Mom was sent home with 3 weeks to a month tops to live. Breast cancer metastasized to the bones. Very aggressive!! Dr. told us it was fast spreading and to take her home with hospice care and get things in order. It’s been a year and a half. Yes I said 18 months. She’s is doing better than me and my sister who have been splitting day and night shift with a sitter for 4 hours a day. What do we do? Me and my sister who drinks and is drinking even more now are exhausted and defeated. She works full time goes home 2 to 3 hours and spends nights with mom. We’ve sacrificed everything to let mom stay at home to end her days. Mom has done nothing but improve but is bedridden. I’m sure has nothing to do with cancer. It’s lack of rehab and want to. Hospice doesn’t offer rehab for her. We’ve tried thinking she could get independent enough to stay alone some. She can walk assisted a little. She does not have the use of her left arm which makes things more difficult. She has started getting on a potty chair but can’t get the depends back on. Things like that. My sister is falling apart and bitter, We both are. I don’t know what to do anymore. We don’t have a lot of money for sitters. Average $10 an hour so $80 a night just for her to sleep at her own home. I handle the day shift and also keep my granddaughter who is 18 mths. I have a day sitter for 4 hours. And I’m still exhausted. “I’m your mother” is my moms favorite quote which I totally block out anymore. Also “I’m the one with cancer “ is the other one. All the while getting waited on hand and foot. Hospice comes 3 days a week for baths. She thinks we owe this to her. I’m sorry I sound so harsh. She doesn’t even acknowledge the sacrifices we have made for her truly. I quote “She’s the mother with cancer” I’m married 33 yrs 2 daughters and a grand baby. All have sacrificed. I know the perfect answer is “stick her in a home”. We have 2 facilities near by and both have a 1.5 rating. Any other suggestions? Almost sure she’ll outlive my sister and me at this rate! We are both in our 50’s. I just got my 2 children grown, educated and on their own. Was so looking forward to do what I wanted to do for a while. Help!! Thanks for reading. Sorry so long. I could go on and on. Wishing for my life back. Thank you for letting me vent. I just know there’s a an answer out there somewhere.
You say the facilities have a 1.5 rating. Take an honest look at your life and your sisters, what sort of rating would you give for your own lives?
Your sister is drinking to cope. You are at the end of your rope. You are both neglecting your own well being and likely have nothing left for your own families.
Please find a placement for Mum and get your lives back.
good point :)
OK.
Either you will somehow keep on doing it without her (by replacing the sibling with an alternative) or you both give up & get a whole new plan.
Which will it be?
It sometimes feels like everyone wants a piece and there isn't enough to go around or the energy and the time to enjoy our retirements.
At some point something has to change because a person can only do so much and you need to sit down with your sister and plan for a change. One that makes it less likely that you will become victims in all of this. The main thing is to acknowledge that your priorities need to be reviewed.
Good luck.
Talk to the Hospice nurse or the Social Worker and ask them to set this up ASAP.
Then talk to the Social Worker if they can help find a Skilled Nursing facility that will take mom.
Mom needs more care than you or your sister can provide even with the help of a caregiver.
The Team, your Hospice Team can probably get her into a facility faster than you can. And they will continue her care in the Skilled Nursing facility.
Your high stress levels, and feelings of hopelessness and being trapped are unfair to you, your long-suffering husband who must be at the end of his rope, your own children, and your precious little granddaughter.
You know what is even more unfair? If you end up dying due to this never-ending stress, thus leaving your husband, kids and only grandchild bereft of you.
If you get really sick, or God-forbid die unexpectedly, I doubt your sister will suddenly step up to the plate to provide 24 hour care. Where will that leave your manipulative mother? She will need to move to a 24 hour care facility in that case, so you might as well face facts and arrange to move her now.
Take your life back! Enough has been sucked out of it by your selfish mother. And don’t forget to tell your husband that you love him, thank him for having had the patience of Job, and promise him that positive changes are coming soon so that you can again be the loving wife, mother and grandmother that you know you are, deep down inside. Right now I bet you are staggering through each day and are unable to be the loving woman you want to be to those who deserve it. Don’t forget to also be loving to yourself when this mess is straightened out.
