
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?
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....]
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.
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!!
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.
That conversation in the shower was a back handed compliment designed to manipulate you to keep you in servitude .
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.
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.
When they don’t get POA in order and expect a relative to pick up the fallen house of cards .
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.
I miss the freedom of not always being worried about everything, of not feeling sick with anxiety.
Sometimes, like now I feel there is no way out, no me, I don't exist except to take care of Mom..and my Dad's wants and needs. He is constantly taking his financial stress out on Me, almost blaming me...for State Farm dragging their feet for Mom's $9,000 left of her (2 yr) plan. I am fried. Caregivered out. Compassion fatigue.
Siblings don't help, honestly the boys can't or won't because "it's too hard seeing Mom like that".
They are in a long term care facility - I love my Mom more than anyone on this earth. And I get upset, angry, lose patience. It's never ending. I must start to not be there 6 times a week. And stop doing their laundry, showering Mom, cleaning and shopping! Ranting, I know. Been a rough week as I'm crying typing this. Thank you, everyone, here for being so authentic and wise and straightforward.
That’s when you say …..
“ Good idea ! let me know what day you are coming to help with that “. 🤔😄
I have only been at this for 6 months but it feels like 6 years. I have not been home in months. I am not the point I have asked my cleaning lady to start throwing all the food away in the pantry.
My daughter is in the middle of nursing school, and I made her promise that she will never feel guilty for not caring for me later in life.
Happy Thursday
While I am still quite numb, I also have a feeling of relief that he is no longer struggling, hurting or anxious. I hope the same for your loved one when it is time. Again I want to let you know that I also struggle with anxiety, depression…everything. Just letting you know there is light and life for you.
hugs from Denver/ Gretchen
Hang in there everyone. Wishing you Peace, Love and Light!
Yep, everything is about her. I don't care what I'm doing, I have to stop everything and deal with her. If I don't stop, she will stand in my way and make it impossible to get around her. For example: even when I have an arm full of clothes she'll do it to me. I know moving her rollator so I can get by may make her think twice, but knowing her, she would shove right into me.
i do not want to be the person that sucks the life out of my children . At the same time I love it when they are here. My husband mostly helps me doing the cooking , cleaning and driving. The kids fill in. I consider myself lucky.