It will be 2 years in a few weeks that I lost my mom. She was the strongest person I knew and died from a freak accident after being so freaking careful for the last 35ish years with significant health issues. I'm the youngest, and my family and I live 5 minutes from them, so it was always assumed that I would always take care of everything for them, no matter what I had going on. I spent a lot of years in silent anger and was so bitter at times when it came to my sisters because they could live their lives and not have a care in the world as I did. And after my mom died, that bitterness just went away... I felt so guilty. I clung to my relationship with my sisters, knowing that's all she ever wanted - a close family again.
Anyway, despite all that my mom had going on, she was the caretaker for my dad - she handled their meals and taking their meds, and they were both able to get around and do basic things in the house, except for times when she was ill.
My dad has had PD for 6 years now, and has recently developed dementia, and I think he's close to the end (chokes easily and can't walk). Since my mom died, he has gone downhill - unable to care for himself at all, not able to do the most basic things. In January he started having hallucinations and confusion, which I had hoped it was one of the meds he takes. He went to an SNF for 20 days, got back home, and the hallucinations were worse.
He ended up moving in with my sister and her husband, and it just wasn't working out - he wasn't happy being told what to do, and they weren't happy dealing with being a caretaker for the first time. Dad bounced around from their house to the hospital, and back to SNF, and it's been a complete nightmare.
My dad has been in another SNF covered for 30 days through the VA. He doesn't qualify for Medicaid because of his assets (although we since have paid down a lot of things over the past month to get his balance down), and we've been paying out of pocket for a few weeks now for the SNF. It has drained his account, and now my other sister (the one he didn't live with) and I will have to pay for the rest of the month. The sister he lived with said he could go back to his house 2 weeks ago and then backed out when it was time for him to be discharged... and then decided that he could, and now we're back to - he isn't coming back here. I have kids and don't have a room for my dad to be in, and my other sister is always away for work or a school event for her kids.
I've been on the phone calling the VA, community resources, etc., all week. I had it set up through the VA for an adult day center to start next week, home health, hospital bed, supplies, etc., thinking he was going home with her over the weekend or Monday at the latest, but no, she decided that one of us will need to handle him on our own. It feels like a slap in the face for her to be so callous with me (and my dad) after all the years I did everything with zero help, while I jump when she says jump to help with things at her house. I never asked her to take my dad in; I wanted to start the process of admitting him to long-term care months ago because it's what he needed, but she insisted that he not go to a nursing home.
At this point, I don't know what to do. It is too expensive to continue private pay. The VA has him on a waiting list for a CLC that is 3 hours away. If anyone has any suggestions, I'm desperate. He's being assessed for hospice care on Monday or Tuesday, and I don't know if he will be approved or not, and if he is, will that even speed up the process for the VA to find an alternative placement?
The worst part is that I'm stressing over where to place him when I should be focusing on the heartbreak that is to come. I'm losing my dad, while I still haven't and will probably never recover from the heartbreak of losing my mom. They were/are great parents, and the very best grandparents, and don't deserve this.
Had the Medicaid application been sent ?
Is this an SNF that does not accept Medicaid ? Perhaps enlisting a County social worker from the County Area Agency of Aging can help with placement in a Medicaid pending bed until you get the VA things in place.
You and your sister should not be paying for Dads care .
Hospice will send a nurse to assess once a week and an aide a couple of times a week for a few hours for bathing . FYI , The rest of Dad’s care would be on the family if he’s in one of your homes .
Please get him placed using his money(not yours) and if that runs out he MUST apply for Medicaid ASAP.
He really needs to be a memory care facility now and the VA should be able to help you with that.
Hospice also can help you find the appropriate facility for him.
You make mention that your dad is choking easily which means that he now needs his foods pureed and drinks thickened so he doesn't develop aspiration pneumonia, as that is so common with folks with dementia and is in most cases fatal. So please make sure that that is being done now and where ever he ends up.
You can have the VA order a swallowing test just to verify.
I wish you well in finding the appropriate facility for your dad.
Due to his PD and LBD diagnosis I would double check his "Service Connected Disability %" He may qualify for more services. The VA Social Worker or Patient Advocate can help you with that process.
You have had prolonged and complex issues around care and grieving that are ongoing more than a decade. You need and deserve care yourself. The DSM-5 now recognizes prolonged complex grieving as a diagnosis. This eases in payment for care; please seek a counselor who is a good professional who understands ways to guide you onto different paths of thinking and self care.
My heart goes out to you. Your plate is so very full. I hope that things will ease. You didn't cause these needs and you cannot fix it. Some things simply cannot BE fixed. And it is absolutely normal to feel relief when an ill elder passes; it is a crucible to stand witness to their suffering and a relief to see the end of their own suffering and your need to stand constant witness to it.