Mom is 95 and ok cognitively but physically she has heart failure-19 yr. old pig valve, pace maker, fluid in her lungs, been on oxygen 24/7 for 15 months, double wet macular degeneration, hearing loss, arthritis and now the newest is she can’t urinate so she has a permanent catheter. I have been taking care of her so long she forgets she’s not independent yet is guiling me into taking her back to the apartment (senior living). They won’t let her go back without 24/7 aides at $35/hr. She would want me there all the time in addition. When I say not feasible her words and demeanor make me feel terrible and I get sucked in to thinking I should somehow try and figure it out. My dad died 1 yr ago in the same skilled nursing place and she thinks the same thing will happen to him. She was just put on hospice care this week and now all of a sudden she seems to be thinking clearly and questioning everything I’m doing. My siblings live 2000 miles away and they will come for days at a time but then will leave. How do I tell her I can’t make the 1.5 hr round trip every day 7 days a week anymore? I’ve been doing it for the last 30 days.
You tell them what YOUR commitment can realistically be, i.e., one visit per week, no hands on care
If mom has the funds, she can hire aides. If she doesn't, she lives in a facility with the appropriate level of nursing care
One person cannot supply the care your mom needs. To attempt it would be suicide.
You can't do anything about the facts, if they are facts. What mom may need is counseling to help her accept the facts. Hospice may have a psychologist who can counsel with their clients, so ask about that. If she's "okay cognitively," it may be possible for her to reach acceptance. Perhaps she needs a chaplain as well.
As for your responsibility, you're doing all you can. Your life has been upended, and you want to get back to normal. Tell her that. You need to be firm and also tell her that you're not qualified to do hands-on care for her. She needs to be in a skilled nursing facility. That's another fact.
These end-of-life issues are difficult, but we can't let these elders run us into the ground when the inevitable starts happening. I'm sorry, OP.
I've had homecare clients that graduated out of hospice and lived for several years after. If the state they were in could be called living.
Bedridden and so destroyed by dementia that they couldn't speak anymore or even turn over in the bed. They started out in hospice and ended up living for years.
I think that it may be time now, with the inevitability of your Mom's final exit from life coming, for you to seek some counseling help for your own grief. I think that Hospice can guide you in good choices here.
You do not say how cognizant your mother is daily. I don't know if she is even aware of your daily visits and that they ARE daily. If she is, then it is time for HONEST discussion that you cannot do this every day. And discussion of what days you WILL try to be there. If she is not, this question doesn't matter, and is off your plate. Either, or--it has a good and simple answer.
Those who try to do everything for everyone will get NO THANKS FOR IT EVER. In fact, it will become EXPECTED of them, routine, and when they cannot do it, those who have been thusly spoiled will be very angry indeed.
I would seek some help and support through counseling now.
I would work on acceptance of the coming inevitability and on the relief it will bring that your Mom's constant worry, distress and pain will finally be lifted from her. And that you will move forward with the life you richly deserve and have earned.
My best out to you. Discuss with Hospice your needs and ask for guidance on how best to fulfill them.
Be real with yourself AND mom by telling her what you told us: Mom, I'm physically unable to make the 1.5 hr round trip every day 7 days a week anymore. I did it for the past month and now I'm breaking down at age --. I love you and I'll do my best to see you on X day(s) every week from now on, but no more.
If mom is 95, you're in your 60s or 70s. If you break down, then what? Your mother is being seriously selfish and thoughtless not to take your age and limitations into consideration here when laying guilt trips on you. #Truth.
Do what you can when you can, and leave the pros to do the rest. It's ok to take care of YOURSELF. Please give yourself permission to, and start ignoring the FOG (fear obligation and guilt) tactics. Moms led a good long life already, God bless her.
So she will have to be placed unless 24-hour care is possible. It's very expensive.
Bottom line. You cannot move in with her and provide round-the-clock care for her and homecare may not be an option. None of this is your fault.
It sucks to be 95 and sick. You can't fix that. Time for a family meeting. Your sibs can either take turns living with her and taking care of her until she dies, or they can help her get placed and take some of the blame and guilt off of you.
Your mother has to go to a nursing home. So call your siblings and tell them that they have to get on board with helping that to happen. Living far away does not excuse them from sharing in the responsibility.
Its what it is. Your Mom has to realize your a senior too.
Stop having the Groundhog's Day conversations with her. Redirect the conversations. If she persists, walk out of the room and don't return until she's willing to talk about something else. If "explaining and rationalizing" the reasons for a facility to her would have worked to convince her, it would have worked a long time ago.
If you have to tell her anything, tell her she's going into a "temporary housing situation" until she can demonstrate to her doctor that she can do her ADLs and that this is required. This way the doctor is to blame, not you.
Stop trying to convince her. May you gain peace in your heart as you move her where she needs to be.
I'm not going to sound very 'nice' about this--but tho Hospice is generally reccommended for someone with a certain (fairly short) life expectancy.
My MIL is now heading into month 11 of FT in home Hospice care, cared for by, guess who? HER 3 sr citizen kids. She's showing no signs of slowing down or really any signs of getting 'worse'. (But you know she also doesn't see any drs, so this is all conjecture on the part of the kids.)
If you conitnue on with the 1.5 hr commute for much longer, you will find yourself well and truly trapped, as is my DH and his 2 sibs.
It's AWFUL.
People on hospice have all kinds of 'days'. Some are drowsy, sleepy ones. Some, they're like themselves again. The day before my FIL died, he was up, eating and talking about plans to go to Spain in the summer. 12 hrs later he was gone. So don't read too much into those weird bursts of clarity.
What are you thinking is best for her? Back to the IL apartment with FT aides? That may be your only 'real' chance. You cut back to weekends only. You reach out to sibs and ask for help in these final days.
Just do not attempt to do it all yourself. No point in 2 of you going down.
FWIW--if we could go back in time, my MIL would have gone straight from rehab to a LTC facility. This level of committment is killing the 'kids'. (and by extension, the rest of the family, to a lesser degree.)
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