ApoE4.Info

Tincup wrote:While caring and organizing care for my mother, people would comment that it must be difficult as I'm an only child - no one to share the burden with. I would respond that having others to share the burden with can either be really good, or really bad depending upon how they act.

I would concur that everyone with AD/dementia is different. I know that, for myself, I have no desire to put anyone through the caregiving routine, if I can help it. Even if life might be OK for me. I still don't know how I will handle avoiding it at this time. My primary strategy now is to try and extend my health span, of course no guarantees. However I'm not adverse to n=1 experiments that others are mostly unwilling to try.

I have to agree that each family is different in how they handle the stress of care giving. Some are really good about spreading the duties and some end up having "the one" in charge of everything without help. I ended up being "the one" in my family which led to the severing of all relations with my brother (who happens to be the only remaining member of my immediate family). It was a long, tough road but I have a lot of really great memories of time spent with Mom going out for drives, milkshakes, Swedish pancakes and lots and lots of laughter (even during those really tough angry times). I ran into a woman that I went to high school with the other day whose mother is now in dementia care. It was fun to tell stories about those goofy times we had and how I got to experience my mother as more child like. The mother that I knew had been replaced by a different person but getting to know that person was a rich experience in itself. My mother's journey included an almost 10 year stay in a Memory Care facility and she went through every stage known until she was pretty much an infant at the end. I'm sure that it was her worst nightmare but I'm grateful that I was able to walk with her every step of the way.

CarrieS wrote: I ended up being "the one" in my family which led to the severing of all relations with my brother ...It was a long, tough road but I have a lot of really great memories of time spent with Mom going out for drives, milkshakes, Swedish pancakes and lots and lots of laughter (even during those really tough angry times)... It was fun to tell stories about those goofy times we had and how I got to experience my mother as more child like. The mother that I knew had been replaced by a different person but getting to know that person was a rich experience in itself. ...I'm grateful that I was able to walk with her every step of the way.

Carrie,
My heartfelt thanks for sharing your experience of "really great memories". I don't know if your mom lived in Minnesota, but I remember serving Swedish pancakes with lingonberry dressing to lots of seniors citizens WAYYYY back in H.S. at a Perkins in Minnesota.
My own mother's preference was for Eggs Benedict at Perkins followed by chocolate almond custard. None of it on the ApoE 4-recommended diet, a factor which neither of us knew about. And since she was happy, and lived to 86 with minimal advancement of her dementia, and spent all but the last 10 weeks at home, she might have discovered her own secret N=1 success formula!
Like you also, I had to sever ties with a sister, although I periodically have to step in to avert her propensity for self-induced disaster. Sounds like you came to terms with the need for this, as did I. So glad you chose to share your knowledge with others on this site!
Hugs.

NF52 wrote:

CarrieS wrote: I don't know if your mom lived in Minnesota, but I remember serving Swedish pancakes with lingonberry dressing to lots of seniors citizens WAYYYY back in H.S. at a Perkins in Minnesota.

Yes, my mother was 100% Norwegian and loved her lingonberries and strawberries. Her family moved to Minnesota from Norway before moving to Seattle.

Small world, CarrieS and NF52...my Norwegian ancestors also had Minnesota roots. Norway to Minnesota as well. Some did move on to Yakima, Washington. Love those lingonberries...but I could never do lutefiske. My Mother swears that eating lutefiske once a year has kept her going. We'll see how I fare without it )

Take care and thanks for sharing your heartfelt stories and great memories.

NF52, what a wonderful spirit you mom possessed. Thanks to you and Nords for sharing your loved family members stories with us.

Thank you for sharing your story, i’m sorry for your loss. Your article was well said, I really like your post and agree with you on who is the one who is in pain with AD. It seems it is often the loved ones who are suffering for whatever reason. It may be reluctance or denial to accept the truth of our parents or loved ones not being who they used to be. I personally think there is value in life and that life is precious at any age or stage despite disease, illness or suffering. My family, which is been historically not very close, is closer than ever now because of our caregiving efforts and need to talk about our parents dementias. Both of my parents have dementia, one A.D. and the other a mixed type of dementia. Both of them are in the middle stages and can eat, toilet and converse with family members and others. They recognize their family members and have joy in these relationships. They are not who they used to be but they’re not suffering, they are not in pain, & they have joy, like the kind you spoke of because the pressures of life are not there any longer. Although I did not accept these changes easily when it became obvious Dad needed help (lots of it), I have learned to accept these situations that I have no control. I am growing personally & becoming less rigid & controlling. So, these trials have molded me into a more flexible person with a better ability to accept people & situations in which I have no control. Thanks Dad, thanks Mom. You are still teaching me about life. Like my sister says, “Alzheimer’s has been the best teacher” & as ugly as this disease is, there is goodness in the midst.

S Bean,

Thanks for sharing your wise thoughts and moving experiences. You are an inspiration.

Great to have you here.

S Bean wrote:T Thanks Dad, thanks Mom. You are still teaching me about life. Like my sister says, “Alzheimer’s has been the best teacher” & as ugly as this disease is, there is goodness in the midst.

Welcome S Bean!
Wow your post is so powerful, it really spoke to me. I love that you can see the positives of caring for your parents now. There is a beauty in providing such essential loving care to loved ones. It somehow brings clarity to our crazy world. I have lost both of my parents. I was blessed to be able to care for my Mom in her final months after a long, long struggle with Alzheimer's. Somehow I set down the burdens of the rest of my life and simplified it for a time. I told those around me that we welcomed their visits and elicited my family support. I taught my daughters and husband what they needed to know to care for Nana and that there was no need for perfection here. Nana had utmost patience in the end and there was plenty of time for levity and laughter. There was music and flowers in the house always. The pace was slow and meals lingered. Drapes were wide open and sun shined in like a blessing from God. His presence was always palpable. Now years later those gifts linger. Two daughters have entered the medical field and a kindness permeates the entire family. Loss can be a great teacher.
Blessings to you and your family,
Mary Ann

Washington Post article about a 94-year-old who fasted to hasten death. Her daughter made a short film of the experience: https://wapo.st/2PJl2nW

Another factor to be considered in Alzheimer's care is the cost. When my husband and I are no longer able to work (I'm the older at 70), we will have only social security checks and some equity in our mortgaged home. We have one child who is wonderful and like so many young people lives month to month.

I want to enjoy life as long as I can. I'm fairly easygoing in terms of my needs (other than supplements and diet!). But I want to make sure that I don't make the lives of my loved ones miserable and drive them into bankruptcy towards the end. I was caregiver for my out-of-state brother for 6 years while he died of cirrhosis and hepatic encephalopathy. I don't want to put my husband or daughter through that.

As the boomers age, our demographic bulge can easily break the system. I'm hoping reality will encourage legislation that makes chosen exit strategies easier to arrange.