Disheartened that memory care is recommended-help please

Mckangel

I “put” my 91 year old mother in AL in November due to delusions/paranoia/hallucinations. She longed to go home and it was heartbreaking to hear nearly daily. She began to isolate more and not go to the dining room. The Nurse Practitioner changed some meds, and it seemed she became angrier, not violent or verbally abusive, but angry nonetheless. During this time, she complained of shortness of breath and was hospitalized with pneumonia. She was convinced she was going back to her house upon discharge. She was returned to her AL facility with oxygen (just a low amount) and was acting very weak. The facility was not prepared for this; it was not so much that she was on oxygen, but she could not do it herself. That was on a Friday evening. Sunday morning, she supposedly had a “ soft fall” and complained of hip pain. She was taken to the ER. Nothing was broken, but the ER doctor rehospitalized her. Nothing really out of the ordinary in her labs or scans. The hospital sent her to a short term rehab for some physical therapy and to wean her off oxygen. During this time, it has been a roller coaster, but she finally seems to accept she cannot return to her house and is looking forward to getting back to her AL facility. She does remember the nice residents there and staff, and doesn’t seem to remember why she complained so much about it. She had started to resist doing her physical therapy at the rehab center although she has latched on to a particularly kind nurse. Today I was told (not officially) but through a staff member that memory care is going to be recommended which means a different facility. My mother is not a wanderer, and her attitude has mellowed toward her facility. I do realize this could change in a heartbeat, but I was so encouraged about her realizing “home alone “ was out of the question. Now it appears I will have to break her heart and go through this nightmare all over again. Her current AL may not take her back even though physically she is getting around without a walker. Memory care to me implies high cost and lockdown and I don’t know if she’s ready for that extreme. At the same time, if she did return there and it didn’t work out, it’s square one again. I was so hopeful we could make it work this time with promises of getting her out a few times a week for visits, shopping etc. and now I’m just crushed about going through all this again, not only for me, but due to the fact she was actually looking forward to going back there. Thank you for listening to this long story; I’ve had my head in my hands all day thinking of how cheerful she was this morning.

BassetHoundAnn

Hi, McKangel, You and your mom have certainly been through a heckuva rollercoaster ride. I would be up sleepless on a Saturday night too. (In fact I've been there.<g&gt Let's unpack some of the elements:

* Your mom's anger and medication. Is she still suffering such intense anger at the rehab facility, or has she mellowed?

Who is responsible for putting your mom on psych medication? Surely not a nurse practitioner? Has her primary care physician been involved in this decision? Have you been involved in the discussion as medical POA? 

You need to discuss this medication change with the physician responsible for it, and discuss whether it's appropriate. Your mom's mood problems need to be addressed before she is returned to the AL or she is moved to MC. That is the first problem. 

* Why specifically is the rehab suggesting that she be moved to memory care? What specific behaviors do they think make her a good choice for MC? She may in fact be best suited for MC, but you should speak with the person in charge at the rehab facility who is making this recommendation and ask them why MC be a better fit for your mom than AL. 

* How is it that anyone at the rehab facility can know that the AL residence will not take your mom back if they recommend MC? Have they spoken to anyone there? Have you spoken to them? Please do so if you have not. That will help clarify the situation. 

I was in a very similar situation with my mom about a year ago. It also occurred on a weekend, and man it left me with some sleepless nights! My mom had fallen at her memory care. It was late Friday night. She was sent to the ER. They decided to hospitalize her because she was dehydrated from the flu/diarrhea and needed IV fluids. Since the hospital didn't have a room they transferred her to another hospital. At that hospital they put her through all sorts of rehab--including occupational therapy!--on a Sunday morning!! And then they later billed us thousands of dollars for this. The rehab people said my mom needed to be sent to a different memory care facility that could better handle her falls. Then the hospital social worker called me and said her current memory care did not want her back because of her falls. That wasn't at all true. Both the attending physician and the social worker said they would discharge her to a different memory care, most likely in another city. It wasn't until Monday morning when sensible people were back in their offices when I could make calls and get everything straightened out, and get my mom back to her memory care. But man I sure had a weekend full of anger, outrage and uncertainty over all this. 

