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She asks for my dad who died in 2001, her dead siblings, parents or other relatives. When I tell her that the person she is asking for is dead she just has this blank look on her face. She seems to have sundowners and is on trazodone. She is always in pain due to arthritis and gets more agitated. My husband and I are retired and I moved her from her home in another city to move in with us since she could no longer live by herself. I am not sure if this was the best solution because she can be very mean at times. I have no sisters and only one brother who really has no clue of what is involved in her care. She does not want me to assist her but she really needs help. Becoming more incontinent and wets the bed almost every night because she does not properly put it on and she takes the protective padding off the bed. She refuses to bathe which is another issue. I just signed up for daycare because of my own health issues. Not yet ready to place her because of financial issues.

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When my husband went to the adult day health program a van came and picked him up and brought him home. It was a real struggle to get him ready on the van's schedule. I thought about it and, duh, decided we should simply start later. The program was fine with that. It really did help us both get a better start on the day.

As a trained and experienced social worker you probably are way ahead of where most of us started in terms of finding resources and applying for programs, etc. But it seems you are about where most of were concerning what to expect and how to deal with dementia behaviors. No need to feel guilty, just change as you learn things. And this is a good place to learn things from people who have been there!
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::HUGS:: for what they are worth. This is so tough. Take care of yourself first.

My opinion is that any family or friends who are not coming over to do their own 8 hour care shift 3 times a week can keep their opinions to themselves about who ought to be where doing what.

One of my mom's sisters blames mom's dementia and decline on me directly because I had the audacity to move away to college, get married, and start a family instead of staying at home. The nerve! That aunt actually said to my face "don't you think your mother's condition is your fault?" NO I do NOT. "Don't you think you ought to be taking care of her at home?" NO, I do Not!
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Sandwich thanks for your response. I am well aware of what is ahead after witnessing my mother in law who had Alzheimer's disease and the decision was made to keep her in her home with family members providing 24 hour care until hospice was called in.

My mom has already been seen by neurologist and on meds for her emotional state. I was a social worker for 37 years until I retired. My brother actually works for Elderly Services and my mom has been evaluated for services however there are limitations because she barely over the income limit. Already spoken to attorney about Medicaid qualification.

I enrolled my mom in Daycare in an Assisted living home. Once I get her there she enjoys being there and they sing songs she knows and she leads them in prayer. I feel at peace having her there but not always able to get her there everyday because it is hard to get her going in the mornings. The owner is working with me. My next step is respite care for a few overnight stays and go from there. Although many will not agree with my way of doing things believe me taking her to daycare was a big step for me. I had made a promise to my right before he died that I would take care of mom so I have to come to grips with what that means. I know that I will either have to place her or have help in my home in the very near future. I am 65 and I can't do it by myself with my health issues.

My mom has gotten over that situation with my dad and the funeral issue but is now asking about her mom so I just go along with wherever she is at that time. I talked with her siblings but they feel that she would be better at her own home but that is not an options because I cannot travel back and forth there like that anymore. They (2 brothers and 1 sister) were not much help anyway. Today was not a good day since my mom has had diarrhea but doing what I have to do. Thanks again!
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I don't know you and you don't me, so I'm going to take a huge risk here, but here goes.... What on earth are you thinking?

I say that in the spirit of others who were brutally honest with me when I was at the beginning of my caretaking journey. It hurt to hear the words, but I needed the kick in the hind end they gave me because they *DID* know what they were talking about.

Get your mother to a neurologist ASAP. She probably needs meds to improve her emotional state. You need to understand what's about to happen to her, to all of you because you are there. You are going to have to bring in help to do this in your house regardless of what mom wants or says. It's YOUR house. It's your back. Your shoulder.

This is going to sound mean, but it's honest. Mom doesn't know what's good for her anymore and she just can't make the calls about who can do what, where, when, or why in your house. Those days are simply just over. You have to make those choices for her instead. You have to protect your health, your marriage, and understand this is only going to get harder and harder and harder. Can you really do this for another 5-8 or more years? Can you really handle the 24 hour shift this is going to be?

Don't reality orient a dementia person. The trainers say to join them in their world and say what you have to be KIND and keep the CALM. The truth absolutely does not matter anymore because she won't be making life decisions with it.

Get help in the house with mom so you don't injure yourself. You are going to accidentally put yourself out of commission trying to help her transfer, roll over, lift, move, or something and then where will you be?

Sounds like your house is FULL. I personally would not have a dementia patient in decline from moderate to severe in the same house as young children. As the scary and more wild dementia behaviors increase it will be upsetting and frightening for the little ones. It's bad and scary enough for us adults.

