First Post - Drowning

notcopingwell

I have been reading for some time, and am very grateful for the thoughts and ideas I've been able to benefit from to date. I'm not sure why I was driven to post, and I'm not sure what I'm hoping for, but I am coming up empty on ideas. Apologies, this is a long story, and I'm a little too strung out to revise appropriately. The TLDR is that my mother has been declining, but had a sudden significant change after some temporary health issues, and is now in an assisted living facility, not cooperating, not nearly functional enough for assisted living, and I don't know what to do.

My mother is 70 and has dementia. There were signs before my father's death 5.5 years ago, but the diagnosis was slow in coming because the symptoms were difficult to definitively distinguish from depression after he died. Since I have talked to her on the phone daily for many years, I started raising the flag early, and was waving it in earnest three years ago, but wasn't able to get traction either with her or other family members. She eventually was the one who requested the appointment with a neurologist. I know very little about the diagnosis, as I live remotely in Illinois, while she lives in Ohio; my brother, who lives locally to her, was the one who was invited to her doctor's appointments, and wouldn't press for details. This does not seem like the Alzheimer's in the movies and on TV - she didn't lose recent memories while retaining old ones. She had trouble with words/meanings early on, and seemed to lose memories pretty evenly from her whole life, while confabulating lots of stories in the meantime. She still recognizes my brother and my family and I, but not friends (who have mostly ditched her), pictures of out-of-state family she hasn't seen often, or even pictures of my father. 

My brother and I have worked different parts of the challenge. He continued to take her out for meals regularly, took over her finances, and took her car keys in November 2020 at the recommendation of the neurologist. From remotely, since the onset of the pandemic, I purchased all her groceries and sent meals, signed her up for Meals on Wheels, sent activities and clothing and any needs or wants, and continued to engage with her daily to let my brother know about emergent issues that couldn't be addressed from Illinois. He struggles to do anything hands-on, and she wants to be near him/wants nothing to do with coming to live near me. Things came to a head last fall (October 2021, she kicked out the part time caregiver we had arranged, and her house cleaner reported some very concerning things), and I left my family in Illinois to move in with her for two months to work remotely and take care of her and to arrange daily, all-day caregiving that she would accept. Meanwhile, due to her anosognosia, we had to petition for guardianship, as she could not be convinced to agree with decisions in her interest, and we had missed our window for PoA (she was declared incompetent by her neurologist). The guardianship was awarded on Valentine's Day; my brother, since he lives in the same state as her, is full guardian, and I am co-guardian of the person. 

We made a reservation for her at an Assisted Living/Memory Care facility that I really liked in Ohio, but their assessment from early March suggested she should try in Assisted Living rather than Memory Care. I was surprised, but not being an expert, I was willing to trust them. I had been planning out and purchasing her furnishings for the AL apartment when the big nosedive hit.

One gap I left when I moved home at the end of December was in treating wounds that were recurring on her lower legs. I had requested her PCP refer her for home nursing wound care after I went back to Illinois (I had been treating them when they emerged), but he refused, recommending instead that she go to a local wound care center. That ended up being insufficient (one appointment every two months?!?!), and she landed in the hospital with cellulitis that went septic on March 13th. At that time, she seemed to lose the ability to walk and became completely incontinent. She went from the hospital to a rehab facility where she participated in PT for a couple of days, but then ended up with an upper GI bleed--back to the hospital. After that resolved, she went back to the rehab facility, but would no longer participate in PT. I had given them lots of suggestions as to how to get her to engage (take cell phone out of her hand, turn off TV, turn on music, try to determine if she say "ouch," whether she actually has pain, or if she is just confused and not liking what's happening, etc.). They didn't seem to appreciate the scale of memory loss and confusion they were dealing with - she still SOUNDS normal in her voice and conversational cadence, and she has normal facial expressions - and they insisted that they couldn't force her to try. They suggested I should encourage her to participate. Well, I could encourage until the cows came home, but if I wasn't not there at the time of the PT, she wouldn't remember.

I went out for a week in March while she was in the first hospital, in rehab briefly, and in the second hospital. I was working remotely during the day, visiting her in the evenings, and working the night shift at the AL putting together furniture and such. I had planned to go back out and finish assembling her AL apartment over Easter weekend, plus be able to visit her for Easter. The sudden announcement on Wednesday afternoon that insurance was cutting her off from rehab changed the plans into emergency mode. I appealed the decision to try to get a little more time for her to try (I had arranged to be there Saturday morning for her PT session), but the appeal was denied, so I drove out overnight Thursday to try to get things ready.

