Adjusting to a new level of dementia.

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The last week has brought change. Mom's mental functioning is not so good. She is still walking and taking care of her activities of daily living, but something has drifted in her mind. She sits and doesn't seem to realize how much time has passed. It is like her mind has turned into a butterfly -- hard to explain. She knows the day and time, but doesn't seem to place herself in it. Sometimes she just stares at nothing.

I should be compassionate with the changes, but I'm finding that I'm just irritable adjusting to the new normal. Maybe it's because I realize that the little bit of freedom I have now is about to vanish and that I'm going to have to make some big decisions soon. Wouldn't it be nice to have a family that cared about now? I hate making all the decisions alone. But I guess someone has to be the grownup in the family. (I think that is what I'll say to them.)


my mother came from two weeks in a psychiatric hospital under supposedly the best of care, the head doctor of the hospital was taking care of her, called me personally to talk to me about his diagnosis etc. we have a follow up appointment end of june.
i thought we had everything under control, as much as one can expect it to be.

when she went in my mother's primary problem was a suicidal level of depression, not eating, drinking water, laying in bed most of the time. ahe is now eating pretty well on her own, but i still have to coach her a bit. she tends to so what i do, follow the leader, likes to shadown me in the kitchen especially so i suppose it's partly my problem, i don't eat much, from stress, she sees me not eating, she doesn't eat.

anyway, the food situation and water intake has improved but she's still in bed, now all the time, if i don't force her to go out with me somewhere else like the grocery store.

i know how frustrating it is, i say it's like living with a corpse.

after many days of this behavior, suddenly last night she starts talking like a normal person, gets out of bed. this goes on for a couple hours. normal. like i have my mother back. it was the strangest thing. we had several conversations, she was perfectly coherent, lucid. i don't understand it myself, i guess this is the new normal. she is not on any psychiatric drugs, just a low does cholesterol pill and monthly pill for osteoporosis.
JessieBelle, I think you hit it on the head on why you're irritable with your mom's new norm. I remember when mom went thru that. Mom was quite violent. She would not talk to us but get mad at us in anger. But most times, she was quiet. She spoke so nicely to father but anger with us kids - when she did talk. I remember the times when she became unsteady on walking. I was already worrying on what we were going to do when she became bedridden. I didn't know anything on how to care for a bedridden person. How does one change their pamper? Shower her? It was like every New norm, I was already worrying about the next one - and how I was going to deal with it. I'm just sooooo glad that even at that time, we had weekly visits by the gov't caregivers. They showed me a lot of the ropes with each of mom's new stages. I may have had 7 siblings and numerous grown up nieces/nephews - but no one helped me and dad care for mom. Just take it one day at a time and Do try to figure out how you will handle the next stage of your mom's. Better to be prepared than to go running around like a chicken with no head. {{hugs}}
Jessiebelle what I have found that my Mom will have days when she does the same, staring into space or she'll fixate on the date and time all day and still not comprehend it..

I'll get excited when she wakes with an alert mind and good attitude figuring it's going to be a good day.. But I can't help worrying when the ball will drop..

I guess I should be happy that she still has so called normal days.. The question is when will these days end.

I called my mother's doctor this morning. She was out of town until next week, then she didn't have an available appointment time during the month of June. What!!! What kind of doctor is that? Her doctor spends so much time keeping up with her education that she doesn't have time for patients, and apparently they give her so many patients, she doesn't have time for anybody. That just seems so wrong to me. I was able to get her appointment to see another doctor next Tuesday and figured if things got worse between now and then we would just go to either Urgent Care or the ER. Quality care in the USA? Give me a break.

This week is a busy one for me, so I'm thinking of what I need to do to find her another doctor. I know I won't be able to start the main search until Saturday. I do need to get her to a more dependable doctor. This geriatric clinic (Spain-McDonald) at UAB in Birmingham is the pits.
Today I turned 50. What did I do today? I changed diapers, fed, bathed, lifted, been hit kicked,dug, cleaned poopy butt and all with a smile (fake smile but a smile all the same). That's ok I've been doing this since 06. Just harder now cause mil now is in late stage Alzhiemer and had major stroke. I just wish the mean tempered personality would go away. Then there is her by-polar daughter who just causes trouble with us but will not help ever. All she wants is to get her hands on ma's money. And kicker of it is. She doesn't need it. She has everything money can buy. My husband and I live day by day no luxuries but were happy. And moms money is hers till the day she dies. But greedy sis in law wants it now. She hired attorney and pi for what? We don't even know what she is fighting us for. Mom is here and safe. And we take good care of her. Hospice is starting on Wednesday. Thank god. Maybe I won't have to be a prisoner here. I can't even run to store 2 blocks in fear that sis will come and take mom away. I just wish she would let us do our job which is to take care of her mom. And let moms last little time e in peace. If this mean women had any idea in her mind how I'm fighting for her she maybe would smile at me lovingly instead of the hateful smile she gives me.
Hospice is always like a little hope on the horizon. They may be able to arrange some respite care for you. Something I've recently learned about is that many states have a program to help caregivers some. If you google "aging in place" and your state name, you might find a program that provides some caregiver services, such as a little respite time. Alabama has a program, Alabama Cares. It only allows 6 hours respite a week for home caregivers, but 6 hours can be a blessing. I haven't used them yet, because my mother won't allow people in, but they are on my future to-do list.
BTW, happy birthday, Turnofthepage! 50 was a hard one for me. Now it seems very young.
Sorry Jessie for missing this post. Moms turned another chapter as well.

She qualified for 2 hours a week. Just not worth my time.

Maybe if YOU allowed them in ....for YOU. Yeah, preaching to the masses
Same here, a new level and am hoping that Mom still has the UTI. Getting her rechecked on Wednesday. When I picked mom up at day care she did not want to leave because "I am missing something". I told her everything she needs is at home. Later figured out that what she was missing was her two little girls, bratty sibs. This went on all night so I have bolted the doors so she cannot wander off in the night. Nothing in her brain is working any longer.

Jessie my mom has not been able to take care of ADL's for probably four years. Though she is able to get herself to the bathroom and is continent except for occasional accidents, which she is a danger to herself trying to clean up. Haven't let her try to do that for about 1.5 years now.

It is very hard to watch these long slow declines. Sometimes I just wish it would hurry up already!
Each change brings new challenges - maybe subtle ones, but new ones nonetheless. I think we are already close to overload - so new challenges push us into overload. They upset the equilibrium. You get comfortable with a certain routine - including expectations - and then that changes.

Just got a new report from the geri psch hospital. Mother is committed now till Nov. Her delusions are expanding slowly. Her disease is different from Alz in that it affects her mentally/emotionally, but not physically, so far. I agree the slow decline is hard to watch. There is a grieving with every step down but also as glad says - a wish for it to hurry up.

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