Had to tell mom in home hospice that we have to consider LTC.
I didn’t plan on doing it yesterday. I figured I’d wait until the holidays were over. I arrived yesterday after being there most of Christmas weekend, and visiting Tuesday and Thursday.
She had a friend visiting, bringing her Godiva chocolates when I got there. As I said before, she has constant visits, gifts, well wishes, etc. Most people would wish to be so lucky.
As soon as the friend left she started complaining, and complaining and complaining. I’m thinking how many complaints can arise in the day and a half since I saw her? I tried to be a grey rock.
Then she started in on the aid. She said when she calls her the aid “saunters” in. In other words she doesn’t come RUNNING like mom wants. This was all leading up to mom telling me she had more bathroom accidents.
She’s had bathroom accidents when I’ve been there too. But because she was blaming the aid, I ended up telling her that she has to start thinking about a higher level of care if she becomes incontinent.
She lost it and said she would die before she goes to a NH. I said what are you going to do if you can no longer use the commode? She yelled, “I’ll pee all over this carpet if I have to!” I said well, the family is not going to clean that up. She’s already flat out refused a catheter, btw.
Then she started yelling and crying, including YOU WANT ME IN A NUSING HOME!?! You WANT me to DIE!?! I stayed very calm and said I don’t want either of those things, but don’t feel comfortable changing you if you have to use depends. And when I’m not here and my husband or son have cover for me, do you want THEM doing it? (She won’t allow me or the aid to even be in the room when she uses the commode).
I didn’t even get into the fact that I work M-F and spend most of Saturday, sleep there Saturday night and much of Sunday at her house, giving me no days off. This has to end soon, and I think when we apply for Medicaid they won’t pay for our private contractor aid. I’ve brought ALL this up before.
She calmed down pretty quickly when I didn’t take my “cues” i.e. where I start crying and saying of COURSE I don’t EVER want you in a nursing home! I really DONT want here there. I want to make this work. But she’s running me ragged, doesn’t care that I’ve given up my life, and does nothing but COMPLAIN despite having a wonderful, incredibly patient aid, attentive and caring family and nonstop friends and visitors.
I know many of you have suggested LTC. I guess I’m still looking for affirmation that I’m doing the right thing. I feel so bad (and stupid) that I promised I would bring her home to die, and now I can’t keep my promise. for us to sit down and figure out if she can go to an assisted living facility. Am I am a terrible person?
Going grey rock until that rock detonates doesn't work long term.
So, not a talk where you are driven into "reacting", but the long, hard, honest talk.
First get together with family.
Then all speak to Mom that this is no longer sustainable.
You have been enabling this a long time.
That MUST stop. If it doesn't she will not move, and there is no way you can MAKE her move; she is NOT INCOMPETENT. She can sit in her own feces and urine for life if she chooses; many do.
You need to make this short and sweet and gently clear: tell her..............
"Your being at home is no longer sustainable. Between hired aids and your family you currently need 24/7 care.
Your family cannot do it any more, and we are, by trying to do it, wearing ourselves out and enabling your denial of your needs. You can yell and scream now how we hate you and want you dead, but that won't change the facts.
It is time for you now to choose the best place you can.
We did not cause your aging problems; we cannot fix them; and OUR OWN AGING PROBLEMS are already on the horizon.
We don't intend to make those problems the problem of our children.
That isn't our right, nor is it what we want for our children. And you should not want it for YOUR children. It is selfish and mean."
Your mom IS selfish.
You already know that.
And you have allowed yourself to be victimized by it long enough.
If your family chooses to continue to be victimized by this you already see the writing on the wall (or more appropriately smell the stink in the carpet).
So I will leave it --it's your choice to make now for yourself.
Don't expect her to agree or to care how you feel.
She well may not. In fact I would be SHOCKED if she did.
But stop enabling this bad choice of hers, and stop trying to kill yourself with caregiving and guilt. You didn't cause it; you can't fix it.
And if you throw yourself on her funeral pyre then that is your own choice.
I am so very sorry. I know how ongoing this is. I DO BELIEVE you are slowly coming to realize that what will be must be, and you have little control over it.
As to a catheter, doctors are loathe to put them in as an answer to the coming incontinence. They cause infection and sepsis.
