eye when I came to visit him. As his daughter, it was devastating to lose the man I knew as my father. When I visited my dad with my husband and daughters, we would take my dad out to eat and for a walk. My dad was a gentleman to the end. He would always attempt to pay for our meal and hold the door for me when we returned to the nursing home. I loved my dad with all my heart and hold onto the memories of my dad.
Rita

I am very much in the thick of things. My husband of 45 years was diagnosed with AD in 2002, a few months before his 60th birthday. His ability to communicate was the first casualty of the disease, but fortunately he has retained his good humor and affability. We were avid dancers and continued to enjoy this activity until last year. Now even walking is challenging. I was able to work until 2009 when I retired to care for him full time. I hope to be able to keep him at home although the challenge may become too great for me to manage on my own.
- George
  
  I walked with my mother for 3 years until she died in August of 2010. She had dementia related to high blood pressure among other things. You’ve been walking with your husband for 9 years now as you try to cope with the devastation of AD on both your lives. God bless you for your dedication and hard work, and your natural desire to want to keep him home. There’s a book that I found very helpful called “The Thirty-Six Hour Day”. You can search it on google or amazon. I used it as a manual and it was great as it’s indexed and covers every situation imaginable. I hope you find solace and support in it as I did. I also found support groups to be very helpful. Best wishes on your journey. If the time comes when you need to consider a facility, be sure to talk to people who have walked with their loved ones, and have had experiences that they can share, both good and bad. Take sales people’s accounts of what they offer with a grain of salt. There are good ones out there, but they’re few and far between. AD facilities are big business. Best wishes and God bless.
  - Rita
    
    I appreciate your kind response to my message. I will check out “The Thirty-Six Hour Day.”
Kathy P

My father struggled with Alzheimer’s disease for 3-4 years before he died. Always the life of the party with stories to tell, songs to sing and jokes to share, he became aware that some of his sparkle was fading. The saddest part of his end of life was that he became an apologist for his inability to entertain us all as he had done for most of his life. It was heartbreaking to see him embarrassed, sad and confused. We all loved him unconditionally and were lucky to be able to keep him home until just seven days before he died.
Gchoar

Eight years after my father passed, my mother, at the age of 82, began showing significant signs of Alzheimer’s. She was quarrelsome, forgetful and paranoid. My brother and I discussed what we should do, feeling that her quality of life was a primary consideration. I lived on the East Coast, he lived in Montana and my mother lived on the Olympic Peninsula in Washington State. We knew she had to move since there was no support system close by her home in Sequim. My brother found an independent living situation in Missoula which had an extended care facility attached. This was specifically geared to those with Alzheimers and would make future transitions as seamless as possible. This would also keep her close to friends and to him as well. I should add here that she and I had a difficult relationship and were never close from the time I was a young child. But, I was able to take time off from my job to help her move while my brother had a position as a professor that precluded him from taking more than a few days off at a stretch.I spent six weeks in Sequim helping her pack up the house and preparing her for her move to Missoula. Every pencil stub was an issue. They all were “family treasures.” I hadn’t ridden in a car with her since arriving and didn’t realize how impaired her driving had become. We drove down highway 101 to a U-Haul office near Port Angeles to pick up packing materials. When she left the office, she turned directly into three lanes of on-coming, west-bound traffic. I grabbed the wheel and steered us across the road before we were hit head-on. She refused to let me change places with her in the driver’s seat. After driving up on a sidewalk, nearly hitting a young bicyclist and then ramming into the woodpile on the right side of the garage, I placed a call to her doctor. The doctor was surprised my mother was still on the road, knowing the extent of her impairment. She scheduled an appointment for the next day, but my mother insisted on driving herself. I don’t believe I need to describe what I faced once she returned from learning she had lost her license. A few days later we loaded the last boxes into a United Moving Van heading for Missoula and I said my goodbyes to my brother and mother who were traveling together to Montana.My mother’s Alzheimer’s progressed relatively slowly. Several years later she still had wits enough to break out of locked security doors undetected. The staff was bemused and amazed at her clever ploys to escape detection as she scooted out the doors to freedom. I visited whenever possible, for two or more weeks at a time. Each time I visited I found a person to whom I could more and more easily relate. With her missing memory, came the peace she never allowed herself in the past. She had been an intelligent, driven, professional pharmacist who always felt she had to present herself as someone of importance and stature. With her loss of memory she forgot what she thought she should be and just settled into being herself. She was content and relaxed, able to enjoy even the smallest pleasures. The staff loved her. She had more friends and people who loved her now than she ever had at any time in the past.We took drives where every new traffic light was a new and wonderful experience for her. She wanted to stay and watch them change colors for more than one cycle. If there was no traffic, we would sit and watch the light show for as long as she wanted with the Montana hillsides framed in the windshield. We shopped for clothes, the only criteria being that they made her happy and were filled with color. We ate ice cream and laughed about the patterns the drips made as they ran down our cones. She had been a champion bridge player. Although she couldn’t remember the names of the suits, playing the cards was one of the last things she let go. She would draw pictures in the air of suit she wanted to bid. Later, we played slap jack and then slap the face card when discerning the difference between jacks and other face cards became too difficult. She loved food and delighted over each morsel as if it were the best thing she had ever tasted. To her, they were. As she approached 90 she relied mainly on a wheel chair for transport. I pushed her from one elegantly decorated hallway to another, through the atrium which was always filled with light and flowers and bubbling water and into the gardens where we discussed the plants and birds which all were new to her each time we visited. She loved to flirt with other aged male residents and attendants as well as with my brother. She called him, Tommy, which was my father’s name. I think she was truly happy. I am not certain this is how all people with Alzheimer’s progress, but for her, I think she may have experienced the best days of her life in Missoula. She died peacefully at 91. Impossibly, I had come to deeply love her and miss her company.
Gchoar

Eight years after my father passed, my mother, at the age of 82, began showing significant signs of Alzheimer’s. She was quarrelsome, forgetful and paranoid. My brother and I discussed what we should do, feeling that her quality of life was a primary consideration. I lived on the East Coast, he lived in Montana and my mother lived on the Olympic Peninsula in Washington State. We knew she had to move since there was no support system close by her home in Sequim. My brother found an independent living situation in Missoula which had an extended care facility attached. This was specifically geared to those with Alzheimers and would make future transitions as seamless as possible. This would also keep her close to friends and to him as well. I should add here that she and I had a difficult relationship and were never close from the time I was a young child. But, I was able to take time off from my job to help her move while my brother had a position as a professor that precluded him from taking more than a few days off at a stretch.I spent six weeks in Sequim helping her pack up the house and preparing her for her move to Missoula. Every pencil stub was an issue. They all were “family treasures.” I hadn’t ridden in a car with her since arriving and didn’t realize how impaired her driving had become. We drove down highway 101 to a U-Haul office near Port Angeles to pick up packing materials. When she left the office, she turned directly into three lanes of on-coming, west-bound traffic. I grabbed the wheel and steered us across the road before we were hit head-on. She refused to let me change places with her in the driver’s seat. After driving up on a sidewalk, nearly hitting a young bicyclist and then ramming into the woodpile on the right side of the garage, I placed a call to her doctor. The doctor was surprised my mother was still on the road, knowing the extent of her impairment. She scheduled an appointment for the next day, but my mother insisted on driving herself. I don’t believe I need to describe what I faced once she returned from learning she had lost her license. A few days later we loaded the last boxes into a United Moving Van heading for Missoula and I said my goodbyes to my brother and mother who were traveling together to Montana.My mother’s Alzheimer’s progressed relatively slowly. Several years later she still had wits enough to break out of locked security doors undetected. The staff was bemused and amazed at her clever ploys to escape detection as she scooted out the doors to freedom. I visited whenever possible, for two or more weeks at a time. Each time I visited I found a person to whom I could more and more easily relate. With her missing memory, came the peace she never allowed herself in the past. She had been an intelligent, driven, professional pharmacist who always felt she had to present herself as someone of importance and stature. With her loss of memory she forgot what she thought she should be and just settled into being herself. She was content and relaxed, able to enjoy even the smallest pleasures. The staff loved her. She had more friends and people who loved her now than she ever had at any time in the past.We took drives where every new traffic light was a new and wonderful experience for her. She wanted to stay and watch them change colors for more than one cycle. If there was no traffic, we would sit and watch the light show for as long as she wanted with the Montana hillsides framed in the windshield. We shopped for clothes, the only criteria being that they made her happy and were filled with color. We ate ice cream and laughed about the patterns the drips made as they ran down our cones. She had been a champion bridge player. Although she couldn’t remember the names of the suits, playing the cards was one of the last things she let go. She would draw pictures in the air of suit she wanted to bid. Later, we played slap jack and then slap the face card when discerning the difference between jacks and other face cards became too difficult. She loved food and delighted over each morsel as if it were the best thing she had ever tasted. To her, they were. As she approached 90 she relied mainly on a wheel chair for transport. I pushed her from one elegantly decorated hallway to another, through the atrium which was always filled with light and flowers and bubbling water and into the gardens where we discussed the plants and birds which all were new to her each time we visited. She loved to flirt with other aged male residents and attendants as well as with my brother. She called him, Tommy, which was my father’s name. I think she was truly happy. I am not certain this is how all people with Alzheimer’s progress, but for her, I think she may have experienced the best days of her life in Missoula. She died peacefully at 91. Impossibly, I had come to deeply love her and miss her company.
Gchoar

