Tell me your thoughts on: When a Parent KNOWS they have Alzheimer

aceyDecember 16, 2007

OK here goes:

My Mom just diagnosed after comprehensive visit with memory clinic. Early to early Moderate.

Was on Namenda, now Aricept added with goal to titrate up to 10 mg, so far she tolerates the 5 mg.

Mom knows she has it. She is living at the Independent wing of a senior community and loves it. She's been there since August (some of you know we just sold her condo, if you read the buying and selling forum). She even discusses it from time to time with the other seniors there, and they all say, "honey, none of us remember anybody's names!"

She still walks, bathes, takes care of 2 cats, dresses properly, toilets, takes the center's bus to coumadin clinic BY HERSELF, and no inappropriate behavior so far... but she forgets names, and the appointments better be on her calendar!

I was a tad surprised, though, when the doctor told me she basically scored a big fat ZERO on MOST but not all the tests.

The doc also told me that from time of diagnosis until death is an average of 7 years, and Mom is 78. She said 7 years because most people (like Mom) have co-morbid diseases, like Mom has atrial fibrillation of the heart (hence the coumadin), controlled hypertension and cholesterol, and glaucoma (OK that won't kill her, but her vision is impaired to a degree).

She is happy, does her art, has good appetite, enjoys meeting the friends.

Questions for you all with early Alzheimer's parents:

Do they seem better than what their doctors led you to believe, at the time of diagnosis?

Her doc told me that most likely, she'll come down with a pneumonia some year in the future, and that will be the nail in her coffin. She also told me to consider having a DNR in place at the senior community in which she if she doesn't wake up in the AM, and they call the medics, if she is dead, they won't revive her. I have not done that yet....she is still too with it, IMO. Although I suspect if I did resuscitate her, she'd probably have a further insult and brain damage, and require long term care of a more diligent nature, so I can appreciate the doctor's advice.

Do your folks talk about it to you? Do they say to you "geeze, I feel like a jerk for not remembering that, of course we just talked about what Christmas presents I want to give my that you reminded me of what we decided".

Look, I know it won't get better. I've already told all the siblings and grandkids that she is as good as she is EVER going to be, so do stuff with her now.

I'm looking for discussion with those of you who are caring for parents who know they aren't mentally all there anymore.

FWIW, she does have all her papers, wills, POA, health care surrogate in order, thank goodness.

OK, Let's talk!


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He knows but I don't know if he remembers it from day to day. I'm so thankful he can do most things himself: shower, shave, dress, feed himself. But he's starting to forget where he keeps the flashlight... Didn't he already get the mail? He does not do much money other than hand you a twenty to pay for something. He can count change. He can do most of the things that are "rote". But he cannot keep up a conversation altho he listens. He often has a far away look and my outgoing and curious dad is gone. So maybe he's a few steps ahead of your mom.

I went thru the testing with him and it was fascinating to see him explain the work he retired from--he was an engineer. But he could not put the hands on a clock to show 2:30. Give him a list of 3 words, he could not remember them 3 min. later.

So he's on Exelon to hold him at this stage, if possible, but it won't bring him back.

Be thankful that your mama is able to get out and about on her own a little; it's a blessing that she can be with friends and have conversations that are near normal.

Dad's friends have his presence but, unless they talk about WWII or the old company, he doesn't contribute much.

These old folks are all different, I guess, in how they show their Alzheimers. He was diagnosed last spring and I don't see much of a change, but Mom does. She's the one that has to remind him what time to go down for lunch and all that. He's very pokey at dressing etc. too.

    Bookmark   December 17, 2007 at 9:20PM
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Since your Mother is still in the independent wing of the facility, DNRs, living wills, end of life directives are probably not on the front burner - yet. The clock's ticking though and when the time comes for her to require assisted living or ultimately long term care, having documents in place is so terribly important.

My Mother was diagnosed with Alzheimers in 2002 (although we knew it was coming on several years before that) and she died this last September just shy of 92 years of age. And it was pneumonia which was, mercifully, extremely quick and distress free for her. She didn't have any other medical issues, but just didn't have the strength to fight the pneumonia. Back when my folks were doing their wills and revocable living trusts, etc. they each had very comprehensive living wills: DNR was specified, no heroic measures, no feeding tubes, etc. - comfort care only, even if that meant drugs that might shorten life.

