Nowhere to Go

My mother has been in the hospital what seems like most of the summer, though I know it’s not true.

This is her second hospitalization for the season, and I think we’re on week 3.  Anyone who’s a caregiver knows why I used the word WE in that sentence.  Even when I’m not there, I’m worried.  The shifts change so often.  Some of the nurses understand older people and dementia and have a lot of empathy and patience, and some absolutely do not. 

Sometimes I walk in and Pat, supernurse, has Mom looking lovely and has strategically placed her away from the loud common room TV that grates on her nerves with her shoes on and her walker nearby so she can be as active as possible.  And sometimes I come in midafternoon and find Mom has the nurse who could care less, who never bothered to give a second try or aim for humor when mom refused to get out of bed, refused to get dressed, and declined eating.  Those days I find her lying prone in Depends, wet, bored, and agitated. 

The hospital hasn’t been able to do anything for her hallucinations and delusions.  Sometimes they come; sometimes they go.  Every time the delusions depart and she has a good day, her team asks me if I think she’s improving and if I think she’s ready for discharge.  Each time I answer that it’s too soon to tell, that I think we need to see at least 48 hours of a stable state of being to know it might possibly stick around.  And so far, it hasn’t.  So after 3 weeks, they’ve finally stopped asking me about discharge, though they’ve made it perfectly clear that they would like her to leave yesterday. 

They’ve done all they can, and as far as anyone can tell, this will be my new mother – some days a terrified person grabbing onto my hair and trying to rip it out because she thinks I’m a murderer, some days eager for ice cream and full of jokes and hugs.

Her previous residence does not want her back.  They’ve seen the hospital notes; they’re thinking of their staff and their residents.  (And their waiting list of people without such issues, I’m sure.)  All of that is understandable, even if it makes me sad.

None of the places the hospital social worker suggested (all with their waiting lists too) are very interested in having a sometimes aggressive, delusional unknown psych. patient added to their charges, though they don’t say that straight up.  Nonetheless, I’ve put her on list after list.

Mom now has too little money to get into the place in town everyone keeps pointing me to, a lovely place that excels in such matters and is very well staffed.

So right now there’s nowhere to go.

The hospital seems to understand that I’m scrambling to figure some thing out.  They know I’ve tried having Mom in my home and that it led to multiple disasters.  They want her out because they’re a short-term facility and need to make room for people they CAN help, but they’re not going to kick her out, which I’m very grateful for.

I visualized many possible things happening in the future with Mom, but never a scenario where no one would take her.

Tomorrow is the start of a new business week, so I’ll be talking to more social workers, support groups, and local professionals to see if there’s anything I’ve missed. 

I’ll be going to court on Wednesday for Mom’s legal guardianship hearing, which will help open up more options for her residentially, (hopefully), and will mark the end of her life as an independent, self-governing individual with related rights and decision-making powers.  Much needed right now and probably a bit overdue, but still a sad life marker for her 75th year that I’m feeling poignantly on my birthday.

Ice cream out on the hospital patio on a good afternoon

 

 

 

 

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This entry was posted in advocacy, caregiver stress, support, and respite, dementia, doctors and medical, family issues, inclusion, lewy body dementia, memory care and residential options, parkinson's and tagged , , , , . Bookmark the permalink.

3 Responses to Nowhere to Go

  1. Judy says:

    Oh Megan. I put my cyber arms around you. This is just so wrong. I have had much the same hospital experience. Seroquil quieted her delusions and hallucinations. Trazadone helps at night. Now she is in rehab. Little did I know the rehab is actually a skilled facilitity [nursing home]. I doubt she will leave. A week in the hospital and now here. It all happened so fast. I still cry. I promise to pray for you and your mother.

    • Megan says:

      Thanks Judy. Glad to hear Seroquel worked well for Chrissy. It just seems to make my mom more agitated, so they’re trying something else now.

      Fast transitions are scary and sad, like you said, and on the other hand, I’ll also be so relieved if my mom’s ending is a fast one. She’s terrified so much of the day now. This is no way to live.

      Good luck to you both in finding peace and thanks so much for your prayers.

  2. momsbrain says:

    Meg, I feel the same as Judy – sending you virtual hugs. You are in completely unfamiliar territory as far as my experience goes, and apparently for yourself and everyone else, too. I’m sorry you cannot get into the preferred facility. The financial element is an added strain that you certainly do not need. I also am distressed that the nursing staff is so inconsistent. It is painful to hear about a nurse who will not provide authentic care.

    I completely relate to your feelings about your mom’s quality of life. When my mom feel deeply asleep in the hospital last week after taking an Ativan, I thought to myself, is there any chance she could just drift away and be at peace at last? Instead, she woke with a violent start, as if she were dreaming that she had fallen all over again.
    Take care,
    Emily

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