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My mother has congestive heart failure and AFib. Her osteoporosis has her getting weaker and more pained every day. Soon she will not be able to care for my father, who has Alzheimer's. She will not discuss a plan with us because it's too upsetting. She just keeps crying "What are we going to do? I can't stand the thought of him being locked up away from me." In her mind, she's the only one who can properly care for him.


Please help. I have no idea where to go from here. They are in assisted living, and COVID has made this unbearable. She would need me or one of my siblings with her 24/7 in order to continue caring for Dad, and that's just not possible.

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Imho, they quite possibly require a higher level of care. Perhaps you can investigate if that is availiable in this facility.
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Nothing, and I repeat nothing takes care of a senior person than a loving family. I know you indicated that your parents are in a ALF. Is it possible to take care of them in your home with help? Can you rent a place nearby for both of them to live with help.? Just try to think out of the box for solutions.
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disgustedtoo Jul 2020
OP did say "She would need me or one of my siblings with her 24/7 in order to continue caring for Dad, and that's just not possible." More than likely OP and siblings are still working - giving up employment for who knows how many years, one would lose retirement savings AND reduce SS, so they may not have funds for themselves in their own time of need!

Taking it one step further... while there are differences in home care by family vs care in a facility, you shouldn't paint home care or facility care with any kind of broad brush like that. I know there is NO way I could take care of my mother in my home. She outweighs me by a lot, I have back issues, so I can't support her weight to help her at all - she won't stand or walk unassisted. Even when she still could, I would not have been able to assist her if she fell or needed help. She also couldn't and can't do stairs, which is the only way into my home. Necessary home repairs are on hold and have been for some time, so it isn't a safe place for her. Neither bathroom is large enough to even think about making it handicap accessible.

Rental - same issues with being unable to assist her, but add to that incontinence and lord knows what else she could do to a rental. I wouldn't do that to anyone else's property! I also learned during prep for selling mom's condo that you can't leave a property unoccupied unless you get expensive insurance (if you move to rental, who is living in the home?)

Final thought, which probably doesn't apply to OP, but it DOES to many others - we didn't all have a Leave it to Beaver upbringing. Sometimes it gets worse after the kids grow up. Siblings or parents can be at your throat (or purse strings!) Relationships can be fraught with discord and/or being older ourselves, we have our own physical limitations.

IF and ONLY IF one can provide ALL the care, even if it is 24/7, and one wants to do this and has the skills to do it, so be it. But it isn't for everyone. Saying it is best is a generalization and is wrong in many cases. So many harp about how they took care of us as babies and children, but other than dementia sometimes making some of them more child-like, there is NO comparison. My "babies" did not outweigh me and over time learned to become more and more self-sufficient.
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COVID has made many things unbearable, but we have to make wise decisions and live through it. Some assisted living facilities provide continuous care as our loved ones decline in health and capability, including memory care and skilled nursing. It sounds like your parents may need to move into a facility that can provide more care.
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At my mom's assisted living they gave her as much help as she needed. There was also a separate memory care unit on another floor, if needed. Hope all goes well for you.
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Is she receiving treatment for her osteoporosis? That should be her 1st step, there is no reason that she should be getting weaker from that. The treatments are effective.

You are going to have to play the bad guy and make her face the reality. He may have to go to the memory care part of the assisted living, if theirs is a continuing care facility. If not that is what you should be looking for. That way she can still be with him during the day or maybe they will let her move in and share a room.

Present it to her that makes her understand that she looses options by not planning ahead.

Does she understand that you guys will not be picking up the slack in his care?
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Doingmybest101 Jul 2020
This week has been an eye-opener for her. She had a UTI, and needed me there for a week. The only way I could get in to help was to "move in". Once I leave I can't come back in.
I think she finally realized that it's not fair to remove me from my family because they didn't plan ahead of time. Big decisions to be made soon.
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I’m so sorry you and your parents are going through this now, but the advice you’ve received so far is spot on.

It was right at one year ago when when I came to the very difficult decision to move my father into memory care. My mom had been taking care of him, refusing help from anyone but me, for the last few years and her health was declining rapidly. She was so sad and it broke my heart to separate them (she adamantly refused to go with him) but, as AnnReid said, there were simply no good options. When I finally accepted the fact that none of our options would make them happy again, I was able to have a sense of peace about it.

