Widowed mom with dementia, living across the country
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Anonymous
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Has anyone been in a similar situation and could provide some insights and advice?
My mom has dementia, its been progressing so that I don't think she will be able to be 100% independent for much longer. She does not understand which doctors appointments she needs, and even if she does, she is non-compliant. She does not eat a normal diet (just bread and cheese with cold cuts), she gets lost unless its a very familiar walk. My sister lives in a suburb nearby, but due to her own health, work and other issues, she does not think she can visit more than once a week, maybe twice. I live very far from home, and could not spend more than a few months per year there, and that's due to extreme luck of having a remote job. My mom would love to move in with me and have me be her caregiver. Here is the issue: I have kids, a job, a husband and my own health issues. I do not take the time that I would need to remain healthy myself, as I just don't have it. How would I take my mom to doctors appointments, etc if I don't even get to go to my own? How will I take care of her emotional needs, when I am ana introvert and need alone time? I am wiped out after a day of work... she is also much less familiar wiht my neighborhood than her own. None of the options seem good - if she stays and has local support, it would make her very sad, Shed get a visit from my sister once a week, but would be lonely otherwise. If she stays with me, it would be a huge financial sacrifice for us (higher COL), and it would probably deteriorate my own health significantly. I have no good solution. Anyone BTDT? Any advice? TIA! |
Anonymous
| OP again. Adult daycare wouldn't work for her, she does not like anyone other than my sister and me and my kids. Also, she gets very confused if more than 1 person speaks in a conversation. She would hate it. |
Anonymous
| I mean, she's going to have to deal with a caregiver, that's the bottom line. At a certain point it doesn't matter if she likes it, it's the only way to keep her safe. |
Anonymous
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No no no no. The only solution is institutional care, ie a nursing home or memory care unit. Look for something that has progressive care, since she'll need more supervision as time goes on. If she's indigent, then look for medicaid homes.
None of you can take adequate care of her, I hope you realize that. By the time my grandfather got lost on everything but the most familiar walks, it was time for him to go to a home - my grandmother could not care for him. She couldn't run across town looking for him, or deal with his anxiety and anger issues stemming from the dementia. |
Anonymous
Yes, that's probably true. But we are close, and she visits us for several months every year. She would be heartbroken if those vists with us had to stop. I would visit her for a few months per year, but realistically, the kids can only be there during the summer (which is what we do, and we take a few shorter trips from there). She would not be party of our household like she is now. I think that would make her very sad. OTOH, assuaging my guilty conscience - she never visited her dad, we spend 2 afternoons per year there and he only lived a 45 minute car ride away from us. I would have liked to have a closer relationship with him, looking back. He was a very kind and interesting person. I never got to know him really. |
Anonymous
OP. She could get 24 hour care in her home from social services where she lives. She could afford it there. I cannot offer this to her where I live. |
Anonymous
| OP. I am also a bit angry - she refused evaluations and doctors appointments up until now, and she still does not agree that she has an issue. The neurologists confirmed that she would be doing much better if she had sought proper care and taken medications to lower her blood pressure. I had begged her to go see a doctor since 2019. Same with my sister, who has been begging her since 2021. Now she does not have a strong resistance anymore, and I was able to take her directly to a neurologist, who confirmed everything in an MRI. |
Anonymous
That seems an acceptable stopgap. But do research the nursing homes, ideally near one of her children. It will be the next step, and sometimes there's a waiting list. |
Anonymous
No need to be angry, OP. It's sadly the norm for the elderly. It's the rare patient that actually acknowledges they have cognitive decline and accepts early treatment. My father is showing early signs, and I'm trying to persuade him to get to a neurologist for a baseline test. He's nice enough to say he's fine with going, but mysteriously keeps stalling! |
Anonymous
This. My mom is the same and when we moved her closer, I killed myself for 2 years supporting her bc she refused help. I’m certain I lost years of my life from the stress. She’s now in memory care and the burden of getting her to doctor appointments, addressing issues w the staff where she lives, running errands for things she needs, and visiting regularly for her well/being and to ensure she’s being treated well, is still brutal. But it’s not nearly as bad as it was when I was supporting her independent living and I can’t imagine the hell my family would be in right now if she lived w us. This is a heartbreaking disease that is absolutely crushing for the caregiver as it progresses. Having young kids while managing it all is especially hard. I’d bring in help now so she can get comfortable receiving support from outsiders before things get worse. It’s really the only way to do this w/o ruining your own health. I’m sorry, op. Hugs to you from someone who’s going through it too. |
Anonymous
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My heart goes out to you OP. I’m facing something similar soon. All I know is someone with dementia must be vigilantly looked after asap, hopefully by a loved one.
What that means depends on your job and financial situation, your kids and their needs, how much time you have to spare, what your mom will most likely need one or two years from now, everyone’s housing situation and needs. |
Anonymous
NO. Dementia is HELL if the kids take in their parents. Do not do this to your family, OP. And the PP is insane to suggest it, all the more so that they haven't actually lived it or been exposed to such a situation. Someone in the family is either rich enough to pay for round-the-clock aides, or a memory unit then nursing home; or it's a long path to government-funded homes. |
Anonymous
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Agree, it takes *a lot* to care for someone with dementia.
My FIL had it, but he had his wife to take care of him. My mother has a bit of it, and thank God, my single sister lives close by. It was hard on her to work and take care of her, so we agreed that she would quit her job, and look after her FT. My dad is useless taking care of my mom, but he agreed to help take care of my sister's bills because she now does everything for both of them (cooking, dr's appts, shopping, etc). We also help her financially. I have another sister who doesn't work and who is an empty nester but she lives across the country. But, she also visits my parents several times per year and helps out. I can't as easily because of kids and work. If I didn't have my sisters, I would have to hire someone. I cannot quit my job, and the stress of taking care of kids and elderly parents would wear on me to the point I'd probably need medical care. Also, eventually, the dementia patient can become physical with people around them. My FIL at one point sort of pushed his wife out of the house because he thought she was a stranger. Dementia is awful. I had a conversation about what would happen if either of us got dementia as we both have a parent with it. |
Anonymous
When your mom refused help, how did she manage? Were you able to convince her that she needed help? My mom has been taking her medication all wrong and refuses to let me give it to her at the right times and I don’t know what to do. She’s visiting and even though she’s been here a million times over the last 10 years (same house), maybe this isn’t enough of a routine? I feel like it confuses her. So sad this morning. |
Anonymous
This. It gets worse and worse and with a fall, health event of family stressor the decline can be at record speed. Also, she may not like it, but her brain needs social connection with people other than family. It can be way to easy to be difficult and ornery with family. With strangers you are forced to exercise social skills and that is crucial. Some may be offended by this comparison, but think about your toddler who didn't want to go to preschool or daycare and just wanted to be with you all day even if you had to work. Then think about how much better off your toddler was having activities and social interactions with peers while adults kept them relatively safe. Yes, they teachers missed plenty and your toddler got bonked in the head, bitten and shoved, but under your care your tot had plenty of split second accidents when you turned your head to sneeze or answer the door. Think about how much more cheerful and pleasant YOU could be for your toddler because you weren't with the tot every second. Could you have chosen to leave your tot at home with no caregiver or with a caregiver who just showed up a few hours a day and then left her to her own devices? Some will say, no don't torture the elderly with this evil residential places, but many of us have chimed in to say our parents did better there once they adjusted and it made for much better visits where you could just savor the time and not be burned out and resentful. |