Eight years after my father passed, my mother, at the age of 82, began showing significant signs of Alzheimer’s. She was quarrelsome, forgetful and paranoid. My brother and I discussed what we should do, feeling that her quality of life was a primary consideration. I lived on the East Coast, he lived in Montana and my mother lived on the Olympic Peninsula in Washington State. We knew she had to move since there was no support system close by her home in Sequim. My brother found an independent living situation in Missoula which had an extended care facility attached. This was specifically geared to those with Alzheimers and would make future transitions as seamless as possible. This would also keep her close to friends and to him as well. I should add here that she and I had a difficult relationship and were never close from the time I was a young child. But, I was able to take time off from my job to help her move while my brother had a position as a professor that precluded him from taking more than a few days off at a stretch.I spent six weeks in Sequim helping her pack up the house and preparing her for her move to Missoula. Every pencil stub was an issue. They all were “family treasures.” I hadn’t ridden in a car with her since arriving and didn’t realize how impaired her driving had become. We drove down highway 101 to a U-Haul office near Port Angeles to pick up packing materials. When she left the office, she turned directly into three lanes of on-coming, west-bound traffic. I grabbed the wheel and steered us across the road before we were hit head-on. She refused to let me change places with her in the driver’s seat. After driving up on a sidewalk, nearly hitting a young bicyclist and then ramming into the woodpile on the right side of the garage, I placed a call to her doctor. The doctor was surprised my mother was still on the road, knowing the extent of her impairment. She scheduled an appointment for the next day, but my mother insisted on driving herself. I don’t believe I need to describe what I faced once she returned from learning she had lost her license. A few days later we loaded the last boxes into a United Moving Van heading for Missoula and I said my goodbyes to my brother and mother who were traveling together to Montana.My mother’s Alzheimer’s progressed relatively slowly. Several years later she still had wits enough to break out of locked security doors undetected. The staff was bemused and amazed at her clever ploys to escape detection as she scooted out the doors to freedom. I visited whenever possible, for two or more weeks at a time. Each time I visited I found a person to whom I could more and more easily relate. With her missing memory, came the peace she never allowed herself in the past. She had been an intelligent, driven, professional pharmacist who always felt she had to present herself as someone of importance and stature. With her loss of memory she forgot what she thought she should be and just settled into being herself. She was content and relaxed, able to enjoy even the smallest pleasures. The staff loved her. She had more friends and people who loved her now than she ever had at any time in the past.We took drives where every new traffic light was a new and wonderful experience for her. She wanted to stay and watch them change colors for more than one cycle. If there was no traffic, we would sit and watch the light show for as long as she wanted with the Montana hillsides framed in the windshield. We shopped for clothes, the only criteria being that they made her happy and were filled with color. We ate ice cream and laughed about the patterns the drips made as they ran down our cones. She had been a champion bridge player. Although she couldn’t remember the names of the suits, playing the cards was one of the last things she let go. She would draw pictures in the air of suit she wanted to bid. Later, we played slap jack and then slap the face card when discerning the difference between jacks and other face cards became too difficult. She loved food and delighted over each morsel as if it were the best thing she had ever tasted. To her, they were. As she approached 90 she relied mainly on a wheel chair for transport. I pushed her from one elegantly decorated hallway to another, through the atrium which was always filled with light and flowers and bubbling water and into the gardens where we discussed the plants and birds which all were new to her each time we visited. She loved to flirt with other aged male residents and attendants as well as with my brother. She called him, Tommy, which was my father’s name. I think she was truly happy. I am not certain this is how all people with Alzheimer’s progress, but for her, I think she may have experienced the best days of her life in Missoula. She died peacefully at 91. Impossibly, I had come to deeply love her and miss her company.
Gchoar

Eight years after my father passed, my mother, at the age of 82, began showing significant signs of Alzheimer’s. She was quarrelsome, forgetful and paranoid. My brother and I discussed what we should do, feeling that her quality of life was a primary consideration. I lived on the East Coast, he lived in Montana and my mother lived on the Olympic Peninsula in Washington State. We knew she had to move since there was no support system close by her home in Sequim. My brother found an independent living situation in Missoula which had an extended care facility attached. This was specifically geared to those with Alzheimers and would make future transitions as seamless as possible. This would also keep her close to friends and to him as well. I should add here that she and I had a difficult relationship and were never close from the time I was a young child. But, I was able to take time off from my job to help her move while my brother had a position as a professor that precluded him from taking more than a few days off at a stretch.I spent six weeks in Sequim helping her pack up the house and preparing her for her move to Missoula. Every pencil stub was an issue. They all were “family treasures.” I hadn’t ridden in a car with her since arriving and didn’t realize how impaired her driving had become. We drove down highway 101 to a U-Haul office near Port Angeles to pick up packing materials. When she left the office, she turned directly into three lanes of on-coming, west-bound traffic. I grabbed the wheel and steered us across the road before we were hit head-on. She refused to let me change places with her in the driver’s seat. After driving up on a sidewalk, nearly hitting a young bicyclist and then ramming into the woodpile on the right side of the garage, I placed a call to her doctor. The doctor was surprised my mother was still on the road, knowing the extent of her impairment. She scheduled an appointment for the next day, but my mother insisted on driving herself. I don’t believe I need to describe what I faced once she returned from learning she had lost her license. A few days later we loaded the last boxes into a United Moving Van heading for Missoula and I said my goodbyes to my brother and mother who were traveling together to Montana.My mother’s Alzheimer’s progressed relatively slowly. Several years later she still had wits enough to break out of locked security doors undetected. The staff was bemused and amazed at her clever ploys to escape detection as she scooted out the doors to freedom. I visited whenever possible, for two or more weeks at a time. Each time I visited I found a person to whom I could more and more easily relate. With her missing memory, came the peace she never allowed herself in the past. She had been an intelligent, driven, professional pharmacist who always felt she had to present herself as someone of importance and stature. With her loss of memory she forgot what she thought she should be and just settled into being herself. She was content and relaxed, able to enjoy even the smallest pleasures. The staff loved her. She had more friends and people who loved her now than she ever had at any time in the past.We took drives where every new traffic light was a new and wonderful experience for her. She wanted to stay and watch them change colors for more than one cycle. If there was no traffic, we would sit and watch the light show for as long as she wanted with the Montana hillsides framed in the windshield. We shopped for clothes, the only criteria being that they made her happy and were filled with color. We ate ice cream and laughed about the patterns the drips made as they ran down our cones. She had been a champion bridge player. Although she couldn’t remember the names of the suits, playing the cards was one of the last things she let go. She would draw pictures in the air of suit she wanted to bid. Later, we played slap jack and then slap the face card when discerning the difference between jacks and other face cards became too difficult. She loved food and delighted over each morsel as if it were the best thing she had ever tasted. To her, they were. As she approached 90 she relied mainly on a wheel chair for transport. I pushed her from one elegantly decorated hallway to another, through the atrium which was always filled with light and flowers and bubbling water and into the gardens where we discussed the plants and birds which all were new to her each time we visited. She loved to flirt with other aged male residents and attendants as well as with my brother. She called him, Tommy, which was my father’s name. I think she was truly happy. I am not certain this is how all people with Alzheimer’s progress, but for her, I think she may have experienced the best days of her life in Missoula. She died peacefully at 91. Impossibly, I had come to deeply love her and miss her company.
Gchoar

