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.
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.
I am so sorry for this situation. 10 months is a very long time for such intense care for all of you. Tell your sister to hire help. You know your limitations. It will help all of you.
Sometimes we caregivers get stuck at a certain stage just like our loved one. Once she gets in more help, she will wonder why she didn’t do it sooner. I’m not sure that any level of care could keep the issues your mom is having away as it may be the nature of her disease. What does the hospice nurse say? I do know that my MIL died of cancer, had hospice and she did not suffer. She was not at home. I hope you are able to get better answers than mine. You sound very sane to me. This is so hard. Come here for support. We care.
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.
How many siblings do you have? Do you have brothers? I sense there are more than the two that share caregiving duties with you.
One time you refused to do the free work that your parents expected and refused to pay anyone to do, because they wanted to leave money to the children. You need to do that again, and step out of the caregiving. I also read in a past post the way you were treated when you first started taking a place in the caregiving rota.
Consider this, also -- your mother is NOT getting proper care at home, if she has all the issues that you list above.
So Daddy wants his daughters to take care of their mother? Daddy doesn't get what he wants, just like YOU didn't get what YOU wanted when your parents refused to sign the paperwork for you to attend college on a full-ride scholarship to study physics.
This is a case where what is best for your mother is also best for YOU (and for your sisters, even if they don't realize it). Your better needs better physical care and YOU need better self-care.
Just curious...were you the only sib who was abused? And I'm especially curious if there are any brothers in the mix...if so, where are they in all of this?
I guess this is why it’s called “venting”, not “solving”. Example. Aides were changing mom by rolling her to her side, pulling soiled pads out, putting clean ones down, rolling to other side to pull them through. She has incredibly fragile skin and this caused friction burns and skin tears. So you have to remove soiled pads without pulling, tuck clean ones under as far as possible, then unfold them from the other side. If we weren’t there to assist and observe, not even the Hosparus aides do that. The worry is that the poorly paid NH staff will probably not, either, especially without training and without someone watching. And even rolling her on her side elicits yelling, pain, if we aren’t careful the water blisters break.
The first argument against hiring help is always “it’s too expensive” and after that comes “they can’t do it right” which is somewhat true. Plus, in a care facility she would have a roommate and they would have family in to visit and what about COVID? Did I mention they parents, aren’t vaccinated, and the sister with POA is a rapid anti-vaxxer?
I agreed to go back out this weekend. Will research. Maybe there is some reasonably trained person who can be trusted to come every day, at least to help with the changing so the one sister can have a break. I originally said I wouldn’t keep doing this in July because we didn’t imagine she would survive June. Maybe if she gets into respite care they will realize her condition and not send her home. And we must have a meeting with all the siblings. Soon.
Also, she has another UTI and they will be giving her antibiotics. Which are hard on the kidneys. In my mind, it would be kinder to let her go from the infection than to suffer kidney failure, especially as slowly as hers are going. She has a healthcare doc and a DNR. But withholding antibiotics is apparently murder, and “we can’t make that choice for her”. I don’t know, isn’t saying “I wish I could die” kind of a choice?
How much of the 200lbs do you estimate is fluid retention, and when did anyone last adjust/change her diuretic? If it's possible to do anything about that, she might feel better enough not to want to die (yes, that good - I know).
And having said that: if your mother is able to say "I am refusing this antibiotic" they can't ignore her. Withholding them against her wishes would be - murder, if they like, for the sake of the argument; certainly unethical - but forcing them on her without her consent is assault. Is she able to summon enough strength to make a meaningful statement?
P.S. We're very poorly paid. I can't see that's any reason not to give a monkey's about your client's wellbeing, or to care about getting it right. How are they doing the rolling? - it needs to be deliberate, methodical, with limbs supported and placed and not just left to drag or flop. Will they pay attention if you literally stand there and demonstrate?
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.
Why is hospice not providing aide care for your mom? You and your sisters trying do her in-bed care is not only dangerous for her, it's dangerous for all of you too.
You and your sisters can seriously injure yourselves if you have no proper training. I was in service almost 25 years in homecare and had more hospice patients than I can count. I've taken several injuries and I know what I'm doing.
I understand if no one wants to put mom into a hospice facility. But please for her sake and yours bring in some hospice caregivers to help you.
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…
Also there is something called a wick, in lieu of catheterization. You may want to inquire.
Prayers for your Mom and your family.
What is your suggestion now to do? Is Mom on hospice? Does her doctor agree with your prognosis that she is dying, and when does he think she may? Do you want her on inpatient hospice or do you want her placed in nursing home in her last months? Your Sisters are correct that she will not get a lot of care for her skin conditions especially, and that she may get sepsis which may hurry along death.
Is your Mom completely rational?
Does POA Sister take on shifts in actual care also?
