Re: Early Onset Alzheimer's Caregiver needs HELP!

carols689614 · ‎10-14-2018

I have been a caregiver now for 10 years - first to my sister who died in 2012 from metistatice Breast Cancer and now for my husband who was diagosed with 2013 with Early Onset Alzheimer's. I myself have MS, but am in a remission for past 6 years (thank god). I have not been able to work since 2008 because of being a caregiver. I have an after school job that pays a little, and I was a councimemer for 5 years which paid even less (a monthly stipend). I'm at my witts end and don't know where to turn or what to do. I can't leave him home alone for long periods of time and we're running out of money. I can't seem to get my father in law to understand that we are broke and we need money. I could work from home, scanning documents/pictures for people ... but can't seem to get anyone interested in having that done. We live in a fairly affluent community, but can take care of the yard because we had to sell our truck and have no way to remove debris to the local dump. Every thing has a cost and there are times where it makes more sense to just pack it all in ... What does one do when they have been kicked and are nearly down & out????

JaneCares · ‎10-14-2018

@carols689614 wrote:
I have been a caregiver now for 10 years - first to my sister who died in 2012 from metistatice Breast Cancer and now for my husband who was diagosed with 2013 with Early Onset Alzheimer's. I myself have MS, but am in a remission for past 6 years (thank god). I have not been able to work since 2008 because of being a caregiver. I have an after school job that pays a little, and I was a councimemer for 5 years which paid even less (a monthly stipend). I'm at my witts end and don't know where to turn or what to do. I can't leave him home alone for long periods of time and we're running out of money. I can't seem to get my father in law to understand that we are broke and we need money. I could work from home, scanning documents/pictures for people ... but can't seem to get anyone interested in having that done. We live in a fairly affluent community, but can take care of the yard because we had to sell our truck and have no way to remove debris to the local dump. Every thing has a cost and there are times where it makes more sense to just pack it all in ... What does one do when they have been kicked and are nearly down & out????

Well there is a lot you can do, and i wish it wasn't mostly annoying paperwork but sheesh, if you are nearly down & out, let's get crackin'! Gather up all your past years of tax records, proof of income whatever it is, and get thee to a social worker at the area agency on aging, which you locate by eldercare.gov and entering in your zip code. Your husband may be too young for Social Security, but he's eligible for social security disability if so. If your income is so low, time to apply for what's called long term care medicaid, which could fund home health aides for him so you CAN leave him alone with professional care aides.

Do you own your home? Have you looked into a reverse mortgage? Home equity loan?

Are there ANY other family members who can pitch in, give you a break? So you can work a bit more? Tried selling excess stuff on Facebook 'for sale locally' lists? Easier than craigslist or ebay... Tell us more?

Jane

carols689614 · ‎10-15-2018

Thank you Jane,

My husband is on Disability and has Medicare but not Medicaid. We do have a family member in town (his 88 yr old father, resonably good health with exception of frozen shoulders and congestive heart failure) who is saving his money for an addition on our house so that he can move in with us. I'm terrified I'll become caregiver for two people. Both of his brothers live a little more than an hour away from us and help when they can or when convenient for them. I have a sister in AZ, but we live in NJ. He was diagnosed at age 54, we are both now 58 (I will soon be 59. I have a call into my lawyer so that we can refinance our mortgage and hopefully get some relief there. I'm also looking into reducing our utilities through a government program (LIF....?? I've forgotten the acronym). We sold our truck so we could have some cash on hand, but that didn't last long. One immediate problem I have is how to take care of the yard and get rid of yard waste. We were both outside raking and creating piles to be picked up, but now have no way to deal with them other than to bag them (our town does not pick up leaves at the curb) I am also looking into home improvement grants that will take care of the house ... I hope it will also cover trimming trees around our house. I will try and find a social worker today as you suggested, through Alzheimers Org to see if there is help there ... It's all so depressing. I'm worried that because of the Marketplace, my insurance is awful and that I'm going to get hurt or sick and won't be able to care for him at all! Will the social worker be able to help me sort through all of the Medicare plans for him and insurance plans for me??