Eight years after my father passed, my mother, at the age of 82, began showing significant signs of Alzheimer’s. She was quarrelsome, forgetful and paranoid. My brother and I discussed what we should do, feeling that her quality of life was a primary consideration. I lived on the East Coast, he lived in Montana and my mother lived on the Olympic Peninsula in Washington State. We knew she had to move since there was no support system close by her home in Sequim. My brother found an independent living situation in Missoula which had an extended care facility attached. This was specifically geared to those with Alzheimers and would make future transitions as seamless as possible. This would also keep her close to friends and to him as well. I should add here that she and I had a difficult relationship and were never close from the time I was a young child. But, I was able to take time off from my job to help her move while my brother had a position as a professor that precluded him from taking more than a few days off at a stretch.I spent six weeks in Sequim helping her pack up the house and preparing her for her move to Missoula. Every pencil stub was an issue. They all were “family treasures.” I hadn’t ridden in a car with her since arriving and didn’t realize how impaired her driving had become. We drove down highway 101 to a U-Haul office near Port Angeles to pick up packing materials. When she left the office, she turned directly into three lanes of on-coming, west-bound traffic. I grabbed the wheel and steered us across the road before we were hit head-on. She refused to let me change places with her in the driver’s seat. After driving up on a sidewalk, nearly hitting a young bicyclist and then ramming into the woodpile on the right side of the garage, I placed a call to her doctor. The doctor was surprised my mother was still on the road, knowing the extent of her impairment. She scheduled an appointment for the next day, but my mother insisted on driving herself. I don’t believe I need to describe what I faced once she returned from learning she had lost her license. A few days later we loaded the last boxes into a United Moving Van heading for Missoula and I said my goodbyes to my brother and mother who were traveling together to Montana.My mother’s Alzheimer’s progressed relatively slowly. Several years later she still had wits enough to break out of locked security doors undetected. The staff was bemused and amazed at her clever ploys to escape detection as she scooted out the doors to freedom. I visited whenever possible, for two or more weeks at a time. Each time I visited I found a person to whom I could more and more easily relate. With her missing memory, came the peace she never allowed herself in the past. She had been an intelligent, driven, professional pharmacist who always felt she had to present herself as someone of importance and stature. With her loss of memory she forgot what she thought she should be and just settled into being herself. She was content and relaxed, able to enjoy even the smallest pleasures. The staff loved her. She had more friends and people who loved her now than she ever had at any time in the past.We took drives where every new traffic light was a new and wonderful experience for her. She wanted to stay and watch them change colors for more than one cycle. If there was no traffic, we would sit and watch the light show for as long as she wanted with the Montana hillsides framed in the windshield. We shopped for clothes, the only criteria being that they made her happy and were filled with color. We ate ice cream and laughed about the patterns the drips made as they ran down our cones. She had been a champion bridge player. Although she couldn’t remember the names of the suits, playing the cards was one of the last things she let go. She would draw pictures in the air of suit she wanted to bid. Later, we played slap jack and then slap the face card when discerning the difference between jacks and other face cards became too difficult. She loved food and delighted over each morsel as if it were the best thing she had ever tasted. To her, they were. As she approached 90 she relied mainly on a wheel chair for transport. I pushed her from one elegantly decorated hallway to another, through the atrium which was always filled with light and flowers and bubbling water and into the gardens where we discussed the plants and birds which all were new to her each time we visited. She loved to flirt with other aged male residents and attendants as well as with my brother. She called him, Tommy, which was my father’s name. I think she was truly happy. I am not certain this is how all people with Alzheimer’s progress, but for her, I think she may have experienced the best days of her life in Missoula. She died peacefully at 91. Impossibly, I had come to deeply love her and miss her company.
Janice Rayner

Both of my parents got Alzheimer’s in their eighties, now both dead. In my support group I learned that that fact put me in graver danger of acquiring the disease myself. I turned 65 this summer. Two “facts” I learned but cannot verify are that zinc is contraindicated because it holds amyloid plaque, so I no longer take an A-Z vitamin because Z is always zinc, and never try to “best” an Alzheimer sufferer with the truth, as in, if they saw their mother this morning, don’t say, “Oh, your Mom died in ’53!” but rather ask them to give her your love next time she drops by. To corner a person is cruel and stress will do neither of you any good.
Dillapearl

My mother died from Alzheimer’s. She loved to sing. Even the week of her death when she had lost the ability to speak she could still hum the tune to the song I would sing with her. Her two favorites were Amazing Grace and How Much is That Doggie in the window.

Many days I had the joy to feed her lunch. While the staff would prepare the room and food I would have all of the residents singing old familiar songs to pass the time. This brought many of them great joy. One day while singing The Battle Hymn of the Republic something unique happened. We had just gotten to the chorus when booming baritone voice joined in. It was so startling that the staff came into the room to see what had happened. An older gentleman in the corner had started singing. he had never spoken before at the center. When the song was over he went back to silence. Music is very important – Don’t forget to sing!
Chris Mesarch

Hello,
Thanks for doing this series. Attached are some rough sketches from my work in progress
graphic novel, “Life, Still”, about taking care of my mom with
Alzheimer’s. I hope you enjoy them. I’ve been lucky to be able to distill the experience into drawings.
Best,
Chris Mesarch
- Hilary
  
  Hi Chris, you have captured the “people at night.” Keep writing! A bathroom sketch would also be helpful for people to understand this disease.
  - Chris Mesarch
    
    Thank you, Hilary! In my mom’s case, she was self sufficient and meticulous to the end. At one stage, I took her to adult day care, telling her everyday that she was going to a job. It was so touching to watch her choose her outfit and get ready for “work”. They say all Alzheimer patients are different. Perhaps you have some bathroom stories that might comfort this discussion group, or strike a familiar chord.
Laurikenyon

my dad died of alzheimers ,I took care of him as long as I couldthe worst day was when I took his car keys and licence and the physical attacks there were of course the verbal attacks and being accused of stelling the day he left the gas on I took a leave of absence from work which lasted 3 months before I had to place him in a alzheimer assisted living he lost the battle a year ago oct 17
Sandy Beckner

In 1990 I realized that my mother was in the early stages of Alzheimers. It was 18 years before
she died of breast cancer. I cared for her at home for 5 1/2 years but we had to institutionalize her
since she became a wonderer and escape artist. At one stage this former Math teacher spoke
only in numbers. This was such a long time to watch this amazing woman slowly slip away.
We were so fortunate to have found the “Eden Home” in New Braunfels, Texas that provided
the quality of care that we wanted for our mother.
JoeamarJoe

The coordination of matters and the preparation for the inevitable end point with dementia is what my family is dealing with now as mom continues to slowly decline with a diagnosis of vascular dementia. As someone with a background in healthcare and very knowledgeable about dementia I thought I would be able to handle this with less stress, anger, guilt and depression. My siblings live in the same area as mom but I live a distance away. They defer to me with just about all decisions and coordinating from a distance is so difficult. Mom is angry, disagreeale at times, and in denial. She is retreating into a smaller world because she refuses to engage outside of family. Over the last two years i have coordinated a change with her PCP, simplified her medications, established calendar and note system in her house, taken away her car, established power of attorney, advanced directives, etc., applied for Medicaid as a backup, try and schedule as many family visitors as possible, and dozens of other supports and changes. It is incredibly stressful – more so than I could ever have imagined – and we’ve only scratched the surface on what needs to be done and what we will face in the years to come. and all along our lovely mother slips away.
- Rob
  
  What do you mean by “applied for Medicaid as a backup?” I ask because we are waiting 3 more years to apply for Medicaid since assets were transferred only 2 years ago. Should we not be waiting? I just want to better understand your approach.
Brahmi

Oct. 29 & 30 Dr. Miguel Rivera, a psychiatrist from Florida who specializes in Alzheimer’s Disease (AD) will be doing workshops at the TriYoga Boston center in Waltham (a non-profit center focusing on therapeutic yoga http://www.triyogaboston.org). You can read about Dr. Rivera’s ground breaking work in the Herald Tribune article (http://www.heraldtribune.com/article/20110102/ARTICLE/101021037). His patients take about half the medications of state average. Dr. Rivera’s research has led him to focus on early intervention and prevention, as there is no cure. This includes avoiding certain medications and making lifestyle changes, including diet, and activities to keep the brain healthy and body healthy.

Another huge issue with Alzheimer’s is caregiver stress. Dr. Rivera’s research focuses on the physiological effects of stress, and how it puts caregivers at higher risk for diabetes, cardiovascular disease, depression, Alzheimer’s, and mortality. On Oct. 30th Dr. Rivera will be giving a workshop on Stress Management that also includes live style approaches to protecting the health of caregivers.
Linda H

This disease impacts everyone. It does not discriminate. My partner Peter was diagnosed at age 54. My Dad also suffers, he is 84. He had ten cousins, all who have died from this disease. Everyday is a challenge. Denial is hard, but all those techniques of doing up the meds, leaving notes, etc, don’t work after a while. I frequently wake to the smell of burnt something or smoke, with a pan left on a hot burner on the stove, because he got up early and decided to cook. our 401K is going to employ caregivers who come in and do the day to day activities, and the activities that use to bring him joy, like fishing and gardening.

We belong to support groups, and here the stories of those who have had to quit work to stay home and take care of the spouse. Income loss has an obvious impact on the quality of life and the care both the patient and the caregiver receive.

