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Mom (95) on Hospice care at home for almost ten months. Her oncologist said no more treatment possible. She hasn’t been out of bed for six months. Can’t sit up. Can’t use the toilet. Catheter and pads on the bed. Can wiggle her feet a bit and usually feed herself with right forearm. So bloated with fluid - almost 200 pounds -that one person can’t change her pads and clean her. Skin covered with water blisters that rupture and leak. Two deeppressure ulcers that aren’t going to heal, one started bleeding. Always short of breath. Doesn’t want to sleep at night. Keeps saying she wants to die. Dad wants us to care for her at home until she dies. Three sisters take turns staying for 48 to 72 hour shifts, with one person having to come in to help with toileting.


It seems we are just prolonging suffering with diuretics and low doses of opioids. Dad keeps the TV on at a very loud volume all the time, so no intimate conversations with mom. I think the bedsores and recurrent UTIs seem proof we can’t care for her well enough on our own. She doesn’t want to go inpatient or to NH. Hosparus can’t even find a respite bed until a month from now. POA sis doesn’t think NH staff will be careful enough with her fragile skin and bed changes and wants to keep doing this forever.


If I stop taking a shift, it puts a much worse burden on the sisters. If I keep taking a shift, it enables this lingering death to continue. She keeps rallying and maybe will hang on for months. I don’t want to do it any more. I’m starting to speak up that I don’t want to do this much longer. The others believe surely she will die soon but she keeps fooling us all. I don’t know what is the right thing to do for her.

I was just looking to blow off steam, but this is some really good advice. CCTN55, I mostly got pushed off to the side but two other siblings got dragged into a very unethical situation. The three of us are more clear-headed about things. The younger sisters missed most of the bad stuff and think they grew up in a loving family. Sometimes I look at my parents and reflect: what different people we all see.

I asked if we could have aides come every day and it seems Hosparus told sis that they wouldn’t do that and would make her inpatient. And yet, they can’t find a bed in their facility until mid-July. Sounds like there is some room to ask for more help, but if they don’t have the people they don’t have the people.

I put together a big list of the various tasks, and maybe we can do things like grocery pickup instead of shopping, and maybe people who can’t be there in person can do some online tasks, order groceries, something. My birthday is next month, and I will set a hard stop date before that and work the logistics to get there. I just wrote “maybe set a hard date” and realized that’s chicken, so I changed it to “can set”, so why not move up to “will set”? If a couple of us stick together, they will have to hire more help. They aren’t rich but this is what you save for, not to leave an inheritance.

One thing that I notice is this unpleasant dynamic of finding fault with the ones who aren’t present. So and so did this, said that, made such an error. Throw the person to the wolves. It’s not easy to catch it and not join in. I just say we are all in this together and we have to support one another. If someone makes a mistake, that’s why we have other people to catch it. Blame serves no useful purpose.

Thanks for being here…
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Reply to TheWeirdOne
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This has been a hard day. It started with Dad raising Cain about paying $275 a week total for two people, family friends, so one person will come twice a day to help with the bed changes. Yelling that maybe we should go back to her Medicare plan which covers a year in a nursing home. When the person arrived I told him be better not say anything rude, and he didn’t. The woman is from their church and she stayed to sing a hymn mom requested.

Later that day he admitted that he didn’t think things would go in this long, that it was too much, and he didn’t know what to do. His own health is very precarious-it’s just as likely that he will go first. And when the evening person was on the way mom had a fit, didn’t want anyone there, leave her alone, she just wishes she could die. And half hour later she’s singing and laughing and eating biscuits and gravy that brother and wife brought.

I listened from another room to give them space and realized something. Her short term memory is totally gone. Five minutes after my brother left, she asked if those people were brother and his wife. Fussed at me for not giving her dinner earlier. I reminded her she refused dinner and she smiled and said that’s right, and we joked around a bit. I see now her mind is like a tornado, a strobe light. Emotions and words flash into being and wink right back out. I’m seeing her brain start to become unmoored. She remembers everything from the far past and nothing from the last hour. It made a lot of my frustration evaporate. Being mad at her is like being mad at a rock in the path. The rock is just there, it’s not personal, just go around it.

Reading this thread made me realize something else. We have been so focused on figuring out how to best care for her, and make her happy. And desperate for respite care because everyone is getting burned out. But respite care isn’t the answer. Sure, it will be a break, and maybe she won’t be able to come home, and it would ease everyone’s burden. Except hers. She doesn’t remember the good days. She would be in a strange place alone. Maybe die alone. After all this struggle, that’s not right. She isn’t going to get better. Instead of sending her to respite care or a facility, why not allow hospice to ease her out of this nightmare? Give her enough medication to relieve the anguish of being in that bed for months. Help her body to stop fighting so hard to live. Give her the gift of being home, being with her husband of 75 years, being surrounded by familiar things and faces. People telling themselves they can’t make that choice, let’s just wait a little longer - that’s cowardly. Let her go. Help her body change course. Let her go, soon, instead of going to respite care, where she will likely die alone.

