Lostinva Asked July 2019
So tired of the guilt trips! Just when I thought I was getting over them thrown at me, now healthcare professionals are laying it on!
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I’ve gotten over the guilt from family members & now while trying to find a long term care facility for mom, healthcare professionals are not talking that with me, pushing me for in home care or a daycare center Monday-Friday. They all say, the goal is to keep her out of LTC! Excuse me, do you put up with what I put up with daily? The nastiness, selfishness & ungratefulness? I don’t think so!!! Mom puts on s good act meeting with them & let’s lose on me while driving her home!!! Again, here we are with people that don’t understand nor really care. Thanks for letting me vent!!!
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What they mean is "The best thing for Mom is be cared for at home." That's honest. Maybe that would be best for Mom. But Mom isn't the only one involved here. If Mom can stay at home without hijacking anybody else's life, that's one thing. But by the time these conversations start happening, that generally is not the case. Some major sacrifice by somebody else is required, even if Mom is a perfect angel. Which it sounds like your Mom is not.
Unfortunately, you need to push back against people who try to guilt you into sacrificing your own well-being for Mom's. She will adjust to life in a care facility. She'll get better care and more attention there. And you can get back to enjoying your own life.
The people who said 'the goal', well, it's their goal, not yours. You have a different goal. You're trying to have your mom taken care of by the professional because you can no longer do it. Go and reclaim your life.
When someone lays guilt on you, throw it back at them. Tell them to mind their own life, and that they don't know the stress you have because they don't walk in your shoes.
My parents had a primary geriatric doctor, and without asking me about my time frame, she knew right away how difficult it can be for a grown child to be a caregiver. She would schedule testing right then and there so I wouldn't need to take time off from work just to come back to the office.
And when I was in the exam room with my parents, whenever she would ask Mom or Dad a question, she would glace over at me to see if I was shaking my head "yes" or "no". Anything questionable, she would rephrase the question so my parents would have a better understanding.
Healthcare people need to understand that we, the grown child, are not professional caregivers. It's like going on a job interview with zero experience.
in response to one of you, you’re right about the Dr she would need. Our internist thinks Mom is the next best thing to chocolate because she puts on quite an act for him. I just shake my head, she has him fooled too.
I've also noticed that, at least in my area, hospitals seem desperate to get patients out from almost the moment they come in. Within hours of admission, someone will be stopping by to discuss the "discharge plan". Before any diagnosis, even. Before any plan of care, you're supposed to formulate a discharge plan. Oh, and if not ambulatory, they want to start physical therapy, to get you on your feet again, before they even figure out what's wrong with you. Jeez!!!!
Now my MIL. TG the decision never had to be made where she was going. Yes, she came across the sweet little lady to everyone but her DILs. Even now my husbands cousin will say how sweet she was. Yes, as long as you did what she wanted u too. When she didn't get her own way, she got nasty. I think her boys just let her have her way. It was easier. Then they just did what they wanted. My DH new how to handle her. So did my SIL who had been the "girl next door". My other SIL fought her tooth and nail. MIL was not going to rule her roost. That was my SILs job. Me, we had one big blow up and my DH stood by me. I was always respectful and nice. We had some nice times but I had seen the nasty side.
You need to tell these people what Mom does behind closed doors. Take a witness. Stick by your guns. Tell them mentally and physically you can no longer take care of her. She needs a placement. Like said, get a generic doctor who knows what goes on with the elderly. Does Mom have money. Get the doctors order for 24/7 care and start looking for a nice LTC. If no money, apply for Medicaid. They give u 90 days to spend down any money she has. There is paperwork u need to provide. U need to find a bed for her within that time. Placing my Mom went easily thanks to the people at the LTC facility. Mom paid two months privately and transitioned right into Medicaid. If u can afford a lawyer, Medicaid allows you to use Moms money, it does make things run smoother. There's someone else who can help u make the right decisions. Its just that it cost 5K to retain one the both times I needed one. TG not out of my pocket.
When I was young, I used to cry when I got mad. Now, I get mad. Maybe you need to get really mad or cry. "I can't do this anymore".
my mom has Medicaid, looking for placement. Just frustrating that if I don’t find placement in 2 wks or place her in a M-F daycare program she loses her Medicaid status. They push & push this daycare &/or home care. How do I get people to really understand what the daily struggle is!!! We left a mtg Friday for the daycare & Mom was her pretend sweet stuff & tore into me while getting her in the car!!!! Ugh!!!! I’m seeing my Dr next week, I’m hoping he’ll listen & help me with Mon’s placement.
I’m mad & I cry a lot & can’t mentally or physically do it anymore!
Best of luck
Back tomorrow visiting LTC facilities, I will speak out this time, I have to. Thanks again for the encouragement.
https://www.nytimes.com/2017/06/24/science/medicaid-cutbacks-elderly-nursing-homes.html.
