
I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
First is the Emergency Room Honeymoon. Husband is stoic to a fault; by the time he consents to go, he tries to convince everyone there he's fine! Slows down diagnosis & treatment, of which he's convinced will be terminal.
Then comes Hospital Honeymoon. After discharge in bed-bound condition, his relief at being home rests on his lingering need for constant bustling attention, no-delay requests, and resumption of things the medical team forbid he ever have or do again.
Home Health Care Honeymoon is the most protracted. Too many visits, too few, playing PT bed-exercise assignment hookey, and the struggle for him to plug his own elusive initiative back in. For all the real life-saving help he's gotten, though, and his own gradual weaning from helplessness and fatigue, I'm eternally grateful.
I just fantasize at times what it would be like to have those medical Honeymoons include automatic inclusion and coverage of solo at-home caregivers, too. Ha ha!
But, it's all worth it when we start the slow dance back toward whatever level of restoration may be possible each time. My celebration today: husband made the oxygen-assisted walker-journey from bed to the bathroom for the first time in 4+ months after having rare (incurably mutating) double pneumonia and severe anemia! His health is stable & improving for now and meds are helping keeping the bugs at bay. So, for me, Post Honeymoon bliss is the Best!! 🎉
Why are WE the Ones who end up being the sole Caregiver? Because-think back to a time -say-when you first met your now disabled spouse. You may not have known his past History -but his Family-So encouraging of the "relationship" with you , did , and saw a lot of "potential" in YOU -what a "good wife" you could make . Values such as Loyalty and Kindness could serve them well.
Another factor that points to You as Caregiver, particularly over the care of a parent, is your position among your siblings in a Family. Eldest, Middle Child, Youngest, whichever was held most responsible for Family Unity, even back to childhood , Bingo-their IT. Or, as you grow much older, the Care can fall ,without question, on the Younger ones. It often falls, too, on the healthiest ones , which is supposed to serve as your big reward for living well. "No good deed goes unpunished" .
Finally -I just accept it and realize I still wouldn't trade places with anyone. This is My journey.
I miss them and I am so grateful that I was able to take care of them the best that I could and I would do it all over again.
RIP Momma and Daddy
PS: I am now a caregiver for a wonderful, smart woman who reminds me so much of my mother. Also, I was a caregiver for a sensitive, caring man who passed away last year.
It is a blessing to have known him and his beautiful family and a blessing to work as a caregiver...I guess it's all about one's mindset.
She has made my life and my parent's life a living hell for the past 25 years, and though we've done everything in our power to help her so many times, she's squandered and trashed everything she's ever been given.
So, yeah, I have a caring heart too, but I'm beyond depleted and I have absolutely nothing left to give. I've given it all to my beautiful, amazing parents who would now want me take care of me and take this time to "refill my well". (my mom's words)
So, I'll probably have to pack up all her shit myself (which I've done twice before) and have a huge blowout, but then once this house is sold, I'm getting in the car and driving away from this town, this state, and my sister with my effing hair on fire.
my FIL is very self centered and very seldom is grateful for anything. My husband and I get 1 week a year away together.
i feel so guilty but I never planned to be a full time care giver of a 92 yr old at 72.
Im sure my father misses her but life is so much more peaceful for him now that she’s gone.
The conversations are still there to a degree but they are way overshadowed by a never ending set of problems to be solved....
I leave their place every day feeling depleted and defeated. My dad's words to me today as I left were about arranging for a "babysitter" for mom while I take him for a test he needs done (he says this in front of mom who has severe anxiety when left alone for long stretches but is fully functional cognitively) and upon hearing of a concert I'm going to "are you wearing a mask? Don't get covid".
Everyday he talks about "when your mother gets better" or focuses on everything she can't do. Lately he's harping on the fact that they can't drive 45 minutes to babysit their one year old great granddaughter, again, in front of her. He calls her walker a "stroller" he just doesn't THINK. The negativity is destroying my soul.
My brothers get to come visit once a week and have a nice time mostly. They both work full time plus, it's not get their fault, and they never criticize me. I'm just jealous I guess they get to have actual visits. I need to get back to counseling to reframe it all. It's hard...
It is the constant blame by all of those family members who do not help.
Never a kind word from one of the non helping family members.
All they wanted to do was call the shots, then whenever my sister, brother or I did anything or made a suggestion, it was always, "well, I wouldn’t/ would've done xyz instead." Or, "you could've done abc." We just got tired of all their absences, their constant litany of excuses of why they couldn't be there daily for 1 week to feed her & spend time with her, why they couldn't spend one night a week when we were staaying about 4 to 5 nights weekly. The played the horrific blame games of whose fault it was that mon was in such dire shape towards our dying mom, her doctors, and even the 3 of us, and the never ending "well, I woulda, I could've, you should've, you shouldn't have......