The Alzheimer’s association offers a lot of support, one on one consultations, and the ability to talk to those who understand what our day is. But the reality is: this sucks. For everyone. We need resources, answers and the ability to cope. We live moment to moment, day to day.

And unless your living it, you don’t understand it. What you can do? Research to find answers is key, join a study, give funds to research, advocate for an end to this disease. Proven fact that money that goes to research for other programs is much higher than that for Alzheimer’s research, and the return on investment, shows good results for the heart diesease, AIDS and cancer research. We need to do the same with AD.
Colette Cassidy

I may be the only American not on Facebook. So when someone suggested I join Twitter this summer to join the Alzheimer’s community, I didn’t think much of it. But countless connections and more than a thousand Tweets later, I discovered what I think is the best reason for Twitter: Connecting for a Cause. I connected with a woman in Paris, who helped produce a film on the Arts and Alzheimer’s, “I Remember Better When I Paint”; a couple in Alabama who wrote about their experience with Alzheimer’s in 8 family members, “A Pocket Guide for the Alzheimer’s Caregiver”; a Canadian woman struggling with career and caregiving; an Irish runner watching her mother’s sad decline; a woman in Boston who uses Twitter to share her mother’s views on her own Alzheimer’s, and just about everything else!�
My mother has Early Onset Alzheimer’s, considered to be the rarest and most aggressive form of the disease. I also saw Alzheimer’s in my grandfather, in his 80′s. And I can honestly say nothing prepared me for this disease, how it attacks a person, a family, life itself. It’s not just memory loss, it will rob you of your abilities, so that everyday functions become impossible. It will change your personality, make you suspicious of people around you, yet you will require 24/7 care.
A researcher in Philadelphia says the expected rise in Alzheimer’s actually frightens him, and will have a devastating impact on our society, worse than any natural disaster. There is still no treatment, cure, or even a way to slow its progression.
Alzheimer’s research is critically underfunded. Awareness may change that. The more people know, the more they’ll be inclined to ACT. Then maybe we can End Alzheimer’s. This series by WBUR should be duplicated by every major news organization because we ALL need to care about Alzheimer’s.
And in the meantime, I’ve taken to Twitter, hoping to raise Alzheimer’s awareness one tweet at a time. Will you join me? @cc4alz:twitter
Sam Howe

Writing from Dublin, Ireland.
10/31/09 Life was good. It was my b-day, I had recently returned from an awesome holiday of 8 days cycling around Cape Cod & a week in Boston. I had just completed my first marathon. Healthy lifestyle is what I was all about. I was also working towards my Masters Degree & planning a year long trip around Latin America, which would end with me finally trying to live my dream in the United States.
Two weeks later everything changed. My Mother was diagnosed with Alzheimer’s.
My world fell about. We held a family meeting (among my sister & brother) and between us came up with a plan of action for care.

Next few months were tough, as I went through the various emotions – anger, hurt, upset.
I deferred my Masters, shelved my travel plans, but through it all continued running.

The whole diagnosis process was pretty frustrating. We kept asking the doctors about Alzheimers (my mother’s sister in the States had been diagnosed with it two years previous). Mom had been diagnosed with Mild Cognitive Impairmonth 18 months earlier, but doctor’s told us not to worry about Alzheimers.

After few months realised couldn’t go on being angry, anger solved nothing. Besides, I was always a happy, optimistic person – I live in a country with pretty shitty weather but it’s always sunny in my world. So I found a way to accept it all and make peace with it.

As a family we got in to a rhythem. With Alzheimer’s though, you can never get too comfortable, never know what’s around the corner. Mom continuted to deteriorate, but we continued to deal with it.

Two years on, my mother is continuing to deteriorate. She is at the mid to advanced stage.
9/13/11 I was having my usual Tuesday night stay-over with my Mom. Night started out fine, I cooked dinner, we went for usual walk, all was good. But then when we got back, I’m not really sure what happened. What I do know is once again, my world fell about. Over course of night my mom got agitated and then for the first time she had absolutely no idea who I was, who Sam was, who her baby daughter was. She knew who my sister and brother were, but not me. It was heart-breaking.
For next 24 hours I crumbled, but then like a Phoenix from the flame, I rose up, stronger. And I realised one of my missions in my life. I’ve always been a pro-active kind of person, a do-er and now I was determind to play my part in raising awareness for Alzheimers. Through awareness, we will raise funds, with funds, there is research, through research we will find a cure.

I had been using twitter on and off for the previous couple of years. In the last few months, Tuesdays (night I stay over with my Mom), had been my Alzheimers related tweet day. Since 9/13, I have become a lot more active in using twitter for Alzheimer’s related tweets. I have connected with some amazing people, who all have their stories. Together we can hopefully play our part in finding an end to this tragic disease.

I should probably add that I am a hugely private person. Up until about 3 weeks, I shared very little of my life. Even with those closest to me, I didn’t always share a lot about my life. My life was mine, I didn’t care to share. So last few weeks has been another journey for me, as I’ve tried to be more open and sharing of my experience.

Finally, I hope to run the Boston Marathon next year to raise funds & awareness for Alzheimers.
You can find me on twitter – @kobeswish:twitter
- Colette Cassidy
  
  Sam is one of the great Alzheimer’s advocates I’ve been fortunate enough to “meet” on Twitter. The passion and drive she writes about here is very real. We will End Alzheimer’s because of her tireless efforts, and the efforts of everyone like her. I hope when she runs the Boston marathon for Alzheimer’s Awareness we ALL cheer her on! Colette @cc4alz:twitter
Foshaughnessy

Thank you for all your stories. The hardest part for me is when I have to leave my mom in care of others. How can they ever begin to know the person she was before this disease? How can they know she was the most caring nurse to many with the same illness? I can tell them but they will never know her kindness.
- Sunshine
  
  I sure do understand what you are dealing with. Due to my situation the caregivers always say they understand But Do they Really? No I say no one does until it effects one of you loved ones…. It is so hard to leave due to her confusion of who people are and where they come from. She will ask them hundred times. LOL She is a Happy Dementia most of the times.
Victoria

The stories that NPR and the New York Times frequently publish and air have been a godsend to our family. My heart goes out to each of you in this post.

We noticed my father slipping when he was 64 in 2008. My sister noticed it several years before, and in retrospect I see this now. He was an industrial physicist until 2001, at first we blamed his lethargy and dull memory on his retirement. But then when he would forget he was babysitting the grand-kids and leave, get lost in my house, or walk into the wrong house, we knew we had to make a plan. I am so fortunate that my brother and sister and mother are on board, we all work together well. It was only the spring of 2011 that the doctor finally diagnosed him, he promptly forgot. We were hoping that this would help with his denial – he won’t take any treatment for Alzheimer’s or see a counselor - and still insists on managing his stock market portfolio and the bills. Never mind driving. We have resorted to working around the edges to keep our eyes on these things without hurting his pride, as he still insists he does not have Alzheimer’s disease. Even approaching the subject will bring out hitherto unknown belligerence. It would be interesting to know how many others with this disease never knowledge or remember that they have it.
Victoria

The stories that NPR and the New York Times frequently publish and air have been a godsend to our family. My heart goes out to each of you in this post.

We noticed my father slipping when he was 64 in 2008. My sister noticed it several years before, and in retrospect I see this now. He was an industrial physicist until 2001, at first we blamed his lethargy and dull memory on his retirement. But then when he would forget he was babysitting the grand-kids and leave, get lost in my house, or walk into the wrong house, we knew we had to make a plan. I am so fortunate that my brother and sister and mother are on board, we all work together well. It was only the spring of 2011 that the doctor finally diagnosed him, he promptly forgot. We were hoping that this would help with his denial – he won’t take any treatment for Alzheimer’s or see a counselor - and still insists on managing his stock market portfolio and the bills. Never mind driving. We have resorted to working around the edges to keep our eyes on these things without hurting his pride, as he still insists he does not have Alzheimer’s disease. Even approaching the subject will bring out hitherto unknown belligerence. It would be interesting to know how many others with this disease never knowledge or remember that they have it.
david snieckus

Alzheimer’s
Disease.

Alzheimer’s is a
degenerative brain disease in which nerve fibers become tangled, protein
deposits or plaque build up in the brain tissue, and normal mental functioning
declines. Characterized by memory loss, disorientation, and confusion,
Alzheimer’s is commonly accompanied by frustration, bewilderment, dramatic mood
swings, and gradual loss of physical and mental abilities. In the end, the
persons grow noncommunicative, incontinent, and physically unable to care for
themselves. Death follows from with several years to more that 20 years, with
the average about 7 years. In the United States, Alzheimer’s is the
fourth leading cause of death after heart disease, cancer and stroke among
adults. Women are twice as likely as men to have the disease, whites are four
times as susceptible as blacks, and one our of three elderly persons over 80
has Alzheimer’s. the disease is considered incurable, and modern science use
several medications to slow down it’s spread, control mood swings and other symptoms.
Family support is a major concern, as caring for an Alzheimer’s patient puts
tremendous stress on other family members.

