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  • my dad's stages, and symptoms are different

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    Old 12-12-2007, 05:29 PM   #1
    karate_mom
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    my dad's stages, and symptoms are different

    Hi,

    I am new to this message board. I am not new to Alzheimers. It's funny that when I tell people, even women who are nurses, know nothing about Alzheimers. Especially how to pronounce it. Anyway, my dad is in his 3rd year, and no sooner did he find out he had the disease, my stepmother left him. He had prostate cancer right after he was told he had Alzheimers. She had the nerve to say, "Oh, I want to stick it out until he gets through the prostate cancer". Oh gee, thanks. Then the battle began. She thought that because he was sick he wouldn't fight for what was his. Sooo, we are still in the process of getting what she tried to keep that wasn't just hers. (her 401K) And of course she took half his pension. That's all fine and dandy, but why wait till someone is diagnosed with Alheimers to leave.

    Well, what I wanted to say was that his symptoms to me seem weird. He remembers situations or events. He just gets alot of the details wrong. He still lives on his own, but this is the first time EVER that he has lived alone. That in itself is scary. He also repeats himself over and over and over again. I usually don't remind him, because I did that when it first started happening 3 years ago and he would just get mad and yell at me. So now I just say oh yea, I remember you telling me that. The next thing he does, is he makes up stories about him when he was young, being in gangs and actually having shoot outs and things like that with other gangs. And I tell him, dad you have to stop telling people that you did that. He discloses information that is obviously very untrue, but if the wrong person hears it, they may believe him and call the police. (seriously!) So I don't know what to do. Another issue I thought about recently is the lack of respect people have when dealing (some people) with this disease. This woman in the office where my dad lives. It's a Senior center, 55 and older, she always says, "Your dad is so confused, he always asks me where, so and so lives, and you know and he knows I can't give out that information. He always repeats himself". Well no duh!!! She knows he has Alzheimers! How ignorant! It just makes me sooo mad. My last, of course but not least issue since I have tons, but don't want to do that to all of you, is that my two brothers don't help as much, and the excuse is that they work. I have 5 kids! I have (my husband and I) a business. Actually, my one older brother has a business too, and he does take my dad to dinner at least every two weeks. I have to pay all his bills, take care of his dog, do all the Health stuff, and take care of Pension/Social Security, and basically all the paperwork, for eveything he has to do. It just gets hard sometimes when my younger brother just doesn't deal well with it, so say on a randomn Sunday, and I am out with my dad, and at least 4 of my five kids and I have already taken him to lunch, and I just see him hanging out with his 2 kids, with not a care in the world. We all live within a 7 mile radius so I can see him over at my exes house or mom's or other brother's, you know. So it just ticks me off that other family members don't junp in and try to help out every now and then. I have heard other family members say oh, yea, we'll visit. BLAH BLAH BLAH, and they NEVER have!! I don't know if anyone is still reading, but thanks for listening, caring, and understanding because I am sure you have all been there. By the way, I just got this great card (like a business card) that you give to people, like at a restaurant, to give them a heads up, that say: Thank you for your pateince, my loved one is suffering from Alzheimers. (I cried when my friend who lost her dad, gave it to me, to show it to me.)

    Thanks, and any advice is always appreciated!!

    MOMof5 plus dad.

     
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    Old 12-12-2007, 07:29 PM   #2
    angel_bear
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    Re: my dad's stages, and symptoms are different

    Hi there, and welcome to the wonderful wacky world of Alzheimers! LOL

    First and foremost, unless they specialise, most medical professionals haven't got a clue about the disease and it's quirks, twists and tales. They *know* about it, and have a basic idea about it, but they don't KNOW it like we do. My best suggestion is to do what I did .. and educate those who don't know. Be calm (hard sometimes) but firm, and by all means, USE THAT CARD. I had made up something similiar, but my ex-charge wouldn't use it, so I sent a letter to all her 'regular' haunts (bakery, bank, club, church etc) explaining things and who to call if it all went pear-shaped.

    The behaviours you describe with your dad ARE typical, he's not doing anything that surprises me. Remember, Alzheimers / Dementia can affect different parts of the brain (frontal temporal lobe dementia, vascular dementia, picks Disease .. the list goes on on and on) therefore behaviours and characteristics are dffernt, and typically, exact diagnosis can't be done until an autopsy can be performed.

    At least your Dad has his speech still, which is something many lose early on, so as long as you are prepared for some magnificent story telling, let him enjoy his world.

    I've stated before, that many people expect their loved one to 'behave normally' and I always encourage them to stop thinking that way. The loved one ISN'T behaving like this on purpose. They have no control, they can't help it. They are becoming increasingly *stuck* in their world, and are simply not capable of entering ours. Therefore, as you have already learnt, just agreeng with them keeps them happy.

    My favourite statement is "Promise them the world if it keeps them happy" who cares ??? It's much better than the alternative .. arguing, frustration, anger on both sides ...

    And on the 'rest of the family' front, don't expect anything from anybody. If help comes, accept it with good grace, but don't set yourself up for disappointmen .... families have been destroyed, children ruined through the experience of a grandparent/in-law going through the disease process, and from one who has been in that position, don't let it get that far. Your loved one will eventually pass on, but your family will still be around for a while yet.

    when I looked after my two charges (one with Dementia, one with lung disease) my husband and I, and our 3 children moved in upstairs in a 2 bedroom Bed and Breakfast while my charges lived downstairs. There were family living in the same town (5 minute drive away) but when help was requested, we were constantly disappointed. When we started looking after them, I was working 38 hours a week as well .... so between work, 3 kids, husband, cooking for 7 people, housework (never a priority let me add LOL), trying to have some form of social life (ha !! Friends had to come to us because we couldn't leave the house) ....... and then to get ACCUSED of doing it for my own gain (right .....High Blood Pressure was worth it! A suicidal son was worth it! A schitzphrenic son was worth it! NOT) we had to flee our town where we at least had some friends, 1000km away just to feel SAFE.