I will do my best to say this to the siblings in the kindest way I can, which is hard because it’s difficult to say hard things without sounding hard hearted. But giving her more time now is no gift. She won’t remember any good days and soon there may be only bad ones. I cannot begin to express my gratitude to all of you who have shared your difficult stories and offered such compassionate advice. If not for you all I might have done the right things for the wrong reasons. At least for me, the confusion and anxiety is completely lifted. Yeah, I’m stressed and tired and don’t want to do it, and it stressed me out because those aren’t good reasons to quit. Those feelings still exist but they aren’t the heart of the matter. The heart of the matter is looking down the road at what is coming, and choosing the path of greater kindness, even if it cuts time off the journey. Thank you, thank you all, and I hope you know how much of a difference your words have made.
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NYCmama Jun 27, 2021
WeirdOne I am so happy you found the answer that brings you peace of mind. Best wishes on your journey that I hope brings a happy (though maybe bittersweet) ending.
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The thing is, rather she's at home which is where it seems every one wants her to be, including herself or in a facility, she will still have the beds ores, ect.
Your sister is right that your mom will get better care at home instead of a facility.

Usually the bed sores, ect will give an infection and the person will die.

I would keep her home with Hospice Care which they should be giving pain meds to keep her comfortable and the more pain meds she takes the sooner she will die, which is what she wants anyway because she isn't living any kind of life.
Seems like it might be better for the 3 sisters to take shorter shifts as staying with mom for even 24 hrs can be a lot.

If nothing else can be done for mom, I would ask the Dr about not giving mom any meds except to keep her comfortable with pain meds.
Hospice should have furnished an oxygen tank so she'll be able to breathe better.

It will truly be better for mom to die at home.

I understand not wanting to take care of her any more but if ya'll do shorter shifts, I think you'll be able to handle it better and in the end, I think you'll be glad she hot to die at home then in a cold unfamiliar, unloving place and all alone.

Prayers
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No one can make the decision for your family. My husbands father was in his 90’s with terminal cancer. At a certain point he too became bedridden with recurring bedsores, UTI’s and other infections. Hospice came on and encouraged our family to allow them to keep Dad comfortable, but to let him go. He wasn’t hungry or even thirsty much then, but they sort of forced him to eat/drink. He was moved very frequently to help with the sores, but they’d come up everywhere. He was in excruciating pain when being changed. As soon as the family accepted the situation & agreed to let him pass with comfort, he was able to do so. Sometimes the living work to keep a dying person alive at all costs. In Dad’s situation that was a mistake. He was trapped in a severely failing body and mind with virtually no chance for remission, healing or cure. The man passed and we believe he returned to full light; was perfect again. There are worse things! As a family, put his needs, comfort & well being first- he deserves it!
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Reply to DadsGurl
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I know what you and your family are dealing with is very hard work, and exhausting. I would certainly get mom on the waiting list for respite at the hospice home, while you try and get things figured out. They can keep her there 5 days, and it be covered 100% under moms Medicare. You can also pay out of pocket to have her live out her days at the hospice facility, but that is a lot more expensive than a nursing home. If the family really wants her to stay at home, you may need to bring up hiring some outside help to come in, so you all can get a break. There's no reason that the whole family has to jeopardize their health, for the sake of mom.
And you're right, this could go on for some time yet. My husband was completely bedridden, and under hospice care in our home for the last 22 months of his life. I had to hire an aide to come in the morning to put him on the bedside commode so he could poop, and thankfully he had a supra pubic catheter, so that made my life much easier, but other than the hospice aides coming twice a week, and the nurse once a week to start(3 times later on)the rest of his care fell on me. My husband wanted to die at home, and I was glad that I was able to honor his wish, hard as it was.
You all have to do what is not only best for your mom, but what is best for you all as well. Might be time for family meeting. I wish you the very best.
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Reply to funkygrandma59
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I'm so sorry that you are in such a frustrating situation. Your mom has a DNR, but does she have Advance Directives? Usually, in this instance, Hospice is called in to assist with caring for the dying patient & their comfort. The doctor should have provided you with medications to keep your mom comfortable. It sounds like your siblings haven't faced the fact that she's dying. It's about helping her be comfortable, less pain, etc. not curing her. A family meeting with the Hospice staff may clear up that fact. I called in Hospice for my mom and it was the best thing to do for her. We enjoyed her last few days with peace & comfort. Caring for your mom is probably too much for you & your siblings to handle W/O injuries or exhaustion. You should hire an aide if possible to decrease the amount of work. If you have made your needs known, your siblings should respect your decision which I agree with. What seems to be the current situation sounds like prolonging her life instead of supporting her with comfort while dying. Hospice should be able to provide some type of air mattress to make turning easier & decrease pressure on her skin. Are you using a draw sheet under her to assist with turning. I hope that your siblings listen to you & Hospice about your mom's needs. maybe show them the advice in this blog. 🙏🙏
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InFamilyService Jun 26, 2021
Completely agree with your response. Excellent advice.
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There is no way on earth this poor soul should be kept at home. She belongs in a facility which is grained to care for her. And it is starting to really impact you. It is time - you know what you must do.
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Reply to Riley2166
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TheWeirdOne - Your mother sounds in very bad shape, yet she still hangs on. I can totally understand her desire to stop the suffering and die. I would want the same, too, if I were in her condition.

