Your Alzheimer’s Disease Stories

By The WBUR Newsroom
Oct 9, 2011, 3:00 PM
88 Comments

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”

Please follow our community rules when engaging in comment discussion on wbur.org.

Mimipockrus

My husband is eighty-one years old and has had alzheimer’s for seven years. I can’t work because I take care of him 24/7. I need to work but that is not an option. Someone told me that I may be able to get help with finances because I take care of him. Do you know if this is true? My e-mail is mimipockrus@aol.com. Phone…334-272-9244. Thank you, Brenda Pockrus
Taz

I lost my mom to Alzheimer’s in 2009. My dad is now showing signs of the disease. The emotional and physical toll of this disease on both the patient and their loving caregivers is huge. I am running the Boston Marathon for Alzheimer’s this year because I believe we need to start talking about the “A” disease, spread awareness, and fund research. I miss my mom, especially around the holidays, and I worry that I could be heading the same place in the next few decades. If you want to help in honor of a loved on go to http://alz.kintera.org/boston2012/trish
Lschraffa

Well Alzheimer’s is a scary reality. Currently I am a care-giver for my Mother who is 68 years old and has ALS. I can only tell you that my experience of this over the last five months has left me very concerned about how things are moving with our Medicare/Medicaid system, our hospital systems, our insurance providers and the agencies that claim to help with custodial care. End of life issues are not discussed fully in this culture nor are we discussing them within the health care system in this country at present. If what I am experiencing as a 47 year old, professional women attempting to assist my Father in caring for my Mother in our family home is any indication of what is in store for all of us moving toward The Age of Alzheimer’s then I am gravely concerned. My heart goes out to any one with Alzheimer’s or ALS or other such terminal disease and my heart aches for all the care-givers out there in our culture. It is a long and difficult journey.�
Lisa Ann�
http://www.style64.blogspot.com
Debra Tomaszewski

I have been taking care of my Mom that was diagnosed with Alzheimer’s for over10 years. She has had it for 15 years and has been in late stage for the past 5 years. She is very happy in her environment. My Mom is at home and me and my Dad have been primary caretakers for the duration. Sisters and brother help too.

There are several things we do to make things easier for all. I have found that helping to move her every day is very important on many levels. She has not been ambulatory for the last 6 years. So two of us get on either side of her and help her move in a forward direction even if it’s holding her up and moving her little steps at a time. Water therapy has been unbelievable as she enjoys the water very much. When we take her on vacation to a warm place I have a special water vest and water chair and we get her in the water where she is able to freely move her limbs. This helps us when we need to toilet her and move her. We try to help her to continue to pick up food with her hands but she continues the motion even though she misses her mouth. We feed her but encourage her to stay involved. It takes some patience but she is so happy and I know that she understands and feels the love. She likes music and we also like to sing with her.

There are many, many examples I can give you that show she does understand on some level. She may not interpret things most do, but she knows what is going on. She just can’t express it. She does not have a problem hearing , she has Alzheimer’s. She can feel love and responds in a positive way with a smile and a word every now and then. As doctors have wanted to increase her meds we have talked them into decreasing with better results. As people have come in from time to time for physical therapy it amazes me how they come in with thier own pre-determined ideas and narrow mindedness of what an Alzheimer’ patient can or can not do and I have had to help them think in a different way. They always leave amazed. I have to advocate for her all the time because people really don’t understand this.
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My mom needs 7×24 help and we have gone through the gamete to get her the proper care she needs. My dad has made many changes in the house both small and large ones to help us move her with ease. Modifications came slowly as her disease worsend but making small changes made a huge difference for both my Mom and her caregivers. More recently my Dad added an elevator in our home and invested in a wheelchair van. There is nothing he wouldn’t do for his wife of 53 years. She is in a wheelchair but we try to include her in as many activities as we can. She loves it when we take her out for fresh air even if it’s a walk in the wheelchair outside. We are on a 4-times per day schedule where we keep things exactly the same. It is easier for her when there is consistency around her like the same people helping her. She doesn’t fear what will happen next. I find when I explain things to her even though I may think she doesn’t understand, makes her much more comfortable. I talk to her in a normal voice but use words like gentle if she is holding on to tightly. She is now 75 years old but looks about 60. She used to have bad arthritis and high blood pressure but both of these have disappeared.
�
Many, many things I could share. Mostly there is a lot of hope in all of this although it can appear to be devastating to all parties involved. I get more out of spending time with my Mom than just about any accomplishment I have ever had.
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When I go to that place of deep love and commitment to help my mom with Alzheimer’s, I go to a place of joy that I have never experienced before. As tired as I sometimes get from doing this day in and day out, I have learned to pace myself and find when I get to help my Mom, I get more out of it than she does. I am able to slow down and see life a little differently.
�
I do have a full time job and my own family life but have found I can make it work.
�
Debbie
bronia