While I know full well that dementia is progressive, I really didn't expect for my ambulatory mother to become bedbound and incontinent so suddenly. If this is a UTI, I don't know how we can fix it after the courses of antibiotics she went through for the sepsis/cellulitis. The adorable apartment I designed for her seems very ill-suited now--even the cute bed I bought and made up for her will end up getting ditched for a hospital bed. She won't even sit up, even though she totally can (we convinced her to try sitting at the edge of the bed on Saturday with my husband and I supporting her, encouraging her, reassuring her - and she did it fine despite a lot of complaining about anything she could throw out). She is still strong, just confused or for some reason putting her foot down on this and every other issue - she's not going to do any. thing. else. I couldn't convince her to let me help change her out of her spinach-stained shirt (from eating while lying down) from Saturday on Easter. She could not have cared less about the Easter basket with gifts I brought her, and said very hurtful things to me. She is CONSTANTLY wanting to eat, even when she just ate and said she was done and to take the plates away, but she REFUSES to sit up - even the nurse said she will choke if we let her eat while lying in bed. The Assisted Living staff just called my brother to ask for advice - she won't let them change her soiled depends.

I'm beside myself - this is untenable. We can't allow her to refuse basic care, can we? This does not seem like someone suited for Assisted Living. If she's so resistant to everything, I don't know if she would even be suited for Memory Care (not that there is space in Memory Care at her current facility right now - I'm afraid they are going to kick her out, too). I don't know what the other options would be. Do we need to sedate her so they can change her? Would a skilled nursing facility be better? Health-wise, she seems to be fine - eating, drinking, strong. She's young, and I don't get the impression that this is the end stage of her life (although I don't have the experience to know, I guess). Is this something that medication adjustment may help? Is that the realm of a geriatric psychiatrist? She has told my brother she's pretty sure she'd be able to walk fine if he'd just take her back to her house--but no proposal on how she will get to his car.

Meanwhile, I'm just so, so, so sad. I'm heartbroken. I'm anxious all the time to the point where I feel like I can't breathe. I've been in therapy for over a year, largely to address my grief and terror over my mother's situation; it doesn't seem to help at all. My children, who came out to visit Grandma and to not be away from me on Easter, are devastated by what they saw. It feels so much like she is gone, but she's still here. I can't figure out how to help her. She's de facto making decisions against her own interests with her behavior, and she shouldn't be making decisions at all. I can't help feeling like I've failed her, and failed my father who asked me to take care of her.

May flowers

Welcome, and sorry for all you and your mom are going through. Your love and concern shows in your post and you are definitely not failing her. This disease is awful. I feel like I’m chasing my tail - one thing we seem to get a handle on and then another crisis appears. It’s a brutal cycle. I’m sure others will jump in here. From what you describe you are right about her needs being past AL care at this time. If she isn’t cooperating, I am not sure a MC would accept her. 

With your mom, it almost sounds like she might be dealing with depression too. Many on this board have mentioned a Geri-psych doctor evaluation and that may be something to consider - getting combativeness and depression under control seem to be the first step. Then other decisions can be made from there.

Also, it is possible she needs a different med if she has a UTI than the one she took for sepsis, so I would look into that as well. 

I have always felt my FIL’s dementia (vascular) progression never fit the stages I had read about. His memory loss was a lot like your mom’s. From spending time on this board I have realized that no two people progress the same through this illness. 

A hospital stay and any other changes can really throw a dementia patient into a tailspin . We had three major changes last year and each came with a substantial decline - a psych hospital stay in Sept, a facility flood and move in November (to a very bad facility), and a fall/UTI in January of this year. 

But after his surgery, he rehabbed at our house and he was just like you described. He refused to sit up or follow any directions. We have a hospital bed and he would keep sliding down the bed, and he still does slide down in the chair to the point we put a seatbelt on him to eat (they can’t do this at a facility).  Otherwise he slides right out of whatever chair he’s in. He could and can walk physically but can’t (won’t?) follow directions. But he wanted to eat (most days) and still wants to eat a lot.

After the psych hospital stay, he stopped knowing who we were. After the flood, he stopped being able to do ADLs. After the fall/surgery, he lost the ability to walk and communicate. It has all happened so fast. It’s like he skipped stage 6 and went straight to 7. He has regained some skills, like feeding himself though. He has stopped being as combative. 

Anyway, I feel your pain. I am sure you will get a lot of support and helpful suggestions from others.

windyshores

I concur with May flowers on the disorientation from hospital and rehab. My mother forgets where she lives (an AL) entirely after two days in the hospital and when she returns to the AL, calls me constantly to help her pack so she can "go to that other place" where she lives.

