How long should I allow Mom to crush my spirit?

EMac...our stories are so similar that we could be twins! I, too, realized a dream in moving from a cold climate to a warmer one & had no choice but to bring my 84 year old mother with me necause she REFUSES placement in a facility & my sibling wanted nothing to do with caring for her. My mother's general health is quite good but she has dementia & is, my best guess, in stage 5/6. She, too, has been sucking the life from me with her negativity, anxiety (I can't even take a shower withoit her needing to come find me) & insatiable obsession with having every door & window locked & every drape pulled until the place feels like a freaking mausoleum! I sold my prevuous mortgaged farm so that I could move here with no mortgage & could afford to stay at home with her instead of working an outside job. You would think she'd be grateful. Nope. She hates everything about everything, I'm mean & if she had known I was going to be so horrible to her, she never would have agreed to living with me. When I say fine, I'll find you a nice assisted living facility, she refuses. I've had her living with me for 5 years. I know I can't tolerate things the way they are much longer but I can't legally *force* her into a facility unless she's deemed incompetent & she can "showboat" orientation like crazy in front of her doctors & lawyers. I have no solutions for myself so, unfortunately, I can't give you any helpful advice but I can tell you that I oh so completely understand what you're going through!

FROM ORIGINAL POSTER:
Dear Fellow Caregivers,
Thank you all so much for your kind, thoughtful and experienced advise. My prayers go out to all of us for strength, patience and kindness. It is the greatest; love which drives us. God bless us and our loved ones.

JohnJoe, I find I like you and your answer very very much...and yet I feel a need to caution that some of other poor mothers did not respond to kindness and love, at least not from us. Some blame us for their problems because they think they have to be perfect and bad things should not be happening to them, unless it is someone's fault.

I hope and pray your caregiving journey has stayed as sweet as it was when you posted!!

It's a spirit crushing experience for me too. I guess it depends on a combination of things......starting with the history you had with the person you are caring for.
But yes, I identify with your experience as I am living it too.

Just a long, long, slow road.

EMac Your letter is heartbreaking, and You are having a tough time, but remember it's not much fun for Your Mom either. Believe Me I know, being a full time Carer to Our love One is not easy, but in truth We do it because We love Them, this is Their last voyage in life and We accompany Our love One, and do what We can to ensure a comfortable safe passage. After all Our Mother's gave Us life, and brought Us from Infancy through to adulthood. This is Our time to say thank You Mom for everything, and care for Them lovingly. Your Mom is 88, and My own Mother is 86 years with stage 6 Alzheimer's, so on the law of averages it seems We will not have Our Por Mother's for too long more, yet We will live with Our conscience til the end of Our lives. When Mom is angry towards Me, I respond with kindness and love, this breaks the anger and Mom becomes kind again. When Moms battle with Alzheimer's is ended, and I return back to My own life again, I want to be able to have wonderful memories of My darling Mother, and feel there is a Saint in Heaven looking out for Me. Love to all Care givers.

Emac, I just read your dilemma and can absolutely relate to a lot of it - the negativity, the heat and the aversion to fresh air...intolerable! But most of all I can relate to the soul crushing. I guess the only perspective I have to add is that you might have to accept that there will inevitably be some drama. But it's up to you to change the dynamic, because your mother never will. You're the agent of change here. Don't let your anticipation of her negative reaction prevent you from doing what you know is best for both of you. This is advice I'm still reminding myself of, by the way, as I'm still in the midst of a bad living situation myself. You're a smart woman, and ultimately what you're recommending is not only good for you, but good for your mother as well. Believe that, and convey it to your mother. You can make it happen.

EMac, when I hear the different suggestions for your situation, what I'm wondering is what sounds right to you? I think usually the answer to these questions is inside ourselves and we just have to listen for it. My therapist is always trying to suggest "scripts" that I could use in talking to my mother (and my siblings), but I can't work from a script. I have to figure out what approach feels honest for me and true to the relationships that exist between us.

Like I said to my Mom once as we were driving down a country road near her home: "Mom, there's a nice assisted living place right down the road here. Sis and I went to look at it and they gave us a tour." My mother didn't say "I'm not going." She said "Well, I'm not ready for that yet." At least the idea is out in the open, then.

