My mother - Monitoring her and also finding part-time support
Hi everyone. Thank you to anyone who has time to read my long introduction:
Four years ago my husband, young-adult child, and I moved in next door to my mother, who had been diagnosed with MCI around 2016, I think. She has not been diagnosed yet with AD, because she won't get the PET scan. However, she seems to be declining in a very similar way to her mother who died of AD—very gradually, with similar traits/behaviors. At this point, she has lost her short-term memory, with the exception of random things that stick for a while, she asks the same questions and repeats the same statements over and over, she gets confused about things, has lost sense of time, day, year, etc., and her anxiety has increased.
She still takes care of herself and her cat (though I’ve caught some slips with that). She makes her own breakfast and lunch, and we provide her dinner almost every night. We also grocery shop for her, and we take care of house maintenance and her bills. She does not drive, so I’ll take her on errands when I have time outside of work, and I take her to church weekly. The fact that she is still somewhat independent is in large part due to how incredibly organized she has been throughout her life.
There are two things I am struggling with right now. One is that even though I live next door to her and can pop over there anytime I am home, and of course I can call her, I don’t really see what goes on over there, because I don’t live with her. There have probably been several times when she has forgotten to feed her cat or fed her too much. I also can’t always keep track of Mom’s sleeping or bathing. I can tell she sleeps much more in the daytime, so I wonder how much she is wandering in the night. My sister has told me that when she visits, she observes Mom repeating a lot of actions at bedtime, such as checking doors and asking my sister this or that repeatedly, feeling anxious about maintaining her house and routine. I inspect her fridge and cupboards, so I see how fast the food is eaten, she looks well fed. I’ve been thinking of putting a camera in the kitchen or living room, but she would find it and probably get very upset, and I do want to respect her privacy while she is still independent. She always says how grateful she is to be aging in her own home, and her cat is a source a great security and happiness, but I think it's getting tough on her. And I need to see for myself. And then, how do I know when to make a change?
The other struggle I am facing (and is taking a toll on me) is that the only time my family and I can go anywhere overnight is if my sister is in town to stay with Mom. My sister lives across the country and still works full time, so her time off rarely coincides with a good time for us to get away. After 4 years, my family and I are feeling the strain of it. We need some freedom. We don’t know many people here, so I feel I need to pay someone for support.
Is it realistic to think I could find someone who could get to know her and maybe spend time with her once a week on a regular basis? Then once she feels good with the person, I could depend on that person if we needed a night away or a vacation? In that case, they could stay in our house. Or I guess they could stay in her guest room, if she is comfortable. I feel like this would also solve the problem of her boredom and lack of social interaction (except for church). She is not comfortable going to classes at our adult community center, and my schedule can’t accommodate going to any with her.
Sometimes I think she would thrive more and we’d feel better if she was in MC. We’ve had thoughts of moving back to where we came from, the region of the country we love so much, bringing her with us and getting her in a nice MC near us. I know I’m only 60, but I am feeling so tired and am wanting to settle down and plan for my own aging.
Thanks for listening. Any advice or support would be welcome.
Comments
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We were told at diagnosis that mom was not safe to live alone. I think there are so many little things you don’t think about that may be a problem and you don’t even realize it. When we moved mom to a nursing home I found several bags from the dentist with a new toothbrush and mini toothpaste. She had not changed her toothbrush in about 2 years. I just assumed when she got the new one she was swapping it out. What about the stove. Is it disassembled. Even if you say she never uses it, she could randomly decide to. She could burn the house down. What if she confuses cat food for tuna? She might clearly know the difference now, but that can change quickly. She may not wander now, but again she could start at any time. If you’re sleeping next door how would you know if she left her home? Her symptoms are only going to get worse. Does her home have steps to a basement? Can she navigate them? Many with dementia don’t recognize their symptoms or limitations. This means they can put themselves in very dangerous situations. I think the idea is to stay one step ahead of the symptoms when considering care. If you wait til she starts a fire on the stove before you consider it unsafe, that fire could be so much more than a warning she needs more care.
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It does sound like your gut feeling is that she is no longer capable of taking care of many things. I really don't think someone visiting once a week is going to help.
Do you have POA? Definitely good that you have taken over finances. You may have to take over feeding the cat on a regular basis. MIL is no longer capable of taking care of cat, but for quite a while, we were putting food for one day in a container. She could feed as much or as little as she wanted and when it was done, it was done 'til the next day. We did make sure cat did get the entire day's food by a certain time.
First thought that I would think is to have someone come every day for a few hours… to start. And up it from there if needed. If necessary, you could tell her she is helping them - either with 'hours for certification', or that the person 'just needs a little extra at this time'.
There are also MC's that have 'respite care' that she could stay for a week or two so you would get a break. Sounds like you are past due for at least a small vacation or break so you don't get burnout. If necessary, you could tell her she is "just there so her house could be checked out for 'electrical' or 'plumbing' to make sure it is ok" Whatever works.
Edit to add: You could probably put a camera in kitchen… most PWD's don't look up, but you could still probably put one where it wouldn't be obvious or noticeable at all. And I also think that is a great idea for MC near you where you are planning to move to.
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You have been given good advice. Yes, as you already know, there is a lot you can’t tell even from next door. If your instincts are telling you it’s time for MC, it’s time.
I will only add that (as a 61-yr-old), I strongly endorse having your mom in MC where you live, and your living where you want to.
I moved my dad to an MC near where I live and work. One of the best decisions I have ever made, for him and for me.
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Thank you. This was very helpful, and your final sentence really spoke to me loud and clear. "I think the idea is to stay one step ahead of the symptoms when considering care. If you wait til she starts a fire on the stove before you consider it unsafe, that fire could be so much more than a warning she needs more care." I think we have been waiting, in a sense, while we allow her to still enjoy her independence and perhaps, sense of normalcy? She still walks around her neighborhood and doesn't get lost. But are we waiting for her to get lost or something worse before we do something? Thanks again.
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Thanks so much for all the answers. I so appreciate it. Yes, I have POA. I'm going to see about having someone come in a little each day. And it may also prove helpful to have an outsider's view of things at her home. Grateful for this forum.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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