My husband and I are struggling with how to deal with/cope with a parent who has dementia. We've arrived at the point where we have now moved her into an assisted living complex (5 months ago) and she just seems to be deteriorating rapidly. Today we dealt with her soiling herself while sitting in her favorite chair and not even realizing she'd done it. We're not sure how long she had been sitting that way, however, when we arrived to take her out to do some shopping we noticed a horrible odor and when she stood up, realized what it was. She didn't seem to be bothered by it, just said, "Oh, I wonder how that happened?" We had to ask her to clean up a bit before we took her out. All she did was change her clothes, but she didn't wash up or anything. She's come to the point that she doesn't bath, wash her hair or set her clothes out to be washed, but refuses to have someone come in to help her. There are laundry facilities in the complex or she can have someone do it for her for a fee, but she won't put her clothing out. She'll leave canned meat out on the counter and not realize how long it's been there. Luckily, we go over to see her 3-4 times per week and manage to throw everything out. My husband, being frustrated, said to her, "It seems like you're giving up." All she replied was, "Yes, I guess that's it." I think if she were truly giving up, and realizing what she was doing (soiling herself) that she would show some type of embarrassment, however, she's not, so I'm thinking she just doesn't realize what she's doing. Is there anyone out there who can share a similar experience and how you dealt with it. Many thanks.
First off, your post, while appearing understanding is also coming across as frustrated. But you will just make yourselves sick or more angry at the person if the frustration continues to fester.
First off, she isn't aware of anything. The part of her brain that controls emotion or empathy/embarassing, etc has been impacted but the disease.
Is this an actual diagnosis from a doctor or just a label you think it may be?
Did you and your husband get medical POA and regular POA's; if not, you have to.
In terms of soiling herself, leaving meat out, not leaving clothes out to be cleaned -- you will find a lot of stuff hidden in the back of closets or drawers.
Her lack of feelings is just a sign of the disease. She is neither angry or happy, she just is. and yes, in her own way her brain is giving up and there isn't a thing she can do.
You will need to just hire the person to do the laundry yourself and get someone to make sure she eats -- while the meat is out, she may not have made anything, etc.
You have to realize this is a one-way trip to the end. There's nothing to make it better, there's just medicine to slow the progress but not eliminate it entirely.
Please understand that even though you put her in an assisted living facility, she needs assistance and sometime in the future she'll have to be moved to a more secured environment.
We are a big family here and all of us are going to help you every step of the way. It won't be pretty and it certainly won't be easy but you did the hard stuff already by not having her under your roof and trying to take care of her yourselves. God Bless You.
Welcome to our little group web. Sorry you needed to find us but glad you did. Each of us here is also dealing with a loved one or loved ones with this diesease.
First you have to understand that she has no cognitive awareness of what she has does. As Caring said, the part of her brain that that controls learned social behaviors is one of the first to go. She more than likely has no memory of soiling herself. She is as baffled as you are as to how it happened. She has no idea how the food got on the counter either. She doesn't know if she has eaten or what she might have eaten. She doesn't remember when to put out the laundry and each night is just another night because the time frame disappears. She no longer can tell Monday from Thursday.
Task like doing laundry, fixing meals, taking a shower, even going to the bathroom, and other task that we find so easy become terribly complicated to someone with dementia.
Emotions are either completely absent or extremely exaggerated.
It is not that she has given up, it is that her brain can not process the information.
My Mom has Alzheimer's and my Dad has Vascular Dementia. They are together in Assisted Living that is specifically designed for residents with dementia. Many days they have to come remind my parents that it is time to eat. Mom never did figure out when to put out her laundry, even if she was called the night it was due to be put out. By the time she hung up the phone it was gone from her mind. I have found cans of soup open and put back in the cabinet. The stuff that is in that fridge is disgusting. Dad has had accidents in the bed and then made up the bed. Dad only showers when we can catch him between getting up and putting on his clothes and coax him into the shower by taking away his underware and turning on the water. They you have to stand there and remind him to wash his hair, rinse off, give him a towels, sometimes even tell him to stop washing. Dad only changes when you take his dirty clothes away and put out clean clothes either while he is in bed or in the shower. Mom only wears white pants. Her hair used to be impecable but now it is always a mess. She has no clue what to do with it. She used to go down to the beauty shop once a week but she's not doing that now. It is just what they do. It is not a conscious choice that they make or even a subconscious. It is just what the disease does to them.