For your immediate circumstances, you need to figure out ways to make yourself less miserable while you work out a longer term plan. First you have to take control of the thermostat. Keep the heat on in one room and put all Mom's stuff (tv, etc.) in there. You can tell her (if you want) that since you are the one who's up and doing the cooking, cleaning, etc., the house temp in the rest of the house has to work for you. Don't let her bully you into backing down.

If you're not seeing a therapist, now would be a good time to start. You need support and a sounding board and help in staying sane while all this is working out. Good luck and trust me, a lot of us on here know exactly how you feel. Vent away.

I love what you said, countrymouse. Enough to think about applying it to my own situation. I wanted exactly what you wanted - to provide companionship and support. My mother, however, is in no danger of landing anytime soon, she is vibrantly alive (if quite impaired) and has fixed expectations of keeping everything in her life exactly as it always was, using others (especially me) as her instruments for driving, cleaning, fixing, carrying, organizing, etc. I envy you your mother's soft landing, but I'm sorry for all you had to go through to get her there, and I hope you come out of this with some hope, resources and energy for your own future.

Ah, the black hole of negativity - and you're getting slowly, slowly sucked through it. No fun at all, I sympathise.

I do not for a second disagree with those who are firmly for getting her placed in long term care. Not at all. But in case you can't quite face that - and I fear the reason that made you bring her with you might also stop you placing her - I thought I might give you the perspective of someone who's been through that hole and is now about to pop out on the other side.

It's - unbelievably - over six years since I sold my house and moved in with my mother, before we sold her house and moved with my partner (now my ex-partner, n.b.) to where we are now. We too had a complete change of location, although of course geographical distances in the UK barely count in American eyes. I too expected to carry on my life and provide my mother with company, security and care; and I wildly underestimated how powerful the destructive emotional drag of her unhappiness and frailty would be.

Why didn't I call the whole deal off? I wish I had a straightforward answer to that question. Sheer stubbornness possibly; perhaps a little suspicion, too, that if I had placed her in residential care I'd still have had all the emotional stress but with the added anxieties and inconveniences of not being in control of her care or its quality. Not to mention guilt, which I don't mention for myself because I have the great good fortune not to be very sensitive to it. Whatever - I dug my heels in, nearly went nuts, certainly got extremely depressed, have been close to murdering or at least physically attacking siblings, have lost my long-term relationship and am looking at starting again, broke and single, at the age of 51. Not clever, really.

So, what about the "however." My mother is now, almost certainly, actively dying. She is here at home. She is calm, not in pain, seems to be suffering no distress. I feel I will have brought her in safely for a soft landing. And that is, sort of, the one main goal I set out to achieve.

Without this forum, our excellent local health and care services, good friends, kind neighbours - and, to be fair, a painful but worthwhile semi-rapprochement with a sister I've never been close to - I do not believe I would be typing this now: it is possible to get through it. It is in some ways worth it. If you decide for yourself that you cannot accept alternative arrangements, be comforted - and shout loudly for help from every conceivable source.

This is not a recommendation that you keep going, it's a consolation just in case you feel you have to.

Have you talked to your Mom about the way you feel? Found out why she is so unhappy? Asked her to change? She loves you; she won't want to suck your soul. Maybe open and honest communication would clear the air. When i stopped seeing my Dad as someone to kowtow to, and saw us as a team where he had to pull his weight, and stop the negativity, and i had to honor his need to make the decisions effecting his life, we worked, and he was grateful. When i realized I was 60% of the problem, things got better.

Can you change your reaction to the stress of caring for an elderly blind person, you love? Focus on the love. Try to see things from her perspective. I hear you. Sometimes the guilt and sorrow, because I can't fix death and dying overwhelms me, and i blame my dad who is dying and scared from the medicine induced dementia that I gave him. Sometimes when he yells at me all day, and then praises one of my lazy siblings, I just want to get in the car and head west till I hit the Pacific. I am rambling, I am sorry.

