The manager has called for a care meeting on Tuesday. The meeting will be with me, the memory care manager, and hospice.
Background, mom has been diagnosed with mixed dementia, both Vascular and Alzheimer's by a neurologist since 2019, but my sister and I both noticed the decline for at least a year prior. We kept her in her home with our visits and great friends and neighbors for as long as we could.
But at the end of summer 2019, it was obvious that wasn't workable anymore. I brought her to my house for a "visit". An unexpected hospitalization for severe anemia happened, and she stayed while we got some specialist opinions. That's when she was diagnosed. But as things progressed, her living with me and my husband really started to wear on me, but I thought that she would be OK in regular assisted living with me nearby to help. She was still mobile, and could converse, but was really needing medication management, and not be responsible for bills or be alone so much.
So I convinced her to "tryout" an Assisted Living near me. And the she agreed. Then two weeks before move in, she has a major fall, broke her cheekbone and a bone in her hand. And while she healed well, there was a marked decline in her cognitive abilities. She no longer remembers she was a widow, looks for her children. Her dr attributed it to the shock and trauma and pain. A few weeks later she moved in, and it was going OK, her dr recommended going ahead, as moving later could have triggered another decline, and he thought as she healed and adjusted things would be better. I visited her we ate lunch. I hired a caregiver without her knowledge to go by her apartment occassionly to make sure she ate and got to some activities, she came to my house for Sunday dinner.
That was March 2020, so boom - covid lockdown two weeks after move in. At first I could call her on her phone and we could meet on outside deck for drinks or snacks or conversation. But eventually that was stopped, as they had a positive staff member (who had contact with practically everyone as she was medication aide) So then we just did video chats as everyone had to stay in their apartment, meals were delivered, activities basically stopped, except for some sit in your doorway and do chair exercises or bingo. And our video chats started getting very disturbing, she would be hallucinating. I took her home, and it was obvious the isolation had taken its toll. It was a nightmare. Her agitation and sundowning were worse. I was finding urine in wastebasket, she would get mad, and want to leave and storm outside, I was up at all hours. As soon as they allowed it she went back to the assisted living, but in the Memory Care area. I just couldn't do it.
She's had several falls, and the last major one in Oct, she broke ribs and was in the ICU, due to developing pneumonia. She has been in a wheelchair since then as while she cooperated with with PT at first, she didn't ever gain her strength back enough. She now mostly uses depends, although she does recognize when she needs to go and at least when I'm there I help her transfer to toilet, but she is increasingly unsteady on her feet. And of course there have been numerous falls, thankfully none serious.
She is on anti anxiety meds, and a sundowning med. She eats on her own, and participates in some of the activities. For most of the day, she is agreeable and gets along with everyone. However she morphs into a screaming, biting, hitting, cursing person whenever anyone helps her bathe, change clothes, get in bed, or clean up after an accident. So basically first thing in the morning or last thing at night is horrible. They asked to try a gel that supposedly would help, and not zone her out for the day which contains benadryl Ativan and Haldol. No effect at all. This week she bit the hospice aide that was assisting her in shower.
I know this is going to come up in the care meeting, and I'm not sure what to do.
She will be 91 next month. I just don't want the decent parts of her life taken away. And if stronger stuff just means she is aware and just can't really react that seems even worse.
She's always been a worrier and a very strong willed person. That combo has made things difficult.
If she ends up needing skilled nursing I'll have to move her. Because while most of her bill is currently being paid by LTC insurance, it's maxed out on her per day payout. We've done some private caregivers temporarily after some falls/hospitalizations and the $$ were crazy, I don't know how people do it. She does have people from hospice checking on her now.
I guess there are strictly Memory Care places that might have more skills with this.
Why are they insisting she gets into bed, for example? That raises a suspicion with me that they are trying to impose inflexible rules and schedules, when they ought to be "working in a person-centred way" as all the training manuals would have you believe they should.
For the purposes of this particular meeting, put (metaphorical) duct tape over your mouth and listen to what options are suggested. Don't agree to anything until you've had time to think about it - wrap up the meeting by stating when you'll get back to them.
Pexhausted a softer, gentler approach would better. "Hi. Mrs Smith. How are you? Do you feel like getting up yet?How about a cup of coffee while you think about it. And I'll be back in a few minutes to help you dress. Etc. Yes. I know the facilities are understaffed. But how much time is lost when a couple of staff members are being hit and bitten. I'd ask the Care Meeting people if something along those lines could be done.
Yes, places are understaffed. Gracie's Mom is not the only resident the aides have to get up and dressed. The morning shift starts at 7 am. They have an hour to get the residents up and ready for breakfast. You do not ask a resident if they are ready to get up because the answer will probably be No. A cup of coffee would never be offered because the rooms are not near a kitchen. The time they would spend to get it, they could have the resident up and dressed. Just before my daughter left the Rehab for a better job, Medicare had made a ruling that instead of 9am in the morning that PT has to start, its now 8 am. 8 am is usually breakfast time for residents.
So, these aides work under time restraints. My Mother suffered from Dementia too. She got to a point she didn't like to be touched. Mom was in the ER at one time and a male nurse was trying to undress her. She was not having it. I asked that a female to it. Mom allowed her. Its part of the desease.
MCs can only do so much. They are pretty much on the same level as an AL, maybe a slight step up. Difference being that the residents suffer from a Dementia, the AL residents have their minds just need help with ADLs. Its just a separation. And neither have a lot of aides.