Her needs are too much. If YOU can't continue with your share of care, then you should cut back to just what you can handle. You have realized your limit, you should make that known to your siblings and discuss how your share can be covered, either by the siblings doing more, or by hired help, or by moving your mother to a facility. You may be surprised that perhaps one or more sisters are also at their wit's end, too.
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Reply to polarbear
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I'm surprised the hospice nurse hasn't reported neglect. You and your sisters are not capable of providing proper care as evidenced by the extreme bloating and water retention. Plus, your mother is drowning in fluid, and that's why she can't breathe.

A skilled nursing facility with hospice care would absolutely be equipped to care for her, plus they'd have the proper equipment to lift her up. She'd also receive a much larger dose of Lasix or another diuretic to get some of that fluid out of her. She might even need to go off hospice and into the hospital for IV diuretics, then be re-evaluated once they get that out of her.
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BurntCaregiver Jun 26, 2021
MJ1929,

What a terrible thing to say that you're surprised the nurse hasn't reported neglect. That's shameful and an insult to these people.
The poster and her sisters are not neglecting their mother or her care. They're doing the best they can but don't know how to do the proper care for a person in their mother's condition.
What I'm surprised by, or should I say not surprised by, is the hospice nurse not having her sh*t together well enough to see that this family isn't coping with the care needs and they need help. I'm sure all of her paperwork and case files are in tip-top shape though.
It's the job of hospice to also be a liason for patients and their families. They're supposed to help with bringing in special equipment if necessary and familiarizing family caregivers with it if the patient is at home.
They're supposed to be sending aide care and make sure their aides have it together as well.
There is also supposed to be a social worker making regular visits to speak with the patient, the family, and the hired caregivers to make sure they're coping, and if they're not they offer the help they need. Although in my extensive experience with hospice I find that the social worker visits are useless and really more of an inconvenience. They can however communicate with other staff to get different kinds of help for a patient and their family.
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Hello. I am writing just to give support from my perspective. I see people that agree with you that mom should be in a care facility. I see people that think it's your 'duty' to care for mom. I see people that tell how gratifying an experience it was for them to care for their loved one at home. In each case it was a matter of their strength and capability. In each case it is time that is either rewarding or torturous.
If I had to make any suggestions, it would be for you to find a way to get some counseling. I do not recommend counseling from your ministry...I feel they have their place...but I think it works better to have someone who is completely neutral. They should help you to find out how this is going to affect you in the long run and just how much you can/should endure.
In my counseling I was told that each person can endure different amounts. I wouldn't make the promise to my mom that I would take my dad into my home and care for him 24/7 if something happened to her. (He was at that point bedridden and no longer knew anybody around him.) It was a joint decision that my wife and I made. I don't feel that anybody should make a promise to give round the clock care for somebody without it being a joint decision. My mom basically disowned me for several years because of it, but eventually we made up.
About 4 years ago I had to make the difficult decision to move mom into assisted living. She had Alzheimer's and could no longer take care of herself. I about ran myself into the ground trying to care for her for 3 weeks. I was working 10 hour days, going over to her house and bathing her, changing her and dressing her. I saw and cleaned parts of my mother that a grown son shouldn't see. My brothers couldn't bring themselves to help with it. Oh yes...I was also calling to try to get help from care agencies.
I have great respect for those who can deal with it all, but you also need to take care of yourself. If you are going to be scarred by the experience, you need to walk away. It is a part of your life that you give forever. Is it an experience that you will look back and say that you loved doing it or will you resent most of the time that was spent?
Find someone to help you figure out what will work for you.
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