I think home care isn’t working but sis wants to continue. Need to vent. Thoughts?

Again, thank all who responded here. I just came to vent off pressure and anxiety and didn’t really expect feedback. But it was like finding a guidebook to a mysterious land. I have NO experience caregiving and little experience with death. I’ve been researching, worrying about the mistakes that could happen, imagining how I would feel in her shoes, and being generally horrified by the situation, wanting to fix it, and feeling totally in over my head.

I read this thread over and over. So many different perspectives, from people with vastly more experience and skills. I thought there would be a “right” path that I just wasn’t seeing for some reason. But there isn’t any one right path, is there? And guessing the right path isn’t the hardest part. It’s shaking the feeling that no matter what I do, it won’t be right, or it won’t be enough, or it won’t be good enough. I feel better equipped to do the work now, and not as anxious. I’m sure I will make mistakes and guess wrong and say things wrong, but I hope I will forgive myself and try again. Thank you.

Thanks for the update. It sounds like you have made some breakthroughs. At this point I would really try to keep your mom at home with the suggestions you plan on making. I know that sometimes you think things will go on forever, but based on your mom's diagnosis, it doesn't sound like it really can, despite her rallies. I think that everyone goes through their own processing/grieving prior to a loved one's actual death. Certainly with both of my parents I was able to see the handwriting on the wall and know when my role changed from daughter to facilitator, to ease their journey and let them know it was OK to go. It sounds like your mom - and family - may be near that point. Wishing you peace as you go through this process.

TWO
Thank you for the update. We are all with you in spirit and it’s good to hear that even though today was tough, there were some bright spots. So glad to hear more help has arrived. It sounds like your dad has even had a bit of a break through. I’m sure this is all very hard on him as well as the extended family.
With an awareness of your moms dementia, it will be a bit easier to deal with her comments. I am so glad she is not in great pain. My aunt who is late stage Parkinson’s has had blisters as well and hers were not painful. It sounds painful.
I looked up your hospice and I see it is a nonprofit in Indiana and Kentucky and has good reviews.
I hope the reinforcements give you all a chance to get more rest.
Use this forum to vent anytime you want. What you are doing is hard under any circumstances. We are here for you.

You can only focus on your own behavior. Your expectations are unreasonable.

Your mom is faced with excruciating pain and suffering and you are —- complaining?

This situation is short term and you have the potential to destroy your relationships with other family members.

1. Be present or personally hire someone to take your shifts.
2. You were not designated POA. So stay in your lane. Listen and support (to all) should be your focus.
3. Remember that when you are present, you are also there to help your other grieving relatives, not just your mom.
4. Because your mother is dying, you should expect that it would be unlikely for her mind to stay intact. They doesn’t mean you should no longer pay attention to her wishes. She already made her wishes clear while she had capacity.

You write that your mom is fooling everyone by living.

You are not fooling anyone.

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.

TheWeirdOne: Prayers sent for you all who are involved in the care of your mother.

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.

This sounds like it’s time to move mom to where they might have more assistance and resources.

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 you can no longer do it - then it may be time to stop. Tell others you can't do it anymore the same way. Is there a way you could continue to go on with certain limitations - less time - more than one person at a time?

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.

Reading this was painful. Your Mom is just existing, and it sounds like a horrible existence. All of you are doing a remarkable job - but at what cost? You're all exhausted and worn from worry. If you transfer her to a Hospice where she will get quality service by experienced staff - this will allow all of you to spend your time with Mom with quality family visits that show support and love.
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.

.

Hearing about people who spend their final days in bed always grieves me, sometimes love is not enough and the helping hands and special equipment available at a facility do provide a better quality of life.
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.

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.

Mom has lymphoma, but apparently it doesn’t cause her much if any pain. The majority of discomfort comes from lying in bed in one position all day. So she’s not on many pain meds, and the one she takes is more to alleviate the symptoms of shortness of breath. Hospice finally did bring an air mattress that cycles the pressure, and that has helped. But the bedsores aren’t healing and aren’t going to heal. She doesn’t complain about them hurting, though. The nurse does come regularly and sees everything.