The best thing to do would be to try and discuss this with your Mother; it's hard, but many times they really do know how they want to go, but just can't bring themselves to put it in a document. If your Mother knows how important her wishes are to you - so you know you're doing the right thing for her - she might think it's a good idea. The DNR is simply a boilerplate form that needs her doctor's signature and can be kept with her other important papers then given to the facility in charge of her care.

If there are no directives, there's no telling how far a facility would go to keep a person alive - and oftentimes it is not doing them a favor.

I was the live-in caregiver for my Mother from 2001 until she finally did have to go into long term care in October of 2006. Alzheimer's is so different from person to person. It's a cruel disease and is many times harder on the caregivers than it is on the person with it. Mom never did lose language, ability to toilet, bathe (although that got difficult and risky as time passed), fix a simple meal, paint, do crossword puzzles, etc. There was so much old memory hardwired into her brain. But life stopped somewhere back in 1940 and everything after that was pretty much a blank. She was on Reminyl since being diagnosed and did well on that, but despite drugs, the disease progresses. They seem to reach plateaus, then sink, level off for a while, then sink again. And you're right, if your Mom's good now, it might be the best she will ever be again.

Do whatever you can to get her papers in order; it will give you peace of mind - and the time will come when your Mom can no longer make decisions.

    Bookmark   December 22, 2007 at 2:55AM
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One of the biggest problems that we had was that she was too independent or proud to admit that things weren't going well. This is bad because it limits what anyone can do to help. Without additional help, their condition becomes critical sooner.

She was always able to carry on a conversation that would lead someone to think she was alright. She would say all the polite things like, it's nice weather, do you think it will rain, how is your family, etc, but I don't think she knew I was her daughter, just that my face was familiar. She never asked a word about her grandchildren or any other person.

She never asked about my father, or my step-father. The closest she ever got to asking about another person was when she asked me "who was that man that used to come see me?" I pretended I had forgotten his name, and she soon forgot that she asked.

Before she went into the NH, she would make a list of things she had to do that day, then she would forget that she had made a list, and do it all over again. The house could have been papered with lists. Stacks and stacks of lists....everywhere. I don't think she remembered what the lists were for. She was very healthy, until she fell and broke her hip. Pneumonia quickly set in after the surgery. I had told her surgeon that if that happened, I wanted him to just let her go. She was a real problem in the nursing home because of her stubborn, independent streak. She sometimes required both physical and medication restraint.

The doctor called me at home that night to thank me for making such a decision for him. He said it was very hard when the family refused to just let go and demanded that he "save" the loved one.

Just take it one day at a time. What works this week, may not work the next week. She will come and go and be completly different from any other patient. Be prepared to go with the flow. It makes it easier for everyone.

    Bookmark   December 22, 2007 at 9:28AM
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I am learning a lot reading these forums. Duluth: Thankfully, we already have everything in place, except for the DNR. Mom has her updated will, living will, I am her financial POA, and we JUST did the Health care surrogate (also me)last week at her attorney's. When she sold her condo a few weeks ago, after her attorney called to advise us that the closing papers were in order, I told him that her memory doc advised a healthcare surrogate at this time, so boom, it is all in place. The only thing left is a DNR, which I will handle later.

Incidentally, her memory doc did tell me that pneumonia is the usual end, as I mentioned above, and most clinicians say is really is not painful or an awful way to go. Hopefully Mom has several good years left!

She has graduated to Aricept 10mg now, seems to be tolerating it so far,in addition to Namenda.

Any other stories or comments?

    Bookmark   December 22, 2007 at 11:35AM
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Agnes, your first paragraph just left me in chills. It describes my mother perfectly. She has always been so stubbornly independent. She doesn't want anyone helping her, even if she really needs additional help.

At her assisted living facility, she won't let the caregivers help her with dressing, laundry, or bathing. Yet she complains to me that no one does anything for her. She fell again last week because she insists on shuffling around her apartment without her walker.

She gets belligerent if anyone tells her what to do to keep herself safe. This unwillingness to accept her limitations and to accept help has been going on for years. But now that her mind is going, it's really scary. I really think her own stubbornness is going to be the end of her. But that's my mom and we've kind of made peace with the situation.