My mother, widowed, was diagnosed at the age of 63 with “early onset Alzheimer’s”. She probably had developed it earlier but I was living out of town and I believe people tried to cover things up. That was in 1990 and it was just the beginning of social consciousness of this disease. Drugs to slow degeneration were only in the experimental phases and my only sister refused to grant permission. My sister was in complete denial, probably due to shame (in her mind) connected to “senility” or mental problems. I had to obtain 3 diagnoses before she would admit the facts. My mother lived another 6 years at home with a caretaker and then I was forced to move her into a nursing home near me, out of state, where she lived for another 8 years.

She developed the rare complication of seizures and needed monitored medication. In the end, she could no longer swallow food, even applesauce. My sister wanted to have a feeding tube inserted in order to prolong life but I knew my mother would not have wanted that. She had seen a lot of death during the Holocaust. I allowed her to die peacefully with hospice.

Dealing with Alzheimer’s was the most difficult challenge of my life, worsened by my sister’s constant fighting me on every sensible decision I made. She later told me she regretted not having permitted the experimental drug, which later become the first Aricept. In any case, we know that only prolongs the disease.

Now that I am 58 I can’t help wondering if I will also get the disease. I have heard that it may become difficult to get health insurance if one is tested, if the results are positive.

Yana

I’m curious about your statement “we know that only prolongs the disease” — do you mean that Aricept only prolongs the disease? My husband was diagnosed with early-onset in 2008, at age 64 (we figure he had it as early as 2006 or earlier). He’s on Aricept and Namenda and a number of supplements (fish oil, niacinamide, etc.) — we tried taking him off of Aricept and found him much more confused after 4 days so put him back on it. I’d be interested in hearing more of your thoughts/research on this.
Thanks for sharing! God bless us, everyone.
Yana

bronia

Hello Yana,

Unfortunately, there is no cure for Alzheimer’s. Aricept can be helpful but your husband’s doctor should have explained that it cannot cure the disease; it only helps slow the rate of decline, so perhaps prolong was the wrong term to use. I am not a doctor, just the daughter.

“It’s important to remember that while ARICEPT treats the symptoms of Alzheimer’s disease, it is not a cure. All patients will get worse over time, even if they take ARICEPT 23 mg.” That is a quote from their website
http://www.aricept.com

The Alzheimer’s Association is a great resource. Learn all you can.
http://www.alz.org/

Best of luck,
Bronia

Highdee

My 81-year-old mother has suffered from A.D. for several years now and up until two weeks ago my 84-year-old father had cared for her at home. She is now living in a care facility, but the adjustment has been traumatic for her, and the sudden and abrupt separation from my father has taken its toll. Since her admission to the facility she has experienced a serious fall that led to injury and a trip to the hospital. I fear her needs are greater than the facility can manage. However, because my father is currently so worn down from the experience of caring for my mother, this new living arrangement has become his lifeline and he has put his full faith and confidence in the staff at the facility. He is convinced beyond the shadow of a doubt that she will eventually “make the adjustment”, but I am not so sure. My main concern right now is for my mother’s welfare and she is not doing well in this transition. I also fear for my father in the event this new living arrangement does not work out.

bronia

Making these transitions are so difficult, but they do take time. How often can he and you see her there?
Another option might be to bring in a caretaker to do shopping, make meals, do the laundry and bathe her.
A big factor is her cognitive ability. Does she recognize you and your father?