As for the answers she gives you, as when you hubby ask if she had just give up. They will give you an answer but it still may not have registered in their brain what you are saying to them. On a recent call to my Mom I ask to speak to the sitter. Mom said ok but kept the phone. I repeated the request in different words. Again she said ok but kept talking. I repeated the request no less than six times before she finally grasp what I wanted and gave the phone to the sitter. At other times I have ask her something totally rediculous and she has given me an answer that was just as rediculous with no awareness. Are you going to jump out of the window today?.... Sure I am! They don't process what you say but know from the inflection in your voice that it is a question and they give you an answer.... usually positive.
Until you truly understand that she is not doing this intentionally it will continue to frustrate you. Once you relalize she is doing the best she can it become a little easier to deal with. It's like a child. You don't expect a toddler to remember what night to put out the laundry. They don't have the time frame necessary to know when it is laundry night. Mom is the same. You put a toddler in the tub and don't expect them to do it by themselves. Mom is the same.
If her assisted living has care levels then it is possibly time for you to discuss a higher level of care for Mom. If not, it may be approaching time to move her to a facility where there is more assistance. Just understand that she is not doing these things by choice.
Yep, it is frustrating. Hopefully you will find the support, caring, and answers that you need here. Hope to hear from you again soon
Wow! Thank you soooooooo very much for your supportive comments. We have suspected that Mum's absence of understanding has been present longer than we even realize. She was once an impeccable dresser and perfectionist and it is sad to witness this declining state. Her "memory doctor" has suggested her taking Ebixa to stem the rate of decline, so maybe we'll just need to follow that for half a year and see how she responds. Again mega-thanks for your calm caring words!
One thing all of us here will tell you is to keep a diary of her actions, inactions, personality changes, etc. Some medication is taken with no side affects, others may make them manic depressives, some others may make them zombie-est.
My mother was on articept and namenda - and I found her having hallucinations, and other things that she was no longer able to vocalize as she lost her ability to talk long before the illness became truly unbearable and the end.
So -- please keep in close contact whenever they start to put any medication into her. You must be able to understand changes in her for the better or the worst and know that you may make medication adjustments as necessary.
You and your husband are sharing the role of advocate for her but someone has to be the primary traffic cop to avoid confusions.
Take care, as I said, you did the hard decision already by putting her in a facility. All too often family members feel unnecessary and unjustified guilt of doing so and insist on keeping the loved ones home. They don't understand that it does take a toll on the caregiver as well as the other family members who must watch the caregiver suffer through this.
You are probably right Web. Your Mom's lack of cognitive abilities has probably been there much longer than you realize. In hind sight it was at least 3 years between the onset of symptoms and when we finally realized that there was "something bad wrong with Mom".
Hind sight is a wonderful thing. When Mom started isolating herself (because she couldn't cope with the chaos in the outside world any more) and blaming it on us or Dad (it couldn't be her because they don't know they are disfunctional) I should have known. But she self diagnosed herself with depression and it fit. She was Dad's caregiver and it sounded plausible. When she stopped keeping her friends books (she was a super book keeper until she lost the ability to manipulate unreal concepts such as numbers) I should have suspected. When her computer was "broken" constantly (her inability to manipulate electronics) I should have known. When she refused to cook (because she couldn't any more) and said it was because she was mad at Dad I should have known. An on and on.....
I became suspicious when she tried to give the money to the guys she met in the restaurant. Then I realized that she, the bookkeeper, was not even keeping a check register. She was constantly in melt down because of something somebody had done that was in no way her fault. And then she totally messed up Dad's medication overdosing him with Xanax. When the diagnosis was finally revealed she continued to tell her friends that he had a heart attack. Hit me in the face with reality!!!! As soon as we got Dad out of the hospital we had her diagnosed. By then she was bad enough that she could not stay at home, especially caring for Dad, alone. That entire time she was coming up with "excuses" that sounded plausible and honestly... we didn't want to see it. Eventually, you have to see it because disaster occurs that you can't ignore.
