Caregiver- Take care of YOU, first!

Artgirl

That subject line may sound selfish, but no longer for me. It is now 2022.

I am the caregiver of a now 93 year old, my mother, whom I was never close to. I am the oldest of her two kids. She has had early onset probably since her 40's, but there was no diagnosis then. Now have a diagnosis and it took a couple of years but a diagnosis helps in figuring all of this mess out. My brother turned her over to me in 2019.

Being stressed out and anxious led me to sickness, inability to recover (I am a cancer survivor). I am on the road to better health for my OWN self now. Through medical care, counseling and my own self-care I am doing what I can for me.

My mother never did housework, always done by her children (us) when we lived with her. She hired everything out and done for her. Never lifted a finger to do any physical work, thus she is hypotonic. She basically gave up walking last year and is in a wheelchair, gaining weight. I don't understand how long this can go on, but it is. She has been incontinent for years. Her only concerns are eating, gambling (none here), and money. 

There are moments of lucidity, but all common sense has been gone for a long time. If she knows I am going to a doctor appointment, then she thinks she needs to go too. Hypochondria is a staple in her mind. Repetitiveness, physical tics, mouthing objects constantly, loss of social graces, loss of empathy towards others and obviously impaired judgment have all been part of her journey, not to mention refusal to bathe/clean herself.

She answers all spam calls and gave out our names and location, so I took cell phone away and she has not noticed. No one calls her anymore as she is mostly deaf. No one texts her much either as she has outlived all of her friends. Grandkids could care less. She forgot how to use the computer and keeps on getting into the settings and causing more work than I care to do.

Readily abandons task, remains unconcerned, so this along with all the testing diagnosis of FTD, from the scans and imaging done. Diagnosis complete. No cure, no medicine for this.

In addition I had tried to engage her in activities she used to do (besides gambling). She lost the ability to draw or to paint. No interest in reading much anymore, puzzles, word games, just tunnel vision on the tv, and comes out of her room only to eat or to go sit in the sun. Taking her to any group function (senior center or otherwise) must involve food or she will not go. The sentences to me are monosyllabic most of the time, but she will talk to others in a very low voice, barely audible.

In closing, take better care of yourself as the caregiver until the very end of your LO. Our lives are very important and if we neglect ourselves for others in our caregiving -even though we are taught not to neglect our own self-care. 

I am going back to what I enjoyed before mom came to live with us, even though I cannot do exactly what I want to, I still have Faith. 

dayn2nite2

It is a special kind of hell when you are in the position of caring for someone who may not have treated you as you deserved prior to their illness.

You aren't selfish.  She was.

I agree that this has gone on for decades and people may think I'm terrible, but at 93 years old, you are certainly on the downside of this death march.

In 2022, time for a new philosophy.  Meet her where she is.  Don't try to engage her in life anymore.  She's made it obvious (whether she was of sound mind or like at present is not) that she's checked out and trying to engage her is futile.  Let her do what she does (nothing), feed and shelter her until she dies.  Harsh?  No.  She has already gotten from her children more than she perhaps deserved.  Going on for this long, I'm sure she exhausted her assets years ago, so there is probably no "reward" in this other than knowing you did the right thing.

If she HAS exhausted her assets, another "right thing" would be to get her on Medicaid and place her in an adequate facility to live out her days.  Is that a possibility?  You have already done right by her, so has your brother, and getting her placed helps you to reclaim your home and life faster.