Early On-set sadness

@Momx3 Hello! Yes, we do have similar paths. It's a horrible way to spend your "golden years." For me, there have been a lot of tears, anger, fear, exhaustion, and finally my own illness. I utilized technology as much as possible to help manage the load, but it eventually became too overwhelming. I was able to switch to a work-from-home job, which helped somewhat. But, ultimately, the demands of his care required my full-time attention. The kicker was that I had to work, so we had insurance. I was dying, I had lost so much weight, and I never felt right, and I fell asleep at the drop of a hat. I ended up in the hospital, and I knew I had to call it; it was time to move him to long-term care. I researched and spent hours on the phone trying to get him situated, thinking I had finally found a place, only to be told at the last minute that they couldn't take him. Medicaid works differently in each State. It seems deliberately laborious and confusing, and you'll need to be prepared to divulge every possible facet of your life so it can be scrutinized and judged down to the penny how you've managed your affairs. We are not rich, we have managed to live a satisfying life, raising a family and participating in our communities the way most of us do. We followed the rules and did our best to make the world a better place. It is soul-crushing to get to the end and get slammed with this unbelievably complicated disease, and managing all the challenges it unloads on families.

The worst part is that, sadly, there is really nothing that tackles this condition head-on. I actually left this forum because I was frustrated with its approach. There isn't real help for folks trying to deal with this disease in real life; everything is a referral to another non-profit or government agency, which are already overwhelmed, and you'll jump through a ton of hoops only to be told Sorry, we can't place him. Of course, we need to uncover a cure, but in this moment, we have 100s of thousands of people who are trying to deal with this devastating disease all on their own, through trial and error. A strategy might work for a while, but it becomes ineffective as the disease progresses.

We did Daycare for a while; it was nice for DH, but a lot of challenges for me in terms of time management. It's like trying to get your kids out the door to school while you also work full-time. Except that this is not a child, but a full-grown man of 220+ who can't dress himself, shave, or understand where he's going. He finally got so difficult at the daycare that they could no longer keep him. I was back to square one.

One night, he fell out of bed, something he'd done many times. I had gotten a bed rail online, and that helped, but he fell, and this time, he couldn't get up. We tried everything, and finally I had to call 911. They took him to the hospital, and they refused to admit him and told me to take him home. I said, "This is going to keep happening. What do I do then? I can't keep calling 911 and paying ER fees. That's not a plan." They offered no assistance of consequence, well-meaning and compassionate, but we all knew there was no solution. I tried to get him transferred to a nursing home until I figure this out, and the nursing home would not take him. I got on the phone with one of the facilities I had toured, and I told the administrator I'm bringing him there. They began to go on about procedures and transfers and costs, and I interrupted them and said, "My husband needs specialized care that I can no longer provide. We are in the hospital; they won't admit him here, so by hook or crook, he will be cared for properly. So get ready because we're coming."

They took him. Through various other machinations, he remains there.

We remain in a holding pattern during this phase. It's not financially feasible, but I'm managing it on a month-to-month basis. It's not a perfect situation, and it is not what a loving husband and father deserves when he reaches the most difficult time of his life, but we're making it work until it doesn't. Then we'll punt again.

While I think the idea behind this organization is a good one, it is not a resource that will help you manage your real-life challenges, including costs, equipment, access to affordable care, relief for the caretaker, medications, or medical equipment needed as the patient navigates various changes. There are good local social workers out there; use them. They are a valuable touchpoint for the challenges you'll face along the way. There are little things that can help, such as getting him on Social Security/Disability and Medicare, if you haven't already. Meals on Wheels is available free of charge in our community, with no additional paperwork required. It's there for the asking. Your community (Mayor's office, City officials, etc.) might have advocates who work with elements of these challenges and can often connect you with initiatives they know about that the rest of the public doesn't, because of the whole information overload we all have in our lives now.

I know this is cynical, but I want to prepare you for the road ahead so you're not starting from ground zero. If you can afford it, an Elder Attorney can help you understand how to prepare for long-term care and potentially qualify for Medicaid, if it's still available. Lean on your loved ones, adult children, sisters, brothers, and close friends - shore up your support system. It is impossible to do all this alone. When my DH was finally being cared for by professionals, it took three healthcare professionals every day to help him exist. Many factors are at play, but the truth is that it will ultimately fall on you, and you must be prepared to advocate for him and yourself every step of the way, and understand that you don't have to know the answer.

Take good care and I hope you can find solutions that can make this last journey with your husband better than what I have experienced.

hugs - ChaCha