When is the right time to move my mom?
I know that no one can answer this question but me, and I know there probably isn’t a “right” time, but it is so hard to decide when I feel selfish and guilty and all I can do is cry when I think about it.
Mom is 96 and physically very healthy. She has dementia and she is legally blind. She has lived with me for over 2 years, since my father died. It’s just her and me and my dogs. I have caregivers for 4 hours a day, 5 days a week. I have to fit my entire life into those few hours. I am lonely because I have such a limited social life. I am doing my best, but when she gets obstinate, or when she makes absolutely no sense, I am often at a complete loss of how to handle that.
She uses a walker, but is still mobile. I spend all day and night giving her instructions on everything. I try to use the same words all the time. I help her with all her medications, her dentures, her hearing aids, dressing, showering, cutting up all her food and assisting her with eating it. She needs assistance with everything. I hate evenings when she sundowns. She is able to get to and use the toilet 90% of the time. I miss being able to talk to her.
At some point, I won’t be able to care for her at home anymore, especially if she loses her mobility. I am currently looking into MC and also Board and Care (RCF?). I am very much struggling with at what point should I move her into such a place. Is it better to do it sooner, while she’s still able to adjust, or should I wait until she’s more “far gone” when she won’t fully comprehend the situation? I’d love to discuss this with her, but that is of course not possible. And I feel tremendous guilt just thinking about moving her. Sometimes at night she doesn’t know where she is and she is scared and when I go into her room, she says, “Julie, thank God you’re here” and I am able to comfort her and get her to relax and go to sleep. Maybe she will react the same way with any caring person, but this is really, really hard for me. I do feel like I would be abandoning her to make my life better. Dementia runs in the family. I worry that hardly ever spending time with friends (I have no family nearby) is a risk factor for developing dementia. Also not getting enough sleep. Mom usually wakes me during my REM sleep, of course.
Thanks for all your hard-earned advice. I’m sincerely sorry you all have had to go through this too.
Best Answers
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First of all, I’m so sorry you have to go through this, too.
I chose to have my mother moved into a memory care facility when she was still verbal, mobile, able to use the restroom on her own, and able to dress herself. The only persisting symptom at the time was her memory loss of people, not being able to assess and weigh risk, and just forgetting what was food and what was not. We were afraid of her wandering as she no longer had access to her car, and she needed 24/7 supervision. She lived in her own home where her brother and his family lived on the second floor. But they could not watch her as much as she required, and I could not get her to move in with me. And later, she became too aggressive anyhow so she’d force feed my at the time 4 year old and try to feed my pets (a dog and cat) things like chocolate. The only option was to get her into a home. Of course it’s had its pros and cons of doing it at that stage. She was aware she was not in her home and when we’d visit it would be just her yelling at us to get her back home. We were advised not to visit for awhile and to let her acclimate. After about 2 months or so, she did a LOT better. Was still annoyed we didn’t take her home, but she forgot quickly what we argued about. And could not tell how long it had actually been with her away from home. I had immense guilt. My family came at me a lot for my decision, but no one else wanted to step up. I had quit my job and spent the majority of the time tending to her rather than my own child. Being a caregiver is all consuming, especially when you’re the only one.
Now that my mother is totally dependent, I’m glad she’s already been acclimated to the place since before she deteriorated this far. She views it a lot more like her safe space based on her behavior in the past year- and everyone knows her better too as they were able to meet her before she became non verbal. I don’t regret my decision, but I do wish we didn’t have to make the decision at all! My mental health has improved significantly since she’s been at the memory care facility. I felt, and feel, like now I can finally just be her daughter again rather than a caregiver/parent.
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To me, it sounds like your mom is at the point where she should definitely be moved. You are already basically providing 24/7 care, and that’s just too much for one person!
We moved my mom into AL while she was still pretty capable, and I am glad we did. I think she really would have struggled to adapt if we had waited much longer. The predictable schedule and the socialization have really helped her anxiety levels and even her cognition to some degree. She also is slowly learning to trust the staff, which is going to be important as she starts to require more help.
Moving her somewhere where trained professionals can care for her is not abandoning her! I do understand that kind of guilt; I often feel it myself. But your own health and wellbeing are very important!1 -
I’m so sorry, it’s so hard. I cried for weeks after I placed my dad. We’ve all been there.
You have to do what is best for both of you. Going days without sleep while providing 24/7 care is not sustainable. You are also putting your own health at risk, both physical and mental. Your mom would not want that, she would tell you this if she could.
It will be hard at first but the pain will ease. Once you see your mother adjusting you will feel better. I agree that it’s best to do so sooner rather than later. You’re still taking care of her, just in a different role. It’s not failing her, it’s caring for her by doing what’s best.1 -
I think you know when or if the time has come. I do not think anyone can tell you because you are the primary caregiver at home now and it is a personal decision on where your abilities and boundaries are.
