Mom is in hospice at home but she's doing fairly well. She has recovered from a broken hip surgery two months ago. Her hospice diagnosis is congestive heart failure. I tell people she's not "actively" dying because she seems to be doing OK physically although she's in bed most of the time. She needs constant supervision when she's up, going to the bathroom, etc. She uses a walker but her balance is poor and she has a terrible curvature in her upper back and neck and can just barely hold up her head. She's depressed a lot of the time but she won't entertain any suggestions like visitors (our church ladies are so eager), adult daycare, day drives around the area, etc. We have lived with her for 6 years during which time my father passed (we were caring for him too). Several months ago, for the first time, she stayed at a respite facility that only allows hospice patients a 5 day maximum stay. It was very difficult for her to agree to stay there. Afterwards she said it wasn't as bad as she thought but she didn't want to go back. We've scheduled another 5 day stay next month. I literally burst into tears when I asked her to agree to go again and she balked. I think she said yes when she realized how stressed I was. My sister who lives a mile away helps out but she only stays a few hours a day here and there and whenever we talk about mom staying at my sister's for an extended stay both my sister and my mom start in with the excuses. With regard to the hospice respite stay my big problem is, five days is not enough. After all this time I need a month. Call me selfish but my mental health is hanging by a thread and I'm eating myself to death from the stress. Not to mention my husband who probably wonders whether we'll ever get to live like a married couple ever again. The rub is this isn't our home but we live here. We can't afford to take off and go stay somewhere while someone comes into the home and cares for mom. She would never agree to that anyway because she doesn't trust people. But mom could afford to go to a facility if I can find one that would take her for a month. There are two private elder care homes in our neighborhood and I've always wondered if they had the room would they take someone short term. Is it wrong of me to want to stay at home while mom, the homeowner, goes somewhere else? Let me add that in addition to my round the clock care, my mom has saved thousands of dollars on home repairs over the years because my husband is very handy and fixes everything around the house. We live rent free and utility free but we pay for our groceries, phones and internet. We both are on social security and Medicare.
It sounds like you need to realize that you can take control of the situation and plan as you need for respites / renewal / private quality time with your husband.
* You make arrangements and tell your mother what you are doing, who will be there (introduce her to caregiver). You do not 'ask her.' She will, of course, ALWAYS say no.
* Round the clock care is how a person / family member burns out. Do not do this to yourself.
* Ask yourself "Why do I feel this is 100% my responsibility? with little to no time off / respite? Likely, these are very old, instilled patterns of behavior / thinking / avoiding feeling GUILT (perhaps) due to the 'shoulds' ... I should do xxx I should be xxx.
Oh Yes: Here is it: "Call me selfish but my mental health is hanging by a thread and I'm eating myself to death from the stress. Not to mention my husband who probably wonders whether we'll ever get to live like a married couple ever again."
You need to feel you deserve a quality, full life - at the very least 'renewal time' to continue on - otherwise, you will / are burning out (and sending us your SOS now - here, asking for support).
You are a married woman with a full life and deserve a quality life 'while' taking care of your mom, with the caregiver support YOU need to do it. There needs to be balance - and you are so very fortunate that you / your mother CAN afford caregivers / a facility, etc. So many cannot.
* Get ongoing help in the home. Get your mother used to an/other/s being there 'helping' YOU to help her.
* She will fuss or not like it. And, that is okay. Expect it. Do not be reeled in like a fish on a line.
You will have to
1) be aware ... in the moment.
2) Acknowledge the patterns;
3) acknowledge how you feel (not easy, esp if life long pattern);
4) be willing to feel uncomfortable making new decisions / asserting yourself, and
5) be willing to / want to change.
After you do this a time or two, you will feel SO GOOD ABOUT YOURSELF. And, have a happier husband. You will be 'new' with him too and reconnect with him.
How do you respond to your mother:
"I know this is hard for you, it is hard for me, too. I need to take some time to myself, to renew." Period. End of discussion. Walk out of the room if necessary to reset emotionally.
What most people do at this point is ... continue ... justify ... try to convince ... ends up in an argument.