Highdee

My father visits every day – I have been there every other day. Usually our visits are independent of one another, but occasionally we end up there together. We have a family conference scheduled soon at the care facility and hope to carefully examine how the staff there thinks things are going. I acknowledge that the adjustment period can take some time, but it is extremely difficult to see my poor mother suffer and struggle in the meantime. Her verbal skills are severely compromised, so it is very difficult to communicate with her. However, her emotional IQ is still as high as ever – she remains an intelligent and sentient human being with deep feelings. Despite her limited ability to verbalize, she has exerted herself repeatedly to express suicidal thoughts and wishes to me since her admission to the care facility. She seems to be truly miserable much of the time. Her cognitive abilities are virtually nonexistent and she requires help with everything. She really is utterly helpless and extremely needy. Her familial recognition is minimal – she knows we are important people in her life, but is unable to recognize any of us in the true sense. The hospice nurse told my father that she has never seen another Alzheimer’s patient so deeply affected by the disease who is not fully bedridden. My mother, on the other hand, is still fully ambulatory and her core physical health is good. Her case is challenging on many levels.

Clsthomas

I read the comments by so many people and wonder if my brother’s case is so unique. He is 60 and has had this diseasse for at least 6 years. He needed nursing care for 24 hours within the last few months and is in a nursing care facility. He can no longer express a thought and needs full time care because of incontinence and limited ability to feed himself. He is so young and every time I forget something I wonder….
Beverly

My husband (60 years old) was diagnosed with a “Visual Variant” of Alzheimers last July. It is a rare form of AD affecting his visual processing. It took nearly a year to get a diagnosis because his first sympton was a change in eyesight….or so we thought. His eyes are healthy, but his brain is not. From what I’ve researched and read, the memory usually stays intact until the disease has progressed to the later stages, but I’ve noticed some problems with his memory already. I’ve ready that only about 5% of the people who have AD have the visual variant (also known as Benson’s Syndrome). It’s very difficult not knowing what to expect…I read everything I can, and I’m very happy to see this website and these postings.
Matka1926

As a retired nurse who spent her last years of working, in a nursing home, where I cared for alzheimers patients ,as well as other dementia problems, I found it painful to watch the downhill ride for these patients. My own brother-in-law ended up with Alzheimers and I watched my sister’s last years trying to cope with him ,trying to prevent a nursing home life for him,and having to surrender him to ending his life in a nursing home when she could no longer care for him at home. In the process her health went downhill and she had no choice but to admit him. She spent her last time on earth suffering from a guilt that she could not overcome. She died before he did, alone and feeling a guilt that she didn’t deserve. There is no easy answer. We all have to do whatever our conscience tells us to do,even if it kills us first.

bronia

My mother had Alzheimer’s for 14 years, 8 of which were spent in a nursing home. We were lucky in the sense that we had enough money to hire “private duty” caretakers who came in for 5 hours a day to feed her and take her outside for fresh air. They played her the music she loved that I brought her…it made her smile.
I was there once a week. She couldn’t talk but I could tell she enjoyed visits.�
Re: guilt
It is not our fault that our loved ones are stricken with this disease. All we can do is be as conscientious as possible with their care. We are the ones who care enough, who take the time to speak to the doctor. These institutions have supervisors and social workers who need family members to be present, even by telephone, to have someone to discuss each case with. That is the best we can do. We should not feel guilty.
The ones who should feel guilty are those who avoid visiting at all or who only come once a year. In my mind, that is not O.K. I saw that a lot in the nursing home. The more of us who frequent these “homes”, the better the conditions will be. It is only when staff knows that a watchful eye is present that all of their duties are performed well and in the proper spirit.
May we all find the strength to deal with these challenges.
Highdee

Thank you for your honest response and also to “bronia” for aptly reminding family members of the importance of having eyes and ears open during visits with our loved ones and being willing to do the advocacy work on their behalf. It is sometimes difficult and uncomfortable, but very necessary, even in the best institutions.

