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ladybythegate Posted July 2013

So demotivated and sad.

After helping mother with mobility issues (mentally alert) for ten years while she was still living in her home went out on a limb against siblings to avoid going to a nursing home. Always felt in my heart I would do everything I could to keep her with me. Now wheelchair dependent-needing help the majority of the time transferring from wheelchair to stair lift,recliner,bathroom and all activities of daily living. No real recognition over the ten years but out of love, took her to live with me a little over five months ago. I asked for some compensation, in large part because I wanted my work to be valued. After much debate and emotional upset,payment was made for three months and has now stopped. Is unwilling to pay for home health aides as she feels I have freedom to run out to do errands (after helping her to the bathroom and putting everything at her fingertips. I have been very honest with her about my feelings but honestly when you have to tell people to be grateful. Siblings of no real help in this regard as she runs her own affairs. While the physical care can be hard, the lack of appreciation is what really gets you down. It will break my heart if she leaves my home for other care arrangements when it didn't have to be that way but I won't be able to tolerate this situation long term. One brother took her for five days, another reminded me she could have gone to a nursing home. Two other siblings aren't directly involved. If anyone would like to comment-please do. My first reaction when I found this site was I could have cried seeing other caregivers trying to encourage each other.I really respect what you all are doing.

Jinx4740 Jul 2013
AlisonBoBalison - I like your name!

I'm one of the weirdos with "normal" parents. I can't imagine that I would ever be expected to have to pay my father's expenses. Due to pensions and SS, he always had "enough." He would always want to pay in restaurants, and ask to see if I had enough money. I would gladly buy him things I wanted him to have, and would gladly have paid if he didn't have enough money.

Is it out of the question for you to have a conversation with your father like the Captain recommends? He doesn't want to spend his money, but I don't think he wants you to be impoverished! Ask him to figure out how long his money will last, and even discuss him qualifying for Medicaid someday.

I wonder if you two have different values, different ideas of what money should be spent on. If he doesn't want to spend money on something you think of as important, don't rush to spend your money. I know it won't be easy, but you should be able to support yourself, to pay for your own expenses, after he is gone.

ladybythegate Jul 2013
Thanks everyone for your comments. It feels so good to be understood.

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anonymous158299 Jul 2013
get genuine about the real wages and ss contributions this is costing you. an attorney will draw you up a caregiver contract for 250 bucks. ours is worded that im to recieve 1700 a month but i only require 450.00 to pay my bills. it gives the elder an idea of how much the work is worth and even drawn out are the expectations for these wages. its a lot of work.i dont pay rent at moms house but if i billed her for the auto, furnace, repairs, maintenance, lawn care, meal preperation, plumbing, etc, it would really add up. never mind the lost work wages..
get your siblings to relieve you for a few days, theyll see that you need compensation in about 2 hours.. it looks easy from afar iz what im sayin..

CarolLynn Jul 2013
correction ... THAT people on the outside...

CarolLynn Jul 2013
And AlisonBoBalison - re: her dad, "He saves 'his' money while l spent, or spend, sll of mine for his benefit." Another sad truth of caregiving at people on the outside are disinclined to acknowledge. Oh, boy, I know a lot of us can feel this one!

CarolLynn Jul 2013
THANK YOU, JessieBelle - "The lack of respect and appreciation is one of the hardest things about this job. We are awful if we want to get paid, because we should do it out of love. Never have been able to understand why this love thing only goes one way."

So often we deplete ourselves both financially and physically to some degree BEFORE we think to ask for compensation.

Your siblings are having what I call an "l told you so" moment. Even tho YOUR plan to keep your mom in her home worked for 10 years, now that you have your mom at your home for 5 months and it's becoming more difficult to work it out, they are giving you a very childish "na na na na na na" (you have to kind of sing-say that to the proper tune to make it work, haha)

If your mother has all her faculties and truly doesn't have dementia, you should be able to sit and reason with her. Let her know that you have helped her stay in her own home for 10 years and now you have moved her with you because she can't get along on her own any longer but that it is taking a toll on you. This is presuming she has funds and you have to tell her that without some financial assistance, you fear that maybe all of her other children were right in the first place, that she should be spending her money in assisted living. Now, make it clear that you don't want that and that living with you would be much less expensive but if she feels she's not able to help you, the two of you are going to have to look for another place for her to live.

if you got her a neuro psych evaluation, you may discover that she has some level of dementia. You just may not see it because she has changed over time you've gotten used to her behavior and you've adapted.

Keep us posted about what you decide to do.

ladybythegate Jul 2013
Thanks JessieBelle for your response. If I had to do it over again I definitely would have hammered out a lot more details ahead of time but like so many others,I just jumped in.

AliBoBali Jul 2013
Wow, lady, you are speaking to the very thing on my mind today. I caregive to my father. I came across the country (can't even say "moved" since MY furniture and personal things are still in storage out West) to help out my father after he called me a couple of times telling me of problems he was having. I answered that "call" and while I certainly don't regret the decision to help him, I do find it interesting that he seems only capable of taking from me, never bothering to contribute much at all to the enormous amount of work and sacrifice I'm putting in here. He saves "his" money while I spent, and spend, all of mine for his benefit.

What I suggest is that you do enact some "tough love," as hard as its going to be for you. Find a place (AL or NH) that is month-to-month, where there's no long term contract. Lovingly get your mother transitioned into the facility and be prepared to leave her there... or be prepared to help her make other long-term plans... Maybe after some time has passed the relationship between the two of you - specifically, your mother being more appreciative of all you have done and are willing to do - will improve.

Perhaps she will understand how undervalued you are. Perhaps not. This is out of your control. Its sad that our sacrifice goes so unrecognized but there has to come a point where we take back our own dignity and self-worth again... I think.

These are just some of my ideas. I certainly "feel your pain." And I wish you all the best.

JessieBelle Jul 2013
I hear you, sister caregiver. The lack of respect and appreciation is one the hardest things about this job. We're awful if we want to get paid, because we should do it out of love. Never have been able to understand why this love thing only goes one way. Many of us put with things that we shouldn't have to, and we have to shoulder it alone without being able to talk about it. People would think us terrible if we talked candidly about what is going on. I don't know what it is about being a caregiver that people expect you to give and give and not talk about the use and abuse going on. It is good to find someone we can vent to. It may not solve our problems, but it makes them seem a bit easier.

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