Alzheimer's Disease

[Guest GingerSnap]

I was talking to a neighbor on the phone last week and she had to take another call which was coming in about some tests her husband had. It turns out that he has been diagnosed as being in the early stage of Alzheimer's Disease. I was a little surprised that she was so open since usually, a lot of people try to keep it quiet. She told me some about what he had already experienced. I think it is great that they can talk openly about this diagnosis and hope others can become comfortable discussing it since now I know that if this man is maybe in trouble or says something that may seem "off" that I can work with it rather than just kind of recoil and withdraw from him. Almost immediately they started making plans to relocate and downsize their home which they had planned to do but moved up the date. She told me that this is especially hard because her mother had Alzheimer's and she knows what to expect. I just think that by sharing rather than shrinking away and pretending nothing is wrong that we can all benefit. This is one of those couples that truly love and care for one another so that is an undeniable edge.

[JaiJai]

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Edited October 7, 2011 by JaiJai

[Guest GingerSnap]

JaiJai: It sounds like you have lived through a very bad experience with someone with this disease. My family has not ever had anyone with it, neither mom's or dad's. My husband's family does have it in their medical history, big time and our son with Down syndrome is at high risk of developing it at an early age, within even the next 10 years. It is something I think about. How will I deal with it? Yes, I am aware that too many people remain undiagnosed until it is too late to medicate and take other precautions to at least slow the progress and this applies to more than Alzheimer's. A suicide pact? You got to know I would frown on that one. I will care for my loved ones until I cannot do it anymore despite the conditions they experience. It has been really tough with our son with Down syndrome and one day, I heard from the adoption agency that my son's birthmother wanted information about him and in the letter, the birthmother wanted us to know that she prayed for us everyday. He was only 2 years old at the time and I said to my husband "That has to be the only way that we could have done this". I am sure she has prayed to God much harder as the years have went by and so have I because only by the grace of God have I been able to handle what is served up by both our son and the system that is supposed to support him. Yeah, I know that "God" is not a popular word, theory, whatever................... I truly think that people need to be informed and made to understand what is going to happen with the progression of Alzheimer's and too many people just try to pretend it isn't so. Many times "ignorance" is not ultimately "bliss". I am sorry for the experience that you had but I am sure that many others have had the same experience. Education and planning would go a long way to lightening the burden.

[Guest ASchwartz]

JaiJai,

I have to agree with Ginger on this one. First, the one who fulfills their part of the suicide pact could go to prison for murder. Second, research is getting closer and closer to a cure and prevention for this dread disease. Even now, there are new medications that slow dementia down quite a bit. Think about it. What if a suicide pact is fulfilled and the next day a medication that reverses dementia comes out? Then, too, aren't we trying to play God by doing something like that?

What do you think?

Allan

[JaiJai]

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Edited October 7, 2011 by JaiJai

[Solstice]

Jai, I'm sorry to hear about your mother. My dad is headed in the same direction, and it's miserable. And I understand your point about the "suicide pact." I've always hoped that, if I reach that point, someone will have my back and tell me what's going on so that I can choose how to live out the rest of my life (or not). My only fear is that I won't have anyone willing to do that, but that's another issue.

[Guest GingerSnap]

JaiJai: I am sorry about your mother also. You don't hear a lot about early on-set which is what my husband's grandmother had and also I saw his uncle appear to be following that same path. I had a friend whose father was in a nursing home by his early 60's. My friend had tried very hard to care for him at home but there became a point where she could not. She found a good facility where she could visit him often. I still believe that we cannot judge the quality of life for any other human being and that we, within ourselves, can just give up and die pretty much without any outside stimulus when we are determined for that to happen. Realize that many people believe that babies with Down syndrome should be aborted and I don't know which it is more of, they wouldn't want to live if they were a person with Down syndrome or they see that person as a burden to themselves or the system? With Alzheimer's though, it is looking like there are things with diet, exercise, etc. that you can do to help keep it at bay so I don't think it is a given. Saw this show years ago about this sect of nuns and some were living to be over 100 years old and although their brains had shown Alzheimer's, they had never developed symptoms. It showed they had busy lives and that they spent a lot of time reading. The research is very interesting. I don't think I have any friends that I could make a suicide pact with and of course, I have no regrets about that. I hope that you get some sort of support or counseling about the disease that your mother has.

[JaiJai]

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Edited October 7, 2011 by JaiJai

[IrmaJean]

I'm sorry about your mom, Jai. I agree there are no simple answers...Your mom is fortunate to have you in her life.

