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Lone caregiver.
losinghope
Posted: Sunday, December 1, 2019 7:02 PM
Joined: 1/16/2018
Posts: 37


As a married couple we moved around the country a bit.  A few years here a few there.  Never thought I'd regret it but here I am.  No family within 1000 miles.  No close friends after 12 years here.  My sweet wife and I were always together.  Gardening, crafting, building, playing.  Now she barely knows me and I am alone with her.  I'm 73 and healthy.  She's 66 and just as healthy physically.  Diagnosed about 3 years ago she has gone through various stages from crying to confusion to no short memory whatsoever.  Can't even understand or complete a sentence.  Watches cartoons all day because anything else agitates her.  Luckily after the first few months of turmoil she finally sleeps well as do I.  Can't be gone from the house with her for more than an hour or so.  She hallucinates about her worried parents, one of whom is not alive.  She is living in a mixed up fantasy world somewhere between childhood and the latest TV show.

Which, I guess, brings me to my point.  Caregiving is a lonely task at the best of times but isolated from anyone significant to me has made it extremely so.  I have learned not to expect thanks.  There is no one to thank me for the long lonely days of chores and caretaking.  It is thankless except for knowing it is far better than many others suffer and certainly would be my choice rather than having my wife taking care of me.  My fear is my death before hers.  My only daughter has already told me she cannot and will not do what I do.  She tried for a month two years ago when I had to be hospitalized with pneumonia.  She will not put herself through it again.  What to do. What to do.


MissHer
Posted: Sunday, December 1, 2019 8:22 PM
Joined: 11/13/2014
Posts: 2186


Hi

Can you hire someone so you can get out once in awhile? My mom is gone now but I remember that feeling of being deserted. I'm pretty sure that a lot of lone caregivers do. Do you post on the caregiver thread or the spousal thread? I really hung out on the boards quite a bit during those times. It kept me partially sane . I did actually have an emergency person or two but I do have family around. Have you considered moving into an assisted living community? Many people do that with a memory care wing attached. 

 


harshedbuzz
Posted: Monday, December 2, 2019 6:09 AM
Joined: 3/6/2017
Posts: 1838


losinghope-

I am so sorry.

In your situation, perhaps you would feel better to create a Plan B to be implemented if you are unable to do the hands-on care of your wife. If you daughter is willing to oversee her care, perhaps finding a MCF near your DD might be an option if you need to be hospitalized or are among the 1/3 of caregivers who don't outlive their LO. 

It was not possible for me to relieve my mother of caregiving on a permanent basis, although I did visit and often took dad to his many doctor's appointments to give her a break. I toured a dozen or so MCFs near me and extracted a promise from a local rehab/SNF he'd stayed at to accept him on the fly if my mother could not care for him because of illness or disability. At one point, dad's care and behavior (he believed he was dying and was expressing a desire for them to die at the same time) at home became unsafe and having a Plan B was useful. I was able to take my mom to 3 facilities and let her make a choice. 

HB
ruthmendez
Posted: Tuesday, December 3, 2019 12:17 AM
Joined: 9/8/2017
Posts: 2141


This is worrying me more and more.  A new lady in my support group appears to be in her 80's and her husband is at the stage where she's helping him with his shirts and buttons.

I asked her if she has family nearby.

She said, "Yes, but I don't want to bother them. They work full time."

It's sad and not right.  More and more people with this type of responsibility.  It truly is exhausting.  It's not about the caregiver at all.

I saw one of LickityGlitz's  posts where she says, "the caregiver does not get any respite no matter what" or something like that she said. 

It's true.  We just don't.

 

 


MissHer
Posted: Tuesday, December 3, 2019 11:04 AM
Joined: 11/13/2014
Posts: 2186


ruthmendez wrote:

This is worrying me more and more.  A new lady in my support group appears to be in her 80's and her husband is at the stage where she's helping him with his shirts and buttons.

I asked her if she has family nearby.

She said, "Yes, but I don't want to bother them. They work full time."

It's sad and not right.  More and more people with this type of responsibility.  It truly is exhausting.  It's not about the caregiver at all.

I saw one of LickityGlitz's  posts where she says, "the caregiver does not get any respite no matter what" or something like that she said. 

It's true.  We just don't.

 

I agree Ruth. If their in a facility, you worry, and you still advocate for them, and try calming them when they get upset. It's a 24/7/365 mind game. 



 
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