You need to clarify the problem. Is this caregiver burnout, or do you just not want to do it anymore? If it's burnout, start purchasing help, cleaning lady, companion for Mom etc, Give yourself a day free from Mom every week. it is amazing how having some free time for yourself, gives you the courage and strength to continue. If you can't do it anymore you have options, a small apartment for mom in an elder community, assisted living. you will still have to do an amazing amount of the work, but you will have your space.

When things are hardest, I look at the caregiving as a test. What kind of person do I want to be.

"Mom, I sure thought we'd enjoy living together, because we love each other. But I can see that it just isn't working out. I do love you, but I think we'd get along a lot better if we lived separately, and if you had some company while I work all day. I'm going to start looking at places for retired folks and when I find some that seem good I'll take you to see them."

I'm afraid that unless you are her guardian you cannot legally insist on where she lives. But you do have a legal right to determine who lives with you. If you have to, you can resort to evicting her ... or is she on the lease with you?

Tell us a little more about your living arrangements and among us we'll probably be able to give you practical advice.

Pam's advice on who to contact is good -- simply apply it to your new state. Let us know if you need help finding information for your new location.

The objective is clear -- the two of you need to live apart.

Emac, do not let her crush your emotional well being any longer.

Has she always been this way? If so, she's the one being cruel. Even if she has not been this way before, it is not cruel to place her in a nursing home or in assisted living. Enough is enough and it is now time for change.

I like pamstegma's idea. There is nothing wrong or evil about protecting oneself and one's health.

Can you separate the living space in any way? Put heat in her room only? Have you figured out the finances of two homes into one, then separating the finances into two again?

Answer: crush your spirit? Not a moment longer! Don't allow it.

A neighbor, who had just moved in, asked for help, was afraid, complained, was confused. Then became weak. Adult protective services came without result, attempts were made to contact her son. I consulted agencies, fire dept. said she would have to collapse before they could intervene. She went off with 911, and into a board and care. It did not help at all that I saw this coming in advance.
If your mother is ever taken to the hospital, be sure that discharge planning includes that she can no longer live with you, arrange a facility then. Don't let her return home. This is for her, as well as you.

We tend to forget that when people get older their habits can change due to health issues. Bet back in Wisconsin your Mom had kept her home quite warm and most of the lights on, but you may not have noticed. My parents [in their 90's] keep the heat up to 85 to 87 as Mom always cold, its a side affect of having a thyroid condition for her.

For a few seconds put yourself in your Mom's shoes, she is 88, she can no longer do the things she use to do because of age decline, she is legally blind, thus she had lost much of her independence. She can't hop into a car and drive out to the mall to go shopping. Forget movies, or sightseeing. You probably would be grumpy, too.

Talk to your Mom, ask her to think about living in a place where she is around people of her own age group, where she could make new best friends, dine every meal in a common dining room, and join in activities.... if Mom had gone to college, make it sound like dorm living once again or make it sound like a resort. If she shows a spark of interest, set up appointments for the both of you to enjoy a free lunch at an independent or assisted living facility. Who knows, maybe Mom might really like the place... or she could totally shut down to the thought. You don't know until you ask.

I agree, it's time to let her play with people her own age. Call:
Milwaukee County Department on Aging in Milwaukee, WI
1220 W Vliet Street Suite 302
Milwaukee, WI 53205
414-289-5950
They will help you

Well if she's in a facility, she'll be around other people and you won't be bearing the brunt of her unhappiness alone. I'd visit some different places, decide which one is best for her and then place her. She won't be happy, but it sounds like she's not happy now and will never be happy because of her personality. You can still visit her on a regular basis and also have a life of your own in your new location.

My mom is 95 and she and my dad moved 160 miles north to me near me. My mom lives alone in independent living and at her age, she's happy to be by herself most of the time. So she has no one but me around who knows her. It's too bad, but her friends and siblings are all either dead or in the nursing home where she used to live. So she wouldn't be any better off staying where she was. It's sad, but it's just the reality of the situation.

So find a place for your mom and work with their professionals to make the transition as easy as possible for both of you. Please keep us posted on how things go.