FROM THE MACROBIOTIC
VIEW, Alzheimer’s is caused by long-term dietary excess. When food becomes
one-sided, either too expansive or too contractive, it affects thinking, the
emotions, and mental functioning. If the nerves, neurological centers, and
brain cells and tissues are too tight or too loose, thinking becomes impaired.
THE PRIMARY CAUSE of Alzheimer’s is chronic consumption of excessive animal fat
and protein from meat, dairy, chicken, and eggs, which effect the nerves and
capillaries. THE SECONDARY CAUSE is excessive intake of simple sugars,
especially white sugar, chocolate and honey. Sugar affects the synthesis of the
B vitamins in the intestines and consequently brain functioning. Too much oily,
greasy food; refined flour from bread and pasta; hot spices, including mustard
and garlic, are contributing factors. Overeating may also be involved.

p. 326-327 The
Macrobiotic Path to Total Health by Michio Kushi and Alex Jack, Ballantine
Books, NY 2003
Christina Birch

Dear WBUR and friends,

There exists another community out there that, if listening to this series, can empathize with an intensity greater than what you might expect from families that have lost loved ones to cancer: those with loved ones dead or dying from glioblastoma multiforme (GBM).

The bright foci of a GBM on a CT or MRI marks the death of life as it once was for so many families. Like a diagnosis for Alzheimer’s, the utterance of “GBM” from a neurologist is a death sentence. The patient knows they will die from the disease. In Alzheimer’s, you “get” to struggle through 5 or more years of life. With GBM, life expectancy and treatment-based life extension are discussed on the scale of months and weeks, respectively. The longest known survivors have lived 5 years post-diagnosis, but they are the exceptions.

With GBMs, we watch our loved ones go through all the same memory loss, physical ability loss, and the loss of identity and the self, just like Alzheimer’s patients do. Plus the seizures and the chemotherapy side effects that accompany their disintegration.

You don’t get a chance to adapt to or accept your sentence when you are diagnosed with a GBM. How can a family survive such a blow? You can choose to ignore the disease and leave the world quickly in 3 months, or you can make feeble efforts to fight the disease to extend life by 18 months, on average.

My family had to ride the terribly fast (18-month) ride through:

- Mom Before: beautiful (at 57!), active (marathoner), positive, talented (pianist), supportive (mother of 2)

- Mom After Diagnosis: depressed, in denial, withdrawn, hopeless

- Mom During Progression: confused, scared, unreachable, physically and emotionally disabled

- Mom, After Death of the Mind (on Christmas Day, 2010)

- Mom, In Memory, After Death of the Body (at age 59)

My heart aches for all GBM and Alzheimer’s families. These diseases fundamentally change who the patient is, and on incredibly rapid time scales. That is perhaps the hardest part. We love them, we watch them suffer, and we lose them, one day at a time. Neither of these diseases have a cure, and the treatments can extend life by meager measures but cannot improve conditions nor quality of life.

I am thankful for Dr. Kelly and his family’s willingness to share their path through this time, and to WBUR for giving them a venue to enlighten listeners and hopefully inspire financial support of both research and treatment programs for neurological diseases. I wanted to piggy-back onto the stories of so many listeners and say that there is more than just one community out there that understands, empathizes, and vehemently gives its support to both patients and families that have to follow this all too familiar trajectory.

Christina Birch

Ph.D. Candidate in Biological Engineering, MIT

Eldest daughter of Joanne Birch (1951-2011)
christinambirch at gmail
Marie Calorio

I am so happy to learn of you series. There is such a dire need for greater public awareness and, especially, an increase in research dollars in order to do all we can to find a cure for Alzheimers. Like millions of other, I have my own story of dealing with the disease as it consumed the lives of my grandmothers, mother, and maternal aunt. Now that I am at the age of 55, I can’t help but worry about the odds for myself and siblings. Even beyond my own concern, I want an end to this disease, so my own children and grandchildren will be spared. In a writing course several years ago, I told part of my tale coping with the effects of this disease in the form of a poem. Perhaps other readers may relate:
“Well Intentioned” by Marie Calorio Be sure to keep to routines, change will upset herKeep her in view at all times, wandering is commonWatch out for sundowning, agitation is worse at duskThis and more they told me. Get an attorney schooled in elder law, set up a trustDistribute personal possessions, she has forgotten them alreadyYou’ll need support, it is foolhardy to handle this aloneThis and more they told me. You will be exhaustedYou will feel angerYou will experience griefFor the roles have become reversedThis and more they told me. But they didn’t tell me about the laughterNor the delight in a fleeting remembranceOr the silliness brought about by the absurdLaugh out loud moments like when… You informed the diners on the cruise ship of your concern: “This restaurant just seems way too close to the ocean.”Then turned and said you’d had a really great timeBut could I drive you home now? Or when you sat in the second row of the Colonial TheatreAnd sang along with Richard Chamberlain to lyrics from My Fair LadyOff key—I might add—while calmly resisting my furtive shushesBecause music and song are among the last memories to fade Or the moment when you forever forgot our true connectionAnd my name no longer held meaningYou would smile vacantly and introduce me to family As the nice lady who runs this place. Humorous vignettes of our longest goodbyeSoftened the parting with indelible images Of one who defied clinical portrayal.But they could not have told me this For they never understood the specialness of you.
http://www.laughingmatters.biz Sandra Boris-Berkowitz

Our family lived with Alzheimer’s for 5 years from when our mom of blessed memory was diagnosed.We quickly realized that laughing was a great way to relieve stress for both my mom and the family. How many times could we answer the same questions she asked or watch as her memory was slipping away. She never forgot to laugh and we used this as one of her therapies. LAUGHTER WAS THE BEST MEDICINE for all of us!
In memory of my mom using some laughing yoga techniques I created “Laughing Matters”
sharing joy and laughter with mom and folks who have the disease and their families and friends.
LAUGHING MATTERS
S-HE WHO LAUGHS, LASTS
Sandra Boris-Berkowitz
wwwlaughingmatters.biz
sandy@laughingmatters.biz
Martina

My grande’mère (grandmother) had Alzheimer’s disease, though she was diagnosed in her late 80′s. While I know many people and their families suffer because of this disease, I think perhaps it can also be a blessing in disguise. In her “normal” life my grandmother obsessively worried about aging and dying. She was also madly in love with my grandfather. Due to her mental state, she had no idea my grandfather passed. After asking where he was repeatedly, we’d tell her that he was at work or off fishing and that made her happy. She also seemed to believe she was in her thirties, still traveling and with her family and sisters who had passed. So, up until the end she was happy and pain-free.

I can also say that this is a disease that seems to be tougher on the family than the patient. As blissful as she was in her world, it was particularly tough on my grandfather and this is when we saw him decline from perfect health.
John Bourke

I was the primary care-giver for my mother-in-law. Similarly, James Downey was the primary care-giver for ~his~ mother-in-law. Our caregiving journeys ran concurrently – Georgia, my mother in law, passed away in Dec. of 2007. Martha Sr. – Jim’s mother-in-law – passed away in February of 2008. Jim & I had encountered each other online, at a political blog where each been posting about our experiences as they happened. We gathered up those writings, plus a bunch of emails, blog & journal entries from ourselves and our wives, and compiled “Her Final Year: A Care-Giving Memoir and His First Year: A Journey of Recovery” – a book that covers the caregiving and recovery. You can learn more about our journey & experiences here: http://www.herfinalyear.com and we’d be happy to add to the WBUR Alzheimer’s Disease coverage. My wife Kathi & I live in the Boston area, so could easily participate as call-ins or even come in to answer questions.
Brenda

My once-brilliant husband was diagnosed with early-onset Alzheimer’s Disease. We are certain he had it when he was 50 years old, although we never would’ve dreamed it was anything more than the “nutty professor” syndrome. Now, at the age of 66, he can no longer write or read, has lost all his spatial perception, cannot feed or dress himself, and is becoming physically clumsy and awkward. Yet in the midst of this dark hour of his life, he still loves music. He sings and “performs” any piece of music which he ever knew with the same vigor and accuracy as when he was healthy and disease-free. We are blessed with family and friends who conspire to keep us happy and living as well as possible. I pray daily for good scientists and physicians to find new clues that might deliver us from this living death, and I am most thankful for those who stand by us when we are at both our best and our worst.
http://www.AlzheimersSpeaks.com Lori La Bey

