First Time Poster Searching For Support

TrustinginGod

A very long vent …. hoping someone  has some words of comfort and wisdom

I am new to the board, but have been lurking and reading posts for years. I decided to join because I have come to the conclusion that you can never truly understand what we as dementia caregivers go through with our loved ones … unless you have lived it.

My 84 year old mother has advanced dementia and I have been helping my father take care of her at home for the last 8 years. I live in the family home, ( I moved back home after my divorce and my mom got diagnosed very soon after and then never left) along with my two kids 24 and 17 . We all help support my father in her care. It means a lot to us to have her home with us  and spend as much time with as we can even at her advanced stage. Although extremely hard - between all of us have managed to do it. 

I feel like I’ve been on auto pilot for 8 years - helping my father, coordinating appointments, going to appointments, picking up medicines, giving my father respite to care for himself (he just turned 80 this year) trying to lighten the load for him as much as I can. I have not allowed myself to think of “the end” because I know “the end” is my mom dying and somehow even after all this I am not ready. I don’t want to be selfish …. I don’t want her to suffer (my logical brain tells me that) but my heart wants my mom with me and is not ready. 

My mom has COPD along with the dementia and got a pneumonia a week ago which she was hospitalized for and is currently at a rehabilitation center to finish IV antibiotics. This pushed me over the edge. Tears, anxiety, and panic that at some level I must have been suppressing all came tumbling out when she got admitted to the hospital. I have been a mess. So fearful of the future /end  -it’s paralyzing. Crying on and off .I am extremely close to both my parents - I have been blessed with the most loving , selfless , giving parents that a person could ever hope for ( (I am so thankful as I know this is not the case for everyone)….and this reality of life is beating me up from the inside. I do try and make time “for myself” but I find myself worrying all the time …. It’s like I can’t escape it - my mind won’t shut off. 

Would love some wisdom, tips, support from people who know how truly awful this disease is to the person who has it and the loved ones that support them through it.

 Diana

SusanB-dil

Hi TrustinginGod - sorry you are dealing with 'this' and all of the other on top of it...

That is very selfless of you and kids to all pitch in like you are. and correct - this is ridiculously hard! It is hard to see LO in such a state.  A lot of us can relate to not wanting any of us to suffer with this, both the person and the caregivers, and yet not quite ready to let go.  Glad you are taking care of you. And sometimes you just need to 'let it out'.

So true that folks who are not around do not know what we deal with. MIL's own sister didn't realize until she offered to assist a few hours on most Saturdays. We are truly blessed that she continues to do so even after she realized what we had been telling her was even more involved than she thought. MIL can still 'showtime' when others are around. I saw another post that the caregiver had family come over and had them stay for hours, rather than just eat and leave. 

We understand. ((hugs))

Martin Robbins

It's a bad scene.  No doubt about it.

My mother was in a hospital for asymptomatic COVID, and the nursing staff nearly killed her during the 10-day isolation period.  On discharge, they wanted her in rehab because she could no longer walk.  But she could darn* well walk when she went to the hospital.

Anyway, I investigated the few rehab places that would accept her.  All were dumps.

So, before my mother left the hospital, I asked a nurse to mention to the floor physician that I would like to discuss home hospice.  And, that's what we did.

Alzheimer's is a devilish disease.  My mother stopped swallowing 12 days before she passed.  We watched her slowly starve to death, dosing her with morphine, ativan, and medicines to prevent congestion and choking.

When my mother went on home hospice June 2, I asked one of the nurses aides whether she knew anyone who could come off-hours and help.  She said that she would.  She was wonderful.