
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?
As the sole POA and decision-maker for my Dad, I would appreciate family asking how I am doing, instead of asking me intrusive questions about finances or how I made decisions in the past. Nobody helped me or even offered emotional comfort when I really could have been helped out with just some kindness and encouragement.
When we moved my LO weighed close to 290 pounds. Without real effort we improved our health and at 20 years he had lost 85 pounds.
About that time we traveled to their area for a long weekend. We were so proud of the improvements in health. "Family" never acknowledged the changes...but after we left they called our state Adult Protective Services and filed a complaint that I was neglecting and starving him! Of course, the State investigation showed the allegations were totally unsubstantiated. A couple of other issues The Family also reported were investigated and of course unsubstantiated.
And remember
So many other incidents that they reported had the same result.
So all of a sudden the specific numbers on his BP/ Blood count / cholesterol etc )were sooo important to them.
It took over a year to get Medicaid approval. There really is a lot of "administrivia" to address and then "hurry up and wait" for their review and decision
He is now in a Long-Term Care facility (stroke, dementia, and general decline in his physical status.) He is very well acclimated and seems happy!
"The Family" didn't want to participate in planning and discussions of services- I think they were afraid I would ask them to contribute financially ...
They expect a personal status report every week - UMMM - NO! I initiated writing a "brief note" on what's happening (mostly monthly unless there are issues) and sending it to his son as the contact point so he can fwd it to the "the family" so everyone has the same info. None of the above are happy with this - Oh Well!
In the meantime, their contacts with LO are Christmas, maybe Fathers' Day ,July birthday, and Thanksgiving or something. And no longer by phone since he can't hear or answer.
AND, in spite of EVERYTHING I am doing to keep LO safe and healthy - The Family never asks about how I am doing or how can they help me...
I think this goes back to when LO's family was caring for their grandmother and they had "problems". "OMG, You're going to have to sell the house, don't sell the truck without asking me...etc.
Bottom line - SUCCESS IS THE BEST REVENGE.
When they don’t get POA in order and expect a relative to pick up the fallen house of cards .
Well, after preparing my home for mother’s arrival- adding a half bath and giving her my bedroom - it is all hers while I sleep on a twin bed and bunk with my treadmill - not a word of thanks. Not a word of “it looking homey and comfortable” - I can only ASSume these things because she sleeps quite well in there!
Well my home is 8 hours north of her so now - after reading all of your advice on here I will now take it and run!
I'm taking her back to her home in 2 weeks- going to her lawyer- either spelling out a plan for her at home or AL.
I’m taking my life back. I have spent almost 2 years in this dysfunctional mentally stressed state in her home while I have other people taking care of my home.
No vacation - no appreciation- I’m mentally and physically exhausted.
But it’s nearly over for me. Just have dad now and thankfully he is a lot less demanding. Just give him a jelly donut every day and he’s happy. He is just a nice person.
That conversation in the shower was a back handed compliment designed to manipulate you to keep you in servitude .
They acted insulted and focused on each other's facial expressions more than my explanation suggestions and problem solving. Still they act as if I've never voiced my concern. When they come to help me they hurry as if they need to be anywhere other than with me.
I've sat down and told them exactly how their actions and lack of make me feel. They act like they're listening and then they think that after our talk all is better. I tell them No it's not. Once I see that you have heard me and are making the needed changes then I'll start to feel better. Then when those changes permanently take place of the problems then and only then I'll feel comfortable. So far my words fall on deaf.ears and the answers I get are YaYaYa yes yes I understand as they quickly busy themselves picking up or straightening up shelves Then they hurry out my door with a quick ARE you good? And before I can answer they are gone.
My disability is new. Being dependent on others for everything is new. Not living alone is new. I hate it here. I dislike being old but I really hate being old and broken and all alone in a house full of people. I'm stuck here and I don't want to anger those who help me transfer to the commode etc.
So not being heard not being fed not being treated as a human being is what I dislike most about caregivers.
I need help. That won't happen anytime soon. Today 3 meals were served to me today I ate only one and that was at 7:30 am. It's 10:27 pm and I'm hungry.
But you are a daughter? With endless love, patience & time to spare!
You must provide all the entertainment for for your Mother.
You must strive meet her every need. To do every task she wishes. To ensure she is happy everyday & never bored.
Yes?
PS I HOPE you are screaming out a loud NO. I DO NOT! as you punch a pillow.
If not, try it!!
Longterm - We need to fight to get state agencies to prevent burnouts by sharing the burden of care for elders and children and not leaving it all to family caregivers to deal with.
My husband has a condition similar to Parkinsons plus depression. It's getting harder for him to leave our apartment (he uses a wheelchair once we're out) and I know we're going to have to move into a more ADA-accommodating place soon. However, neither of us want to* and it's manageable for now. But I'm afraid that he'll end up in the hospital again after a fall and won't be able to come home unless we move, so I'm searching.
He says whatever I decide is fine, but I've been The Responsible One my entire life. It'd be nice to really share the burden, but he just can't. It's exhausting. Fortunately, I work remotely so at least I'm here when he needs me.
[*I've long joked that instead of moving everything, I'll just pile it in the front yard and light a match. Not so funny any more....]
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.
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 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.
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 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.
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.