- Before you speak to her, give yourself a 'pep talk' "I deserve this" ... "Mom will be in good hands / have excellent care."
- Be ready for her to respond in ways that support what she wants, which is YOU. She is perhaps not able to consider how you feel or what your needs are and/or perhaps she was / is a narcissistic personality type and can't consider your feelings anyway.
However, if you continue to let her make decisions, she will ... and you will continue to be exhausted with no time off / respites / quality life for you and your husband. You have to BELIEVE you DESERVE what you want (respite, time w husband, etc.).
And, take a day off a week and go out with the girls for lunch and a couple of drinks. Whatever renews you. You cannot run on empty. Lastly, get your eating under control (I know this one as I have an eating disorder) and get into therapy if you feel it could help you get you back.
Gena / Touch Matters
One of the big problems that the OP has is that she and her husband get by on social security - they don't have excess money to pay for care. The mum can afford it but doesn't want it, so won't pay. The daughter can't force her mum to pay for external agency care.
The daughter can stop providing care, but she would need to find somewhere else to live. It would then be up to the mum whether she paid for in-home care, or opted for a care facility. The OP really is between a rock and a hard place.
Maybe, they are too busy to chat online. Or, possibly they don’t know how to find their original posting.
Occasionally, we will have a poster start a new thread saying that they can’t find their original post.
Maybe, when we see that a poster isn’t responding we can post how to find a former thread.
You talk to the Hospice Nurse and or Social Worker and simply say I need Respite for mom. they will arrange a Respite Stay either at their In Patient Unit or in a facility that they have an agreement with. the facility will be one that can meet her needs.
Respite is one of the benefits that Medicare/Medicaid will cover the cost on for Hospice coverage.
She may not be "actively dying" as you put it, but she is ill and in the last stage of her life. It is unreasonable to make her leave the comfort of her home for longer than the 5 days respite which is available to you.
I think that you have got yourselves into a very difficult situation here. Rent free vs free care - some people would say that either one outweighs the other. Yet, burnout from round the clock care has taken a toll on your health and nothing is more valuable than your health.
Someone else suggested asking your sister to do a house swap for a month to give you a rest. I think that a month might seem too much, especially if your sister also has a job, but two weeks (or just a week to start with) might seem more manageable. I would suggest this to her, explaining just how ill this is making you and that you need a rest. After all, people let out their homes for holiday swaps to strangers, so why not swap with a sister?
Good luck with finding a solution that works.
Are you working to buy Mom's house? If you were paid $15/hour, a low rate for in-home care, with 24 hour shifts every day, that comes to $131,400 per year. After 6 years you may have bought that house twice over!
As had been said countless time on this forum, any caregiver needs a contract. This is a legal issue. Starting today, figure out how much you should be paid based on the going hourly rate in your area for in-home caregivers. Call a local agency and ask what they charge. Limit your hours to appropriate shifts, no more than 5 days/week. Mom has to hire outside help for the rest of the hours needed.
From your pay, you should pay rent based on how much of the house is yours exclusively. Pay your share of utilities. Mom may need all of this documented in the near future.
Any employee gets paid vacation time. How much are you owed? Take a nice long vacation with pay. In the future, take time off at regular intervals, not when you are on the brink of a breakdown. It then becomes a separate issue, how Mom will be cared for when you take your paid time off. If sister doesn't want to help you can't make her.
Bring in a social worker to help Mom understand that she doesn't own you and you don't owe her full time care at the loss of your own well being. She needs to know what her real choices are, and get help to make a realistic care plan that works for all of you.
It's easier to do this then to make her go.
the office/his colleagues would laugh but watching him I noticed he was the most positive-happiest and healthiest of everyone
rest and to get away is a much needed thing
i really think your sister needs to take your mother every three months for a week
minimum
you health and sanity will benefit and no I bet both will object but you know what
it doesn’t matter
everyone must be made to realise you also need some me time and time to recoup
if social money allows go away for a week
it is importsnt yoh look after your health as much or even more than anyone else
you need to be healthy to look after someone else
you could update that your doctor says your health is compromised and you need regular breaks. After talking to your doctor the recommended plan is xxxx
and you are sorry but it needs to happen because the no breaks is now affecting your health ?
good luck
Never mind that I worked twice as hard upon returning I would not have it any other way.