    Bookmark   December 22, 2007 at 3:06PM
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My husband had Alzheimer's for 5 years. At first he knew he had the disease and tried to kill himself. After awhile he didn't know anything except that I was the one who loved him. After 4 years I had to put him in a home, I requested comfort care only and a DNR. I didn't want him on any drugs except to control his combativeness. My Mom is 95 and has dementia but is able to live at home by herself. Even though she can still work in her yard, she is fed up with living. When she was in the hospital last year, she was so upset because they saved her life. My sister forced her to go, then it took 4 nurses to get her in the bed, she wanted to go home. Very sad. .

    Bookmark   December 23, 2007 at 9:02PM
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Since she is early to moderate, she still has time to make tremendous improvement. Get her on a brain-longevity program. Cut out fat from the diet, especially saturated fat which is a death-knell for the brain. At least 4,000mg of lecithin, 250mg of Ginko Biloba, Green drinks and Phosphatydl Serine. Read the book "Brain Longevity". The program worked for my family. Good luck

    Bookmark   December 28, 2007 at 9:05PM
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xminion, thanks for the response. i have a copy of Brain Longevity right next to me as we speak, and am reading it. I've got her to a memory disorder clinic, and she is now on Namenda and Aricept. As far as the nutritionals goes, I've got some detective work to do there. She has to take Coumadin for her atrial fib., so she has to mimimize green leafy vegetables, watch vitamin K substances, she'd drink more wine if left to her own devices! She has glaucoma badly, and many glaucoma drops mix with so much.

Anyhow, you are ultimately right...perhaps I'll look around for a nutritionist or naturalist to draw into the mix, for I certainly believe in that!

    Bookmark   December 29, 2007 at 7:19AM
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I applaud your decision in mixing in other solutions than what the medical establishment says. True, you have a bit more of a challenge to deal with because of her other meds., but she sounds like a lovely, intelligent,aware woman who would be still be motivated to improve functioning of her most vital organ.

Yes, Google, then make an appointment with a nutritionist to determine which vitamins/herbs are not going to mix with her meds. Heck, if you're anywhere near Tucson, AZ make an appointment with the MD/author of the book!!! He knows....

Best of luck

    Bookmark   December 29, 2007 at 10:59AM
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My dad was diagnosed in 2002 and died five years later (he was diagnosed three weeks after my mother lost a long battle with cancer, which seemed to speed things up a bit). Everyone deals with it differently and shows the disease in a unique way. Daddy usually knew what was going on, but lost the vocabulary to talk about it. He quickly lost the ability to write. And, while there was certainly a bit of gradual decline, he would typically get suddenly much worse.

They often seem better than they are because they've learned to adjust for the parts of their minds that aren't functioning well. Daddy did talk about it some. It was often the first thing he'd tell (or try to tell) someone he'd just met to explain his increasing odd and confused speech. He got quite frustrated sometimes, and other times he seemed at peace with the whole thing.

Good luck with this.

    Bookmark   January 2, 2008 at 11:35PM
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My grandmother (age 88 coming up 1/13) hasn't been formally diagnosed, but I'm sure she's going into the early/mid stages of some ilk. We're doing all the scenarios already mentioned -- independence (she was widowed in 1964), knows she's having trouble but insists she doesn't need help and often pushes it away, gets mad/frustrated when suggestions/direction are given to her, she can't remember the piece of mail we discussed five mins ago, no longer cooks except the most simple things. She can sign her name but otherwise can hardly write, or read any more (note: she has only a 3rd-grade education). Yesterday she had two pieces of bacon (uncooked) out on the cabinet, 1/4 slice of bread and a kolache (she's moderately diabetic, shouldn't have that, but the church lady brought some for Christmas). I left the food there. A few mins later she came and put the bacon (in a piece of plastic wrap) and kolache (unwrapped) in the 'fridge. The bread was still on the cabinet. I suggested she put it away, so she began to wrap it again in a piece of paper napkin. I suggested she put it in a plastic bag (she has a stash of them in a drawer), she began to get upset but did it. Then I suggested that she wrap the unwrapped kolache in the 'fridge so it doesn't dry out. Again, she began to do it in a paper napkin. Still upset when I wanted her to do it in a plastic ziplock bag as well, but she did it and put it in the freezer.