You are, by taking part in this, enabling your Mom to stay where she wants in her dying days (again, does she have hospice and does the doctor think she is dying). However, a move to nursing home will likely mean less care and faster death--your sisters are correct in this-- and my fear is that the blame for this will go to you, and as you are already questioning yourself that you may want this because you cannot go on, you would be tough on yourself is my fear.
This is a dreadful decision. I agree with Chickie that in facility hospice is the right answer. The problem is it isn't what your Mom wants and everyone else is enabling this ongoing.
I think this comes down now to what you CAN do. If you cannot go on, let them know. Then they are having to make decisions for themselves whether they can or not.
How long has this been ongoing?
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
my dad was in a NH and we had hospice come to him several times a week. It worked really well.
Have a heart to heart with your siblings and tell them you cannot do this any longer.
Hire some outside help to give all of you a break.
Dad will need to understand.
Your last days with mom should be
spending quality time with her and not
back breaking chores as a caregiver.
If she is on hospice due to active cancer and her doctor has said there is nothing else to be done, she should be given as much pain medicine as she needs to keep her comfortable - which may be a lot.
You should raise holy h*ll with your hospice group. She should be on enough diuretics that she is not fluid overloaded, as she is now. That will take care of the biggest blisters and some of the breathing issues. And they should be telling you the morphine dosage, and that’s what you should give her.
This is a tough thing to see through to the end. Your Mom’s other medical issues should be left untreated (uti’s, etc.) as awful as it sounds, this will help hasten her end. The only goal should be comfort care.
She had a blood test and if anything her kidney function has improved. We expected between the cancer and the lung problems and heart problems that she wouldn’t have much time. Now I wonder if she could be here for years. The sibs hired a couple of family friends to come in and help with the diaper changes, and one sister who hasn’t been involved will start staying two nights. So the pressure is slightly better. But if we are still in the same place when she comes back from the respite care…I don’t know. That might be the time for her to go to the NH instead of home. And I will want out.
I see lots of posts here about I’m the only one, my siblings don’t help, they leave it all to me and it’s pretty judgmental toward the sibs. But what if not everyone agrees on the course of care? Am I going to be the a-hole for stepping back?
In my experience, hospice is basically a service to keep the person comfortable and to supply the medications necessary to end the pain. Those meds may be administered by nurse or family member. Hospice should write the prescription either way. And that can lead to peace.
I pray for you & your family. This is not easy & won’t be on the other side either. You need to choose your path & be able to hold your head high with peace.
WeirdOne, if your sister remains immovable then I think your focus needs to be on improving your mother's quality of life where she is now, insist an OT come in and help with recommendations for devices that can make your mother more comfortable, at the very least a slide sheet to help with repositioning and/or an alternating pressure mattress overlay.
You are being met with resistance due to fear of the unknown and guilt. But if you take time to find a good facility and have your siblings see it for themselves, you may have all the support you need.
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Just because other family members don't want a facility doesn't mean you have to stay on.
My father was hesitant about him and mom going to AL because all their income would be gone and nothing left to leave to my brother and I. My point to them was while I appreciated their desire to leave us money - it was their money to be paid on them while they continued to live. If there was no money left, then so be it - it is first and foremost for their needs.
You and your sisters are killing yourselves - mom and dad money won't do you any good if they are dead. Have them spend the money on aids(human and mechanical) to assist you and make your lives easier.
Get dad some headphones to listen to the TV - or move the TV far away from the room mom is cared for - I'd think she'd be happier not having the TV blasting, hearing soothing music or an intimate conversation with her daughters. So you say your mom doesn't allow brother in when she is being cared for. Does he ever get to see her? Are there some tasks that he can do. Goodness there seem to be a lot of rules for your parent's house. - Maybe its time for for the adult children to say enough, these are the new rules of the house. I can see that mom may not want son to see her private business - but there should be things he is allowed to do. My poor father - and I saw far more of him than I wanted to but there were times it couldn't be helped.
Set boundaries and enforce them. Please practice self-care - you are no good to your parents if you aren't healthy. I wish you all the best.
We have had my mom at home with 24/7 help. $18,000 per month. She is totally bed ridden and unable to do anything for herself, My 2 brothers both work. I’m retired but live 5 hours away round trip. (Los Angels traffic is horrible). We also have a developmentally disabled relative we see to and my husband and I both have our own health issues.
we are finally moving mom to a facility that is going to cost $3,000 per month (she’s out of money).
we are applying for medi-Caid. Trying to get all the paperwork from the doctors in place (quite an uphill battle since we can’t get her to the doctors for required paperwork and tests so they can admit her to the facility.)
Sorry to be so long, I guess my point is to start looking now. The processes are long and complicated and stressful . Don’t wait to get this going because when you think you are ready it takes a long time. You don’t have to move her yet but I would try and get it going now.
I wish we had my moms stuff arranged sooner (her fault, very stubborn and uncooperative and much more to story.) But now we are scrambling to see to her care and it VERY STRESSFUL.
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.
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.