Even now with caregiving for my husband we still took 2 months in last 4 years to spend part of winter in Mexico, last time I took my girlfriend as extra help.
Just now selling our property my husband went to respite facility.
Every caregiver needs to minimize stress!
Now grab your bags and leave.
Do what is best for you.
Caregiving should be done on caregivers terms.
It may be HER home BUT if it wasn't for the OP and her DH mom would NOT be living in her home anymore because she is unable to DO anything in her own home and for herself. OP and her DH are living their and not getting paid to take care of mom and it should be looked at as their home too in my opinion.
You know what you're asking is unreasonable. If you did not, you wouldn't have second-guessed it. You also know for a fact your mother is dying. So it's not a forever situation.
Yes, we get burnout. Yes, some of us need respite. But you need to be reasonable. If you can't handle it, be a grownup, get your own place, and let your mother's assets and insurance attend to her care. It's not as though your mother is not bringing anything to the table here, after all.
What I do think is reasonable is that you tell Mom this is no longer working and she needs to go to a facility . Mom could live quite some time . If you think the 5 days respite isn’t enough and Mom is balking , then end this living arrangement altogether .
The problem is Mom may throw it up in your face that you have been living rent free. She will most likely leave out the part about the free repairs , and all the caregiving you have done. Very elderly ill people tend to get self centered and this is how they react.
You tell Mom you are moving out and she has to go into a facility permanently as this is not healthy. Tell Mom you can no longer do this , that your mental health and marriage are suffering .
Start looking for an apartment for you and your husband. There are senior rent subsidized ones , but usually a long wait list . If possible rent somewhere else until your name comes up on the list . Maybe you and your husband go to work to pay rent until the senior apartment is available . So long as you live in your Mom’s house she will believe she calls the shots . In reality the caregiver should be calling the shots . The one that needs help ( Mom) is the one that has to compromise, she is the ill one .
I wish you luck , I hope it goes better than expected trying to get Mom to understand. Don’t let her guilt trip you into staying because of the free rent . You staying there saved your mother money from having to pay for caregivers , and kept her in her home longer as well . But this arrangement is no longer working .
Good Luck .
I think it’s 100% reasonable to need a break. Or even to be unable to carry on providing that level of intensive caregiving. It does seem tricky, given that you are living in her house and seems like had no Plan B when you moved in with her? Maybe you thought she just couldn’t live this long when you moved in?
Have You discussed the options with the social worker from your mom’s hospice? Could this be framed to your mom as “it’s no longer possible to go on this way….the options are now X or Y.” She’s not going to like the options, but it sounds like continuing on as is would be unsustainable.
I could not do what you have been doing. There is just no way I would move in with my mom, who is nowhere near as debilitated as yours. Even though I love her tremendously. I visit her almost every day and help with a LOT and even that feels like too much for my own mental health sometimes. (I work full time) Best wishes to you.
Call sister and mom together. Husband is optional. Tell them you need a caregiver to show up ASAP as you can no longer stay the course.
Sis needs to take over now with managing the caregivers, paying them etc.
That you will stay with mom one 8 hr shift but not w/o the other shifts being covered. You will handle hospice duties.
If the house is a mess, tell sis you also need a housekeeper to get it clean and back in order and that the caregivers are to do light housekeeping for mom.
Get an appointment with a talk therapist and a primary doctor and get yourself on a healthy diet, exercise, antidepressant, anti anxiety, whatever is lacking or needed.
You need a care contract for yourself and any other private pay care givers who are hired. This is a bit of protection on perceived gifting if mom ends up on Medicaid. If the caregivers come through an agency then they will not be questioned as the payments will go to the agency. Once she starts paying for care her money will go fast. If mom has the proper diet, keeps the fluid off, she can live a long time on hospice or she can go quick from many other things. My mom was diagnosed at about the same age as yours. She lived until 97 and died of aspiration pneumonia.
