I am on only child, caring long distance for my Mom. Her health went from bad to worse in 2010 after she called me experiencing what turned out to be a brain hemorrhage. I traveled to be with her and care for her for 3 months. She ended up back in the hospital two weeks after I left. Evenutally this led to her being placed into a nursing home. Initially we were set up for assisted living and she backed out at the last minute. There are no friends or relatives to help. She cannot travel across the country. I am unwilling to give up my home and move to be closer to her. I do not travel well myself. I call her every day or so and each day the conversation is the same.She says she wants to get out of there, she hates the people there, the food is awful, she will not let anyone touch her and she wants a place by herself. She has always been somewhat reclusive and because she feels so poorly, I know she is very emabrrassed about how she looks and feels.
I have hired an elder care nurse who is wonderful and sees Mom every two weeks. Her regular doctor felt a nursing home was the best option for her, because she wouldn't let anyone in her home to assist her with anything. She didn't even want me there and had a psychotic break over me being with her. She does appreciate some of the things I have done, but this is not how she pictured her life in her old age. She feels she has been stripped of her life and I have to admit that is probably true.
She is 91, suffers with dementia, behavioral dilusions, develops blood clots (has a vena cava filter to prevent problems), has really bad osteoarthritis and has short term memory issue as well as aphasia. Now she has not let anyone touch her for over a year, and her toenails are so bad, they are grotesque. She has anxiety and depression and paranoia (getting meds for this). They finally got her into the beauty shop to cut her hair and she was very upset that they "violated" her in that way.
She will interact with her roommate and others and she seems to save her worst moods for me. Guess she feels comfortable with me.
Today, was like most. She just wants to die because she is so miserable and she hung up on me. I have talked to the social worker, her elder care nurse, and friends. I wish I could make all her wishes come true, but I cannot in good conscience give her what she wants, which is her freedom and the control she used to have. I am at a loss and feeling overwhelmed and sad. Now I have total control over her finances and all the other things I should have.
Back to my original question.....am I doing enough and if I am not, who will tell me?
Thanks for listening.
I think you are doing enough for your Mother. She is being well taken care of. We have to accept that we can do everything but make them happy. To survive myself, I have accepted that. You must, too!!
Oh dear- I am at the very beginning of a journey like this and I see it is going to be a very rough road.
May we all keep each other in our prayers.
In the afternoons, a Home Care aide comes out to merely sit with her; my aunt pretends to sleep during the entire visit, and she refuses to eat when the aide attempts to feed her. She holds her food in her mouth overnight as well as her medicine. I got creative and started to crush her meds and put it in a Ensure; she likes them and can't seem to tell if the meds are in it. But she also has to be watched on that because she will sit and pretend to sip on the ensure without taking a sip. I have to stand over her until she drinks the entire 8 ounces, and for a week now, the ensure is all she has been consuming. When I encourage her to eat, she comes down with some type of pain, start grunting and shaking as if the shake is killing her. I don't pay any attention to that because the behavior only starts when you ask her to do something she doesn't want to do. Before this behavior, she was having a heart attach every day when I was to take her to Adult Day Care, try to give her a bath, etc. Anything she didn't want to do.
The caretakers think she is the sweetest thing, also and say that my aunt does not act that way with them. One aide started spoon feeding her and now she expects that. She can still feed herself and I won't do it. Even when she is spoon fed, she will say "I have enough" after two spoonfuls. She gets so weak until she can't move without assistance, can't talk above an audible level.
I am at my wit's end, and have decided to put her in assisted living. I hate to do that because I know the policy is not to force them to do anything they do not want to do, so I don't expect she will live that much longer, but I can't stand to see her waste away before my eyes.
Joyce, I completely understand your sadness as I go into grief each time I decide to have her go to a nursing home, but I can't take care of her if she is slowly starving herself to death. She has been with me for over ten years, and I know that I have done my best, but I keep thinking, I can do more, but I now know that I can't. My heart goes out to you and do what you have to do to take care of yourself.
I am answering this because You say you want honesty. Your question is "Are you doing enough". Your mother has no visitors, except every two weeks a nurse visits. Her basic needs such as trimming toenails are not done. She is a problem patient. With no visitors, she is neglected by the staff. She hates the nursing home. She has the same list of complaints that are brushed off as dementia, or her stubbornness, but they never get addressed. So besides your daily phone call, what exactly are you doing? If you have to ask the question, you know you aren't.
What can you do? You don't mention finances. Can she afford a private room, or help living alone? Why can't she be moved to a home close to you? Try to make it happen. Can you hire a companion, an introvert, who could visit daily, run errands, make her comfortable, befriend her, report back to you, so you would have eyes on her care? Do you have a camera in her room, so you know what the level of care is? Nobody travels well, do it anyway.
You can not change another persons way of thinking. In this case you mother probably feels her life is spiraling out of control.
As far as the bathing is concerned I imagine by now this has been addressed one way or another. Can you have your private hire check out the bathroom? Is it bright, airy, warm and big enough for a person to be on either side. Is there proper equipment to get her safely in and out. Are there plenty of soft warm towels to wrap her in. Bath aids receive little training and minimal supervision so some are wonderful and others use the bathing situation as a power trip to inflict distress on their patients. I have seen a little old lady being showered and the aide was rinsing her hair and allowing the water to run down her face. She was not complaining but her face was screwed up and she must have felt like she was being waterboarded. The aide was not being deliberately unkind but I hope I am never that old lady. Disrespect for privacy is the norm these days not the way I was taught. When I was working and did extra hours filling in for an aide it got back to the office that I was the best one they had sent and could they send me again, of course they didn't that was not my job. I am not writing this to scare people with loved ones in N/H but to point out there may be valid reasons for patients to refuse care. They themselves may not understand why they have the fear but it is there. Your mom is very old and you can't be young and have very significant health problems so take care of yourself and accept that you have done everything possible for your mother's comfort and wellbeing. She may never be satisfied but deep down she knows she has a very caring daughter who loves her whatever she does or says. The reason she feels free to dump on you is that she knows you will still love her at the end of the day come what may. Keep calling her even if you have to cut it short, and send the flowers, food gifts, cards and anything else small she may like. Even if she throws them straight in the garbage at least she knows you care, and above all make peace with yourself.
If you need someone to tell you, let me do it. It would be my pleasure. YES, YOU ARE DOING ALL THAT YOU CAN. Hugs.
It might be difficult logistically, but the reward! That smile shell give you will make it so worth it. Find something for her to look forward to.