My mom was in memory care for the last 18 months of her life and it was a nightmare. I was not POA though. Every time I visited, I had to brace myself for what new disaster I would be walking into. I would visit my mom, then leave the room to get a soft drink and I could hear her say as I left "God, please don't let Suzanne leave." I would come back and she would say, "oh, thank God you're still here".
She was in memory care, so other residents were at various stages of the disease. That exposes them to risks of behaviors of others. My mom had to deal with those variables that staff can not protect them from. I walked into her room once and the woman living across the hall had laid down at the foot of mom's bed while my mom was still sleep in it. I was aghast. I took a photo and got staff to remove the other woman from mom's room.
Another resident pushed my mom while my mom was simply walking down a hall. My mom fell down and broke her hip and needed surgery then was unable to walk on her own ever again. That accident would not have occurred if mom was living at home.
You cannot count on caregivers getting to know your parent and being compassionate to them or developing any relationship. Caregivers change in facilities very frequently so as soon any one of them "gets to know" your parent they are gone. It is unrealistic to think you can reach a level of stable peace of having consistency of care. In my view, the care was only as good as to just not get themselves sued.
If you have POA, you will have to remain diligent. It will still require your time, energy and thoughts. You will have to be the project manager of their care. You will have to visit frequently and insist on routine care meetings and keep taking notes and keep after the staff.
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I’m in a very similar situation. My Mom is quite a bit younger at 79. She is very physically active with no significant health issues other than Alzheimer’s. My Dad passed away almost 7 months ago and it was quite obvious that allowing her to remain at home was not a good idea. She lived with us in our home from the time that my Dad was hospitalized until Tuesday. I am an only child and had no help/input from anyone other than my husband and children and their spouses. I have the same genetic concerns that you have - her Mom and a cousin both had dementia/Alzheimer’s. I have a very technical job and have worked from home since Covid. I just could not keep up with her needs and the amount of oversight and intervention that she requires throughout the day. I also wanted her in AL before moving to MC if possible. I want her to get familiar with her new home and the staff and want the staff to get to know her and what is normal for her.
The biggest issues that we’ve had over the last few days are ones that I’m hoping will get better with time. She’s having issues figuring out the TV. They have DishTV rather than Comcast. We’ll have to work on that one. She doesn’t like the coffee (Keurig to the rescue! I should have it today.) or the soda (I’ll stock her up with some that she does like). She does seem to enjoy the social interaction throughout the day though and leaves her room often to participate in activities. I think that the move would have been easier if we had done it earlier. It feels wonderful to just be able to breathe again.
I wouldn’t say that I feel guilty. I feel horrible that this has happened to her and that she is in the position that she’s in. I didn’t cause it though and there is nothing that I can do that will change the outcome. I deserve to have a life. I took her with me to look at facilities and she chose where she wanted to live. My involvement doesn’t end here. Along with visiting her and making sure that she is well cared for, taking her to Dr appointments, etc I still have her finances, house, car, my Dad’s truck, etc to deal with. I’m doing the best that I can with what I have to work with. That’s really all that anyone can ask or expect of me.
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Hi Julie:
I too struggle with guilt with my Pop who lives in a tiny house in my backyard. I do have in home care and am working to get full time 24/7 care for him. I understand this is not always possible and it may not be possible for me either. I am dependent on the VA's assistance. However, I struggle with guilt of not being able to spend a lot of time with him. I work full time and run a seasonal farm. I am so exhausted when I get home, the thought of going back to sit with him sometimes is overwhelming…I feel so selfish. I too miss being able to talk to him about daily current events other than weather. He does not make sense most of the time. I keep hearing people tell me to take care of myself which I am not doing a good job at. The sundowning is grueling and upsetting. Its hard to say when you need to make that move, yes it is up to you but I hear others say how it helped them so much and made for more meaningful visits and time together.
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Answers
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That’s a great point, that the caregivers could get to know her personality a little before it’s gone. Thanks, Gigi.
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Perfectly said in so many ways!
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Thank you all for your helpful replies. I am looking at places close by and I will visit my mom every day. As to the timing, I have much to consider in making this difficult decision. I owe most of the good things in my life to my mom because of what she taught me and how she gave me self-confidence and a good work ethic. I just don’t want to let her down. God, I miss her SO much.
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I am so so sorry you are going through this. It is never easy. It was a hard decision for me to put mom in MC but it came about when I was unable to manage her care safely at home. This was based on what I was observing with her and my own capacity to take care of her. Safety issues started to pop up (leaving stoves on, mom accidentally closing the garage on herself) and I asked myself if it would be worse for her to be in a safer environment or for something terrible to happen at home. I would say you are the best one to determine when it's time for mom to receive additional care or support. You've done so much for her, and even if she can't express it, it is impactful and a form of expressing love towards her. This will continue if you decide it is time for her to get full-time support outside of your home.
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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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