struggling(4)

roseability

been lurking for a while now, but this is the first time i'm posting. i wasn't sure where to start. there's been so much to manage. plus i've been hiding from the sadness and the fear and My Feelings which are intense to the point of overwhelming, but time doesn't stop because i'm not ready for what's next, so i'm trying.

i had three solid years of being the sole caregiver for my parents and i'm genuinely traumatized.  in 2017, mom called me from new york and told me that dad fell, badly hit his head, and required emergency brain surgery. i flew across the country with a one-way ticket for the first of five times that year. dad spent three months in the hospital, acute rehab & skilled nursing facilities, all while my mom was alone in a too-big house, slipping undiagnosed into alzheimer's. it didn't get much easier over the next three years.

the same day california went into lockdown, i moved them into assisted living. i'd been doing everything for them and then suddenly i wasn't. i couldn't even visit. my best friend is dying of progressive illness and i couldn't see her. a month later, my therapist of seven years left. 

so now it's a year and a half later. i'm still tired. the pandemic dialed my natural hermit tendencies up several notches. i'm relieved my parents are still in AL, safe and taken care of, and also that i've hired a team of professionals that i can rely on to help manage it all. i'm thankful. it lets me breathe. it keeps me sane. 

it also allows me the luxury of hiding and avoiding so much that i need to face. inside i'm furious and terrified, grieving and screaming, but muffled beneath 20 feet of cushions so it's barely audible, even to me. outside i'm watching tv and playing solitaire and shutting off my brain when i can, because it just hurts. it's too much loss, this indefinite grieving for the people i love most. the guilt about not doing enough for them. the anger about time lost, and at the cruelty of this illness. worrying that i'll develop it. guilt about not seeing them, knowing i'm only robbing myself of time. no, it won't be like this all the time; in this situation, it just gets worse.

anyway, hi. if anyone can relate and would like to wave from your own hiding spot, it'd be nice to feel a little less lonely.

guitarstevie

Hello Rose,

I think I can relate.  I know I'm living with some of the same feelings as you.  I just joined this forum last night, and wrote my introductory post about 3 AM.  Both my Mom and Dad have dementia.  If you like, read my post: "I'm not doing so well...introduction"

Then maybe we can talk later, if you like.

guitarstevie

(Steve)

Whyzit

Dear Roseability, I’m sorry you are going through the trials that you are. I’m also sorry we are on this website. Thank you for your honesty. You helped me when I read your description of how you numb yourself by playing solitaire, etc. I do the same thing. I also stay up late watching Fox News because it gives me a place to express anger that is away from my daily life. It diverts my attention from what I should be facing. It tires me out so I fall asleep quickly and avoid laying there thinking endlessly about my DH’s Alzheimer’s. It is an addictive way of not facing the truth of our situations…..it is fantasy. And it is unhealthy and ultimately destructive. 

I just reread Understanding The Dementia Experience after not having looked at it in quite awhile. I saw things that previously I hadn’t noticed and it revealed the truth that I need to face. DH is attending day care 2 days a week but on the other days he sleeps excessively. His PCP wants me to get him “ more engaged”. Right! I try, even have made a list of things to do, but he refuses. I’m tired (surprise?) and have been on this journey for ten years. By reading Understanding theDementia Experience again I found it is ok if he wants to sleep excessively if he is comfortable in doing so. That was freeing. Sometimes our medical experts try to make us be more responsible than we can be for things that are impossible to change (enter false guilt). AND sometimes we do it to ourselves. 

It is time to reclaim the time we have been spending in our addictions and use that time for personal enjoyment. (((Hugs to you!)))

jfkoc

Hi Roseability...

Sending a wave. My husband is now dead but I clearly remember all you are sharing including the endless card game.

There is nothing easy about the journey you are on but we are here to be by your side as you move day to day.

abc123

Hi Rose. I can relate to your feelings! I am completely overwhelmed at this point myself! My mom has Alzheimer’s and now my 84 year old dad is showing signs of mci. I’ve been back and forth between their house and mine so many times this year, I’ve lost count. I’m sorry you are going through this. I’m so sick of this disease and what it’s done to my mom. Dad is so stubborn and will not do what he needs to do. I’m sick of all of it. I hate the way I feel and the way I’m thinking lately. I have recently become aware of feelings I didn’t know I have. I don’t want to give up my life here, I don’t want to move to another state at 61 and start over so I can take care of my parents. I’m so sick of phone calls filling me in on how many times a day my mom has soiled herself. I’m sick of both of their doctors calling me. I’m just sick of it. I’m tired of the head games. I’d like to be left alone for a year. No contact for 12 months. I have my own health issues that need to be addressed and every time I turn around I have to cancel appointments bc my dad is too stubborn to hire professionals. I hate my life right now.

miamvp

Yes, I can relate to much of what you've all said - except that I don't have to travel, it's my DH right here with me - constantly.  Thankfully I have found a great caregiver who comes in 8 hours a day, six days a week, who has given me some of my life back.  I was feeling totally overwhelmed, like a house slave, all I did was take care of him, do laundry, clean up pee from one weird place to another, cook and clean up.  I had no life at all other than taking care of him. I have a son & DIL with two kids nearby, but they couldn't help much with a 4 y.o. and infant. We have no friends where we live now, as we moved here 3 years ago to be nearer my family after the AD diagnosis.    I stay up late at night after he goes to bed by 9 (thank God), just to have some time to myself and get things done I can't do otherwise. Or, like you all, doing dumb things just to escape.  With this stupid Covid crap, we were totally isolated, I would not think of hiring someone to come in during the worst of it, so I just sat in a dark corner of my house some nights, drinking wine and crying my eyes out.  What a horrible disease, what a terrible curse that this happens to so many nice, intelligent and undeserving people and their undeserving loved ones.  I have wished he could just die - it would be better than this torture for both of us.  Maybe that's horrible to say, but we say it about our pets all the time -  "it's time to put him down, poor thing".   But he will probably be one of those who lives with it for 10 or more years since he's pretty healthy otherwise.  He's almost 13 years older than me, so at 64 (me), I feel like I am having some of my prime years robbed.  Can't travel, can't help out with grandkids, can't go visit my other children - heck, can't even take a walk by myself!   Well, there's my vent.  Good luck to all of you, and if you can hire anyone to help out with any of it - their care or your chores to lighten your load, I highly recommend it.  I know it's not a permanent fix, but it's been a good bandaid for me right now.  Hugs to you all.