suicidal feelings

webdeb

I was diagnosis with MCI in 2017 and ALZ in 2019. I am in the trial for the Eli Lilly drug and it did help slow the progression of the disease. if you get the drug first instead of a placebo you eventually have to switch go to the placebo. no one knows if I am on the drug or the placebo. I am pretty sure I started with the real drug and now was switched to the placebo as I am really deteriorating mentally quickly. i can not talk very well anymore and my short term memory is terrible. i never can find my car keys, sunglasses even if they are on my head and do not remember the year or even the day it is.
i know this disease is a terrible death and I am thinking suicide would be so much better than this slow death and the terrible burden on my family.
anyone else feel that way? there still is no cure.

Iris L.

Welcome, Deb. I am sorry to learn that you are declining quickly. Have you discussed your decline with the clinical trial doctors? They may have some suggestions for you.

New drugs are coming along with the goal of prolonging the early stages. But, from what I read, the prolongation is a statistical prolongation of a group of patients. How much a particular drug may prolong the early stage is unknown, and probably will be unknown, except in hindsight. For example, I believe my early stage was prolonged for ten years solely by Best Practices, but I figured that out only after the ten years had passed. Keep in mind that I was determined by a PET scan not to have excess amyloid in my brain and thus no Alzheimer's Disease. My diagnosis remains cognitive impairment not otherwise specified.

You did not mention if you had been prescribed Aicept or Exelon patch and Namenda. I myself have been using Exelon patch and Namenda/memantine since 2009 with good results. Having said that, I still deal with losing things and decreased speech from my working life. I had a professional career. Those medications and Best Practices help, but I never expected them to be a cure for what ails me. My cognition is impaired by a multitude of medical causes, for one of which I take antihypertensive medication.

When I first joined this board, suicide was a topic. I personally chose against that, so I never followed those conversations much. I did learn that PWDs (persons with dementia) are usually not included in patient populations for assisted suicide.

People hear of all of the terrible complications of Alzheimer's. But a PWD may not experience all of the terrible complications. Many of the complications may be managed by careful care. Knowledge and planning are keys. This is what I have learned from all of the members here, both patients and caregivers alike. I can tell you more about what I have learned, if you like.

In the meantime, think about this. Some PWDs have benefited from taking an antidepressant medication. Another big help is support from peers. I fell into a deep depression lasting nine months. What got me through my depression was communicating with the members on these boards, among a few other things. I learned acceptance and how to PLAN. The members here know quite a lot, more than most professionals in the outside world, snd they are willing to share their experiences and support. I encourage you to find your support in your locality, and also to look to the members here for support.

There is also available highly qualified professional support available for free from your local chapter of the Alzheimer's Association. You can call the Helpline at 1-800-272-3900 and ask to speak to a Care Consultant, who is a social worker skilled on care for the PWD. You can receive support, guidance and referral to local resources.

Please reach out and get help for yourself, Deb! You are worth it! Don't hesitate! If you are feeling really bad, call your local Suicide Hotline. You can call 211 in your locality and ask for the number. Don't hesitate! Please post back and let us know how you are doing.

Iris

klucey

Hi Deb,

I’m glad you reached out to this group and told us exactly what you’re feeling. I’m sorry you are declining. Hopefully, things will slow down and give you a break. I hope this online community can give you some comfort. Iris provided very good advice, as she always does. I too think about suicide for the reasons you say. It is scary to witness the progression of the disease in yourself. I worry about the future (especially because I live alone and family is not close by). I’m struggling with brain fog these days. I keep hoping my thinking will become clear, but it doesn’t happen. I’m also struggling with paperwork and just trying to keep my apartment neat. I find doing the following things helps me feel less aware of symptoms. Connecting with my grown children, therapy and medication for depression, staying in touch with friends, tv, walking, reading the newspaper. Do you journal? You obviously can write. That would be outlet for you.

If you’re not being treated for depression, perhaps that would be a good step. Depression and anxiety can make az symptoms worse. for me, Weekly therapy is helpful; I can unload my thoughts and feelings about this terrible mess. Re talking—to avoid the pressure of talking I ask questions. People love to talk and I enjoy, though at times envy, hearing about their lives. Have you talked to your family and friends about what you are feeling? Your worries about burdening them? I recently took care of my mom who has advanced dementia. I enjoyed taking care of her. Just another way to express my love for her. While it was a lot of work, It wasn’t a burden.

If you decide to do therapy, ask your dr if she knows a therapist with experience counseling people with Alzheimer’s. Another good resource is the Alzheimer’s Association 24/7 help line that Iris mentioned. I talked to a social worker there and it really helped. Their number is 800-272-3900. There is a new suicide hotline 988.

I hope this helps. Stay in touch and be kind to yourself.

Kate

klucey

Hi Deb,

Im checking in to see how you are doing

Kate

Jo C.

Hello Dear Deb; I have been thinking of you and so hoping you are continuing to come here to read and even to talk with the other Members.

I wonder if you have a dementia specialist of your own outside the drug trial? This would be very important; you deserve the individual attention to your personal needs, especially as it relates to medication outside of the trial.

NOTE: The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900. If you call, state it is urgent and you need to speak to a Care Consultant. There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia. They are wonderful listeners, of good support and can often assist us in our problem solving and especially with our feelings. it is a great place to be able to go and freely vent one's feelings.

NOTE: Since you mention that you have thought of suicide; please be aware of the National Suicide Hotline at 988. This is an important number to have and good to write it down and keep it where you can see it.

Deb; each person with dementia is different from the next; no two are identical and not all have the same problem issues. In this light, I would like to share with you the experience of my step-father's journey with Alzheimer's Disease.

He had a life span of 20 years after diagnosis. He had short term memory issues, BUT: he continued to function at a very high level for those 20 years and was contented and happy in his day to day life. While he had ongoing short term memory loss issues, he continued to know who he was, who we all were, was able to bathe and dress himself, eat with the family at the table, he was continent and able to use the bathroom; he loved to sit in his recliner and watch his favorite TV programs and also enjoyed visiting with family and with others - he especially enjoyed talking about the past. He stayed in that realm until his death 20 years later from a different cause.

While that is one person's journey; it is simply a sharing that not everyone has the same problems and losses and there can be continued hope; please do engage with whatever support - community, medical, family, friends, etc. that are possible in your life. If there are support groups nearby, that would also be good connection; some Members find positive connections at their place of worship. It is also good to come here and talk to people who sincerely care and who can share with you and do keep the number of the Alzheimer's Assn. Helpline.

With warmest of thoughts being sent your way,

J.

Jo C.

Hello WebDeb; I am dropping by to let you know you are being thought about. If you see this, please drop in and let us know how you are, we truly do care.

J.

GEH

Hi Deb sending you a big virtual hug. You are not alone. I am sorry you are going thru this. Please don't hurt yourself. Please reach out. Maybe start with a call to 988. About 30 years ago I made a similar decision but reached out and found help and carried on. It was not easy to make that decision to choose life but I don't regret it. It's not easy and probably everything feels so overwhelming ... but take it one second at a time, then one minute, one hour, one day, one week, one month ...

Praying for you.❤️

Ge