    Bookmark   January 3, 2008 at 3:49PM
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My mom was diagnosed with Alzheimers in January of 99 and passed away in June of 2004. There were many times in the beginning that she did not seem sick at all. I think that sometimes when they have to, they can really appear to be okay in the beginning. Your mom seems like she has a long way to go from what you are describing.
Mom did talk about her inability to remember things and many times laughed at herself and also would make remarks like, "Oh, I can't even talk anymore" or "Oh yeah, I already asked you that", etc. etc. She knew and it was very frustrating for her.
I believe that it was the medicines that she was taking that ultimately killed her. She had gotten to the point where she had a lot of anxiety and was given Zyprexa to calm her. She died suddenly from I think, either a stroke or brain aneuysm. In a way, it was a blessing because she was getting to the point where it wouldn't be long and she would be bedridden. She was still able to walk and was not incontinent when she died, though. Thank God for that.
I wish you the best. It is a long, hard journey with hard decisions along the way and a true test of patience.

    Bookmark   January 4, 2008 at 8:23PM
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As a psychologist, I have studied dementia (caused by Alzheimer's disease and other diseases), and have worked in the field professionally as a pharmaceutical researcher studying new drugs for its treatment. I also know about it personally because my mother had dementia for several years before she died.

In the early stages of the illness, individuals with dementia still have enough insight into their condition that they are aware that something is wrong; for instance, they know they don't remember things well any more (or not at all), or that their brains don't work right. But during these early stages of the illness, the degree of impairment in everyday activities may be slight. This depends on what some doctors call the individual's "cognitive reserve." High functioning persons, persons with a higher eduction or a history of working at demanding jobs are believed to be able to adapt to their declining abilities during the early stages of the illness. But eventually, as their illness worsens, they need more and more help in everyday things.

The other thing to consider is that some dementia may be caused or complicated by mini-strokes, sometimes call transient ischemic attacks. During these attacks, the brain is deprived of the oxygen it needs to function normally, and persons having these attacks may experience a sudden loss in function like forgetting the name of a spouse, not recognizing the home they have lived in for many years, etc. But these suddenly appearing symptoms, as disturbing as they are, are sometimes temporary, and the person makes a recovery, partial or complete, in a few hours or a day to two. These episodes can happen in addition to the longer term decline that is part of the dementia illness, and can worsen the person's outome in years to come. To control these events, it is important to make sure the person's blood pressure and cholesterol are in the normal range or to control them with medication. Good diet, like the one recomended by the American Heart Association, and regular exercise may slow the worsening of the illness. But in the end, the disease outcome is grim.

    Bookmark   March 11, 2008 at 10:15AM
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MIL was diagnosed 2 years ago. She is still living on her own and driving. BIL has power of attorney and lives far away. BIL is fighting DH & me because we know she needs more care - we don't think she is safe. Somedays she is just fine, albeit horribly repetitive. Other days she is just plain mean. She seems to have a talent for finding the most hurtful thing she could say. She becomes very combative and hateful.

Anyone else have problems with

    Bookmark   April 7, 2008 at 5:58PM
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Just found this forum - have been obsessing at the kitchen forum in preparation for new kitchen and decided to see what else is here.

My father has just been diagnosed with Alzheimers at age 74. He is very aware that he has it and has extreme anxiety - waking up at night in a panic over their finances because they don't have a lot of money and my mother knows nothing! He is still himself and functions quite well, just has word finding difficulties and short term memory problem. They do not live near any of my siblings or myself and don't want to because we all live in cold climates (in winter). They are attempting to sell their home now so they can move into a retirement community with an Alzheimer's unit. Unfortunately the housing market is not the greatest.

We siblings are all trying to take turns visiting them. Right now their biggest problems are anxiety and depression with dealing with the news. My mother has always had poor memory skills and has always joked that she has Alzheimers. It is very ironic that my father has developed it. We siblings are all willing to do whatever we need to to help out but it is still so hard to see them struggling with the news. Suddenly, we're the grownups...

    Bookmark   May 20, 2008 at 2:49PM
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Cambro5....Drop everything and get the papers in order pronto! Durable power; medical power; living will; will. All of these must be executed while the people are still "competent"....that word used in its legal context. If/when they ever should become incompetent, accomplishing these tasks becomes cumbersome and expensive.

Nobody knows what the future holds but best to be at least this prepared. If/when you need them and don't have them, you'll have much regret. Keep originals in a safe-box. Make multiple copies and keep a set where you have instant access plus an extra couple of sets to provide to others if/when something bad happens. You don't want to have to wrestle with officials or medical pros for disclosure or control at a critical time.

