Would like your suggestions

luvstocraftFebruary 12, 2011

My husband was recently diagnosed as having Fronto-temporal dementia/alzheimers. I had spent over a year trying to convince our regular doctor that something was wrong--finally after writing a letter to him questioning possible medication interaction and suggesting that he speak to our grown son since he obviously was not taking me seriously--he referred us to a Neurologist.

His MRI showed that he had been having multiple mini strokes and that there was shrinkage of his brain greater than the normal amount for someone his age. All of his symptoms are behavioral. He is now on a blood thinner to help stop the mini strokes and the Neurologist has just started him on Namenda, so I am hoping this may be helpful.

I have not yet joined a support group but plan to do so soon since I realize I will need to hear how others cope and to find resources to help me continue to care for him at home as the disease progresses.

My question is this. He seems to go on "food fads" and all are unhealthy. First it was a daily hot dog from Sam's Club for several months--then he switched to a Jack in the Box grilled breakfast sandwich. Now he is wanting steak anywhere from once to three times per day! He is a type II diabetic and also takes medications for blood pressure and chloresterol (sp). None of these foods have been good for him,but he will not listen to me or his doctor--he just says "it tastes good and I want it."

He still has a driver's license and he is unconcerned about the amount of money he is spending each day on the steaks. (I'm the one worried about both his health and the money) Have any of you had similar experiences and do you have suggestions on how to change these food "habits"?

I have mixed emotions between wanting to be a good caregiver and convince him to eat healthy--and yet thinking that this may be his last independent choices and letting him do what he wants. (Like hiding my head in the sand, huh?) LOL

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You need to start assuming the role of "parent" to his child. Are you the main cook in the family? Then tell him, no, you just had steak for lunch. Try to maintain your own authority in the family setting. It's not about nutrition, not at all. He can eat anything he wants. But you have to retain your own sanity.

It's not a nutritional issue at this stage, it's the disease progressing a lot faster. I'd think hard about 1) getting into an Alzheimer support group ASAP, 2) getting his drivers license away (the HARDEST thing ever), and 3) getting your head into the idea that you are no longer equals, but you have to assume the role of parent in your household.

Forget healthy. No one wants to live to be 95 eating spinach and have a healthy body and not a healthy mind. (Ask me about my 95 yr old mother sometime.) If he wants a banana split for breakfast, so what? But you have your own household budget and time and menu constraints, so stop the steaks. Lie. Yes, lie. Tell him that the store was all out of steak.

I suspect that you are fast approaching the need to take away his driving privileges, for his sake. Please talk to your son, and show him this website, if that will help.

Let us know how things are. You know that you have friends here, and we'll do our best to hold hands across the internet!

    Bookmark   February 12, 2011 at 11:02PM
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You need to stop and take a good look at the situation.'

OK, so he isn't interested in a healthy diet......do you really want to extend his life? How much would a healthy diet extend it? One month, one year, five years?

The main thing is to make life easier for both you and him. I agree, forget about keeping him healthy. good health at this point is inmaterial. Very unlikely to happen. Make it easy on yourself, it will probably be easier on him too.

    Bookmark   February 12, 2011 at 11:39PM
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I appreciate both of your responses and suggestions.

It's not that I am fixing the steaks, it's that he is driving to a restaurant to buy them. I know this because he eats part of it and then brings the rest home to eat later.

I have tried cooking what were some of his favorite foods, and he eats those then still thinks he needs to go get a steak!

My concern is that the high levels of his blood sugar could cause kidney failure and then he would have to go on dialysis. Or the high cholesterol of the red meat could cause a stroke or heart attack--he already has a stent in an artery near his heart and has had angioplasty on the veins in his leg. Should I ignore these concerns and just try to let him enjoy his indulgences while he is able?

His doctor is very upset that he will not get his blood sugar back under control and has suggested putting him on insulin. I asked him how he thought I would get him to take his insulin shots when he won't even take the Byetta shot he's supposed to take now. I am trying to find a new doctor who has more experience with senior care and hopefully some experience with dementia/alsheimers.

My husband just turned 64. They seem to think that he is two years into the dementia. So do you think the food fads are signs of the disease progressing? I agree that I have to assume more of a parental role, but his behavior changes have made him difficult to deal with--behavior seems like that of a rebellious twelve year old most times!

Luckily for me, he always wakes up happy, doesn't think anything is wrong with him, and he is never aggressive or hostile with me. He does have issues with impulse control, and we know the driving may soon have to be stopped. I think we are dreading that part most of all--but have held off to see if the new medication will help or at least slow the progression of the disease.