Kudos for doing this series!!!!
I am a daughter whose Mother has struggled with memory loss for 30 years. She is now in her end stages of Alzheimer’s disease and lives in a nursing home. Mom’s journey has been a gift to me and I know speak, train and advocate for Alzheimer’s disease and caregiving. I am tired of organizaions and the media raising awareness using fear. It’s time to give hope and educate people on how to live with the disease since it is not going away anytime soon. I have a resource website, Youtube channel, Blog, and Radio show all called “Alzheimer’s Speaks”. It has become my personal mission to shift Caregiving from crisis to comfort and give voice to the disease and those dealing with it.
Lori La Bey
http://www.AlzheimersSpeaks.com
Anonymous

My husband is 47 and has Alzheimer’s disease. It’s such a cruel and insidious disease to be facing at age 47. Hubs was a loved high school teacher for many years and had to stop teaching last fall due to the progression of the disease. We have two busy teens, age 14 and 16. My sweet husband struggles with writing anything, spelling and typing. He is losing all of his written communication skills, so frustrating for him. The spatial concepts seem to be his weakest and most difficult area……but the man still retains a strong sense of humor.We are also surrounded by caring friends and family who provide such encouragement along this journey! It seems to help the whole family carry on and daily confront this monster called Alzheimer’s. I have a blog where I write about the perils of living with Alzheimer’s so early in life.�
http://samismom22.wordpress.com/
Please continue to create awareness of such a dismal disease where there is little hope for any cure at this point
Maureen M. Chamberlain

My mother died in November, 2007 from Alzheimer’s Disease. The process was slow and devastating, like watching a slow motion horror movie, except it was real. My husband’s sense of humor was what kept me going and now I can remember those comical moments and laugh with my sisters. A few months after her funeral I wrote a poem, channeling my fear, devastation and understanding of this cruel, nondiscriminatory disease. I titled it: Role Reversal
�
Role Reversal
�
The nurturing begins with that first breath of air.
It defies explanation, this unique love affair.
From that moment, it grows with a bond so strong,
Difficult to sever, as the years pass along,
One is the caregiver, beyond and above,
The other receives, dependent on that love.
�
In the eyes of a child, the mother knows all,
Protecting from danger, answering each call,
Reaching up, small arms and a whimsical smile,
Not expecting to wait for even a while.
Constantly given, hugs, kisses and praise,
Teaching, correcting, all through the days.
�
Independence sprouts and the mother yearns,
For the child to go back before the turns
In behavior begin to change and take hold.
Can this be the same child, becoming so bold?
Craving independence, the freedom to be,
An inner voice whispers, “Let me be me!”
�
The tone gains volume, conflicts exist,
Rules are made and children resist.
Admiration remains but love extends
To a larger circle that just never ends.
Pride and ego walk along the curving street.
Some cross the line, feel the rising heat.
�
At the crossroads, those teen years so muddled,
Emotions are raw, parents quite befuddled,
Conversations grow tense. That sweet personality
argues, demands and challenges the reality.
Humor becomes the answer, in order to withstand
the brutal battle, a storm of sand.
�
Embedded in the eyes of the characters involved,
Blanketing the solution, it must be resolved.
When hopeless thoughts of distancing prevail,
The field becomes equitable, justice hails.
Adulthood surfaces, the child assumes the role,
that was once for the mother. It has taken its toll.
�
�
Who but a mother, removed a generation,
Could better understand this revelation?
Mutual respect, friendship and sharing,
Replace the strife, the days of not caring.
Offering judgments, lending support,
Depending on each other, a contract of sort.
�
Grandchildren are born, a new love affair
Encompasses both as this life they share.
Mother and daughter enjoying this phase,
A new generation they both help to raise.
Rescuing one another during difficult trials,
Until comes the time of frequent denials.
�
Aging can lead to forgetfulness and change,
Covering mistakes, attempts to rearrange.
Excuses, retraction, just who is in charge,
Of this mindless condition spreading so large?
Stealing recollection until mother has retreated,
Piece by piece the memories are deleted.
�
The first death of the mother, I loved so well,
Replacing what she was with a half empty shell.
Looking the same but disappearing with time,
Depending on her daughter to make sense of the rhyme,
It’s a fragmented puzzle. It’s an on going slaughter.
The roles have reversed, in charge is the daughter.
�
Happening slowly, then building with speed,
Exploring the options to help you succeed
In finding an answer to what has gone wrong
With this mind, that till now had sung a sweet song.
Occasional moments of truth are recalled,
But mostly the thoughts and the process are stalled.
�
Reaching to me, a memory flashed in,
Pointing, she placed her hands under my chin,
Looking at the face she held closer to see,
Smiling at the reflection she simply said, “Me.”
The mirrorless image faded quickly away.
Our resemblance uncanny, in truth every day.
�
�
Fighting to perform the most natural function,
Impossible to do, life’s road meets a junction.
Only one way is open. It leads down an abyss,
I utter my love, say farewell with a kiss.
She fades away quickly, this time in death.
I’ll fight for a cure with my lasting breath.
�
Tears stream down, it’s farewell to my mother,
Who changed from the person I knew to another.
The end of an era, a generation lost,
Replaced by another at incredible cost,
Daughter, now mother, is frazzled and worn.
The cycle moves on, the remedy yet born.
�
by Maureen M. Chamberlain
Kathleen Knisely

My mother and her mother both died of Alzheimer’s. Both past in their early 70′s, but the death was not the tragedy — we all die, it’s part of being human. It was the toll of what they had to go through in the many years of slow erosion of their abilities and the loss of who they were. I was a caretaker for both, along with my siblings, and while I’m really proud of how we hung together as a family, Alzheimers took a heavy toll on us all.

About 5 years ago, I had myself tested for the APOE gene and learned that I am at higher than normal risk for this disease. I have devised a plan for suicide that I may be able to carry out at an early enough stage should the disease emerge. At age 59, I probably guard more closely than my peers at possible signs that are also typical of normal aging: lost keys, word recall problems, purchasing books that I’ve already read.

The NPR series makes me realize that there has been progress in research, even in the last 5 years. I’ll look into that here, especially the tests for early diagnosis, and whether I may qualify to participate in related research. I am really concerned about how my cohort of baby boomers will impact my children’s generation as we are living longer but with diseases that will create huge burdens on them. There are enough difficulties for their world without adding large numbers of hopeless Alzheimer victims.

My grandmother and my mother were gone years before death took them. Taking care of their living, breathing human remains for years was a terrible thing that I do not want my family to endure.
Sunshine

Anxiety & Panic, 2011 Bipolar, 2009 Rheumatoid Arthritis of 3 children, ages 16 with ADHD and is honors student and twins boy / girl 10. My mother was diagnosed with Dementia, Bipolar, OCD in 2006 but there was many signs way before then, that day my mother looked at me and said I‘m a 38 old mother who has Childhood ADHD and adult know, 2001 promise you will never place me in a nursing home. I will be cremated, Take care of my grandkids, I Love You . To explain a little of our situation. I’m the only child my mother has living, my brother passed in 2000. Shortly after that my mothers signs had gotten worse and she was 65.

My mother moved in with me December 2009 due to unfortunate accident and her Dementia worsening. I knew at that time it was time for her to move in with me. The first week she was with me I saw how far her Dementia had come to. I tried to return to work full-time with the hopes that there was support for my mother to have a care giver so I could return to work and I would provide care when not working. She can not be left alone. I came to find out there is not much help if you are over 65 besides a nursing home. No way I would not want to be there. I have been granted 3 hours a day for a caregiver mon-fri at this time. I have learned various techniques, plus I learned everything I ever wanted to know ( and a lot I never wanted to know) about Dementia and developmental delays to come. She has been doing well in a home state. I have made my home a home for Dementia Love. To make her as comfortable as possible.�
�
This brings me to the reason for my letter. Although we have received some help, I have worked hard to bring costs down by undertaking much of her care and financial myself. And have tried to add a addition on to our home so she is comfortable and knows her surroundings. Visiting Nurses informed me in our last visit that funding is being cut, I shouldn’t hope for more funds anytime soon. SO No Respite Care, time to get away and have a break. I have been hearing this for the last year and half. My mother was hard working women who had 2 jobs and sometime 3-4, was full of sprit and attend meetings regularly to Thank God, and ask for help to get her threw every day. I have found journals my mother wrote in and she was so dedicated to always take care of God and family and the congregation she attended. Our family is my mother, brother and Me. My brother passed in 9/2000 so know it is me and I have found that there is not much help in IL to those with Dementia, It has been hard and I try every day to deal with the struggles of this disease.
TerriBoston

