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?
Although both I and the hospice nurse explained the dose increase to her more than once, when she “realized” it over 3 weeks later, she accused me (us) of trying to kill her.
So I ended up changing all her daily med containers back to the mini dose ( the 0.25 dose is actually intended to take “as needed” in between regular doses). After less than 24 hours mom was all out of breath just from sitting in bed, and couldn’t get to the commode without more medication.
So I convinced her yesterday to go back to what the doctor prescribed. She agreed and I re-did all of her med containers. If we now have a repeat of “you’re trying to kill me” I’m done. I can’t keep jumping through theses hoops. And this is part of why she’s having bathroom accidents, because she’s under medicated - you can’t just suddenly cut a benzo dose in half.
The hospice nurses also want to raise her morphine dose to help ease her breathing. She’s been on 2.5mg for months and it’s doing nothing for her. They want her to try 5mg, even if it’s for only one or two doses a day. But again, she thinks they’re trying to kill her. Not taking it makes her life harder, and it makes her much more difficult to care for because she needs the meds to get herself to the commode. It’s impossible!
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.
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.
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.
Complaining is her sport and she will have plenty to keep her busy in a facility 🤔🙂
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.
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.
You did good I think. Keep it up. They can't fight if no one fights back. I read years ago, when someone starts to raise their voice and yell, you lower yours. They have to stop yelling to hear you. There's always, walking away. And maybe it would be better that a Nurse explain to Mom why she needs an increase in meds. They never believe their children. Keep grey rocking her.
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.
That along with mom having a large hoarded house which will take months of work even to put on the market “as is” won’t give me any more time to myself than I have now. I almost get the sense SHE is afraid of having the conversation with mom.
I talked to mom’s pulmonologist about the med issue. He seemed both stunned that she is still alive and that she is getting by on minute doses of medication. He is going to try to convince her to take the recommended doses, which are still tiny. I said she is talking about next Christmas, and he said that was unrealistic. That’s not much to go on. He gave me the sense that she doesn’t have much time left, but he thought that 4 months ago.
In the meantime my SIL quit, my niece, who gets paid, said she can’t come today because of the storm. I sent my husband to pick her up (45 min. one way), because I can’t sleep over ANOTHER night and miss work.
My next move is to get a weekend caregiver, but I’ll have to fire my niece, which she doesn’t deserve and mom will lose it.
Probably a waste of time, but I texted my brother, who lives close by, that I think is a shame mom should have to spend her last couple of months in a NH and spend ($18,000/month (New England)) because he can’t come for ONE weekend day.
I feel so frustrated and trapped. Mom’s mental state is declining. She’s arguing about things that don’t make sense, and I can sense our aid is ready to quit. It feels like a no win scenario. I’m depressed.
How many more months of in home care can she pay for?
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.
Get out . How dare that hospice lady weigh in the way she did . Hospice is supposed to be there to support the family as well. And this is not working anymore. IMO place Mom . Sometimes they linger and you need a new plan . Sometimes the promise has to be broken .
(((Hugs)))
I have another thread on here expressing that I thought mom might be starting to show signs of dementia. There seemed no reason to peruse getting a formal diagnosis at that time. But this decision could be a disaster.
Now I realize that my brother has been getting mail there since he moved out about 5-6 years ago. Even if mom goes into care I’m convinced he will just move in and claim squatters rights. If she passes I will be half owner of the house and all the injunctions and complaints by the neighbors will be at least partly my responsibility. I was already super anxious and now I’m a wreck.
Sorry to hear about your mom considering letting your brother move back into the home. I would let mom know your opinion and feelings on this and the consequences that this decision will have on your willingness or unwillingness to continue taking care of her in her home.
Just because he gets mail there doesn't mean you are screwed in regards to him saying he lives there. After all he has to have a drivers license or some type of ID showing his current address. Even a background check can show where he has been living for the past 5 or 6 years to prove that he does not have residency at moms house.
It is an added layer of stress that mom is heaping on you that you certainly don't need. Once mom passes if brother does move in he will have the choice of buying out your share of the house or you will have to formally evict him and get the house sold. But it sounds like brother is going to be a problem sooner rather than later and even more so after mom dies (since she is his bail out person when he needs help).
I hope mom listens to you and does not have brother move in. But if she doesn't you may have to be prepared to walk away from being moms care giver. Good luck and I am sorry you are having to go through this on top of everything else.
So, first, consider firing your hospice provider if you have other companies to choose from.
Second (and probably first, really), don't worry about promising things to your mother that you simply can't do as time has progressed. You don't have a crystal ball that tells you what the future holds, and clearly you are not able to handle your mom's care without killing yourself first.
I suggest you sit Mom down, tell her life stinks and doesn't always work out the way we want, and as you want her to live, she's going to a nursing home (if you have the power to do that). If you don't have that power, then YOU set the rules and boundaries, and she will get to decide if staying home is as peachy as she thought it would be. YOU will decide when you're there and for how long, YOU will decide how her bathroom issues will be handled, and YOU will tell her these things without tears and without anger. These are facts you're presenting her with, and her tantrum nor your regrets or feelings of guilt will change how things are going to be.
Be kind to yourself first and foremost.
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!
As far as the quit claim idea. I always assumed I would do just that. I never expected to inherit anything from my parents. But after the physical, social and emotional toll the last 3 years of caring for her has taken on my family and me, I feel it’s wrong to let my brother, who has done nothing but take, walk away with a house. The house will be the only thing left if she lives a few more months.
You mentioned incontinence and peeing accidents as problems. Have you looked into the external female catheters? I got one for my Mom and wished I had done it sooner. They are not inexpensive but can be very helpful in eliminating how much changing of pads etc has to be done. Not a good choice when likely to be soiled by feces with any regularity as the wick must be changed every time this happens.
This could possibly be of help to her, the aids and you. I am sorry you are going through all this. It is tough!
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.