My husband is 69 was diagnosed with moderate stage Alzheimer's 2 yrs ago. I am the only caregiver, I still work full time and due to my own medical condition, leaving my job to take care of my husband is not an option. Currently working from home but will be back working in the office in January. My husband can't be left alone anymore, he can't prepare his food, I do everything for him as far as hygiene is concerned. He can still walk around the house and up and down stairs. I started to notice a few incontinence accidents here and there that he is trying to hide from me. We cannot afford assisted living facility or memory care. Adult daycares I visited have limited hours for day care. I am at a loss on what to do when I get back to work after the New Years.
Your best course might be to research and choose an AL that you feel most comfortable with and get your husband settled sooner than later, which will make the transition better. Many AL also have Memory Care sections.
Next, research and learn everything you can about Medicaid, your rights as a spouse and all the financial and legal issues. Go directly to your state's Medicaid office, get an appointment with a case worker and get the facts. Don’t rely on "he said, she said" info from non-official sources.
Then, in 2 years get him qualified for Medicaid when HIS resources run down, DO NOT put your own financial future in jeopardy. Medicaid is designed to help the individual while protecting spouses and dependents. The goal is to limit the number of people who need it!
Good luck, please keep us updated.
1. Talk to a certified elder care attorney. You can find one near you at this site:
https://www.naela.org/. They can explain the community spouse clause and assist you in navigating the medicaid paperwork. Be prepared to come up with marriage birth and death certificates as well as rent/mortgage receipts, deeds and utility bills for a 3-5 look back. If you don't have receipts you can get a written statement from the landlord, bank and utility companies that are involved.
2. There are some horrible nursing homes and MC facilities out.... just like there are some horrible people. That doesn't mean every person is bad and it doesn't mean every facility is bad. You just have to spend time doing your research and homework. I personally feel that the care in non-profits (which are becoming few and far between) have a slight better care ratio than for profit companies but there are some great for profit facilities out there.
I worked for years at a government run facility. Ugliest building you ever saw but .... we had a great staff to patient ratio because very few people willingly left government employment. We had so many activities that other facilites (pre covid) would send some of their residents to participate. I had families in my office complaining that their Mom could not fit their visits in on her calendar because she went to so many activities. Our Admin kept everyone on their toes so care was good. We had a waiting list of private pay people who wanted to come in for respite care. When that facility was sold I moved on to a not for profit that my Mom had been prior to her death. Hands on Admin and a fabulous activities director kept that one at top notch level also.
3. Don't be mesmerized by the glitzy lobbies, grand pianos and smooth marketing talk. How do the residents and staff (their the one giving the day to day care) react with each other? Do they smile at each other, ask how each other are feeling.
4. Check with friends, religious organizations, senior care organizations etc for recommendations and experiences. Make sure the facilties you like will accept or convert a bed to Medicaid. Make at least three visits to facilities you like; two of them should be unannounced. Try to make one visit during lunchtime. Get a copy of the week's menu as well as the activities schedule for the month. Granted.... visits are a bit more difficult during covid as all facilities need to protect both staff and residents. Also be aware that almost every facility is short staffed (along with every other business) these days so you will have to give them a little lenience.
5. Stay on the forum and keep us updated on how things are progressing
6. Be gentle and kind to yourself
Hugs!!!
It is time for incontinence underwear. I would just replace all of his old underwear with them and not make a big deal about it. Much easier then cleaning messes.
I have had 3 close family members in facilities and I can tell you that there are some lovely places, with caring staff. You just have to do your homework and know that you can move him if needed.
You will be his advocate and voice and that will ensure that he is being cared for.
Personally, I think that non-profit, religious based facilities offer better care but, my grannie was in a for profit NH and we couldn't have been more pleased with the loving care she received. It just happened that it was the 1st Medicaid bed available and it was a blessing.
It sounds like your husband is beyond AL and needs MC or higher. A needs assessment will help you figure this out and your local area on aging can guide you to get that done and direct you to all the resources you need.
I really want to reiterate that not all facilities are awful. You will find one that gives him the care he needs and gives him a safe, contented, caring environment.
They will accept him. I urge you to not do Assisted Living and do Memory Care. Assisted Living generally does not have locked units so in theory he could walk out. Obviously if they see him they could try stopping him but if they do not see him leave it could be deadly for him.
A little help, he may qualify for Hospice they would provide a nurse that would come 1 time a week, a CNA that would come at least 2 times a week, as well as supplies and equipment that you need.
If the Day care could work and if they pick up and drop off you could get a caregiver that would meet him in the afternoon and then remain with him until you get home.
A caregiver through an agency or one you hire privately. Hired privately would be less expensive but there is the paperwork that you would have to do. (taxes, and all that good legal stuff)
Another option IF your employer would allow you to Work from Home a few days a week that might help out a bit with eliminating the expense of caregivers BUT working while caring for someone is or can be a monumental task.
A friend's best advice (having been a caregiver to her Mom) during my first stint doing this was "Think about your decisions. Make the best choice for you and the person you're caring for, which you will not regret in the days to come. Accept it. Move forward."
Keep reading the postings on this site, you won't feel so alone, stranded, and thinking everything is so weird right now. Nope, there's a big group here, we're dealing as best as we can right now with caregiving.
Good luck!