Take your life back!
If she has Medicaid, there will be more in home help for her. If she has Medicare, it would be less in what you could get to help in the home.
https://www.foxrehab.org/
They offer in home therapy and it is covered by By Medicare Part B even while on Hospice. (Medicare Advantage Plans may be different). Contact them to see if they have therapists in your area and ask if this would be true for your Mom. If the Hospice doctor will not prescribe it, check with other doctors she has or has had. Because this is a common misconception even many providers are not informed. So check with Fox Rehab first and even ask for printed info to show to her doctor. Sometimes Hospice even offers therapists from their agency but I would be concerned it would only be for palliative issues rather than actual rehab.
Have her not drink anything after 6 PM so she won't need to get up as much to go to the bathroom.
You might put a bedside potty chair right beside her bed so she doesn't have as far to go if she needs to go during the night
Or
Let her wear Night Time Diapers and just pee in them and change them the next morning.
She can also wear a fall necklace to sound off in case of a fall.
Maybe you could find a Live in that gets a free room just be around in case of an emergency. Like maybe a Nursing Student.
1) Is your mother getting social security? Even if she was a homemaker, she would still be entitled to her own if husband worked. Even if she's getting just $1,000 a month, that's 100 hours of care at $10/hour.
2) Does your state allow Medicaid for board-and-care homes? These often have better staff ratios plus could be closer.
Because 3) moving her further out could impede the hospice agreement she's now got to have palliative chemo. Which I think you tell the onc in charge of this chemo and these steroids: Tell him you're fine with her treatment but there will soon be no one home for her, and that for her to exercise her options with him, he needs to put you in charge with whatever social worker. If hospice is putting you in a loop, then tell him the buck stops with you, bucko.
You need answers so that she can keep living as she wishes. Her living isn't the problem, the problem is that she is sucking you guys' life away.
You both are burnt out, and it’s going to soon become dangerous, because you can only go so long. If the end of your rope was last Tuesday, and you aren’t happy with the facilities nearby, look farther afield. Having to drive and hour or two to see her maybe won’t be such a bad thing, because if anything, it will prevent you from visiting every day.
It’s far better that she’s in a place and well looked after, even if it means it’s farther away from you. If it were me, that’s what I’d do. Keep looking, because short of her dying, this isn’t going to solve itself.
When she says, "I'm your mother!"
You say, "Are you sure? Cuz, I am only taking your word for it."
When she says, "I have cancer!"
You say, "I think they read someone else's test results. Because you're 15 months past the expiration date."
Being a mother with cancer does not give her the right to devour your life, your sisters life and the lives of everyone that doesn't get to be with you because of her.
You are an adult woman and no longer subject to her authority. Not when she has abused it so.
I would tell her that she has done this to herself by not putting forth any effort and you have paid her anything you might have owed her. So knock the crap off or you get to go to a facility with a 1.5 rating and that sounds to good for her, based on what she has/is/will do if not stopped.
You are seriously going to have to put boundaries in place, because she will make a statistic out of you and your sister. Your sister is already self medicating because of this woman called mom. What needs to happen before enough is enough?
So, you do not owe her anything! Everything you do for is your own choice. You are clearly burnt out and need a break. I would say your relationship isn't that great to start with so besides more complaining, making some major changes will not necessarily change how you feel about each other.
Does she still qualify for hospice? Does she still have terrible cancer still?
If the nursing homes close by are lousy, look further out. You don't have to visit every day or any more than you really want to. You can call and check in, etc.
It's rough when you are told someone is going to die really soon. You do everything you can cuz you "know" the time is so limited. That pace could only be kept up for the short term. Not for 18 months. It's time to set some boundaries. At the very least, get her somewhere for respite care but really I think she needs somewhere permanent. If she doesn't have enough money for hiring home health aides, then there really is no choice.
We are JUST now really beginning to understand the full impact of this. He had a lifetime to condition my DH and his sibling to do his will - their childhood and adulthood was spent training them to feel guilty for not doing what he wanted when he wanted and they had an abusive childhood that taught them to fear their father and immediately respond to his demands, so it has taken them both a long time to even recognize that they do it.