I have lost both of my parents, my aunt & my grandmother to this horrible disease. It is gutwrenching to lose someone who has been such an important part of your life slowly ebb away to the point where they don’t even recognize you near the end. It has been said by several doctors that this disease is similar to Parkinson’s in that after a while you lose the ability to walk, talk or have a normal conversation because of the plaque that has developed in the important part of your brain that processes these functions. As far as early detection goes, what do you do if you find out that you will get the disease. All of the drugs just slow down the deteoration of it, and not cure it at all. With the state of current medicine & research, you would think that they would have found a newer drug or treatment but it is so complex that it will not be cured in my lifetime or for years to come. Just a horrible and always fatal way to end someone’s productive life.
Darezzo

Just before my mother was diagnosed with Alzheimer’s, we gave her a parakeet she named Chip. She poured endless love and nurturing into that bird, talking to him constantly, playing with him, and teaching him tricks. He returned the favor by repeating everything he had heard her say with perfect inflection, and in her loving, solicitous tone. He talked continuously. Other residents flocked to her apartment to hear Chip say, “I love you,” “You’re beautiful and you know it,” “Let’s have something to eat, OK?” “Chip, Chip, Chippeeee,” and so much more. Chip even said “Weee” as he flew, imitating the sound my mother made as she launched him from her finger. As her disease progressed, she became absolutely convinced that Chip was conversing with her, asking her questions, and expressing his needs. His English was so perfect, that this was a compelling illusion. She claimed that Chip was smarter than most people, and said, “I’ll never call anyone a birdbrain again.” She would lay out a smorgasbord of food for him, all over her apartment. He became a true companion for her. As she lay dying, only semi-conscious, after complications of hip surgery, the one thing that made her nod and made her eyes shine, was when we asked if she wanted to listen to a recording of Chip talking to her. When she died, Chip stopped talking. Chip’s unconditional love and responsiveness to my mother was perhaps the greatest source of joy and comfort in her last difficult years. With what other pet could one carry on a heart to heart conversation?
- Mimipockrus
  
  That was so beautiful. My Mother passed away in 2009 and her grandson bought a bird feeder to go outside of her window at the nursing home. She couldn’t talk but she laid there and watched the birds flock to the food and she had a smile on her face. It is amazing the effect animal’s have on people. BP
Yana Lambert

Although
my father had been diagnosed with Alzheimer’s in 2000 and died in 2006, nothing
prepared me for the day in July 2008 when my husband, Joseph, came home from
his job of 14 years and told me about his performance review with his manager:
she advised him that his performance had declined precipitously in the last few
months, and that he needed to seek medical attention to figure out what was
going on. I remember crying a river, while the love of my life tried to
reassure me with “we’ll beat this thing”. We both knew it was Alzheimer’s, even
before our primary care doctor of many years ran every imaginable test to find
anything other than Alzheimer’s. He called one day, saying he hadn’t tested for
Lyme disease – oh, please God, let it be Lyme disease! It wasn’t. The day we
were to see the neurologist, Joseph was placed on administrative leave from his
job until a doctor could certify he was well enough to return to work. That day
would never come. He left the job he loved, years earlier than he would have
otherwise. I remind him frequently of all the good he did in his lifelong career
in public service, going back to 1965 when as a young man he was drafted into
the Army and trained as a preventive medicine specialist before deploying to
Vietnam.

A few
months before the diagnosis, as I was having inklings that something was amiss,
a friend had lent me a copy of “Still Alice” (Lisa Genova). I recommend this
book to anyone facing a diagnosis of Alzheimer’s. One of the things that
sustains me in this journey is that my very dear husband is still very much
himself, “Still Joseph”. While his abilities are diminishing, the essential spirit
of the man is still very much intact. He is still a helper, a giver, a
nurturer. We recently enrolled him in an adult day program, which he has
adjusted to well and looks forward to attending 3 days/week. His service to his
country in Vietnam makes the day program economically feasible for us. He sees
it as “going to work” and his job is to be compassionate to the people
attending the program, show them dignity, and encourage them to smile. On music
days, he dances with the ladies. The 3 days a week he is at the program is good
for us both – time for me to work on my fledgling graphic/web design business, and
time for him to be the very social guy he still is while engaging in healthful
activities in a safe environment with very pleasant and caring support staff. Joseph
is a happy person at heart, and I thank his 3 older sisters for helping raise
him to be the incredibly kind and gentle man that he is.

It is
my intention to keep Joseph at home for the duration. I can’t help but think
that anything else would be a betrayal – especially since I detest the nursing
home environment that I saw up close and personal during my father’s last year.
(I could write another story on this subject; suffice it to say that while
basic food and personal care needs are tended to in a nursing home, the
individual is tragically neglected.) Thank the dear Lord, my stepdaughter has
moved in with us and is an immense help to us on a daily basis. She anticipates
her Dad’s needs before I do sometimes. I am eternally grateful.

My
brother is struggling with stage 4 prostate cancer. Thankfully, his brilliant
oncologist at Beth Israel Deaconess keeps coming up with new treatments that
have kept him relatively healthy for 6 years now. That’s the benefit of all the
well-funded cancer research – especially breast cancer research, since both
diseases are hormonal. Unfortunately, Alzheimer’s is not as sexy as “save the
ta-ta’s”, and so research is “woefully underfunded”, to quote Jim Wessler, head
of the MA/NH Alzheimer’s Association.�
People see Alzheimer’s as a disease of the elderly, “who are on their way
out anyway”. I wonder if research funding would increase if people were aware
that Alzheimer’s strikes people as early as their 30s. My husband was 64 when
he was diagnosed – making it the “early onset” variety of AD – we figure he’d
had it since he was 62, or perhaps earlier.

I am
grateful for the life I have shared with my husband in our nearly 25 years of
marriage. While I will never be ready for him not to be with us, I hope he/we will
be spared the ravages of the advanced/end stage of the disease. Whichever way
it goes, I will be there for him, as I’m sure his daughter will be as well.

Finally,
there is another wonderful book I recommend to anyone caring for a spouse with
Alzheimer’s: originally titled “The Majesty of Your Loving: A Couple’s Journey through
Alzheimer’s” and re-published as “Ten Thousand Joys, Ten Thousand Sorrows” (Olivia Ames
Hoblitzelle), this is an immensely helpful and soulful companion and
guide for this difficult journey.
God bless us, everyone!
Christine Cleary

My sisters and I used to take turns showing up on Sundays at Mom’s nursing home to escort her to church and out to lunch. One particular day, I was dressed in slacks and a sweater with matching earrings and a silk scarf to accent the colors of my clothes. I wore a little eye make-up and lipstick, my hair was shiny and I smelled of scented lotion, habits I inherited from the ever-stylish New Yorker who was my mother. Since it was winter, I wore a long wool coat and gloves, my tote bag efficiently packed with the many small items I needed for both the two-hour journey (each way) and the visit.

While driving, I mentally reviewed my long list of work and family obligations for the next day, and sang along to a collection of music by Andrew Lloyd Webber.

When I arrived, I walked down the corridor to my mother’s room. Her chair was positioned so I would see her white athletic shoes first, then the rest of her came into view. On this cold day she wore a short-sleeved cotton dress in need of laundering. Her white hair was sticky from infrequent washings and too much spray, and very flat in the back. Holding her purse in her lap, she looked like a schoolgirl, sitting perfectly straight and still, her feet parallel, just as the nuns taught her long ago.

Seeing my mother this way, before she noticed my approach, brought to mind the song “Memory,” from the Broadway musical Cats, which happened to be playing as I pulled into the parking lot.

“Memory, all alone in the moonlight
I can smile at the old days
I was beautiful then.
I remember the time I knew what happiness was
Let the memory live again.”
- AnnMarie aka The Pilots Wife
  
  Memory was played at my Mothers memoria (she passed from Mental health problems) My husband has MCI (57 years old). I pray it remains MCI and does not lead into AlZ.
  
  Know that I understand your pain. We are watching my Mother in Law in her final stages of ALZ, she is skin and bone. The doctors said she would pass 3 years ago, but she hasnt yet. What pain for everyone to see her like this. It’s so wrong.
  
  God Bless you Good.
Yoshi

I worked as a paid in-home caregiver
for a patient with Alzheimer’s for 1 1/2 years before he was transferred to
24/7 nursing care. There were two other regular caregivers, each of us
working 2 to 3 days per week on a rotating schedule. I came into the
picture during the middle stage of the disease, and only 3 to 4 hours during
the afternoon to give his main caregiver a break and peace of mind. As
the disease progressed, longer hours of assistance from outside help like me
was needed. Extra evening hours on difficult days and some overnights as
well. Until the longer hours became the normal hours. And the cost
of good care starts adding up quickly. The difficult decision of when the
cost of the minimum care needed to keep a relative with AD at home is “too
much” can tear families apart. It was heart wrenching to see my
patient’s significant other trying to ask him, “Are you happy?” and
“Is this what you want?” without having any real way to know. Heck,
those are tough questions even for someone without dementia.