Carol

JaneCares · ‎10-15-2018

@carols689614 wrote:
Thank you Jane,
My husband is on Disability and has Medicare but not Medicaid. We do have a family member in town (his 88 yr old father, resonably good health with exception of frozen shoulders and congestive heart failure) who is saving his money for an addition on our house so that he can move in with us. I'm terrified I'll become caregiver for two people. Both of his brothers live a little more than an hour away from us and help when they can or when convenient for them. I have a sister in AZ, but we live in NJ. He was diagnosed at age 54, we are both now 58 (I will soon be 59. I have a call into my lawyer so that we can refinance our mortgage and hopefully get some relief there. I'm also looking into reducing our utilities through a government program (LIF....?? I've forgotten the acronym). We sold our truck so we could have some cash on hand, but that didn't last long. One immediate problem I have is how to take care of the yard and get rid of yard waste. We were both outside raking and creating piles to be picked up, but now have no way to deal with them other than to bag them (our town does not pick up leaves at the curb) I am also looking into home improvement grants that will take care of the house ... I hope it will also cover trimming trees around our house. I will try and find a social worker today as you suggested, through Alzheimers Org to see if there is help there ... It's all so depressing. I'm worried that because of the Marketplace, my insurance is awful and that I'm going to get hurt or sick and won't be able to care for him at all! Will the social worker be able to help me sort through all of the Medicare plans for him and insurance plans for me??
Carol

Hey Carol,

Yes utility assistance is sometimes called LIHEAP, and the sooner you apply the better because it is funded until the money runs out, usually starting Oct. 1. Call the Alzheimer's association, but also the agency that i mentioned via www.eldercare.gov, and try the help finder Jen mentioned. Cast a wide net: call all the agencies you can to find out what you and your husband can get help with. Wait on the second mortgage with your lawyer because you'll have to pay that back. Either or both of you may be eligible for Medicaid. Perhaps focus on that first so you can get help in the home so you can take care of yourself and maybe work a few more hours?

His brothers need to do WAY MORE than they are doing. I've suggested before packing up a person and bringing them to the doorstep of a reluctant relative, knocking, and saying, hey, i need to do a whole bunch of errands and tasks today. I'll pick him up tomorrow. He doesn't like to eat fish! Later! And waving cheerily while getting back in your car. Kinda radical, i know. But desperate times call for desperate measures.

Not sure why you sold your truck, you must have another vehicle?? You might want to join your town's listserv, or the page on facebook that focuses on your town or neighborhood, and ask for help with the leaves: "My husband has early dementia and I have MS. We are in need of someone to pick up our yard debris because we no longer have a truck. Can anyone help us?" Often if you are very specific, you can get help like that. And/or, do you belong to a church or synagogue?

It takes a village to be a caregiver. Martyrdom in isolation is not required.

Can your sister in AZ at least listen to you, and also share whatever is going on in her life? My sister lives 2500 miles away and just hearing her adventures gives me a break from my own drama.

You are broke. APPLY FOR HELP. Call up the agencies you locate. See if someone will make a home visit. If not, get his dad to come stay with him for 3 hours while you go see a social worker. His dad does not need to be your care responsibility. Perhaps he needs to save his money to put an attachment on his other's sons' homes/??

Write more?

Jane

Jen · ‎10-15-2018

@carols689614 wrote:

Thank you Jane,

My husband is on Disability and has Medicare but not Medicaid. We do have a family member in town (his 88 yr old father, resonably good health with exception of frozen shoulders and congestive heart failure) who is saving his money for an addition on our house so that he can move in with us. I'm terrified I'll become caregiver for two people. Both of his brothers live a little more than an hour away from us and help when they can or when convenient for them. I have a sister in AZ, but we live in NJ. He was diagnosed at age 54, we are both now 58 (I will soon be 59. I have a call into my lawyer so that we can refinance our mortgage and hopefully get some relief there. I'm also looking into reducing our utilities through a government program (LIF....?? I've forgotten the acronym). We sold our truck so we could have some cash on hand, but that didn't last long. One immediate problem I have is how to take care of the yard and get rid of yard waste. We were both outside raking and creating piles to be picked up, but now have no way to deal with them other than to bag them (our town does not pick up leaves at the curb) I am also looking into home improvement grants that will take care of the house ... I hope it will also cover trimming trees around our house. I will try and find a social worker today as you suggested, through Alzheimers Org to see if there is help there ... It's all so depressing. I'm worried that because of the Marketplace, my insurance is awful and that I'm going to get hurt or sick and won't be able to care for him at all! Will the social worker be able to help me sort through all of the Medicare plans for him and insurance plans for me??

Carol

Carol,

Here is a new site we launched that may be of help in finding a social worker and other help. Good luck and check back with us soon! https://www.communityresourcefinder.org/?CMP=RDRCT-CSN-CAREGIVING-070518

AARPJen
Caregiving Concierge