There is medicaid here, but they also wouldn't hesitate to take away your home and assets to pay the medical bills for nursing home care. I'm no expert on the laws, though. It's a sad situation for everyone involved.

Take care, Jai.

[Guest GingerSnap]

We have Medicare and Medicaid. Medicaid would be for those that were not as financially set. I am not sure how it is handled. I know that we, even in a community of 8,000 people, have one nursing home that has a special ward and across the state line, they have a large State facility exclusively for patients with Alzheimer's. Myself and my husband both have access to the VA Healthcare system as do many others and they have facilities in some locations that have an emphasis on Alzheimer's so there are options here. I met a couple of people from Canada when we were traveling and they clued us in on your healthcare system and the pitfalls. The fastest growing population in our area is people over 80 years old and cats! I will not end up an 80 year old woman with a bunch of cats! Will not, will not, will not! Hopefully, they will come up with some answers and sadly, here, they are cutting so many programs. How will the few continue to carry many, many more? In the US though, they are starting to look at cutting the fat, getting people off public assistance, going after fraud involved with governmental benefits, etc. and this is going to make a difference. Our state just put in a different political party and they are serious and started on day one to free up money to go where it is needed.

[Leo1954]

Haven't been on here in along time my mother has Alzheimers she is now on her last stage I had to have a feeding tube inserted because she was literally starving to death she had quit swallowing usually this is the last stage. I know she is going but, I wil be damned if she is going to starve to death. When the person is ready ONLY that person can do that and will go on their own. I'm not ashamed at all to speak about my mother having this dreaded disease. My mother never did drugs, drank, or smoked in her life. She just turned 80 nobody knows what is going on with their thinling process she can hear she also will scream when somebody talks to her and she follows with her eyes. Any of us can get this and I don't give a damn who or what you do anybody is at risk. I am a perfect candidate. But I'm not going to sit on my ass and worry about it. If it happens what am I suppose to do about it not a damn thing. There is a big Christian Person with a University down here he has been all over the new everywhere because he made a remark if your spouse has Alzheimers get a divorce because you are married to the walking dead. That is just a good ole boy asshole I hope one of his loved ones get it and make the same remark to him. It probably sounds like I'm a bitter b---- but HEY I AM!!!!!!!!!!!!!!!!!!!

[JaiJai]

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Edited October 7, 2011 by JaiJai

[Guest GingerSnap]

Leo1954: "Christian" person? You mean a stupid, selfish and non-Godly person said that, well, I'm not surprised. I totally agree on not letting someone starve to death and that when she is ready, she'll go to the other side where she will be renewed. I guessing that someone with a lot of money gave it to the "Christian" minister and wanted to dump their spouse so the statement was "bought". Like most other diseases we have now, many people have the possibility of getting it but ultimately, it is our exposure to all the toxins that man has put in our environment. Our immune systems are just overwhelmed. Your mother is lucky to have you in her life.

JaiJai: You sound like a good and compassionate daughter.

[Leo1954]

JaiJai

That is how my mom was but for some reason she later turned violent. I kept telling them something else is going on but, of course since they were Drs. [yeah OK!] they knew everything I demanded a CT scan and lo & behold she also had a stroke [DUH] when they told me I smiled and said forgot to tell you idiots that I worked as a Trauma nurse for along time [not now] and I also know my mother and she wouldn't act the way she did just because she was bored. I also went along with what you were saying about your mom as time went on they do regress back to when they were growing up she called me her mom. It hurts so bad because I also feel like a mom to my mom. But I won't let her go on her own starving or being alone. I just want her to be comfortable and have her dignity which I sometimes worry about I still worry bad what is going on in there [ nursing home] when I am not there because sadly I have had to raise hell. Finally administration got involved when I had to threaten. Now haha kissing my ass which I thoroughly enjoy it's my mom she is paying for them to take care of her not their pockets!!!!!!!!!!!!!

[Guest ASchwartz]

Hi Leo,

I am pleased to see you back with us but I am sad to hear about your mom and that entire terrible situation.

Even without a stroke, alzheimer's patients can get violent. Strokes can look a lot like alzheimer's and there is something called multi infarct dementia, micro strokes that cause dementia.

But, regardless of the names, definitions, symptoms, terms, and etc, it is outrageous that they had that attitude. Unbelieveable and shocking.

Allan

[IrmaJean]

That's a beautiful and heartfelt passage.

Love giver, yes.

Thank you for sharing that with us.