Since she is already disoriented, I wonder if a geriatric psych. facility could be helpful in determining placement, medication and whatever other treatments/solutions might help.

Residents in assisted living are tenants, not patients, and have the right to refuse any help. And AL's are full of residents with dementia. In my mother's facility the only residents who get the more intense help of MC are those who wander, fall, or overly stress staff with neediness.

You could wait a couple of weeks after your mom goes to assisted living, to see how her mental state settles out-? Definitely have her tested for UTI (this can be collected at her home by outside providers) and treat.

Has your mom been evaluated for past stroke?

Many days my mother will not get up. I keep suggesting that aides move her to the chair, but many days that is nearly impossible. Unfortunately I am the only one who can get her to do things, so while she pays $9k for AL, I get her up and showered more than staff. This means I am stuck living nearby.  Can you move your mom closer to you? I know she says she doesn't want that but.....

We got a hospital bed and regret it by the way. The mattress was so bad that we put a regular mattress on top. We use pillows to prop her up just as we did with the regular bed.With dementia she cannot work the controls anyway.

I think we all understand how you feel.  My suggestions: If the AL will let her stay, give her time to settle in. If necessary hire a private aide to keep her in the AL until that happens. Test for UTI and maybe CT scan for past stroke or other things going on in brain. Consider moving her. Do you have primary proxy? It should be invoked by MD.  Get a geriatric psych. or even PCP or neuro to prescribe meds so she is more cooperative, at least during this transition period.

Good luck...things may get better. Someone told me that as the dementia gets worse, things get easier, and that has been true with vascular dementia. For other kinds not so much.

MN Chickadee

I'm sorry for all you are going through. It sounds like AL is a completely inappropriate setting for her now. They are not trained to handle dementia to that scale, nor are they staffed at the level she needs. I would be looking at either a high acuity memory care facility or skilled nursing. There they will have training (and therefore tricks and various approaches) to get her depends changed and the care she needs. A stay at a geriatric behavior unit/gero psych unit may not be a bad idea. There they can get her stable with medication so that she hopefully isn't refusing care. It would also will help with finding proper placement. It will buy you time, since people tend to need to stay there a couple weeks, and then you work with the social worker there to find a bed in a long term care facility that can meet her needs. They can't discharge her from the inpatient psych unit with nowhere to go nor can they make you take her. Make sure you are always making it clear you cannot take her home (they may pressure you to do so, makes their jobs easier.)  If she should land back in the regular hospital for some other reason, like the infection or a fall or something, follow the same steps. Work to find proper placement directly from the hospital and repeat you cannot take her home and care for her yourself. 

I would still ask the facility or doctor to do a urine sample and culture it; the bacteria that causes a uti can need a very specific line of antibiotics. My mother's were often resistant to numerous abx, so whatever your mother received in the hospital may not have covered it. It may also tell you if she has become resistant to antibiotics or if anything else is going on there. 

It could be all the changes in scenery and the commotion has left her with some delirium. Sometimes that improves over time after a hospital stay, however I have to wonder if it will given her care setting; it doesn't sound like the AL is equipped to deal with it and therefore if she isn't at the level of care she needs the anxiety will persist. I would definitely be calling every MC/SN facility around looking for a bed right now. 

I know the grief you are talking about. The phase where you realize nothing will ever be the same and you've already lost your mother even though her living breathing body is right there is truly heartbreaking. I felt like I was physically breaking throughout that time and the move to memory care. All I can say is you get through it. One foot in front of the other. Hang in there and let us know how things go. 

notcopingwell

Thank you so much for the thoughtful replies. I think the most proximal next steps are to check into a geriatric psychiatrist evaluation as well as a urine sample test. The Assisted Living facility has asked for a few days to get a better picture - part of the reason I liked this place was because of their Memory Care onsite (best, most cozy and cheerful and well-trained one I found). They had assured me that if we brought her into Assisted Living per their recommendation and decided she wasn't suited, that she would have priority to move into memory care when there was availability, and would enhance her care in place until such time. I think with a few days to get settled, we can evaluate whether that plan still makes sense. They still seem very positive that she can benefit from their physical therapy onsite, which they feel will better understand her mental state compared to the rehab facility.

Meanwhile, I was able to get some promising news on her hospital bed becoming available this week. Also, it may seem silly, but I am glad that I bought and set up an Echo Show that I can drop in on to say hi to her remotely. She seems to enjoy that; just a couple of minutes to say hello in between meetings, etc. 

I think I am catching my breath a little bit and gathering the energy for the next phase. Thanks again!