This quote from M. Scott Peck has helped: “Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult-once we truly understand and except it-then life is no longer difficult. Because once it is excepted, the fact that life is difficult no longer matters.”


It took Mom two weeks to be able to even leave her house because she was so fatigued.

This forum has helped me through this past year so much. The advice I have received from so many caring, experienced people have made the difference. Please keep using it.

Also, your user name says it all.
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Doingmybest101 Jul 2020
Thank you. It helps so much to know I'm not alone.
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Dear Doingmybest101,

I agree wholeheartedly with "disgustedtoo". That would be an excellent way to handle the situation. I have seen that at my mom's previous AL facility.
There was a husband and wife who were living there - she had advanced dementia and he had no cognitive issues. Eventually, she had to be placed in their memory care unit and he of course went with her until she passed away.

And I understand how you feel about the fact that COVID has made the situation all the more unbearable. Just know that all the caregivers on this forum are dealing with the same issues relating to the pandemic.

Take the reins and when your mom asks "what are we going to do... say "we're going to have you both together in a memory care apartment". I think if she knew she could be with him in this type of situation, she will be receptive to it and may even be able to have a discussion about it. Right now, she is overcome by feelings of helplessness and fear - this could give her some peace of mind and you as well.

Good luck to all of you and I hope you will give all of us an update as things get a little more settled!
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Doingmybest101 Jul 2020
Thank you. We're heading into a very difficult week...
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If they are in assisted living, there may be extra help available. I would check with the facility. God bless, trust Him
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Oh dear; how very sad for your mom. And undoubtedly, caring for your dad is taking a toll on her health and shortening her life.

Is there Memory Care on the same campus perhaps?
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As AlvaDeer asked, is there a memory care wing associated with this AL? If so, the best option would be to transfer BOTH of them to that wing. She can live there even though she doesn't have cognitive decline yet. That way he won't be "locked up away from" her. Given that she also needs assistance, she might get a little more care that she needs as well.

In mom's MC unit, there are many who seem still capable (clearly there are memory issues, but they manage well with some help.) She would be more like those residents, but still be able to "care" for him (more advocate and request help when it is needed), not be separated from him AND get the help she needs for his care.

If she passes first, which is a possibility, he will need to move anyway. Why not have it done now? If he passed first, she may be able to transition back to AL or if need be to a NH. If they don't have a memory wing, then it would be best to start searching for one that would accept both of them (many do offer rooms for couples) that has open space and would take in new residents at this time.
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mterpin Jul 2020
My Dad also had Azh, and my Mom has dementia. When my Dad took a downturn, we moved them both into the memory care unit of the assisted living home they were in. It worked out very well, except that my Mom complained about being locked up. The facility gave her a key to the elevator, so that she could come and go as she pleased. That approach got us all through a difficult time until my Dad passed. Mom has since moved out of the memory care unit and is pretty happy there - especially since the Covid crisis hit. She has come to regard it as her safe place.
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Caregiving at this level often becomes making the best choice from a selection of less than good choices.
If mom is physically unable to care for dad, her safety and his safety may need to become the most important aspects of decision making.
AlvaDeer has provided a realistic template for life as a disabled Senior In these terrible times.
Get the input from the facility as soon as you are able to contact them. Their objective perspective may help you develop a couple pathways to offer Mom, thereby giving her a choice.

Hope you can all find some direction towards safety and peace.
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katiekat2009 Jul 2020
Love your first statement and agree wholeheartedly.
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Is there a memory care facility within the assisted living? Have you discussed options with the facility? Do they have any ideas for you? I understand that this is very sad, but this is a fact of life in these days that we live to this old age. No one will like it and now you cannot be with her to comfort her. She will mourn; this is worth mourning. Don't try to "fix it", because not everything can be fixed. Assure her you will check all the options for them and try to work out what is the best of them. There really isn't any other answer is there? Sometimes you just need to say that you understand the grief and that you are so sorry and you wish they were not faced with this. Sometimes that is all there is to say.
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Doingmybest101 Jul 2020
I agree. Thank you so much.
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