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My fiance and I have been caring for his mother post-cancer surgery for about 2 years. She never fully recovered afterwards. This year, she was also diagnosed with amyloidosis. It has no cure, and it is likely she will slowly decline for the next few years.


She's a wonderful person and it makes me so sad to watch her slowly lose function. Due to swelling, she can't walk more than a few steps alone and we take her to the bathroom, make her food, tend her home, cats, etc.


I am self-employed and do my work from home, so I am here caring for her alone Mon-Fri while I work. Between trying to keep up with my business and caring for the house and her, I am starting to feel hopeless and depressed. I've never felt so overwhelmed in my life and I'm unsure what to do.


She's not so bad that she needs to be hospitalized, and her daughter comes to take her to appointments for a few hours once a week. Aside from those few hours, I feel trapped in this endless cycle. And I hate myself for feeling trapped because she probably feels so much worse.


I'm a pretty socially awkward and introverted person, so I don't know how to help her much outside of just doing things either. I'm sure she's lonely, but I'm already so mentally drained and exhausted I just keep doing the usual with a smile and hoping that's enough.


What has worked for you as a caregiver? How do you cope with all the conflicting emotions of a situation like this? How do you stop from feeling like you're drowning?


I've tried to tell myself to just tough it out, but I get massive anxiety knowing things will only get harder with time. I need to find a better balance somehow because I'm breaking down.

There needs to be hired caregivers brought in to help out with some of the caregiving. It's the only way. You already sound like you have caregiver burnout and you haven't been at it very long. It will get a whole lot worse if there's no respite for you.
Of course you and your fiance love your future MIL but she is a burden. A heavy and exhausting burden that no one can bear alone.
Yet it sure sounds like your future MIL, your fiance, and his sister all expect you to.
Think about what your life is like now. It will steadily get worse if you continue to allow these people to use you as they are. I apologize if I sound harsh, but in plain English you are being used.
Your fiance's mind is at ease because he knows his mother is in good and free hands all day long. His sister I'm sure is very pleased with the arrangement as well because she doesn't have to do any of it other than take her mother to a doctor's appointment. Then there's your future MIL. I'm sure she's happy with everything like it is too because you're keeping her out of a nursing home, and by providing her care for free you're protecting her assets as well so her kids can potentially come to an inheritance at some point. The only one who this care arrangement doesn't work for is you. That's not acceptable. Think about what your life is now and what it will become in the next few years. You've been caring for her for two years? How long have you been a 'fiance'? If you love it put a ring on it as Beyonce says because as a fiance you are legally entitled to all of nothing. Think about that before you sacrifice more years of your life caregiving for free with no assistance.
It is for your fiance and his sister to work out and arrange their mother's care. Stop being the only solution here.
I'm a little long-winded but I noticed a response from you further down on the thread.
You both live with your future MIL and split the bills three ways? That is ridiculous. You are literally paying to be her caregiver? Come on. That has to stop today.
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Reply to BurntCaregiver
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Welcome.

Is anyone else having massive anxiety, but you?

You matter, too.

Something needs to change here. Just because a caregiving situation started with one arrangement, that arrangement does not need to be chiseled in stone forever and ever, amen.

Perhaps you could start with writing down what YOU want and need.

Then, present it to others involved in the caregiving, remembering that it all has to work for everyone.

Do this before you lose more of your heath, and your very soul.
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Reply to cxmoody
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Kaz729...Asking about some things would not be rude, you are in the position as a
caregiver, responsible for her when you are with her, your financial future will soon be linked to your fiancé's (if you co mingle funds) and I am sure you are paying some bills now. You all live in the same house you should be just as concerned as to how bills are paid, and the financial resources of the person that may be spending the rest of her life with you.
These things directly effect and concern you.
I think once you start wiping someone's butt you are past the point of typical "social standards" where you do not ask about financial things, or discuss religion or politics.
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Reply to Grandma1954
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The problem is, you won’t get better until you stop this activity and even then, it can take awhile. You must feel very conflicted as well as overwhelmed. You already know everything we will tell you about how this will destroy you. We can validate your feelings and that is sometimes valuable. Try to get a therapist you can do Telemed appointments with. You need some help sorting this out to take action for your benefit and BF mom benefit. She deserves to have caregivers who want the job.