    It can be messy. Don't let it be messy. Don't expect help, don't demand help (makes people run away even further), utilise local centres (Alzheimers chapters, Adult Day Care, Respite Services etc etc) to give you some rests as well.

    The rest of our members will come in with some good advice too shortly !!!

    Sorry to rant as long as I did !!
    Cheers

     
    Old 12-12-2007, 09:59 PM   #3
    Gabriel
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    Re: my dad's stages, and symptoms are different

    Angel is right, except for specialist and those that have experience with dementia usually do not understand. You need to remember that they are not being rude or uncaring, they are just uninformed. Use it as an opportunity to educate rather than becoming angry.

    Both my Mom (Alzheimer) and Dad (vascular dementia) have dementia and their symptoms have been very different. Mom repeats stories while Dad repeats questions. Dad cannot remember current events at all. Mom remembers some current events but confuses the facts. Dad's stories are based in reality while Mom's have much confabulation incorporated into them. We knew Dad had dementia but Mom's was a surprise because she blamed any strange occurance on Dad or the fact that she was frustrated and depressed because she had to stay at home with Dad. I didn't see anything that you mentioned that I have not seen.... and much more.

    As for the family helping out. I agree with Angel.... do not expect anybody to do anything. If they do decide to help then be thankful. It will save you a lot of disappointment. There are some that just cannot accept the reality of the situation and will avoid it totally. There are some that just don't know what needs to be done and do not understand what part they can play. Then there are those of us that jump in and do it. There is not much you can do about the first group. Denial is a protection when the brain cannot accept the reality. It may not be healthy but it is the way some deal with unpleasent situations. The second group has possibilities. These you need to give information to. You need to let them know, in an informative not demanding way, what needs to be accomplished. Sometimes they will come through and be helpful. The last group is given most of the burden of care. Sometimes disagreements can not be helped but it is better to try and remedy the situation rather than letting hard feelings fester. You can't fix anybody else.... all you can do is control how you react to whatever they do.

    For a several years leading up to Mom's diagnosis and for a year afterwards I was the one that took most of the burden. A huge riff was growing between the sisters. Finally it was necessary to place Mom and Dad in assisted living and they ended up in the city where my sisters live and not close to me. This shifted the burden. Now my sisters have responsibility for most of the daily care while I am still doing most of the paper work and financials. It has evened out and I have spent a lot of time reaching across that riff to bring the sisters back together. I do not agree with their methods at times but have learned to keep my mouth shut unless it is really important. I realized that was I holding onto control and not allowing them to do what they could. Now I let them do what they can and try to take up the slack. It is much better now. Sometimes you just have to be the bigger person and rather than holding on to resentments try to bridge the gap this horrible disease can create in families.

    Keeping your Dad happy is half the battle. They are so much more cooperative when they are in good humor. If you have to slip into their world and listen to their stories over and over then it is worth it. They are not capable of doing anything different. They cannot come into our world so we have to join them in theirs. I have had the most delightful conversations with my Dad when I learned to listen and respond rather than direct his thinking.

    There will be days of total frustration when you want to pullout what hair you have left. Just remember that most people will do the best they know how at any given moment in time. For your Father you have to join him in his world because he does not have the capacity to learn. For the rest they need to be educated and you are in a position to help them as well.... then perhaps they can be of help to you. If that doesn't happen then you have to realize they are doing all they can do. It surely helped for me.

    There are kendrid souls that have walked in your shoes here that have wonderful advice. They have been a godsend to me. Keep typing because it does help the frustration level and you never know when you will get that little bit of information back that will make your day better. Know I keep you in my thorughts and prayers....

    Love, Deb

     
    Old 12-13-2007, 02:55 AM   #4
    Martha H
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    Re: my dad's stages, and symptoms are different

    Welcome to this Board. I found life saving encouragement here, and I hope you will too.

    I also chuckle at the way the A word is said, I hear anything from "All-heimers" to "Old-Timers Disease". However, not much else about this is funny.

    I agree with those who said your dad is not showing any unusual symptoms; in fact everything he does is exactly what my mom did at the early stages. It is a shame his wife left him, but good riddance - she would not have made his life any easier.

    I also had an almost identical problem with my siblings. My sister did nothing for Mom, my brother - bless his heart - did give me some relief, but the brunt of her care fell on me for the 5 years I lived with her and also worked full time.

    I also made all the possible mistakes there are. I tried for months to 'reeducate' her, to explain, describe, reason, and cajole her into behaving 'normally'. Finally it dawned on me that she WAS behaving normally, for an AD patient -- that included telling tall tales about her childhood, things we had never heard before and which contradicted stories we had heard when she was normal, losing things, getting lost, throwing out good things and hoarding junk and leftover food, personal uncleanliness, wandering at night, irrational fears, inability to dress properly for either the weather or the occasion, and maintaining all along that she was fine and could easily live alone ... which she would have preferred, and which my sister kept telling her would cure all her problems.

    To make a long saga shorter, she now lives at a nursing hme, and is near death.

    Those 5 years were really hard on me and on my own health, but now I wouldn't give them up for anything - I learned so much from it. Above all, patience.

    God bless you!

    Love,

    Martha

    Last edited by Martha H; 12-13-2007 at 06:31 AM. Reason: mis-types

     
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