day-girl

I am a worker at Adult Medical Day Care center that is located in Merrillville, IN. We have several adults with several disabilities and have had the opportunity to work with several adults with Alzheimer’s. I am very happy to work where I work because at the end of the day I feel like I do a job that I love.
In my experience of 3+ years working at the daycare, I have found that the thing that is really hard for caregivers is finding a place where they feel is safe. I have found that there is several people who do not know where to turn when looking for a place for there loved ones. I just want to share that there is a number for Indiana Residence to call for different places you can see which is best for your loved ones. 219-794-1841. There are Day Cares, Home Health agency, respite care services, Assistant living and so much more out there. Please don’t feel like you are alone in caring for your loved ones. May God bless all the caregivers out there.
KenWilliams75

s much as I cherish the past years that we spent together I would not wish that on anyone. Also two of my granddaughters immediately came to my rescue as well as the hospice people for the last ten days of her life, I don’t think I could have managed without them as well as several very lovely friends who should up. Gess I don”t understand the fcebook onnetion. Oh well it was a nice try anyway.
Jearry

My wife Jeannie was diognosed with early onset after having a P E T scan on 2/14/11
she is now 52 years old . Has been refused social security and I dont have enough time
on the job to retire.My plan looking foward is to keep her at home for the duration.
From what I have learned so far it is not realistic to keep her out of a facility during
the final months. The devistating news of her desease came after several months of
frustration. She was asked to leave her job due to poor performance. I have truely
been blessed to have such a beautiful person to be married to for the last 22 years.
We have 2 sons 20 yrs. and 19 yrs., oldest went off to the Navy yesterday . Its hard
to look forward to the future. I try to keep things light at home and saver every happy
moment. I do have some experience with the disease. My mom passed from alz. at
the age of 83 on 11/3/09 a perfect angel would discribe her best.
I am trying to keep a positive approach to the days ahead and feel I,m doing a good
job so far.
Your prayers and thoughts are most definately appreciated
�
Thank You

Jerry

Beverly

Jearry,

I’m so sorry to hear about your wife. I wanted to write you because my husband was also diagnosed with Early Onset Alzheimers. We filed for SS disability and he was granted it. “Early Onset Alzheimers” is one of the diseases they have under the Compassionate Allowances which enables your loved one to be granted SS disability earlier. I had been keeping a timeline of all events (Joe was fired from his job as a truck driver). I printed out the disability application, filled it out, took copies of his records, and visited our local social security office. I urge you to do this and not give up…I didn’t have a lawyer, but I did keep good records. My thoughts are with you this morning.
M Foster50

Jerry,
I was reciently diagnosed with alzheimers and was also denied social security twice please don’t give up. It was only when I applied for a hearing that the decisions were overturned.

Monica Paige

Thank you so much for this opportunity to share my story here. I Lost my father, artist Alvin Paige, to Alzheimer’s in October 2010. During his short battle I photographed him daily…here is my You Tube video and commentary about this awful disease. http://youtu.be/8VYUROaKTFo

Yana Lambert

Thanks so much for sharing your story of such a tragedy so poignantly and beautifully — you captured your father emotionally, and his emotional nature seems to be present nearly to the end. My husband was diagnosed in 2008, at age 64 — he’d probably been showing signs of it since 2005, and has now progressed into what neurologists call “severe” though not yet advanced… Anyway, your photo video helps me to see/feel what someone with Alzheimer’s might be experiencing, and that’s a good thing to remember when I’m stressing over my own stress. My father died with Alzheimer’s in 2006, and having seen the sub-human care he “received” at a reputable Welch Healthcare nursing home, it is my sincere intention to keep my husband at home for the duration. God only knows how, but between the VA (he’s a Vietnam vet) and the Alzheimer’s Association and the incredible generosity of my stepdaughter, I am committed to doing my best to keep him at home and loved. God bless us, everyone.

Monica P

Dear Yana,

Thank you so much for taking time to view the video. I continue to be shocked at the early diagnosis of Alzheimer’s. At 64, your husband is just so young! I am sorry to hear about your father. I can’t imagine how you must have felt to get the news about your husband. I do understand why you’d want to keep your husband at home. We both fully understand how the enormous cost for care seems to get you absolutely nothing in return. We are not alone, and I am grateful that you have taken time to reach out to me. We need a cure. Peace and respect…

Beverly Klima

Please to those suffering from EARLY ONSET ALZHEIMERS who have not signed up for disability…check out the website below. My husband was allowed disability within 2 weeks after filing the papers. I kept a timeline and requested physican records after each diagnostic test was performed. ….and I went to our local office to file. It hurts me to read that people are being denied….my husband is 60.

http://www.socialsecurity.gov/compassionateallowances/