My MIL had dementia and died of cancer. My DH aunt has had dementia for years and has been off and on hospice for about 3 years now. She will be 98 this fall. So, it does happen that sometimes the caregiver dies before the one they are caring for. When your mom was your age, was she working 24/7? Probably not. You shouldn’t be either?.
Plus anything else you aren't paying.
Then research the price of a full-time caregiver. Are you on duty/on call every day? Tally it hourly x the going rate for a companion aid.
Deduct the lesser amount from the higher amount.
I'm going to guess that the cost of having a 24/7 caregiver costs way more than what you're benefiting from in a rent-free situation. If this is the case -- and since you've said your Mom won't allow strangers to come into her house due to trust (and paranoia) issues -- then IMO this is what she owes you.
Maybe consider paying your sister to stay with your Mom while you have a break.
Also consider a written caregiver contract so that you get paid (minus the free rent/etc). This is realistic and fair. Or, you move out and your Mom pays you to provide her care and then you can afford rent elsewhere. And you say no to anything over 40 hrs so that you can have a life with your husband. What you're doing curretly isn't working (for you and your husband). Of course your Mom won't like it. But one of you is going to be disappointed if things don't change. You don't seem to think your Mom has dementia but she seems paranoid plus has little to no empathy, and these are 2 features of dementia.
You've been providing free care for 6 years. I think free rent is not an even exchange in this situation.
P.S. If she's depressed, is she on meds for this? My Mom just turned 95 and feeling weepy in the mornings. She asked for the lowest dose of something "to help" and her doc started her on Lexipro and it's helping her a lot.
2. Mom is dependant on you.
3. Mom will therefore need to be dependant on *someone else* when you take a break.
Her choices are *informal* help eg other family, neighbours or volunteers or *formal* help eg paid services. Either to her home or Mom moves into a supervised care environment. Some redpite homes have a 2 week min which sounds inconvenient, but can actually get everyone used to the routine.
No-one is entitled to enslave another to their care & restrict their ability to take a break.
But they try to.. The elderley/disabled/the one with needs become tunnel visioned & only see their own needs & makes demands. They lose insight just has your Mother may have. Or let their fear rule them.
Use a common sense approach to cut through this.
Stand up for yourself.
Take your break.
You say "we cannot afford" as far as housing.
Your mother is on Hospice now. While she may not be actively dying, she may soon be. I am curious what you then expect to do yourselves? In order to live, that is. It would seem there are no savings? Are you to inherit your mother's paid for home in return for your caregiving?
If that is the case then I would say that the deal has been struck some time ago. You care for mom and return you have her home as yours on her demise.
Not everything can be perfect and not everything can be fixed given that we all now live way too long (imho) often outliving our own children. It's a sad state of affairs.
Your mother sounds "over it" and exhausted with life. At this age my father certainly admitted that good a life as he had had, and satisfied as he was in having no real regrets, he was simply exhausted with living. Your Mom should in her last time, now on hospice, be allowed to have it her way, I think.
You earn SS. You have no real expenses. Do consider hiring in some in home help. That is perhaps the best that can be done.
And now you're wanting your mother to get out of her own home so you can take a months break, all while she's under hospice care???
With all the money you've saved by not having to pay any major bills you should have plenty saved up that you and hubby can get away for a nice months long vacation, and your mom can stay put right she's at right?
And your mom can just pay for 24/7 care while you're away, whether she trusts people or not.
It is her house, and with her being under hospice care, I'm sure she'd probably prefer to die in her home and not in a facility if she has a choice right?
Have you thought about what if she were to die when you were away for a month? Would be ok with that and not feel guilty? These are just things to think about.
I certainly understand being burned out from caring for someone and needing a break, but I really think you need to be realistic here. I've never heard of any caregiver being able to take a month off when they're the only caregivers, and when their loved one is under hospice care.
I think you should just be grateful that mom qualifies for the 5 day respite from hospice(which you can take advantage of every 90 days I believe)and make the best of those 5 days as often as you can and until she dies.
Otherwise if her care is getting to be just too much for you, it may be time to have mom placed in the appropriate facility, where you can get back to just being her daughter and advocate and not her burned out caregiver.
She's stuck between a rock and a hard place - not an enviable position from any angle.