Yet that's ALL they did was nip like little lap dogs from afar!
Taking care of mom was exhausting, but in a good, loving way bc she needed us & appreciated us. Dealing with our 2 siblings head games was diabolical, wicked, and beyond exhausting!! Once we were awarded Emergency Financial and Medical Guardianship for mom. Doing this allowed us three siblings to get things done for our mo. Vs her laying in limbo for days on end waiting on 5 disagreeing siblings to finalize on even the simplest of tasks at hand. It was the best thing we could do i our situation to benefit our mom!
I sincerely feel for those that are "forced" into caring for parents, siblings whomever. God bless you caregivers. You truly are angels on earth. I wish you peace, comfort and knowledge everyone on the forum is with you in spirit.
DH (frantically): what time is it? Why didn’t you get me up?
Me: I tried, at 8:00
8:00! Why so late?
I also tried at 7:00
You did not! What time is it now?
It’s 10:00
10:00?!? It can’t be! I never sleep until 10:00!
Honey, you often sleep until 10:00, especially when you’re up and dressed at 3:00 and I have to spend an hour trying to get you back to bed.
I don’t do that!
OK. You don’t do that.
Well, you’d better get me up earlier tomorrow.
So -we didn't; travel much for awhile , until we more recently figured out how to Mobilize , despite his poor condition and inability to walk . With some help from a family member we got a hold of a wheelchair & set out on some adventures this past Summer-some quite far away. He did okay & the trips served as a good distraction for him. Now we are back home with no plans to go Out again or hit the road. We are thankful for our Home , what activities we Can do together -both inside and out . We spend time working on Hobbies at home of our own separate interest , doing some gardening, or going for walks nearby. We 've developed our own "schedule" -doing things in our Own time. We still have the "freedom" to go do things either just the 2 of us, or with family or friends. There are still a few favorite old activities of my husbands he can NOT do anymore , but we appreciate what we Can do .
Mainly, our Retirement didn't really go "by the book" but has instead taken many interesting twists and turns as we had to plan , at least our adventures, around a lot of Extra planning in order to make it Happen. Once we were able to check off what had become our "bucket list" we held a much deeper appreciation over times, that in the past, we had just taken for granted. I don't ever recall having so much Fun over past family vacations as we have had just in these past few years, despite the setbacks.
I hope you can find even little ways to enjoy the Moments with both your mom and your husband & achieve your dreams that may have to be rekindled , or , need be, completely morph into something, perhaps what you'd never imagined.
I have finally started saying when are bad times to visit like first thing in the morning when you have had a sleepless night caring for someone who thinks it’s breakfast time at 3 am.
Your comment is down the thread a little so I hope you’re still reading. I am on the same page as you even though my husband is not to the stage your husband is.
I feel like you are on the right track looking at MC, and the sooner, the better. But please, make sure your financial house is in order first. When one is dealing with a spouse, not a parent, and considering long term care, all of your combined marital assets are in play and if you haven’t already sought professional advice from an elder law attorney, please do it now, before placement, to protect yourself to the extent that you can.
I’ve been slow on this because my husband’s behaviors are tolerable so I apologize for being all ‘do as I say, not as I do’ here, but things can change so quickly with dementia and finding the right placement situation can take longer than you think.
See if you can get some help from a home care service right now before you self-destruct. Even a couple of hours a week will give you time to see an attorney and find a MC facility. Ask questions on the forum if you need guidance; there are wonderful, experienced people here to help you.
I agree, but care facilities (nursing homes, memory care, assisted living, etc...) are in business for a reason.
Here are two facts for why they stay in business.
1) There's only 24 hours in a day. No one can add more.
2) No one no matter how much they love a person or how kind and compassionate they are, has an unlimited supply of patience.
Sure, we've all seen old people get blown off in nursing homes or memory care facilities and it's terrible. When the CNA has to get care done for ten other invalids who move at snail speed or are being difficult.
I was a homecare worker for 25 years. I saw what can happen when one person has to deal with an needy elder entirely on their own. Everyone needs help and sometimes help at home isn't enough and there has to be facility placement.
That being said, I feel for you. At 27, nobody can blame you for feeling the way you do. Full-time caregiving at such a young age is unnatural. Yet there you are. Doing the damn thing. My advice? Put yourself out there, because you sound like a catch. And I bet there are plenty of girls (or guys? I don't want to assume LOL) who would love to Netflix and Chill with you.
I waited to place my mom when I thought she did not know me. It was easier on me. I cannot imagine the heartache of making that decision for a spouse, However, in retrospect, I think my mom would have adjusted better had she been a little more clear headed. She would have made friends easier and enjoyed the activities more. I waited too long. Just a thought. I wish you the best is this difficult journey.