As a result, it is an uphill battle to even get either of them to say no. That coupled with his sibling living there still and having some financial dependency muddies the waters of moving him into a proper living arrangement - to the point that DH and I have nearly walked away to leave them to their own devices a number of times because our 'obligation' is far less here. But we feel a sense of solidarity with them and can't seem to bring ourselves to do it. So we all roll around in the mud together until the other shoe drops and we can finally use the system to our advantage.
I've learned a lot here and frankly we are fully prepared with the emergency room dump and "unsafe discharge" and his sibling knows when the time comes they are on their own as far as figuring out their own living arrangements from that point on.
I guess my point is this - it sounds unfortunately - like you have a situation on your hands much like we do. I hate to use words like manipulative and guilt but some people are really good at it. My FIL has had a couple of varieties of cancer at different points - all very mild, easily cured and completely gone now - but he still constantly reminds us that "I HAD CANCER" because it is his sympathy card. It's not even "I HAVE". Some people no matter what their circumstances just want to make sure you live in misery with them. My FIL's multiple doctors do not know how he is still alive with everything that is wrong with him. And they say he could die tomorrow or live another 10 years.
As is evidenced by the fact that they gave her just a very short time and you've already had nearly 2 years with her, you already know that this could continue. I certainly don't mean to sound heartless. But as caregivers you are already seeing that it can hugely impact your health. What happens if your sister gets sick? Or ends up in the hospital? Is it safer for your mother and better for you and your sister to have somewhere that she has 24/7 care and you can just have your time with your mother as your mom?
Your mother controls you through Fear, Obligation and Guilt. She's done this since your dad died, 16 years ago.
You and your sister need to call the Hospice Social Worker tomorrow tell her/him that your ability to provide home care for your mother has ended. A facility needs to be found immediately.
If nothing else, have mom go to Respite for 5 days (this covered by Medicare hospice services). During those days, you can find a better placement than exists nearby.
"My mom had a mini stroke in November. She was in ICU for 3 days, hospital 1 week, and rehab a week. She has no damage from the stroke. Nothing showed on cat scans. They changed her bp meds and she returned back to the hospital for complications. Meds adjusted. She can't lift her left arm, her hand works nothing to do with stroke. The nerve is compromised between her c5 and c6. Problem is when she left the hospital my sister and I decided it would be good for mom to come home with me for a couple of weeks to get her strength back. It's 5 months later and she still here. I'm at my wits end. I've never been so exhausted in my life. I cook, clean, take her to dr. Appts. Everything! My sister comes by 2x a weeks and gets her in the shower. That's it! She doesn't want rehab, refuses to get an MRI on her neck to try and get her arm working and wants me to do everything. I try to explain that she has to get up and move around to get to feeling stronger and build her stamina back up. She still says she can't walk stable even though the 2x she had in house rehab she did just fine. They put her on blood thinners and she complains its cold even though I keep it warm to the point we closed our vent in our bedroom because it's too hot. She wants to just sit in the chair and do nothing. Insist she can't. I'm so frustrated and tired. I can't do this anymore. I'm so mentally and physically drained. It's getting worse every day. I try to explain that we've got to get her back home and get thing back to normal. My dad died 15 years ago and shes always depended on me and my sister for dr. appts. Groceries, yardwork shopping, everything. Then we would get the guilt trip constantly. I dont feel like cooking can you bring me something. This got to be almost daily. It's always been something. As if we dont have a life. Im so tired of feeling guilty. I'm tired of her sucking every drop of energy I have left. I beg my sister for help and tell her I'm so stressed out to the point my chest hurts. I dont want to get up in the morning knowing it starts all over again. My sister comes by 2x week and give her a shower paints her nails brings her goodies talks to her like shes a baby, spoon feeds her and yes I said spoon feeds her. I try to tell her this is wrong and it makes my job harder. She actually lives 1 street over from me and can only help 2x a weeks for a max of 1.5 hours . Shes works 8 to 3 no husband no kids just her and her dog and I don't work. So she justifies it that way. Ive always been the one to do everything for everyone because "i don't have a job". I just want my mother independent and back in her home so I can have my life back. I want to help my daughter and help her get ready for my 1st grandbaby. I have always been close to my daughters we would always do everything together. I miss that so much and they do too. My husband has been so understanding until now. Its putting a strain in our marriage. He sees how this situation has turned the longer it goes on. She doesnt want to be left alone. Shes scared she might fall or she doesnt feel good. Wants to know how long I'll be gone. I cry myself to sleep. I dont even fix my hair anymore. I rarely get out of the house. I'm losing my will and feel like it's all hopeless anymore. Someone please give me advice. I don't know what do. She wouldn't go to her last dr. Appt to do bloodwork. I had to reschedule it. I have 1 daughter at home that works and is about to graduate. She sees the stress I'm under and tells me this is wrong that nobody helps me and how my mom acts like she cant do anything for herself. Can you bring me this or will you hand me that constantly. Now she will actually call me on my phone in the house and ask me to do something for her. I feel so guilty for my feelings. I have so many mixed emotions. It's only been 4 months and I'm falling apart. I'm seriously considering a psychiatrist."
