I cared for my mother (dementia) until she passed last year. I am still caring for my dad (Parkinson's) and my husband (dementia). I am past the breaking point. I feel trapped. My husband's SS pays our monthly mortgage and my dad pays our bills. If I put my husband in a nursing home, my dad and I will be without a place to live. My husband is growing increasingly difficult and doing things that frustrate me beyond words. This morning I found that he had taken a knife to one of our night-stands. I asked him what happened and he said, "I had to get something off of it." Then, as I was using the bathroom sink, I noticed it was stopped up - he has stuffed food and paper down the drain and in the overflow hole. I could go on and on, but what's the point? I'm dealing with an irrational mind and I need advice. Thank you for listening......
I called Social Services where I live and a social worker helped me understand that certain assets would be used first to pay for his care. Example-our whole life insurance and a small piece of land that is part of our home (back yard area we bought after building our home).
The social worker said they have a way of using part of his money to assist with household expenses. The 2nd thing I have done recently was to ask for help from my doctor (thru Medicare) to care for my husband as the disease has progressed. They sent a nurse 3 times, an aide 2x a week for 3 weeks, and a therapist who helped us both. I don't qualify again for this service until my assets are liquidated - or I can pay for them from the assets.
I have used part of the assets to complete handicap areas in our homes along with repairs to the home. What I write now is very personal to me. Many might have negative responses to this - so if you are one of them - please refrain from raining on my parade.
Faith is something one cannot inherit or borrow. You own it for yourself. I have grown close to my Heavenly Father during this journey and I realize I cannot do this in my own strength. Knowing that He will walk with me through these tough days ahead is very comforting.
The therapist suggested I find friends who can be helpful as my husband and I journey through this valley. I have found support through Aging Care, there is an app for AZ, there are many groups you can call with prayer requests, etc. I have three friends I can talk to on the phone and they do come by occasionally to visit.
The most important thing is to be safe. I have safety locks ready to put on drawers and cabinets, I have removed firearms and anything else that I feel could be a threat. I have alarms on the doors, motion lights for the bedroom and bath. I work closely with our PC doctor and there is medication that can be prescribed to calm patients with. I also have a standing prescription for myself should I need to take to calm myself down.
Cross your arms (like an X) over your chest. Squeeze your hands on your arms, and picture something soft and cuddly. Take in a deep breath, hold it in, then slowly release the air. Smile. That's all of us giving you hugs. Stay safe, and make those calls.
I do hope (and usually I think it’s true) that many people just don’t like the religious comments (orders?) along the lines of ‘the Bible says that you have an obligation’…. ‘Faith will solve all your problems’…. 'I promise you' ... 'I guarantee'.... Etc etc.
No-one with any sense would condemn you for taking personal comfort in a belief that helps and does not harm. Very best wishes, Margaret
You know already that the assets like the land, insurance policies, and anything else will have to be spent to pay for your husband's care.
Only half of their value. You are entitled to half the proceeds from the sale of your home and the parcel of land the two of you own. You will be able to keep half the value of any asset that you and your husband own jointly. Medicaid will also have to leave you a portion of your husband's social security.
You have options. The only choice is NOT single-handedly do all the care for two people with varying types of dementia 24-hours a day until it kills you, or else you'll be homeless. You have another choice.
Downsize and move into a senior community (some are 55 and older) and they base the rent paid every month on a person's income. Many of these places also include the utilities with the rent.
Check out a few places for yourself. You deserve to have some kind of a life that isn't just the drudgery of caregiving.
Medicaid has a spousal impoverishment clause that will allow you to remain in your home.
Consult a certified eldercare attorney asap.
What would you call it if not drudgery? Why don't you enlighten us all with your extraordinary gift for vocabulary and tell us what you would call being solely responsible for two adult people with dementia.
It is drudgery. Day in and day out. Drudgery.
I don't know how long you've been a caregiver or what kinds of care situations you've had experience with.
I was an in-home caregiver for almost 25 years and am currently the sole one to my mother who was a not a nice person long before she became elderly.
So, I'm going to go ahead and say that with my level of caregiving experience if I call it drudgery, then that's what it is.
Have a nice day.
I would say my hat's off to you, but honestly, my heart aches for you. We literally give up our lives to care for those we love. Before my Mother passed, I was changing her dirty - and I do mean dirty - diapers 7 or 8 times a day. I was so broken when she died, that I just fell on my knees beside her bed and stayed there until the EMT's took her. What a way to live......
Thank you for commenting. 🤍
The biggest fear I had when my parents 1st entered independent living (IL) was that dad would need SNC and mom would be left destitute. They moved to assisted living (AL) because of dad's falls. At 91 he had medical issues pop up on top of his dementias. We got him on hospice but a few weeks later he was too weak to stay in AL and off to SN he went. However, after getting dad on medicaid it was found mom would have enough money to continue to live in AL - actually today she just moved back to IL.
So if you need to get him into SNC but make sure to call 911 if he becomes abusive. You need to take care of yourself, because if you don't take care of yourself you won't be any good to your dad. In the short term see what resources are available to your husband and father for some in-home assistance.
I pray you are blessed with peace, grace and love.
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