My sister is my 96 year old Mom's full-time caregiver. She has been doing this for almost 5 years, after taking early retirement to do so. She has some help a few times a week now, but the constant over-all responsibility and limitations on her freedom are getting to her. She is more and more depressed and I am very concerned for her.

She is extremely committed to Mom and determined that we will not put Mom in a nursing home (Mom's greatest fear). She is now getting very pessimistic about what her future holds, thinking that she will soon be to old to enjoy life.

She is a very caring, nurturing person and needs to have someone to talk to about all of this besides family members---we are torn between wanting to care for Mom and wanting to rescue her.

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When you say 'we' are torn between wanting to care for Mom etc. - who's we?

First of all, at some slight risk of being a suck-up to AC, may I suggest you put your sister onto this forum? The opportunity to discuss really private emotions with your exact peer group is such a relief. I can vouch for it.

I've been mulling over your post. I am confident you are genuinely concerned for your sister's wellbeing. I have reservations about some of the options you seem to be considering.

Be that as it may, you ask principally whether there are counsellors specialising in caregivers' therapy. I don't doubt there will be; but to be frank I've sat in front of professionals with sympathetic expressions on their well-meaning little faces and wanted to slap them, quite hard. So my answer to the "are there any who understand" would be: not unless they've done it too. If you're recruiting one for your sister to talk to, question a few candidates about their direct, personal experience, and if they know all the theories but wouldn't know a soiled diaper if it fell on their foot…

My reservations stem mainly from my being in almost exactly your sister's position (except I expect I'm quite a lot less financially secure). My three siblings make no insincere pretence that if I weren't around they would take my 90 year old mother in, so her options, too, are me or the nursing home. I can almost hear them voicing exactly your concerns. But the rescue idea… Well, here is how it would look to me.

Committing my mother to institutional care at this point would negate everything I have been working my behind off for for the last five years. I have also observed that my cousin, whose mother has longstanding Parkinson's Disease and is now in a nursing home, is no less stressed and anxious about her than I am about my mother. For those and other reasons, then, I firmly intend to stick it out if there is any way that I can. If my siblings at this stage were to intervene and overrule me, I would be angrier than I can coherently express; and the more they told me they were doing it for my benefit the angrier I would become. I make my own choices.

Your sister, too, is making a choice. It isn't just the decision she made when she took early retirement. It's a choice that she implicitly makes every day: to stick around, or to find alternatives. By being there for her and caring what becomes of her, you are doing the right, loving thing; but be very careful how far you go to persuade her to change her mind.

You say some very interesting things about what your sister is feeling, and that is why I believe you should rest easier about her. The very fact that she feels free to express to you that she feels trapped, pessimistic, aged, overburdened: this is a tremendous thing. She is able to be honest with you, and you are listening.

But don't overreact. While your sister remains clear in her own mind that she chooses to care for your mother, support her absolutely in that. By all means encourage her to look after her mental health - she may need treatment or therapy for depression, she may not, there are many options on that point - but also consider her practical living arrangements.

What are the limitations? This is not a rhetorical question. If she needs a proper break of a week or two, or a month, then that can be arranged with no impact on your mother's wellbeing: perhaps one of the family could come to stay, or you could consider respite care in a reputable nursing home if you can find one whose quality your sister has confidence in. I cannot recommend highly enough that she does get some time away, regularly. Apart from anything else, she is probably long overdue a few nights' unbroken sleep.

If, however, for example, the limitations are more along the lines of where your sister wishes to live permanently, or second careers she'd like to be getting on with, then I agree that it is hard to see your aspirations sitting on the back burner indefinitely. Rather than voice an opinion, let your sister say what she needs to say about this point. My own feeling about myself is that they will just have to wait, but then I don't happen to have that sort of retirement dream.

The nub of this whole, hard discussion is that I will get my life back when my mother dies, and not before; but this would be no less true if my mother were living elsewhere and my involvement in her care were limited to visiting her regularly and worrying about her incessantly.

You can imagine how mixed one's feelings get. I do not want my mother to die. I would like my life back. It's a uniquely intractable dilemma.