Have you EVER said " no" to your mother?
What happened to your other sister, as you mention having 2 sisters in a previous post?
You were at the end of your rope back in early 2020. So what has changed, other than it's one of your sisters that is now at the breaking point? (I hope there isn't a brother/s in the family doing absolutely nothing.)
Your mother has been expecting servitude since your father died 16 or so years ago. Isn't it time to stop that?
If you won't place your mother in a facility, then I don't see much changing.
"In your previous posts, you said that you did the majority of the caregiving."
The 'more hands' option appears already at capacity.. so I really don't see any option but the other.
What is driving you & sister to keep going this way & not change course?
You mentioned having Mom spend her days at home...
This is a very common thing that most people want when ill or faced with a terminal illness: to feel at ease, secure, comfortable in their own home. It is also very common for people to want family to care for them.
But families differ. Some can take on this heavy care role & some simply just cannot. And for those that do, they are all human & every human will have a stopping point.
Another way to think about is - you & your sister have given your Mom a truly wonderful 'Gift' : of staying in her home for as long as possible.
You have reached the end of *possible* now that's all. So Mom will need to hire copious amounts of help or move into care for the last bit.
Think of this as 'The New Gift'. Yours & sister's visits/help but with round the clock care too.
This involves some letting go, probably many tears & then acceptance.
Peace to you.
Your sister is in crisis and destroying herself. Trying to figure out how to get her to keep doing what you both have been doing for the past year and a half is not working and is not the solution.
You both need to come together and have a talk with mom about what this is doing to both of you and what the next step will be for the preservation of your sister and your mental and physical well being.
Mom may have been given an expiration date by a doctor which she surpassed by 15 months but only two of you are dying right now and mom is certainly not one of the two people.
I never understand why the senior never seems to care about what their children are going through in trying to make them happy.
And since then? What medical assessment and advice has she been given?
Clearly, and happily, her situation is not what it was thought to be. Hasn't her hospice provider been asking questions or requesting a revised assessment?
If the home is not owned and nothing else is, then get her in line for Medicaid. Just to preserve your own options. This is not worth killing oneself or drinking oneself to death over. And, if you start early in researching this, you might find more facilities that are more acceptable. AND some states do offer Medicaid aide help. I know a guy in WA, still working, but a renter who has gotten 96 hours for his wife.
In the meantime, I'd suggest shutting down the mini-gaslighting of "I'm you're MOOOTHER" and "I have CAANCCER." Well obviously. No one needs to hear that at this point, so when she starts just say, "yeah, I'm aware." Sympathy points do no one good here, and it is obvious you are out of them.
If you don't want to place her in a home, then how about cutting back the hours you spend with her. Since your mother is bedridden, does she really need someone to stay overnight?
My mother doesn't need anyone to be with her once she goes down for the night. or when she takes a midday nap. During wake time, she can be alone for a short period of time here and there. She keeps herself busy with reading and watching TV.
You need to reclaim at least part of your life, or else, your mother will continue to suck all the life out of you and your sister.