My mother has been living in my home for the past six years. She is in good shape financially and in relatively good shape physically. Her state of dementia is severe. Most of the time, having her here is doable. I am able to have a caregiver during the day for about five hours/day. The struggle is what is the right thing to do. I have always believed in the concept of caring for our ageing parents. When I read the comments from folks on this forum, I almost feel like a fool. It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility. At times, when she is whining incessantly, and I just want some space, I think that a facility is the answer. Then, I agonize over how poorly it would work for her. She is needy, like a child needing constant attention. I had her in senior day care and she was kicked out because they couldn't give her the attention she was demanding. I know that she is happy here with me and my husband. Am I being an idiot for not putting her elsewhere? The internal struggle is so difficult because I know that having her here affects us all. My daughter, who has been here for the past year due to Covid, has really bonded with her grandmother. My daughter adores her grandmother and the time that she spends with her. The antics that my mother exhibits drives me crazy and my daughter is able to see humor and be compassionate. I can be that way much of the time, but then there are those days when she is going through her late afternoon craziness and I just want her gone. I know that she will continue to deteriorate. She has since I first moved her into my home. I just don't know what decision I can live with internally. For a little background, my father was dying and I drove him across the country and into a facility for his last month. He didn't want to die away from family. I saw him sporadically while he was still alive since it was an effort to find the time to be with him. That was two years ago. To this day, I suffer that I wasn't available for those final weeks. It haunts me. I don't want to feel that way with my mother.
"It seems that most of what I read on this site encourages family members to put their LO in an appropriate facility."
This recommendation should be reserved for those who are at the end of their rope, or will be soon. One person trying to do everything is going to burnout. The problem is many don't have the financial resources to pay for a facility and the LO doesn't qualify for Medicaid (most states don't cover AL/MC, many with dementia don't qualify for NHs.) For those who have help and want to do it, it might be better to keep the LO at home. For those who don't, one person can't do it all.
"At times, when she is whining incessantly, and I just want some space, I think that a facility is the answer."
Again, this may be resolved by increasing caregiver time. You mention late afternoon tends to be meltdown time. Consider some mild medication to help with this. Sun-downing is VERY common and generally occurs later afternoon. There are non-medication suggestions, but often those don't work well enough. The only time my mother was "out of control" late afternoon/early evening was due to a UTI. Antibiotics and low dose Lorazepam (during treatment only) took care of that.
"I know that she is happy here with me and my husband. Am I being an idiot for not putting her elsewhere?"
No, you're not an idiot for keeping her home. It's a struggle to know what's best, but if you can get someone who can help "entertain" her and find ways to keep her busy, it can still work. You need time for yourself, time to get out, do things YOU enjoy and be away from her "neediness". It's in many ways like having a toddler, but different. It can get under your skin, the repetition, the unending help she needs with ADLs, etc. The key is having the right resources to help. Since you say she's relatively healthy and okay financially, perhaps bringing in more assistance will help.
"My daughter, who has been here for the past year due to Covid, has really bonded with her grandmother. My daughter adores her grandmother and the time that she spends with her. The antics that my mother exhibits drives me crazy and my daughter is able to see humor and be compassionate."
That's a big help! Given they get along and she enjoys spending time with her takes some load off you. My grandmother (no dementia) lived with us part of the time and with my mother's sisters. I appreciated the time I had with her. Dementia puts a wrinkle into care, and it's too much for one person. With the right help it can work. Something staff suggests - rather than letting her antics annoy you, join her in the "moment" if you can. Sometimes there can be some humor in it.
"I know that she will continue to deteriorate."
She'll regress in time. She'll have more difficulty getting around and doing for herself. I'm a senior with physical limitations, and my house isn't safe for my mother to have lived in. Instead I found the best place for her, managed her affairs and visited as often as I could. At some point she may become bedridden. That'll require a lot more in-home care or a facility. When you really feel the care you and help can provide isn't working, then a facility might be the answer.
"To this day, I suffer that I wasn't available for those final weeks. It haunts me. I don't want to feel that way with my mother."
This is also a personal dilemma. My mother wasn't close enough for me to check on her daily or provide the care she needed. Hiring help didn't work, as she considered herself "fine" and refused to let them in. I selected a place close to where I live so that I could monitor her care and be there for her.
My mother's place was always coming up with activities, mostly in situ, but some outings as well, for those who could still manage them. Any time I visited (varied day and time, no warning to staff!), mom was clean, well fed and relatively happy. While she wouldn't participate in some activities (light exercise, oh no, I did that for years, I don't need to do that now!), most of the time she would join in.
Socialization is something that is recommended, to help keep the LO "stimulated" and active. One person at home doing ALL the tasks needed can't possibly keep the LO entertained most of the day! It is one of the benefits of choosing to use a facility. There are perks either way, depending on resources available. So it comes down to finances and how long one can continue to give every day. There's no real right or wrong choice, but all too often the choices are limited.
My girls saw humor in the situation too, but they weren't here 24/7. They weren't bathing, dressing and toileting her. Mom could do nothing for herself other than feeding herself. Itvwas like having a toddler again.
Like, but not... Although my kids were both on the larger side at birth (son was almost 9.5lbs! and I'm like 5'2", about 110lbs before pregnancy!) they certainly were not ADULT sized! Being a senior myself at the time with some physical limitations, there's no way I could provide the care needed for a 140lb "toddler"!
Remember, if you decide to relocate your mom, that although she may no longer be in your direct care, you are still caring for her ( and yourself) in providing her a safe, comfortable environment where the staff is trained to provide for her well being.
Hi- do you have a source for this info by any chance? TIA!
Your response about being a "burned out caregiver" is me all over x
Care giving someone is hard. Care giving someone with advanced dementia is nearly impossible to do. I am glad that you are getting 5 hours of help a day. And your daughter spends time with her too. That all helps make the situation somewhat livable although still quite difficult and demanding.
Can you talk with someone about this decision? Make yourself a pro/con chart? You don't have to do as much as humanly possible to be able to live with yourself without guilt. You deserve to have a life and freedom to be happy and spend your time in ways that benefit you.
Your mom is probably happier at your home. She's comfortable there, etc. BUT she is also a lot of work and as you know it is only going to get worse. 24/7 care is VERY demanding and you will get burnt out and suffer physically and/or mentally when you are doing too much.
I would start looking into places. Find one or two you like. If there's a waiting list, put her on it. You can always pass at the time and go back to the bottom of the list. When she has a bit of decline, that might be the proper time to move her into a facility.
Again, there are no right or wrong answers. You don't have to wait until you are beyond done. It is reasonable to put yourself on the list of important things and not just put your mom first in all cases. There are pros and cons to either option and do not beat yourself up about the cons of placing her somewhere. Nothing is perfect.
You need to forgive yourself regarding your dad. You did what you could at the time, what you thought was best. It's really not fair to second guess yourself. Even if your solution wasn't perfect, nothing really is so give yourself permission to be an imperfect human being. Like the rest of us.