Guilt, Regrets and Fear

ChicagoGal

We moved mom to Memory Care on 12/30 after two years of in-home care.  I did not live with mom but visited 2-3 times/week, bought groceries, managed meds and finances, handled doctor appointments, dealt with the house upkeep and coordinated the caregivers.  Last few months we had live-in caregivers.  Mom started some serious sundowning, did not sleep at night - walked up and down the staris, walked out of the house several times and started getting quite agressive with the live-in - so I started to stay there overnight so the live-in could get some sleep and I could control mom's walking up/down the stairs.  Doctor put mom on a couple of antipsychotics to manage the aggitation/lack of sleep - did not always work.  I became an exhaused, nervous wreck.  Mom did not know where we were taking her - lost her ability to understand/reason a while back - but continued to stay alert and suspicious.  She was mobile when we took her to the Memory Care facility.  She continued to not sleep at night and then be in a stupor during the day.  She also stopped walking, being able to feed herself and going to the bathroom by herself.  Doctor took her off the antisychotics and replaced them with Xanex and a very low dose of Depakote.  Big improvement since Monday - still not walking or feeding herself but more alert and able to move her hands/fingers and feet in a more normal way.  But the not sleeping at night is still an issue.

I feel very guilty for putting mom in Memory Care.  Don't know how I would have managed her at home but this move seems to be very negative for her.

Have any of you dealt with a LO that just totally went down hill after moving into MC?  Did they recover/improve?

CanyonGal

First, we can't predict the future, so no one can say if she would not be in the same place mentally and physically if you kept her at home. I had to wrestle with the guilt of moving my mom to AL and then, to Memory Care.

Memory Care was especially hard because first I had to watch her lose her home and the majority of her belongings when she was placed in Assisted Living. She adjusted, started to move to a different stage (4-5), sundowning (circadian rhythm was off, up at night and wandering around the facility) and was refusing to eat. She became very weak from spending 18 hrs. in bed and not eating or drinking. She wasn't receiving the assistance/attention in Assisted Living, because they don't have the staff for that extra help. Frankly, she was dying by starvation, and I asked for Hospice to step in.

Because the Memory Care rooms are even smaller, we had to "downsize" a second time. I try to remember sometimes that it is just "stuff", but each time it is like she died, and I grieve from the changes. (Most MC centers do not want a lot of belongings in the room because most of the residents are confused and "belongings" disappear. My mother collected other residents' walkers, clothing, glasses....) 

And, after she was in Memory Care, she turned a corner. She began to eat, and she is getting her strength back because of the nutrition. Her mental state through has shifted again (sadly) the last 6 months, and I know that Memory Care is actually where she needs to be. 

Check to see if you mom is eating and drinking, because if she sleeps during the day, she is missing meals. She may be aware that something is wrong with her mind and can become depressed. At this stage, unless you have tons of assistance at home, you will wear yourself out. You need to take care of yourself so you can be there to make decisions and take care of your mom. (They still need family to fill thin the gaps in care.)

harshedbuzz

ChicagoGal wrote:

I feel very guilty for putting mom in Memory Care.  Don't know how I would have managed her at home but this move seems to be very negative for her.

Have any of you dealt with a LO that just totally went down hill after moving into MC?  Did they recover/improve?

My dad's abilities really tanked after placement. He was quite lucid for about 2 weeks and then started his final decline. I truly believe it was a chicken vs egg situation. In hindsight, I know that it was the damage to his brain from the disease that was causing the behaviors that led to placement and not the other way 'round. By this point his needs were better served by a well-rested and experienced team of caregivers that allowed my mom and I to step back into the role of family.

HB

GothicGremlin

I agree with a lot of what CanyonGal said.

I moved my sister Peggy to memory care a little more than a year ago. Peggy didn't want to go, but her cognition had gone over a cliff. My feelings about the impending move were similar to yours ChicagoGal. Guilt. So much guilt.  But I also knew I was doing the right thing.

Once we moved Peggy to memory care she had a couple of meltdowns, and it took her some time to adjust, but she did adjust. A few months after the move she even told me, "I should have moved her sooner" (or words to the effect). To this day when I visit she tells me how nice the staff are to her, and points out to me the caregivers she especially likes.

But, no, my sister isn't getting better, she continues to decline (but that's the progression of Alzheimer's). I'm sad that she's in memory care, but I know that it's the right place for her. I can't be there for her 24/7 and that's what she needs now.

These days Peggy is doing as well as I could have hoped for. Memory care is not the hellscape she feared. In her case, the smallness and layout of the facility is easy-ish for her to manage and this alone reduces her stress. I wouldn't say she's happy, but she is, for the most part, content.

I hope things go as well for your mom as they have for my sister.

Arrowhead

DO NOT FEEL GUILTY!

You gave the best that you could for as long as you could. You reached the point where you felt you couldn't give any more. Don't feel bad about it. I haven't reached that point yet, but when the time comes, I won't hesitate to do what you did. 

ChicagoGal

Thank you - I know in my heart that this was the right thing to do.  But it is so hard to see her deckline so quickly after the move.

SeaGal

My husband is in memory care.  It was one of the hardest decisions I've had to make.  After 6 months, however, he is doing well.  There are issues still issues, but at least there's a "team" to address them.  

One thing I have to keep reminding myself is Alzheimer's is a progressive disease that at the moment we have no control over.  It is not our fault, and we cannot control everything.  Just make sure she's not in pain and is treated with dignity and respect.  

I had to learn to stop grieving what was and accept what is and find joy the visits that I have with him now.