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EmmaSue Posted January 2018

Faith that things will change or get better...

Has anyone experienced the elder that they care for (who has no dementia and is mentally competent) say things like “God’s going to help me get better “ or “if I could just do A-B-C or D things will change “ or “ just be patient God has something for us, its just not time yet.” I don’t mean to sound disrespectful and I am a person of faith but I also believe in reality and if something isn’t right and hasn’t been right or changing for the better it's most likely not going to. I apologize if I sound calloused I’m caregiving full-time no respite doing all ADL & IDL for over 2 years and have now added caregiving responsibilities for developmentally disabled adult stepchild. I’m struggling to make it through most days. My husband requires nursing home level of care and I’m trying so hard but not providing the level of care that I used too. We were very fortunate to get a handicapped accessible van which I thought would be so much easier than riding the bus and allow us to get out, and it has but my husband doesn’t understand that sometimes I’m too depressed to even leave the house and he believes that we just wasted money on the van. I’m exhausted and rambling and would welcome a fresh prespective. Thank you

smeshque Feb 2018
Faith is what hope is made of.
I am so sorry for your struggles, I will be praying for you. Pray, and Pray some and wait on the Lord to lead you to what to do, if you are a believer.
Don't discourage others faith in what they say to you. All things work together for good to them that love God.
Hang in there.

jeannegibbs Feb 2018
What is your plan for your stepson while you are visiting your mother?

This just might be a great opportunity for husband to get acquainted with other means of care.

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EmmaSue Feb 2018
Thank you everyone for your thoughtful posts. I have looked into AL via phone calls and literature although hubby still protests “I’m not paying that much to push a button and wait my turn, AL and NH prices are a racket and for rich people”. He’s agreed to tour some local facilities where we could continue to live together. Got to love his sense of commitment he pays all his bills and will continue to pay for the student loan regardless, AL is out completely if we can’t swing the student loan 🙄 At any rate have found that my mother has cancer (1300 miles away) and am trying to make plans. He says we stay 2 weeks tops (in AL where she lives). I say it takes as long as it takes lots of unknowns right now and I refuse to sacrifice anything further as he does not realize how much I have given up at this point. I know the VA will pay for a nursing home when I am gone. My plan was to stay at AL where she lives until I felt she was okay, I got to visit family and make sure everything is okay. He’s only willing to do 2 weeks tops. I love him dearly however I am at the point of saying you stay in a nursing home until my head is clear, I am healthier and we can revisit some things. I’m not trying to be cruel in any way, he doesn’t get it what I’ve been doing for him and all I haven’t been doing for myself. I think it’s time for a little reality therapy for both of us. Rest for me and the reality of nursing home living if he’s not willing to do AL because he has to pay that darn student loan. Sound reasonable? I love him but do not see eye to eye on some very important issues and I don’t feel it’s just or right to be the eternal servant and sacrifice if he’s not willing to do the same. Thanks again for listening and for your responses

dogperson Jan 2018
Puts me in mind of a Mark Twain quote: "Faith is believing what you know ain't so." I wouldn't say that to faithful relative though. I agree with MountainMoose about whatever gives her peace of mind.

MountainMoose Jan 2018
Mom, who has dementia and a host of other issues, occasionally mentions God would help her. I'm atheist, but if that gives her strength I simply agree. I even mention heaven a few times. It's not about me, but it's whatever gives her peace of mind.

EmmaSue, I'm so sorry for your situation. Others upthread gave you great advice for getting professional care for your charges. I hope you look into changing the situation. You matter. You must take care of you. Best wishes and a {hug}.

BarbBrooklyn Jan 2018
EmmaSue; I went back and read your previous post from a month or so ago.

At that time, you said that your husband wouldn't go to respite because he didn't understand what you would be doing.

This is not the question of a person who has no cognitive deficits (unless he's a monumental narcissist). In either situation, HIS choices are not good for YOU and your mental and physical health.

If he loves you, and if he is not suffering from cognitive issues, he would understand that no one person can care for two disabled adults alone, even someone so much younger than himself.

Please think about this, and make some choices that will benefit YOU.

Countrymouse Jan 2018
EmmaSue, two months ago you explained how badly you needed a respite break and support with caregiving. At that time you also explained that you had "some" caregiving responsibilities for your adult stepchild, but not full-time.

So here we are, and it sounds like you still haven't had a break but the stepchild's care has become full-time.

Who's making the decisions in your household? What outside agencies are you talking to? - like Area Agency on Aging or VA or maybe families' networks related to your stepchild's disability.

jeannegibbs Jan 2018
It is extremely hard to provide NH level care in a private home. It is impossible for one person to do it alone. I am serious. You may think you are doing it, but I suspect you are not ("I’m trying so hard but not providing the level of care that I used to.") And if you are now, I predict that you will burnout. Then where will your loved ones be?

Taking care of two adults who need lots of assistance of different kinds is just not feasible for one individual. I'm sure you are awesome and devoted and efficient. But you are human.

Do you have any help coming in? What kind? How often? How long?

As for the hopeful statements of faith, I wouldn't discourage them. You don't have to fully agree, but state your beliefs hopefully.
“God’s going to help me get better “ "If it is God's will, it will happen."
"just be patient God has something for us, its just not time yet" "Sometimes it is hard to be patient, isn't it? And while we are being patient, I think the plan to bring in some additional help will be moving in the direction of God's plan."

I said I would not put my husband or mother in assisted living -- as long as they only needed assistance, I would provide it (or my sister would for Mother) with whatever help it took. But if either of them needed nursing home level of care, then I would turn it over to the professionals. My husband stayed at home for 10 years, dying in hospice in our home. My mother lived with my sister for 1+ year and spent the final 2+ years of her life in a nursing home, surprisingly content.

I'm not saying you should look for placement for your husband or stepchild. But you absolutely MUST have adequate help, rest, respite, and self-care.

BarbBrooklyn Jan 2018
Emma, I'm going to sound calloused, but I'm going to ask a couple of hard questions:
1. If your loved one needs nursing home care, why are you, one person, trying to do what it takes 3 shifts of young, well rested caregivers to do?
2. Who added a developmentally disabled stepchild to your already overloaded plate?
3. Is your depression being treated?

I am a person of faith, but my old Irish grandma had a saying " God helps those who help themselves". Yes, pray and quiet your mind gain clarity. But also make a plan.

Has your husband had a needs assessment from the local social services department?

polarbear Jan 2018
Hi. I'm so sorry for your struggle. Your plate is full and over flowing.
Perhaps the elder with competent mind you mentioned sees how tired you are and how difficult it is for you, so he/she says those things to comfort you. Or maybe he /she really has faith.
Have you tried quieting your mind and pray for an answer? At the very least, you can get a few moments of peace and clear mind. I should take my own advice and go do that.

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