Yes, I will go ahead and find a support group to attend this next week, I realize that will be very helpful.

I've read the dementia posts on this forum and some other forums as well, and I've been doing allot of reading about the disease on various sites also. I'm assuming he is in the early stages since neither his speech or balance have been affected so far. Am I wrong in assuming that? I read that the disease can be from two to ten years, but some have survived up to seventeen years, so I really don't know what to expect.

Do I ask for another MRI at some point in the future to see if the mini strokes are still happening? Or is that useless?

I would be interested in hearing your stories too. Are they already posted on this forum?

I appreciate and will seriously consider any information you can share with me.

    Bookmark   February 13, 2011 at 12:31AM
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When Alzheimer's is diagnosed before the age of 65, it's usually referred to as "early onset". One tends to think Alzheimers is Alzheimers, but the internet does have information trying to give some separation between early (which is a rare form) and late (which is the common one) onsets.

I've only been familiar with early onset in two cases. Years ago, I had an adopted cousin who was diagnosed at age 50 - long before much at all was known about Alzheimer's. He died at age 52; his doctors at the Mayo said he simply forgot how to breathe. It was dumbfounding, to say the least! And my neighbor's wife who was diagnosed, also at age 50, but died two years ago at age 65. So the swings are pretty wide.

My Mother first started exhibiting (really undeniably exhibiting) when she was approaching her mid 80's - memory loss, constant repitition, confusion over familiar things, etc. We started her out on Galantamine then later added Namenda. Namenda was hopeful, but she shortly developed the side effect head ache. We knew that was real since she never had an ache or pain in her life; we dropped that not wanting her to suffer for reasons she was incapable of understanding.

The drugs are the best line of defense, but they don't cure. The symptoms can be masked or minimized, although the disease is still progressing under the mask. My Mother never lost language or balance until the very end when she was closing in on age 91. Music seems to have a therapeutic quality.

The food fads may go away when the Namenda kicks in; might lose interest in food altogether and his attention will be focused on something else. I don't know what to say about not getting some professional guidance about the diabetes, cholesterol, triglyceride problems though - seems that some steps should be taken to keep those reasonable under control if at all possible. I doubt I'd go through routine MRIs unless a doctor (and a doctor that has an understanding of what you're both facing) deems it necessary.

I would definitely seek out a good support group - if it's a good group you'll get helpful resource information as well as a good shoulder to lean/cry on. Many times they're sanctioned by the Alzheimer's Association.

    Bookmark   February 13, 2011 at 4:05PM
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Duluth, thank you for your response. Sounds like your Mom was blessed to have you there to help her throughout those 11 years of her Alzheimer's for sure.

Sometimes, it's hard for me to believe anything is wrong with my DH, but then he will do something that once again confirms it! It just mostly seems that he doesn't want to be bothered by anything that requires more than a couple of easy steps. And he really seems to follow a routine of things he thinks he has to do. I've been taking over doing more and more for him, like filling his seven day pill box and making sure he takes them. Sometimes he gets "stubborn" and just won't do anything I ask of him. I'm learning to just walk away and try again later. Right now, the bath/shaving/haircut thing is becoming an issue. I've decided to get some of the wet wipes and encourage him to use those at least. His beard grows fast, and I'd just as soon that he keep the beard because it looks better than when he shaves and then lets it grow out again! I'm trying to get him to the barber for a haircut and to trim/tidy the beard a bit but he is refusing. Might try having my son take him.

It is hard not being "equal" now, but I'm gradually taking on the things he normally took care of. Thank goodness for a wonderful mechanic, a handyman neighbor and other understanding friends and neighbors!

This week he will take the Namenda twice a day. The first week, he only took it in the morning. Biggest thing I noticed was that he was sleeping better and not getting up three or four times a night. He also has seemed more alert and interested--but that might just be from being better rested! ;o)

Better get off here and check out some possible new doctors and get the numbers of some support groups too.

Thanks for all the help.

    Bookmark   February 14, 2011 at 1:50PM
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For what it's worth; if he already has kidney problems it's a good idea NOT to have any tests that involve dye or contrast... The contrast is hard on the kidneys and can cause more problems.


    Bookmark   February 16, 2011 at 4:38AM
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There's only one thing that we can be sure of.....that's the fact that no one, not even the doctors, will know what and when things will happen. He may never have another mini-stoke. An MRI will only tell you what has already happened. It can't help him.

