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  • Is this a "normal progression of the disease"?

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    Old 02-15-2010, 04:54 PM   #1
    BlueAtlas
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    Is this a "normal progression of the disease"?

    I'll tell you the scene first and wait for your input before I tell you the whole story. So, no bias in your answers, right?

    I took my MIL to day care. An hour and a half later I got a call. She was not participating in chair exercises as usual. She was just sitting in a chair kind of slumped over. This is unusual for her, the first time that's ever happened.

    Is this to be expected as she progresses in her Alzheimer's? Would it be "normal" for her to be like that some days and then more "with it" other days?Is it cause for concern that something is wrong other than Alzheimer's?

    Thanks!
    Emily

     
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    Old 02-15-2010, 07:12 PM   #2
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    Re: Is this a "normal progression of the disease"?

    1) sometimes their balance is off even when sitting due to an inner-ear infection. So have that checked.

    2) Yes, it is possible that one day fine, one day not and then one day fine again.

    CaringSister54

     
    Old 02-15-2010, 09:27 PM   #3
    Gabriel
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    Re: Is this a "normal progression of the disease"?

    if this was the first time it had happened I would check to see if there was a medical reason. Had she dozed off due to being tired? Was there a virus or infection at work? Was her heart rate and BP normal for her? Had something happened to upset her that she was trying to shut out?

    After ruling out other possible causes I would say yes it is possible that it was just a normal progression of the disease or an emotional response to something that had happened. My Mom does it occasionally and my Dad does it frequently. I call it zoning out! It is very possible for them to be more confused one day than the next.... or one hour than the next.

    Just last Friday Dad was out of it! At precisely 1:35 PM he "woke up", had a few good hours, and then dozed off.

    It's hard to tell with no more information... since you are probably withholding the "good part" hehe

    Love, deb

    Last edited by Gabriel; 02-15-2010 at 09:29 PM.

     
    Old 02-16-2010, 02:45 AM   #4
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    Re: Is this a "normal progression of the disease"?

    The most frustrating thing abut Dementia is that nothing is normal! Each person seems to follow their own pattern. Without a battery of tests no one will ever know what happened. A mini stroke? Fatigue? Boredom? Withdrawing from a confusing world? Breathing problems?

    Sorry this happened. What did you do?

    Love,

    Martha

     
    Old 02-16-2010, 05:16 AM   #5
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    Re: Is this a "normal progression of the disease"?

    With dementia, every day is a new day.

    What was normal yesterday, may be completely opposite today. Could be a kidney infection or something. Who knows. Welcome to Planet Dementia.

     
    Old 02-16-2010, 01:07 PM   #6
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    Re: Is this a "normal progression of the disease"?

    I feel you on this..It changes by the hour with my grandmother. One minute she will be in her room listening to music. The next minute she will be in the living room hitting the chair saying nobody loves her and how she wants to get a place of her own b/c we are all idiots. Then a while later she will be crying and saying that she is sorry. It is hard to handle sometimes and everyday it is a new adventure.

     
    Old 02-16-2010, 07:30 PM   #7
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    Re: Is this a "normal progression of the disease"?

    Okay, my dears, you all told me exactly what I thought you would!

    I'm getting very frustrated with the adult day center. The woman who heads it up has called me three times in the last few weeks to come and get my MIL early. She only goes 2 days a week, so three times is a lot to me. And I don't think it's been necessary.

    The first time, they said she had wet herself several times and they had to use her emergency clothing and change her Depends. When I got there to pick her up early, she was absolutely fine and was dry. The director told me that every time they offered her a drink, she had taken it. Therefore, she must be dehydrated. I tried to gently point out that if she was peeing so much, she couldn't be dehydrated. She was probably accepting the drinks because she thought she was being social or she simply didn't remember that she had already had drinks. But I was brushed off.

    The second time, they said she was agitated. When I got there, she was fine! She was happy when I arrived and happy when I left early with her. I, on the other hand, was NOT happy!

    Last week, I again got a call, the one I described above. When I got there, she was absolutely fine. She had been tired when I got her up, so I think she was still sleepy and just wanted to snooze instead of exercise. But the director didn't like how she was sitting slumped over to one side and told me that something was wrong and that "this is not the normal progression of the disease." Anyone who falls asleep in a chair is going to slump over a little! And someone with Alzheimer's is going to have ups and downs. I had already told them that she had been more confused than usual the day before. I was really ticked off! Yes, it IS the normal progression! Could something else be wrong? Possibly. But when she was fine by the time I got there, I felt that she should have just stayed. For crying out loud, they have recliners and rockers lining three sides of the room! Why couldn't she just sit in a recliner? She'd be doing basically the same thing at home. Except that by the time we got home, she was all energized and spent the next several hours going up and down the stairs and I got nothing done that I had expected to get done on the day she should have been out of the house! And I had to pay for the whole day on top of it! This director has told me things in the past that make me think she doesn't have as much experience with Alzheimer's as people think. Only a few of their participants have dementia. Most of them just need some physical help. I don't want to rock the boat, since my MIL really doesn't qualify for their program anymore, since she's no longer in control of her bowels. I don't want her to be kicked out, so I don't want to complain too loudly, but I also need to have her in a place I can depend on so I can keep my own appointments. I schedule those two days a week pretty full.