"While most Medicaid enrollees are children, pregnant women and nonelderly adults, long-term services such as nursing homes account for 42 percent of all Medicaid spending — even though only 6 percent of Medicaid enrollees use them".
It's the perfect storm of elders living so long, while being the sickest & most expensive.
Can you do it? 24 hour care can put a lil damper into the savings,retirement, life...
day care, is a couple hours maybe everyday or every other day... who pays for that?
Daycare may just come up to you one day, and say, hey your mom is not benefitting anything from being here, and she is more of distraction, and nobody can really watch her for 4 hours straight, we suggest you try something else...
Family Members want to pitch in their 2 cents? Let them, drop mom off and let them be the Daycare a few days a week or everyday. Ok, I am not doing a good job, let's deliver mom to your front door, and you take care of her one month, and I will take care of her the next mom, then let aunt take care of her for a month, and then let's drop mom off at uncle house for a month, and then let's take mom to live with child #2, for a month....or whoever is complaining.
Tell them, WALK IN MY SHOES FOR A MONTH,YOU TAKE CARE OF MOM, then come back and talk to me afterwards. See what happens...
My friend retired just in time to take care of her mom, then a few years later, her sister retired :) Yeah.. You are retired too!! Sister, start looking for a place for mom in your neck of the woods, It's your turn to take care of mom !! They moved mom up next to sis, and they found a wonderful place, and my friend would go up there every other month and visit and see mom and sister. It turned out great.
It's easy to place criticism if you haven't done it. Let them try and see how long they last....
I am in your shoes. I have been caring for my mom since 2005. I love her very much but it certainly isn’t easy.
You are right. No one knows what it is like until they have walked in our shoes of doing the daily grind. It isn’t possible for everyone to take on this responsibility.
Recently, I called my cousins to chat and receive some support from them concerning my mom.
As most on this site know, my mom has Parkinson’s and her brother, my Uncle Eddie had it too. He spent the last few years of his life in a NH. His children had NO CHOICE in the matter. This is why, My aunt died in 1998 with cancer, leaving Uncle Eddie alone. He has 5 children. Two of them offered for him to move in with them. HE REFUSED! Saying that he wanted to be in his own house.
Well, he had a big two story with a basement. He couldn’t go up and down the stairs anymore. He was living in the basement that didn’t have everything he needed. It was basically a bedroom, laundry area and a toilet.
He developed a UTI and it went into sepsis. That was the deciding factor to placing him in a home.
He wasn’t cooperating with the family and wasn’t taking good care of himself. He was dehydrated, not eating properly. Plain and simple, for him it wasn’t a good idea to be alone at his house even if that was his desire to do so.
His daughter suggested him moving into an assisted living facility since he refused living with them.
He refused living with his daughters as well living at an assisted living facility and told his daughter that he wanted a private nurse 24/7!
Do you know what my cousin told him? “Dad, that is a NH. I will find a place for you to live.” She did. It took her awhile to find the best fit and she visited as often as she could.
She and the sister who offered to take their dad in work full time. So they would have needed sitters to help.
Their younger sister who lives in a different state criticized them for putting him in a NH to which she was told, she wasn’t helping care for dad and had no right to criticize because she never saw him!
Their two brothers, one is distant, the other helped once in awhile.
Sometimes, there is no alternative but to place parents/family members/spouse in a nursing home.
You already know others will act as if they know what us best for your situation. They don’t.
Yes, it is frustrating but you don’t sound like a pushover to me. It will take a little while but with some research you are going to figure this out.
I wish all the best for you. Don’t despair or give up. Keep plugging away. At some point someone will listen to you.
Thanks for asking. I had another post about her being in hospital for CHF, don’t know if you saw it. Anyway, I talked Rehab with Social Services & that goal was to transfer to LTC after. The facility that we’ve wanted all along accepted her but the hospital dropped the ball & told Humana we were wanting LTC which I already know they won’t pay for. She has Medicaid for that. So she’s home, can barely walk, spends most time in bed. I called her Dr, told him I wanted rehab/placement at facility of choice. He called the facility, he is doing a face to face with Mom next Tuesday. Praying for a solution & for him not to just sit & smile at her, try to change our mind like other healthcare professionals but realize what we are going through with her. My husband & I now have to go separately to church, errands because she threatens to “go for a walk”. Even though she’s weak, I know she will try & then end up falling like last time. I’ll update after Tuesday’s appt.
How are you doing??
Wow! You have got to be exhausted! I know about going to church separately. We do that too.
My mom will be 94 this November. I will be 64 this October but I feel like I am 104 at times! Hahaha.
My mom just finished doing rehab. It definitely helps if they are willing to do the work and mom did it. Proud of her for that. She’s more agreeable with others than me.
I hope you are able to put all of this behind you soon. Hang in there. Thinking about you and many hugs!