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Hello friends,

I have a sudden dilemma. We had a family meeting this past weekend regarding my mom's finances. She is 90 and in assisted living. We put her there after she was in the hospital on and off for a month last summer. The outcome of the meeting is that we would have to sell her house so she can remain there. This isn't bad but as you will see below she could outlive her funds.

Mom's history is: She has had two heart attacks and now has congestive heart failure; she broke a hip; had a couple of little strokes; and a stomach bleed requiring transfusions. She has been diagnosed with moderate dementia and can't bathe or dress herself without help. She also wears hearing aids and has macular degeneration so she is trying to function with a great deal of sensory deprivation (even with her hearing aids she doesn't hear well.)

My dilemmas are many but the major one is should she stay there or come to live with me? Here is a snapshot of the family dynamic:

1. When I go to visit her twice a week I always feel so guilty leaving her there. She looks so sad when I leave and always says at some point during our visit that, "This is a nice place but it's not family." I'm beginning to dread these visits because I leave feeling like I'm abandoning her.
2. There are four of us "children" but three of us work. None of them can take mom to live with them and since I am a retired widow it follows that it would make sense for her to come live with me.
3. After our family meeting I got the impression that my siblings were mildly disappointed that I didn't volunteer on the spot to move her here. I have actually tried this three times and couldn't handle it alone. The physical care was doable but I know if I moved her here I would need agency help to do this long term. I also didn't sleep well because I felt the need to keep checking on her all night to make sure she hadn't fallen. She sometimes has difficulty standing until she gets her balance. If I moved her here her money would go further but the bulk of her 24/7 care would be mine alone. Her mother lived to be 94 so even with mom's physical problems she could live many more years.
4. One concern about moving her is that when she comes here she doesn't want to do much. I purchased a transport chair so that I could take her out but she either says she doesn't want to go or she goes and wants to get right back. I understand this because she tires easily even sitting in the chair. On short visits this isn't an issue but if she were here permanently it would become an issue.
5. A BIG concern, and probably the most wearing thing about her, is her personality. She always sees the glass as half empty and what she likes to do most is to sit at the kitchen table and talk about negative things. She repeats stories of old hurts, family tragedies, daddy's death and "how he left her," current frustrations, issues with my siblings, etc. When I try to change the subject it only works for a little while and then it's right back to the negative. I accept that this is who she is now but it doesn't make it any easier to be around her for very long.

I must confess that I feel like a prisoner when she comes. The longest I've had her was for a week and a half and by the end of that time I found myself on edge, depressed and drained. I say with much shame that I couldn't wait to take her back.

6. Lastly, I've been told by professionals and those who have tried to care for a parent in this condition to leave her where she is because CHF and dementia are progressive diseases. On one hand I know this is good advice but on the other hand I just can't shake the feeling that I might be making a mistake that I will later regret.

My question to the group is this. Am I being selfish or doing the right thing for both of us by having mom remain in assisted living?

As always, thanks for being my sounding board.

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Thanks, again. I'll talk to the director.
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Some private pay places do accept Medicaid from residents who have been private-pay for X years. They don't advertise this, necessarily, (and the services they offer have to qualify for Medicaid, of course), but that is why I suggest you have the discussion at the facility she is in now, first.

From everything I've heard, places that accept both Medicaid and Private Pay treat all their residents alike in terms of care. The Medicaid recipients may have to use a shared room, if those are available.
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Thank you for your swift and detailed reply. I'm printing it out so I can read it over and over again. It helped me to be able to put things in the proper perspective. When you mull things over day and night you really get confused after a while. I feel so very responsible for making the right decision because I have POA for healthcare; my sister has POA for her finances.

I appreciate the advice on finding the right place for long term. Her living facility is private pay so it's pricey but we thought she deserved the nicest place we could find. I would have to move her to a place that accepts Medicaid.
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No, Hannah44, you should not move your mother out of assisted living, until/unless she needs more care than they can provide and then you should move her into a skilled nusing facility.

1. Yes, it is sad to visit a loved one in a facility, and it can stir up feelings of guilt. Learn to live with those feelings but do not let them drive decisions. You are not abandoning your mother. You obviously care for her and continue to visit in spite of being uncomfortable. (If you let your discomfort stop you from visiting, that would be abandonment.)
2. It does NOT follow that the oldest child or the only daughter or the one with the largest house or the one who doesn't work should become a fullgime caregiver 24/7. Nonsense. What if we reversed that and said the three children who work should pitch in and pay for mother's care. After all, they are the ones with the money, right? Or the widowed unemployed child should inherit everything. Huh? Basing decisions on who "should" relate certain ways to a parent is, excuse me, studpid.
3. I have no doubt that your siblings were disappointed. So? Is your mission in life to prevent their disappointment? How hard to they work to prevent your disappointment? You have already had an ample sample of the caregiving role would be like. Have they?
4. You do not want to be imprisoned in your own house. Professional caregivers at a care center do it in shifts, and then go home to their life outside of the care center. What if your home BECOMES the care center, and there are no other shifts of fresh, rested caregiver to spell you?
5. Bless you for accepting your mother as she is. And congratulations on realizing who you are, and that you cannot tolerate long doses of who she is, up close and personal.
6. CHF and dementia are progressive, and even if you could care for her in your home adequately now, it is unlikely you would be able to right up to the end.

Your mother may outlive her funds. In fact, let's hope she does. When that happens she will be eligible for Medicaid, like many, many people in their 90s who run out of funds as the entire population lives longer.

Discuss with the administrator where she is now what will happen if/when she runs out of funds. Do they accept Medicaid from long-term private pay residents? If Mother has to move to receive a higher level of care as her conditions progress, only consider facilities that will accept Medicaid, in case she needs that down the road.

You are doing the right things for both you and your mother (and, actually your siblings, too, but don't expect them to realize it) by having her remain in a professional care center.

If the issue is "how do we make sure the care can continue when she runs out of money?" then seek answers by talking to the appropriate staff and the center she is at now, at any centers she might need to be moved to, and perhaps an Elder Law attorney or an estate planner.
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