Your sister is a fortunate woman to have you to share it with. Best of luck, I hope she gets to an easier place very soon.
Helpful Answer (1)

There is hope. A nursing home may be an answer. I am a counselor, and I had to take care of my mom who has late stage alzheimers for 2 years. Really 7 years...and while I felt like mom wouldnt survive in a nursing home, and the pressure of taking care of her and no assistance from my siblings, and them being upset when I mentioned nursing home, I had to put to practice what I preached to others....self care. My mom would not want me dying at her expense. So if it is affecting your sister's well being, and mom is not capable of caring for herself, either sister needs to get so much in place that it takes the burden off of her to care for mom, or assisted living or nursing home would have to be. There isn't really any 'nice' answer; there may be guilt associated in making a move like nursing home, but in the end, sister have to be well enough to live after mom departs this earth. There are good nursing homes out there, too, it is a matter of connecting with the local corporation for aging in her town, or senior services to get help on what options there are. But she is not alone, and there are options. The state may cover costs for more home health aides, maybe even consider palliative care in the home, and respite services for sister to take breaks. Yes, there is hope for your sister. I would suggest, being a counselor, that she talk to a counselor for depression. Heck, I had too! :-) and it helped along the way. Best wishes to her and your family.
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What are your mom's impairments? Your profile lists only age related decline? Is mom in good health? Still able to walk around by herself? I guess my point is, is depression causing your sister to become I mobilized when there is no reason to be? Then she needs meds for depression and talk therapy to get her moving in the direction of living again. However, if mom has dementia and or significant physical needs, like incontinence, she needs shifts of caregivers. First of all, get your sister to a qualified MD to evaluate her mental and physical health before she breaks down.
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Check the area your sister and Mom live in for support groups. It doesn't even have to be for caregivers, depression would work here. First off, sister needs to see a doctor! It would probably help for you all to get together immediately and give her a weekend or week off all to herself. This is hard work and 24/7 soon becomes a lifestyle that threatens the caregivers' physical and emotional life. In a NH Mom would have at least 3 shifts of people taking care of her. They all work 1 shift, get good nights of sleep and probably 2 days a week off!

I doubt your Mom intended to suck the life out of one of her children. The time has come to make decisions based on the reality of the situation; not what Mom wanted or Sister promised. Those days are past! Best of luck!
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FreqFlyer, I can't tell you how many times I thought to myself, "Oh, God, I wish I was 40 years old doing this." Wore me out. I look back after a month, and I swear, I don't know how I did it. (I'm glad I did, but it sure wasn't five years.)
Helpful Answer (1)

Any psychiatrist who is properly trained in psychopharmocology can medicate your sister's depression. Only you can give her permission to reclaim her life.
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One thing I was surprised to learn is that 1 out of ever 3 Caregiver dies leaving behind the person they were caring. Then Mom or Dad continues on living comfortably in a nursing home for years later.

So many times grown children will tell their parent(s) that they will never live in a nursing home.... but when the grown child says that, Mom and/or Dad are still very mobile, still able to drive, still able to do everything. We rarely think of our parent(s) being in a child like state, needing help with walking, help with eating, help with bathing, help with diapers, and asking the same question 20 times in a day.

This website has been my counselor/therapist, and has opened to eyes to what might come forward with my parents, and what to do if that should happen. I know with my parents [both in their 90's] that I am now too old [pushing 70] to be a hands-on caregiver as I, myself, am dealing with my own age related decline. It's difficult because my parents are in denial that I am also a senior citizen, I am no longer 35.
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I hope after you get a number of answers on this post that you won't be torn about rescuing your sister. In my opinion, that should be your primary goal.

Look, NOBODY wants to go into a nursing home. NOBODY is raising their hands at the ripe old age of 96 and saying, "Please! Please! Send ME!" But sometimes that's exactly what we must do.

If mom were in a nursing home, suddenly your sister becomes her advocate . . . the person who makes sure staff at the NH knows she has a concerned and savvy family member looking out for her and monitoring their care . . . INSTEAD of being her full-time "slave" -- which, at 96, I'm thinking that's the way it's shaking out right now.

Mom isn't going to get better. She's only going to get worse. Unless the rest of the family can step up and relieve your sister big-time, it's an unfair burden, in my opinion. And, yes, most definitely, your sister's life is passing her by. A large percentage of care givers die before their loved one. No joke.
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You have a critical and difficult choice: who will survive? Your mother or your sister? Do nothing and sis will die before mom does. 30% of caregivers die before their patients do. Look up BoniChak here. Just had a heart attack
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