End stages

Salsam

Hello, 

My dad died on June 6.  As a caregiver, it seems to me there are 2 stages.  Manageable and UNMANAGEABLE.

In my case, unmanageable came when maybe because of a UTI my dad was peeing everywhere (Yes, he had depends, but also 93 years of NOT peeing in his pants)  and problems with constipation, bowels, too. 

And agitation,and never sleeping.   We tried all kinds of meds(none worked well). Hospice did their best to help. 

So in spite of having  help with 24 hour shifts(I was one of the shifts)   I could never sleep. 

Ironically I took care of both my parents through the Pandemic(and 4 years before that, too), and they were admitted to the only MC facility close by.  They got their vaccines there, and were OK at first. 

My mom screamed at me for putting her there, then she promised to try to help and adjust...to help her daughter.  She sort of adjusted.  

I got calls about my dad's violent behavior(which were addressed, and then I got calls reporting that he had punched someone. as if they were telling me about the weather). I found out they have to do that by law. They did not kick him out, I don't think they wanted a bad reputation. 

I felt like I had dumped my toddlers on a street corner in China and said, "Have a good time. Some people here are nice."  

There were great caregivers, some that didn't care, and just too many people for my beloved toddler/elders to adjust to. 

I ended up finding another smaller care facility(private home, licensed) and  my dad's behavior was the same but better handled.

My mom is still there, and I think she is well cared for.  

But she went down a lot...forgot how to walk after he died...and was grieving...people say don't remind them about the loss, but she got very upset and asked why no one talked about her former husband?  She also knew she was wearing NOT her real  wedding ring(we got her a fake one in case it would get lost) . 

She also knows people from the past.  She is always very happy to see me.  That is the weirdest thing about Dimentia...they DO NOT FORGET everything...each person is different.  

I am very relieved I found this new place. 

I felt guilty for moving them from my home.  ...at first they seemed like the model Dimentia couple...mild dimentia, charming, to the Hospice folk...but everything became unmanageable so fast.  The Hospice company did not exactly recommend the MC facility, but they worked with them, so they didn't have any other solutions either.  

Maybe more than guilty I felt sad...as if there might have been some way to NOT advance the stages...or some movie screen like end(actually there were moments that were sweet).

In my case, the stages advanced themselves seemingly overnight.  My dad went from scaring inexperienced nurses  and pushing his walker into walls to not being able to walk or swallow well.  The walking/swallowing issues happened after the second move, but maybe coincidence.  My mom is well adapted to the new facility, and she eats well, although, she forgot how to walk after being able to easily walk a mile.  Was it grief?  Or advancing Dimentia? 

Does anyone know?   It felt to me that they advanced rapidly when they were no longer living with me, but I forget I never thought of moving them until their behavior was so exhausting< I could not handle it anymore.  

Have others gone through this?

I took care of two other relatives (Uncle and Aunt) in their home until they died...but one died of cancer, and the other after a stroke, so the agitation and unpredictability level was not the same.  

Thanks ahead for any thoughts.  I have read similar stories here. 

Stuck in the middle

Sounds to me like they went to professional care because their conditions were worsening and becoming unmanageable by a single caretaker.  I doubt they got worse because they were receiving professional care; they would have worsened at home too, because that is the nature of the disease.  Even if it did, you had to place them.  A human being cannot live without food, water, and sleep.

When you said "I could never sleep" you justified the decision.  They had to go to professional care, either when they did or after they put you in hospital.  You had no choice.