Denial is a happy place but a dangerous place. When reality hits it is frustrating because you truly want hope that Mom can just think a little harder and it will be ok. But it's like asking someone with a broken leg to walk. Mom's brain is broken and she can't use it any better than someone could use a broken leg. The problem with ALZ is that there is no cast that will fix it. There are meds they claim will slow the advance but they don't give the old mom back to you like the flashy ads on TV lead you to believe. They don't improve cognitive abilities, they only slow the progression, and that is only for a short time. Then Mom is back on the same rate of decline as before. If you look up the clinical trial grafts on progression you will see a downward slope without these miracle drugs. The slope with with miracle drugs will show a slower progression for a few months and then it is the same slope as without the drugs. I equate it to extending the life of the disease. They also have side effects that may make things worse. Some do develop aggitation, paranoia, and other negative side effects. So the journey Caring suggested is something you might want to do. It's easy to let little changes slip by unless you document them and look for patterns before and after.
I am truly sorry you have to deal with this situation. It's absolutely no fun but you can make the best of it. The first rule is don't argue with them. Their reality is just as real as yours it. The second rule is don't expect them to do what they can not do. Learn all you can, because that does make it easier to cope. You have earned your towels. They are your friend. You can cry into them, hang on to them (we will hang on to the other end), strangle people with them, roll them up for pillows to rest on, or just cover your head and hide under them for a while. Welcome to the group Web
I want to welcome you also and say that I'm sorry you have to be here at all. But you will find caring and helpful people here.
When you read debs post about her parents.......thats my Mom exactly. Its amazing to me that their behavior continues to parallel each other. My Mom has dementia and she continues to decline with peaks, one day she is better, then valleys, next day she dosn't have a clue where she is. She will soil herself and doesn't have a clue why her bottom is sore. Now, she has a bowel condition and its not alot but it still makes her sore. She could not gather her clothes for them to wash so we daughters wash them for her. She would forget during the process what the task was she is working on. The CNA's come after her for meals or she would forget to eat. Showering is a battle and so is getting a certain outfit away from her. She will insist that its not dirty when clearly its soiled with food that she can't see. This woman is not my Mom. She is an imposter that has taken over my Moms body. Thats how we look at things so that we don't go crazy. My Mom would never wear the same thing twice, or not shower everyday, or wear soiled depends or call 20 times a day for me to take her home because I've left her somewhere very strange. Like debs Mom she always looked perfect. Now she has no concept of how to fix her hair or what clothes to wear. Her emotions are gone so much so that she can't cry any longer. It just doesn't happen. Now the only emotion she has is fear and confussion.
When she is having a bad "off day" she will forget that her sisters have passed away and ask me why they haven't been to see her or that she misses them and wants me to take her to visit. I've spoke with Mom twice this morning and she has no idea where she is and she wants me to take her home. I explain everything to her yet again and she cannot retain the information more than a few minutes. If you stop to think and react as though this is your Mom from years ago you'll never be able to cope with this disease. She is more child like as the disease is rapidly taking her memories away.
I wish I could tell you how to help your Mom but I can't. We just see her often and keep her clean and do the best we can to calm her fears. Thats all any of us can do until they know nothing at all. We try to enjoy time with her and hold on as tight as we can to those peices of Mom that are still there. I'm so sorry this is happening to your family. As I've been told many times, you must take one day at a time and do your best that day, the rest will take care of its self.
I wish you peace of mind in your journey down this very hard road.
As my mom got worse and worse, she forgot everything in the past 12 years or so, and lived entirely in the earlier past. She did not know what day or year it was, or whether she had eaten 15 minutes ago. She thought her 2 brothers were still alive.
Later she thought she was a child and wanted to be with her mother.
Now that she has passed away, I am sure she is with her mother and her brothers just as she wished.
You have to develop a lot of patience with this disease. They do not know they dirtied their pants. They do not know they put something where it didn't belong. They do not know they don't wash or shampoo. Some become antagonistic and refuse help.
A good nursing home is the best solution since trained personnel who are well rested come in every 8 hours. I did it around the clock for many years; I wish I had used the NH way sooner.