    Bookmark   May 21, 2008 at 7:47PM
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Thanks for the advice asolo. That is all being taken care of, my parents have assigned my brother their executor and have been doing all that with him. I think my father's worry over finances has to do with the fact that he has not invested wisely over the years and his pension will be cut drastically if he dies first, leaving my mother with not much. They recently saw a lawyer and I think they got a lot of reassurance from him. We keep reminding him that they raised four stable children who will be there for her, but it is just hard on him. Hopefully they will be able to sell their house despite the market and move into the retirement community-place they are waiting for (what do you call those places with the step ups from indepenendent, to assisted living, to nursing home???).

    Bookmark   May 22, 2008 at 8:39AM
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They are called Continum Care Communities. I would suggest that you help them look for ones that are non-profit. I say this because if they are for profit and the money runs out they will be looking for other places to move. Most non-profit communities will keep the people there, regardless of finaial situation. I found all this out over the past several months..........if they go in to a long term care nursing home then the home will spend down the assets and once gone they will put them on Medicaid. However assisted living is different so my advice would be to look in to it for them and get all in line so you understand the ins and outs.

    Bookmark   May 22, 2008 at 9:18AM
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Thanks! I didn't know there were non-profit! There's a lot to learn I guess! I'll look into it!

    Bookmark   May 22, 2008 at 10:01AM
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Just figured out the community my parents are on the list for is a non-profit community - thanks!

    Bookmark   May 22, 2008 at 11:50AM
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Ask lots of questions, but make sure you ask "What happens when the money runs out." YOu need to be sure they work like the ones around here do!

Also, if you have POA and they have IRA's make sure you understand that just because you have POA does not mean you can take money out for them. YOu need to be on each IRA as POA and......that still does not mean you can take money out. These investment companies and all others for that matter have mountains of forms that need signed every time you want to do something. And by signed I mean by the parent, not the POA. I have been going round and round with my parents investment companies as mom really can't sign her name and my dad can, but with difficulty due to being legally blind.

Yes dear, you have a lot to learn and it is best to start now, before you are under super pressure.

Oh and don't forget the IRS, you can't just sign for them, there is a, surprise!The banks will take the POA but boy oh boy, the rest is just a hassle......but it can be done.

    Bookmark   May 22, 2008 at 4:31PM
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FWIW...I've been signing mom's brokerage and IRS docs for her under POA for more than six years. I furnished each with notarized copies of POA the first time and that was it.

Have the rules changed?

    Bookmark   May 22, 2008 at 5:13PM
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With the "privacy laws" lots has changed! And, lets not forget the ungrateful idiots that have wiped out their parents savings with POA's. That is what has caused so many changes. I am getting through all this and am very lucky my dad can still sign. Most of the money is in his name so I can get it out to pay mom's nursing home bills, but it has been a challenge! I now have it all worked out so should not have too many more hassles. Our investment guy told me today that I am not the only one complaining about the mountain of paperwork that needs to be done to take care of parents! LOL!

Some thing our attorney adviced me to do also was to change the primary benificiary on my dad's IRA's. That way if, heaven forbid, some thing happens to him the remainder of the money will not go to the nursing home for my mom's care. Makes sense and that way I will have a few pennies to take care of my brother and his special wants.

Oh, that is some thing else, we also have it set up in the will that when my parents are gone my brothers share will go in to a trust for him, therefore keeping it out of the hands of the nursing home.

    Bookmark   May 22, 2008 at 5:23PM
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Lindajewell....interesting couple of posts from you. Apparently things have changed a great deal! Thanks for the heads-up. Compared with what you've described my tasks, accomplished years earlier, were a breeze.

    Bookmark   May 22, 2008 at 6:41PM
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Be careful of the Exelon, my husband had bleeding ulcers on it. Later a care home insisted on giving it to him to try and calm him and I told them he would bleed. They ignored me and his nose bled 2 days in a row. My pharmacists told me Alzheimer's patients are just guinea pigs for meds. All of the Alzheimer's meds are experimental.

About documents, if the life your loved one is living has no quality, you need a comfort care paper to stop giving life saving meds. The living will does not cover meds. Make sure your POA has the power to work after the death to pay bills, etc. My attorney did that for my POA.

    Bookmark   May 22, 2008 at 10:52PM
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Living wills don't always cover. Medical POA in addition always does.

What is "comfort care paper"?

POA's expire at death. After death, executor, or "personal representative" named in will takes over.

    Bookmark   May 22, 2008 at 10:59PM
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