Get away often and not just to do chores or health appointments. You need time to de-stress where you can have a few days where no job or patient or boyfriend has expectations of you so you can think.

Why not live the best life possible? One that fills you up and doesn’t suck you dry. Hugs
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Reply to 97yroldmom
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Well, this arrangement seems to work for everyone but you. Your fiance gets the peace of mind knowing that you are doing the caregiving during the day, his sister gets out of all caregiving except for a few hours per week, and your fiance's mother gets the benefit of free care in a home setting.

Have you said anything to your fiance? You don't have to put up with this situation.

You've been doing this for two years now? It is probably expected that you will continue to do this. Is that what you want? If not, what can you do to change the situation?
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Reply to CTTN55
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bundleofjoy Sep 17, 2021
dear kaz,
:)

hugs!! i hope your fiancé is a great guy, because you’re wonderful!! he better be great!!

if not, leave him, fall in love with someone else.
he must/should care about you…!
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I strongly suggest that you find another place to work from or..."pretend" you are somewhere else.
Mom can hire caregivers that can come in from 9 am until 4 pm. That will give you 7 hours of uninterrupted work time. It will also give you a break. You could take your work and go to a local coffee shop, or a park if you want to get out.

Check with resources in your area, Agency on Aging, local Senior Center or Senior Services and see if there are any programs that she would qualify for that might help with caregivers.
If mom happens to be a Veteran check with the Veterans Assistance Commission or the VA to find out if she qualifies for any services.

I also think you (your fiancé) should contact Hospice and see if she would be eligible for Hospice services. With that you would have a Nurse that would come once a week, more often if needed. A CNA that would come a few times a week to help with bath or shower, some bedding change, order supplies. You would get the equipment that you need to care for her safely. Hospital Bed most likely with alternating pressure mattress, Sit to Stand or a Hoyer Lift if needed, Supplies, the services of a Social Worker, Chaplain, Volunteers that could come in and sit with her while you work or go to the store.
And Medicare, Medicaid and most insurance will cover almost 1 Week of Respite Care each year.

I do hope your fiancé is doing MORE than his fair share of this, it is his mom and while this sounds harsh you are not "obligated" to care for her.

I was a caregiver for my Husband for about 12 years. I never claimed to be sane, or to have remained sane. Some insanity can keep you sane! (does that make sense?)
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Reply to Grandma1954
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Kaz729 Sep 17, 2021
Oh yes my fiance does a lot in the morning/evening and on weekends.

Thank you for this info, I will take a look at some of these resources and see if there's an arrangement we can work on with people to come in and help. I'm not sure what her financial situation is, I've been afraid asking would be rude.
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Kaz, welcome to the forum!

It's nearly impossible to tend two households without help. I think once you acknowledge that you are attempting an impossible task, you might be a bit relieved.

What are MIL's resources and what are her needs? Has anyone explored Adult Daycare or Assisted Living? Has she gotten a "needs assessment" from her local Area Agency on Aging?

They can help with case management and suggestions about what kinds of assistance (either at home or elsewhere) that she can benefit from.

Please understand that you need to take care of you as well as MIL. This is not being selfish. It's called self-preservation.

How much of her care is your husband, her son, taking on?

This is a serious conversation that you all need to have.
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Reply to BarbBrooklyn
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Kaz729 Sep 17, 2021
We actually agreed to move in with her after the initial surgery that started this all. Ive just never owned a home, so tending to such a large one with so many cats has been a lot of work. It was meant to be temporary until she recovered, but now that she won't get better things are confusing.

The family, his sister especially, is very against bringing up anything to do with assisted living or something that would take her out of her home. His mother becomes quite agitated and depressive whenever she's had to stay in the hospital for more than a few days, and they're worried she would do the same if anyone suggested that.

Judging from the comments here, I should do some more research on nurses who do home visits during the day. Thank you for the insights!
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