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 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…
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.
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
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.
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.
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.
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.
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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