    If the director is giving me a backdoor message that they don't really want her there, I wish she'd just be upfront and say it. I hate backdoor messages. If that's what she's doing, I wish she'd say what she means and stop playing games. My husband says they won't kick her out because they have too many open spots in the program and need our money. He might be right, but it makes me mad that I'm not getting what I'm paying for. And it made me even madder that I didn't get my break from her!

    Alright. I'm done venting.

    Thank you everyone! I just had to get it out.
    Emily

     
    Old 02-16-2010, 11:18 PM   #8
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    Re: Is this a "normal progression of the disease"?

    I do believe you have a lady that doesn't want to deal with mom but wants to keep her enrolled to keep the numbers up. Is there somebody over the director that you could talk to? I swear I would tell the director that I was going to pro rate each daily charge to the time Mom was actually there if they continue to call. I'm just that way

    You are absolutely right about the dehydration. They do not urinate repeatedly if they are dehydrated. That's just common sense. I believe your thoughts are right. If I hand Dad a glass of water he drinks it. I can hand him another and he will drink that one too. He will do that until I stop giving them to him.

    The agitation from your Mom, I bet, had something to do with this lady irritating Mom to get her to do something that she didn't want to do. As soon as the irritation stopped, the agitation stopped

    As for the last episode. You said yourself that Mom was tired that morning. She had dozed off and as most who doze off in a chair she slumped. I watch Mom and Dad do that every time I am at the facility. Mom just needed a little shut eye

    Can you request that Mom not be required to do all the activities if she doesn't want to do them? Can you request they put her in the recliner? you might suggest that they don't give her water repeatedly to prevent the copious urination.

    I am just shaking my head because it is obvious that you have a director that is not very astute not only to dementia but other medication situations. She doesn't seem to use common sense in her approach to what might be wrong. Yep, I would be miffed as well. And the first thing I would do is let the lady know that I would be paying for what I got or getting what I paid for It might be time to pay for an aid to come in and stay with Mom the days you need to do other things.... or find a more appropriate respite care.

    Love, deb

     
    Old 02-17-2010, 03:47 AM   #9
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    Re: Is this a "normal progression of the disease"?

    Thanks for explaining the whole situation. I think there will be a better solution for your Mom than that Adult Day Care. A home health aide is one solution, another would be to move her to a good, loving, caring nursing home.

    The key is trained personnel When we had a HHA coming to Mom's apartment and going with her to her senior center or shopping or whatever Mom wanted to do (by city bus, we lived in NYC) the 'regular' was schooled in Dementia care and got along just fine. But one day she was sick and the agency sent a substitute who was trained in caring for handicapped people but had no clue about dementia. It was a disaster.

    First of all she had not been informed abut Mom's daily routine, and when Mom said she wanted to go to the senior center, the aide took Mom's word for how to get there. They wound up waiting for a bus on the wrong corner and eventually coming back to the apartment in the pouring rain. Mom then told the aide to leave, since she was staying home she didn't need her. But the agreement was to stay with Mom until I got home at 3 PM, whether in the house or underway. I had a short school day that day, and arrived home at noon to hear a loud argument in the hallway outside Mom's door. The aide was leaving, carrying two umbrellas, one of which she carried with her to use when she picked up her daughter. Mom did not believe that explanantion and insisted that the aide was 'stealing' Mom's umbrella. Loud voices coming from both sides.

    I sent the aide home after she outlined the events of the day so far. We were billed for a full day. I calmed Mom down. I complained to the agency. "Oh, well, it was a sudden situation, we had to send somebody." (the aide arrived after I had left for my job.) She was totally useless. The regular aide was great with Mom! if Mom said "this is where we wait for the bus", the aide knew it wasn't, and joked Mom into walking the extra block to the real bus stop.

    There is a technique ro dealing with AD patients, and the Day Care your Mom goes to is not doing it well.

    I hope for a good solution.

    Love,
    Martha

     
    Old 02-17-2010, 03:57 AM   #10
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    Re: Is this a "normal progression of the disease"?

    Emily - I am so sorry for your pain, it is truely a very sad disease process. I work in a health care facility and see loved seeing the changes in thier parents and grandparents. Have you thought about a support group to help you talk about with others one-on-one? Take care-

     
    Old 02-17-2010, 04:28 AM   #11
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    Re: Is this a "normal progression of the disease"?

    I thought the Adult daycare centers were there to make your life easier, not the other way around. How silly of me.

    Unfortunately, the people at some care facilities can be rather lazy. And until you come to an understanding about what is expected (there's an administrator who probably still can't sit down after the butt-chewing I gave him) they really wont take the initiative.

    Once you get their attention, they will see things in a much clearer way.

    Good luck, and don't back down. In the meantime, start looking at other alternatives.

    k

     
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