The hardest nights were those when the
patient insisted he had somewhere to be – someone to meet – something to do
(and you couldn’t tell what, because verbal communication was nonsensical). �
These nights became more frequent during the Fall and Winter when sundowners
syndrome set in. (I was surprised to not see anyone talk about dealing
with sundowners syndrome directly in this comment board). I do care a lot
for the patients I work with, but it’s discouraging when you know that the
effort you put in will “not be remembered” and not noticed at all -
to no fault of the patient themselves, but because of AD. I can’t imagine
the rejection and discouragement family members go through.

The silver lining to the memory loss
can be the strange ways that it can help when negotiating with AD patients. (As
I say this though, I have to remind myself that same silver lining that
can be used to help negotiate “The AD Game” – is also the cause of
much stress and anxiety). For example, in the situation where the patient
insists that he’s late for a meeting, instead of insisting that there is no
meeting, which will only increase the shouting and could then lead into him
throwing things – I learned to agree with him, and help him ‘rush to get
ready.’ It’s amazing how the simple act of agreeing with him, recognized
his need to feel important and gave him enough comfort to forget he was rushing
to a meeting. …very ironically in a sense, my main job as caregiver was to
help him ‘forget’ he was losing his mind.

It was easier for me to cope with the
difficulties that AD patients have when I thought of it as “a game” where
I would become a participant in his reality, as opposed to him not being able
to cope with our world. It’s very
easy to forget how real their world is too, even though it seems they are so
disconnected. One of my pet peeves
during the moderate (and not advanced) stages of the disease was people not
giving an AD patient the respect they deserve. For example, even though they might not be able to
communicate that they understand the conversation happening as you talk about
them with someone else right in front of them- there’s no way to know how much
they really understand and can process.�
It was a very interesting lesson in respecting an AD person’s dignity to
be careful not to talk about them with someone else as if they weren’t there at
all.

* * Sometimes the game was simple
> Now, even though he would forget at that particular moment that he was
late to a meeting (or whatever scenario is being played out during a fleeting
AD experience), it’s unfortunately very likely that 2 minutes later, he’ll
“remember” that he was late for a meeting.. again… and again… a
true test of patience and will power – because no matter how many times I
“help him get ready for the meeting,” he’s experiencing each time as
the first – as if we didn’t just put on his shoes, his hat, his gloves – and
take them all off again 5 times in the last 10 minutes.

* * Sometimes the game was difficult > He insists he’s late for a
meeting in the middle of eating – or when he’s in the shower – and I’ve
tried all the usual steps to help him “forget” there was a meeting,
but he stubbornly won’t forget that he doesn’t need to be at a meeting! Or
it’s the end of my shift, the main caregiver has no energy left, the patient is
wired and wandering when he needs to be in bed winding down.

No matter how easy or hard it was to
play “The AD Game” each day, it felt like I was helping him jump from the “I’m late for a
meeting” broken record to another less issue oriented broken record. Sometimes
it took actually driving somewhere to help the imaginary recollection – that
was possibly based on a real memory of being late for a meeting – to dissipate. Or
sometimes it felt like another version of Chris Mesarch’s experience watching
his mom get ready for “work” when he was actually taking her to a daycare
center (that he posted about on a comment further down on this webpage).

Other ways to resolve the “late meeting”
confusion could be as simple as saying, “The meeting was canceled.” But
after many times of playing the “I’m late for a meeting” game, I
found that ‘diffusing the meeting’ right away (if he believed my story), made
him go back to zoning out and watching tv – something that just made him more
of a vegetable. And though hard to admit sometimes- having the patient
‘zoned out’ would probably be a relief to many unpaid caregivers that are
already running on empty and have other things to take care of in their own
lives. But as I was getting paid to help the patient – I focused on
trying new ways to communicate with him and keep him active by engaging his
reality and keeping his mind moving. At first, I felt guilty as if I had
“tricked” him. I learned though that there was two things that
helped change my perspective in AD negotiations: 1. Seeing the engagement as
“a game” and not “a trick” 2. Seeing the game as a positive
experience for the patient – for example, “rushing to get ready for a
meeting” had the secondary effect of giving the patient exercise walking
around, reaching for his hat, etc.

Sometimes I had asked myself, “Am
I ‘encouraging’ the Alzheimer’s?” or “How far is too far when it
becomes merely lying to someone with AD?” Looking back now, I’d
say that even the times when I had to stretch the truth in huge ways that would
be completely uncalled for in a relationship with someone without AD, I felt
confident that I was making the right choice that was in the best interest of
the patient – except for one. There was one day, that the necessary
made-up stories I had to tell, I will never be able to shake off the guilt for:
When it came time to transition the patient to 24/7 care at a nursing home, it
was just me and him. When we left his house, I told him we were
“just going for a drive” (which we would sometimes do – even
with no destination and just around the block) – even though it was not “just”
a drive. I told him that his main caregiver was on their way – even
though they were not. I told him that, “everything was going to be okay.”
Even though I knew that the sudden shock of so many changes in his environment
in this transition would likely increase the onset of the disease at an
accelerated rate and possibly make him physically ill. It was the last
time I saw this patient. There was some comfort in knowing that this
patient was able to stay in his home environment for a longer time than
many. It’s true that having the
money to pay for high quality service helped – but another very important
factor was the network of friends and support he had, as well as a busy
scheduled daily routine.

I think the easiest analogy that’s
helped me make sense of AD is that it’s the reverse of the growth of memory and
motor-skills of your average toddler. When you tell a toddler, “no,
don’t do that – you could get hurt.” Either by listening – or trial
and error – the toddler learns and remembers how to not get hurt – or at the
very least, begins to understand the consequences when they don’t listen. When
you tell an AD patient the same thing, you not only have to reconcile the fact
that no learning or remembering is taking place, but also that their ability to
think cognitively will, without a doubt, get progressively worse.
When I try to explain AD to someone who’s raised kids, but never
experienced interacting or caring for someone with AD – I tell them that
instead of raising a 5 year old that will become a 6 year old. It’s like
raising a 5 year old that will become a 4 year old, that will become a 3 year
old… and as time goes by and you put more blood, sweat, and tears into nurturing your
loved one – they will only forget more and learn less.
Clsthomas

My brother was diagnosed with early onset Alzheimer’s disease about 6 years ago at the age of 54. He is now unable to feed himself and has lost most of his language skills as well as self-care. But, he still knows us! He responds appropriately to stories of our youth and especially to our 80 year old mother who occasionally cared for him up until he recently needed to enter residential care. An 80-year old mom should not have to watch her son lose his ability to function after seeing him achieve his dream of being a partner in an architectural firm and being a great father to 4 kids. I worry I could have symptoms, too…….I’m 53 now and notice some language difficulties….am I paranoid? Probably!
- Jspremulli
  
  I am in the same situation–a 55 year old sister and 91 year old mother with the disease. My mom is also watching her daughter’s decline, while declining herself. This is a relentless disease for everyone and I understand your paranoia
Csettles_1

I don’t have alzheimers, but would like to astrologically examine this problem, and see whether astrology can help. Anybody interested please contact Charley Settles at csettles_1@verizon.net
Thanks,
Charley Settles
Laurie

WALKING

Early in the morning

Kennebunkport

Awake too early on Columbus Day

Others sleeping, for a holiday treat

I’m going for an explore

The story is I learned to walk

holding onto the hind quarters

of a boxer named Princess

Actually, I learned to walk from you

Maybe somewhere in the attic

Old Super 8 films of my first steps

And now you can no longer walk alone

I learned to walk from you

Through the woods

Across the mountains

On the beach

Hiking, talking, looking, breathing

Seeing the world in the way that you did

The world is filled with golden light

Bright sand, pinecones

Blue sky and clouds, warm sun

Morning star shining, crunch of gravel

Suck of beach clay, sharp cry of gull

A snail in the tide pool, smell of seaweed

A feather, breeze on my cheeks

Wet tears, a skittering chipmunk

Stepping on smooth gray slate that shifts

A white stone

You taught me to walk

To move out into the world and see and feel

How beautiful and amazing it is

To gather the pinecones and shells

Saving the leaves and stones for later

Maybe a wreath, a gift, a place at the table

Saving and sharing the magic of the world

Now, I walk with you in your wheelchair

Through the automatic door

Out the circular drive of the nursing home

I’m not sure what you can see

I’m do know how you used to see

We walk together in a different way

To the raised beds around the bend

Flowers, bees, tomatoes brown from the frost

Blazing maple, yellow oak

Acorns, leaf mold, compost pile

Blanket on your lap

Hat brim protecting your eyes from the sun

I don’t know what you see now

But because of you I know how to see

What is here and more

We walk together in a different way

And when you go you still will walk with me

Because of you I know how to walk
- elle
  
  Thank you.