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?

Please put her on the waiting list for inpatient Hospice, even if a bed doesn't open up until July. As long as she is eating and drinking she can survive indefinitely if her bedsores doesn't cause infection. If she had bedsores, they are extremely painful and Hospice should be providing wound care, medication and instructions on relieving pressure points. Fluid retention is most likely from congestive heart failure that is happening. Inpatient hospice is the best care for your Mom now. It's so hard but you all need to make the best decisions for her care now as she cannot do it for herself. Have a heart to heart family meeting.

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!

There are only two camps for the family: the camp that hopes Mom will stick around as long as she can - and the camp that hopes Mom doesn’t have to suffer much longer. It’s almost impossible to live in both camps. Maybe that’s part of the problem here?

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.

ToniFromRVA below has the best advice.
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.

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. 🙏🙏

You type the word "hosparus " but I think you must mean hospice. So if mom is a hospice admission why the hell isn’t the hospice nurse checking for skin break down, using barrier creams, and prescribing an air mattress with variable pressure? I don’t understand this! Our hospice nurses were so good to inspect my dad's skin to prevent bed sores. Something isn’t right here. If it were me, I'd get rid of that Hospice company and get a different one to take over.
my dad was in a NH and we had hospice come to him several times a week. It worked really well.

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

What is your Mom's prognosis and diagnosis exactly? Is this just aging and inability to thrive, or is there a diagnosis?
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?

Terrible situation for you all. If possible Hospice care in a facility would be best, in my opinion. If not, hospice at home with outside help. The current situation is not good for anyone.
Also there is something called a wick, in lieu of catheterization. You may want to inquire.
Prayers for your Mom and your family.

I agree with you, enough is enough. Hired help needs to come in. Aside from that fact, it sounds like your Mom is not being given the proper amount of pain medication. Hospice provided as much pain medication for my Dad as he needed. Of course I had to administer it, but it was pre-measured, I and I would simply squirt it in his mouth.

Nobody wants to suffer but if you’re using hospice, their main goal is comfort. It sounds like she’s on pain killers & also is on diuretics. The catheter is probably causing all the uti’s though. Is she on a low sodium diet? There should be more that can be done for water retention that’s to the point of thinning skin that tears. Maybe several virtual doctor consultations finding the best meds that fit for her would help. Do you adjust the bed frequently to move around pressure points on her? I think that helps my mother a lot who is also in a hospital bed. I’m sorry it’s been difficult for you. All I can say is when our loved ones are helpless & in need, we owe it to them to help them & to be there through the good & the bad. When she is gone, your conscience will be clear that you stood by her & did all you could so she knew she was surrounded by love during such a struggle that she had to endure. I know it’s hard to watch but in her shoes it is even harder. Comfort is key. Bless you all.

Please ask her doctor to write a prescription for hospice. The insurance company should pay for home health aides to come in help. You need some help to cover the the night shifts and 1-2 days so everybody gets some time off. Please consider asking friends, family, members of faith community as well to help so all of you can have a few hours off during your shift as well.

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…

It's admirable that you and your sisters are trying to do right by your mom and take care of her. Now it's time to let professional staff take it from here. It's possible to get professional care at home.
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'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.

TWO, I'm horrified by the shearing injuries; but having said that I worked with a colleague supporting an end-of-life lady whose skin was breaking down before our eyes in the last day or two - even when we never touched her, your Honour, honest. Having a slightly different health system we were working with palliative care and district nurses, a variable pressure air mattress was brought in at the double, the DNs were visiting twice daily to treat and dress open wounds, but that was the thing - every visit, we were on the phone saying "you know that cushioned dressing you put on this morning? The area is now broken above/below/on the other elbow..."

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?

There are a couple other siblings. One brother, and my mom cannot stand to have him in the house while she’s being cleaned up. One sister who doesn’t drive. One of the two doing the caring has been helping by coming over on her “off” days to help with the changing, and I set a hard limit of me not being there when the hospice aides are because of what happened before.

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?