Caregiving: Anyone else doing this alone?

Thank you Becky. No, nothing specific needed right now.
Just came across this forum. Having been really surprised how different the reality is compared to impressions given by marketing material, and even by reading the "fine print" in the contract, figured worth sharing the experience. My parents, who were pretty well educated and pretty savvy consumers, truly thought the (non-profit) CCRC to which my mother moved would be "hands off" for my sisters and me. The post-move-in learning curve was steep, with regards to both unusual medical issues and the onset of MCI and its progression into dementia.
Although the CCRC is ranked top in the state, expectations and reality have been quite different. That certainly doesn't mean every place is like that - just recommend that people really research and understand what they're buying into, especially with regards to provision and management of medical care.

My husband has alzheimer's and has had for 6 years. He is alert to what is happening but needs total care. He can feed himself but the food is prepared for him. I promised myself that I would care for him at home as long as he can walk and stand...prefers to stay in his wheelchair most of the day. I have physical therapy for him once a week...but it is hard to do this daily....it is overwhelming to be a caregiver and all that is involved in running a home.
The cost of nursing homes are above our ability...and there is none that would give him the care that I do. I pay a home health aid to shower him once a week.
Many friends and neighbors offer help...but it is difficult for me to ask for what I really need is daily care for him. My Faith is strong...God put me on this journey.

There are options in the US regardless of ability to pay.

What are they….suggestions?
Thank you

I’m no expert, but an attorney who focuses on estate planning and long term care costs can likely provide specific advice. I’ve used one before for an extended family member. Also, a rep from a nursing home can also provide some input.

If a person requires skilled nursing care in a nursing home, (some dementia patients do. It depends on their condition. Memory Care is often in Assisted Living facilities and is not skilled nursing care. The distinction is important.) But if in nursing home, they (Medicaid. Local social services often processes the application) will review applicant for income and assets. The way it works is complicated, but when a spouse lives in the home, there is a provision to let that alone. The goal is to not leave the spouse impoverished. They look at the applicant’s income, but if the spouse needs it, they allow them to keep it, assuming it’s social security. Someone who works with this kind of thing would be able to review your information and provide specific advice. I highly recommend it.

State programs that help pay for qualified applicants for Assisted Living and Memory Care, don’t necessarily follow the same policies to help the spouse remaining in the home. That’s why the nursing home offers more financially, even if you feel you don’t qualify.

Good luck with everything. I know it’s stressful.

I am in contact with an Elderlaw Firm…that is the way to go..
You have been most kind….caregivers are always looking for options..

What date are you in? @ @celia16 is correct depending on the state your in there are services. My son is 19 he had two heart transplants at 2 and 7. The last heart transplant caused three strokes and he now has vascular dementia or neuro cognitive disorder, with behavioral conditions. He is amazing and we just got him reevaluated to see if it’s getting worse. I have been his only caregiver for 19 years. It is hard but you are not alone, my son prefers not having in home care but the do offer it ask your primary of the patient that you need a little help or a break every now and then they can assist you in the right direction, also there are tons of programs that help they just won’t tell you about them so be your own advocate and look up programs to get support. Hugs to you caregivers are a different breed. My husband is a medic and it allows me to stay home with him but now that he is 18 we get government assistance before we did not have help and it was hard going of our income I suggest setting up a trust for financial stuff. ❤️

Thank you! I will look further. I obtained some in home care recently, but my dad is resisting. We need much more, so I’ll look further. We are in NC. I checked with SHIIP. Will check again and with insurance. I do think placement is near. Looking at nursing homes.

I am in North Carolina

What happens if the lifetime care company goes out of business?