I wish you all the best on this, but please be realistic and understand there are a lot of other options available. Call your area agency on aging to get connected to a home-assessment, a social worker, and resources you are definitely going to need.
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Thanks for all of your suggestions. I am typing this through tears and guilt. this morning my mom woke up early asking about my dad numerous times and I tried to avoid the question and divert her attention to something else. I did not have time to read your responses and I ended up telling her he died. I feel so guilty because she cried saying no one told her and how hurt she was. She asked about the casket and who had the body. she kept crying and the only thing I could think of was to give her breakfast and take her out of the house. She can barely walk now and is in a lot of pain due to arthritis. We took her to the store and had lunch. It was okay until tonight. She started crying again saying no one told her he was dead. I did not know what to do at this point so I showed her the program and the note she wrote in the program. I am so hurt that I hurt her. I had told her that he had died before but this time it she seem to have remembered it. Now what? As far as the bedwetting I do have a waterproof mattress on the bed and she wears the pull ups with added pads that I insert. My mom weighs about 225 lbs. It is very hard to pull them all the way between her legs. I don't mind doing the laundry. As far as my brother is concerned, I live in Miami and he lives in Ft. Lauderdale but works in Miami. I have explained to him what it takes to care for her. His solution is to take her back home to Tampa for a week to give me a break. The last time he took her she came back so confused and looking like a wild woman. I have respiratory problems, HBP, tear in my rotary cuff and two herniated disc in my back. My husband has been a great help but it is beginning to take its toll since we have no time for ourselves anymore. He goes fishing to get a break. I tried getting someone to come in but my mom refused to let her do anything so I just stopped it. I thank God for this resource and will read other info that will be helpful. I am always reading about dementia and have talked to ALZ Assoc. for their advice on some things. Honestly I am so tired but get deals with placing my mom just yet. My youngest dau. who is a single mom with twin girls 10 yrs. old also lives with us. Because of her job schedule we also do grandparent duties. Thanks for letting me vent.
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On the practical side of this question, soaking the bed because "she does not properly put it on" sounds as though you are using incontinence pads, I think it is time to graduate to pull ups at night. And if she won't leave the waterproof pads on the bed try putting them under the sheet, less easy to remove and they won't bunch up, which may be why she dislikes them in the first place. I read one poster who made up the bed in layers so it could be easily stripped with a fresh layer ready beneath. Still a lot of laundry, but better than a soaked mattress. I hope you have a waterproof mattress pad on as well?

Telling her daily that her loved ones are dead and gone is not helpful, she either doesn't believe you or is stricken with grief every day, and she can't remember anyway. Try to divert her or tell her a loving fib... her parents are safe at home, (their heavenly one), or dad is out bowling or whatever makes sense for you and her.

Above all educate yourself about dementia. Aging Care is a wonderful resource, read the articles and use the search bar to find posts from others who have faced the same problems you are having.
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Does your brother live near you? Have you tried to tell him what all is involved in caring for your mom?

I've shared this story many times on this site but I learned such a great lesson from it so I'll share it with you. I cared for my dad in my home and I had resentment against my brother because he never offered to help. This went on for years until one day a few months before my dad died and he had been placed in a nursing home. The stress had gotten to me and I broke down on the phone to my brother. I sobbed and sobbed and went through everything that had been going on. My brother had no idea what had been happening and he told me that he assumed that if I needed his help I'd ask for it while I felt that he should know I needed his help and offer it. It was a total breakdown in communication and from that point on he and I came together as a team that functioned smoothly. My brother took care of the financials related to my dad living in a nursing home and I took care of the medical stuff.

I learned not to assume anything and to ask for help if I need it. Maybe your brother would be willing to pitch in but doesn't really know what to do. It never hurts to ask.
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So sorry you have begun this journey with no help. If she has dementia, she will not understand that what you are telling her is the truth. Some way you must relate to her reality, she can't relate to yours. Yes, she will be mean, this may not be the person you know. It is the disease speaking. Be kind and loving as she will not understand why you may be upset. Assist her as if she is just a good friend, "I'll help you with that". Don't ask "if" she needs help, or can you help. Be certain she needs, but doesn't want to admit she needs your help. Try explaining to her that at times she may not make it to the bathroom in time and the cost of a new mattress is pretty high. Ask her to help you out with keeping the bedding clean. She knows she has "issues" and may have some ideas of her own that may work. My Mom needed to move in with me at age 98. it was no piece of cake. Some things I had to just respect and sometimes when she/her opioin was included in the process it worked a little better. Maybe not always the way I would have liked, but don't sweat the small stuff. Be with her, love her and try to put yourself in her place.
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