Start taking care of his medication. He is liable to forget or decide to take a whole weeks worth at once. You just don't know. It's a dreadful disease.

Do you have a Power of Attorney for him? If not, get one. And it's a good idea to have another member of the family to have one for you, in case you have an accident or get sick, and can't manage for him for a while.

    Bookmark   February 17, 2011 at 11:35PM
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Rita, no he doesn't have kidney problems yet--but I will keep your advice in mind.

Agnes, I did take care of our living trust, will, medical and other POA. Our son is named in case needed. Thank you for the reminder though.

I found us a new doctor who specializes in senior care. He pretty much told me what you gals said--quit worrying about the nutrition and let him have what he enjoys--won't make allot of difference in the long run.

I'll chat more later, but need to get off here for now.


    Bookmark   February 19, 2011 at 12:17AM
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I've read lots of the older posts on this forum, especially the ones regarding caregiving. My thanks to all of you who have shared your experience and suggestions.

Thought you might like a quick update on how my DH is doing. The neurologist started him on Namenda, didn't see any changes the first couple of weeks, but do think I'm seeing a few things now. For one thing, yesterday was my birthday and he actually drove to the store and got me roses and a card! Totally unexpected on my part! He still has problems with "impulse control" and it's amazing what he "figures out" when he wants to do something--and yet so many other things that elude him now.

I know I am so blessed to have this extra time with him and will do my best to enjoy that and take care of him to the best of my ability for as long as I can.

Switched to a senior care doctor and he has taken so much pressure/guilt off me and informed me that it won't help if I get upset when DH is uncooperative. He just tells me we will work it out by adjusting medications or finding other ways.

Caregiver group closest to me only meets once a month, so I'm waiting to go there this month. I'm continuing to read lots on the Internet, and I'm continuing to try to organize, declutter, etc. so I feel that I have some control over "something".

I know it is going to be a long hard road ahead of us, but I'm not alone and will continue to seek advice and empathy--and pray continually for the strength and knowledge and compassion needed.

Thanks for all your helpful words of advice and sharing of your knowledge.


    Bookmark   March 4, 2011 at 12:37PM
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luvstocraft...I just now seen your post and I am so sorry you and your husband are going through this ordeal. I used to post on the Holiday forum a few yrs ago. My husband had Alzheimer's and his eventually affected his motor skills. I would certainly hide his car keys at this point. With my husband, he started asking me to drive,(this was in the very early stages) and his changes were so subtle, that I didn't realize just how bad his memory was getting. My husband's first indication was in 2006 and he passed away Aug. 2010.
Take care.... Mary

    Bookmark   March 4, 2011 at 7:09PM
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Forgot to say, please feel free to email if you have any questions. I know how hard it is and there is so much more than just the obvious care of them.


    Bookmark   March 4, 2011 at 7:22PM
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Mary, of course I remember you, you were one of my favorite members. Kathleen and I have wondered about you several times.

I'm so sorry about your husband. I will email you to catch up on things.


    Bookmark   March 6, 2011 at 12:58AM
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Let him eat what he wants. Sushipup said it right on,

"Forget healthy. No one wants to live to be 95 eating spinach and have a healthy body and not a healthy mind."

My doc told me to let my Mom eat what she wants and she was in her 70's. I myself eat pizza a couple time a week and a hamburger and fries once a week. If I die, I die happy. Aging is hard enough why make it worse by outliving your memory.

    Bookmark   April 4, 2011 at 9:11PM
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Thanks for the advice Vala 55. I have just backed off and let him eat what he wants. He has slowed down a bit on the steaks, but has added sugary/choc peanuts.

As for the Namenda, I can't really say if it is helping. He has seemed a bit more alert since starting it. We are sort of in a "holding" pattern right now and things have smoothed out a bit. I'm taking advantage of the times he is "clear" and spending that time with him. But those times seem to come and go quickly. He seems to feel most secure in the bedroom listening to music. Any place we go, including our son's, he only will stay about 15 minutes then wants to go home.

Now if I could just find the "magic words" that would get him to shower and shave! He insists that he "doesn't need to because he doesn't do anything to get dirty". I've told him my nose disagrees with him! LOL He's a big guy, so I need his "cooperation".

Never know what each day will bring, but just dealing with it as best I can and trying to keep him safe and comfortable.


    Bookmark   April 6, 2011 at 11:44AM
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