So please try to remain calm amid the craziness. Get some sleep if you can. Make the calls on Monday morning to learn the specifics of the situation and the recommendations for your mom. Things are probably not as dire as the rehab people claim. Talk to the assisted living head of nursing as well to get their take on your mom's capabilities. And remind yourself that everything will straighten out eventually. Things are never as bad as they seem on a sleepless Saturday night. <g> 

M1

Im sorry too McK.  I don't know that this helps, but:  it's frequently said on these boards that by the time families consider AL, that ship has sailed and MC is more likely needed.  But the way it was handled does sound less than ideal.  

There was a big article in the Washington Post yesterday about the costs of dementia care and how most families and Baby Boomers are not prepared for it, and how much worse it's gotten with the pandemic  That's not relevant to your mom, so much--but something we are all struggling with.  

Mckangel

Thank you for the replies, they are much appreciated. Her anger has mellowed in the rehab; when the second hospitalization happened, she was in the process of coming off a fairly high dose of antidepressant and going on a mood stabilizer. She is also on a medication for memory, which at her age of almost 92, I’m not sure is practical. It was her original AL facility head nurse who said she would have to be evaluated before returning.  It is a small facility, maybe 28 to 30 residents. I have heard it referred to as “lite Assisted Living “.  That having been said, it is very clean, and the food is wonderful. I was told they have a nurse 5 days a week and the other hours are filled with aides and caregivers. The director recently stepped down, and the owner is acting director and not very available.  I will make the calls tomorrow morning or try and speak with the director of nursing at the rehab center. Calls to the admissions director and social worker were not returned, although I know several people have quit there recently and they are short staffed as seems to be the norm every where. Thank you for the encouragement, and I will try to have faith everything will work out. I agree that it is very possible she may need more than her current AL can provide and I do have a concern if she returned, it may only be for a short time. I’m the only surviving child and feeling a tremendous amount of pressure to do the right thing. Again, thanks for listening .

Anonymousjpl123

McKangel,

My heart goes out to you because I am one of the people on this board who only last October went through the same agonizing decision (assisted living or memory care). My mom is a bit younger than yours at 81, so I wasn’t sure. Lucky we found someplace with stages of care, so for now she is doing great in assisted living but if/when she needs to move it’s just a different floor. Many people in the assisted living have memory issues of one kind or another. 

Here are my two cents: you did what you thought was very best for your mom. You know her better than anyone, and maybe AL was all she could imagine at the time. Now she may need something else. That said, there is just no perfect way to do this. 

Keep calling and talking to the AL, and maybe check out a few memory care facilities to see what is out there. Of course this all needs tone within your finances. 

It’s a nightmare, but you are doing all the right things. 

One other thought: would it be possible to bring in extra help a few days a week in AL? What has worked for me (though it takes a toll) is I life 10 minutes away so I can go there anytime my mom seems off or struggling. I keep tabs on her. You might be able to talk to rhe AL facility  to see what options there are. Not sure if Medicaid is paying for it but sometimes you can get skilled nurses to come in if it’s the oxygen the AL is freaked out about. 

I hope this helps. Please keep posting let us know how it works out.

Mckangel

Just posting an update, although  I still don’t know much. The rehab center called me first thing this morning with basically a “discharge “ notice. I told them her current AL facility would want to come re-evaluate her. Frankly, it surprised me (although it shouldn’t have) the rehab called me being that I found out Sunday that my mother was going to have an ultrasound on her legs due to discoloration on her feet, which by the way, she has had for years.  Her current AL facility did come out and in my mother’s words, said she could come back anytime. This is not official , as I have yet to hear from either the AL facility, or social worker at the rehab. Meanwhile, this morning, I didn’t feel like I could accomplish too much at work, so I did visit a facility with AL & memory care. I can only try to put all this on the shelf tonight and start calling again tomorrow. My precious daughter suggested making a lists of pros and cons about returning my mother to her current facility, where she is somewhat familiar and giving it a try, or moving forward with more advanced care which could likely be needed  in the future. She is spot on in that suggestion, but for me right now, I just want to curl up and possibly have a glass or 3 of wine. (Sorry, just channeling my dark humor). Thank you for your input and please keep the advice coming.  I appreciate you all.