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?
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.
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.
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.
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.
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...
Im sure my father misses her but life is so much more peaceful for him now that she’s gone.
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.
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.
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!! 🎉