Why on earth are you asking that?
People who need the help of others need to be flexible and express gratitude and humility for the help they are receiving.
Your mom is a real piece of work. She should be ashamed of herself.
Perhaps next time she screams that you should remind her that she actually is dying, thus why hospice was brought on board.
Like said many times on this forum, in home caregiving only works when it works for ALL parties involved. It's more than obvious to us all that it isn't working anymore for anyone, including your mom.
Best wishes in making some hard but necessary decisions in the new year.
Complaining is her sport and she will have plenty to keep her busy in a facility 🤔🙂
Thank you for all your comments. I agree Alva, especially about the family meeting part. But the family is really me, my husband, and my kids. So ultimately me. That’s what makes this so hard.
My ex SIL was here this morning, and for the very first time looked totally exasperated when I arrived. She doesn’t get the flack I get. But today she was the recipient of the “I’m not taking the high dose of clonazepam” routine. Mom’s agreeing to take the medicine as prescribed didn't even last 1 day.
Tuesday I will call the hospice agency and tell them someone other than me (like one of their nurses) needs to manage her meds. I just can’t anymore. That’s step one. The subsequent steps will be harder.
None of us can live up to ‘promises’ about the future, when we don’t know what the future will bring. This is NOT a case of ‘I'm not keeping my promise’, this is a case of ‘my wish hasn't come true’. Much like divorce!
Someone said you’ll keep doing it until you decide you’ve had enough. I’ve been good about sticking to deadlines I set for myself. Hiring day help by a certain date, hiring night help, then hiring live in help. Now I’m writing here to hold myself accountable, that I’m setting for myself a 90 day deadline (starting January 1) to move to the next level, which will probably be a SNF.
I’m only caregiving about 24 hours a week now, and sometimes less when family helps. But it’s sucking the life out of me. Especially with caring for her hoarded home and managing her caregivers and finances on top of it. I have to know there is an end in sight.
When she starts that "you want me to die," business, what if you calmly said, "Mom, we're all going to die sooner or later," then walk out.
Snarky comments not advised, but here are some anyway:
"Mom, you're going to kill me with your anger. I may die before you do." Walk out.
"Mom, you're completely unreasonable. If you can find someone who will do my job better than I do, by all means hire them. Buh-bye." Walk out.
I knew a family that when ANYTHING started happening, no matter what it was, someone got angry immediately. I mean yelling, screaming, stomping, accusing, storming out. That person won. That person was in control. No resolution of anything was ever possible because one person grabbed control in that way. Others played the game of being cowed, hiding, crying, and so on. Control was passed from person to person in this way; it was the family mind game. They even did it when things got dull. Someone would manufacture a crisis, such as cheating at a board game, so everyone could blow up. Have you ever tried it with your mom? Desperate times, desperate measures.
I am going to let that person know that “I” am no longer going to play that role. The case manager can reiterate to mom that the family can no longer provide so much of the care, and SHE can discuss facilities in the area with mom. Mom makes her own decisions, so mom can decide on the facility.
Also, one of the nurses or the case manager can help mom decide to take or not take her medication as prescribed, and let her know the consequences of her poor decisions. I’ve taken on way too much responsibility and hospice is happy to let me do it. They’re getting paid. They can take over.
Neither of the 2 places I’m looking at have their own hospice. So the hospice agency would keep her as a client either way.
The kicker is I can’t do it forever. I could push through another 90 days. But that’s what I said the FIRST 90 days. If we don’t hire any more help she could stay home almost another year (or maybe 9 months.) I’m assuming weekend help will be more expensive and probably cost me 50% more for an added 2.5 days, so it would shorten the home stay considerably.
There’s another issue, too, but I’m too tired to even get into it right now after spending the whole weekend there. And she just sits there holding court. She has no idea (nor does she care) that I’m like a wrung out dishrag right now, who has to go to work tomorrow. She’s probably demanding another Ensure as I write this.
She said something to my daughter about how she wants to be remembered. Two years ago she would have been remembered as a loving, caring, (albeit sometimes frustrating) mother and grandmother. Now she’s going to be remembered as a demanding, insensitive, b word. After this weekend I’m certain that dementia is playing into it now.
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