It's a tale as old as time. The only difference in our story is that we're younger (early 30s) than most people dealing with this stuff.
My 75-year-old FIL was utterly lost after the death of my MIL, but refused to leave the huge rural home on acreage that is rapidly deteriorating due to his inability to maintain it. We live 4 hours away & spent years pleading with him to move closer to us, to no avail. Our area has a milder climate & is extremely popular with retirees. His only other family is my SIL, who lives halfway between our place & his in a home she rents from FIL, but she's not the most reliable. My husband is the dependable one, & has struggled to set boundaries with family in the past.
The situation wasn't great, but then FIL caught COVID. Months later, he was diagnosed with stage IV lung cancer. He managed to conceal just how bad things had gotten from us until we managed to visit. He was surrounded by dog pee and poop, full hoarder conditions, & left his broken recliner only to go to the bathroom and microwave junk food. He wasn't brushing his teeth, bathing, or changing clothes regularly. He developed bed sores.
My husband hastily decided we needed to move his dad & two dogs in with us. I agreed, because I love him and his dad and honestly didn't know any better. My husband works full-time in a demanding job that includes on-call. I'm searching for a job. We have no kids, just 4 pets.
We all had our first big fight over FIL's neglected, un-housebroken, incredibly high-maintenance puppy. Husband and I were incredibly stressed out trying to train & manage her while caring for FIL and his affairs. SIL (a vet tech who can take incredible care of her) was more than willing to take the puppy, but FIL refused. I had to tell my husband it was me or the dog before he finally just told his dad what needed to happen instead of asking. Things are so much better, but it's still too much. My husband has a bad back, I have a mental health condition that I've managed well only by getting enough sleep and reducing stress, our relationship is severely strained, I'm having difficulty having the time and quiet needed for my job search, and my husband is rapidly depleting his PTO and getting buried trying to catch up on projects.
What we initially thought was just severe depression and stubborn old man syndrome, is looking more and more like dementia. In hindsight, he seems to have declined cognitively since his COVID infection. While he has had more short-term memory issues, what's more noticeable are the falls (he'd never fallen before,) extremely poor judgment (after a fall, he just laid in the snow for like an hour before calling elderly neighbors who physically couldn't help him,) shuffling gait, rapid decline in mobility, childlike argumentative refusal to take care of his own hygiene, drastically shakier, less legible handwriting, and occasional incontinence.
While I'm glad that my husband does a great job of helping around the house and handling the real personal things like changing bed sore dressings, I've been doing the bulk of the research and planning ahead. Needless to say, after reading plenty of personal accounts, I'm scared ****less of how much worse things are likely to get.
I've explained all of this to my husband and showed him some posts here detailing just how bad of an idea this is, especially if he does have dementia. I'm worried that this is the beginning of the end of our marriage, and that I might end up in the psych ward. I'm also worried about our inability to properly care for his dad, and that all of our relationships are going to suffer from this experience. At first, my husband was angry when I told him we need to start looking for AL or another arrangement. Now he's asking me to slow down and give him "time to process." I've explained that we don't have time. His dad is rapidly declining and AL have waitlists. $ isn't a primary concern. FIL has substantial savings and VA care.
The father is terminal. There is no reason to lie and pretend he is going to live another 20 years. Doing so means dad won't make plans and arrangements while he is still able to. This will only add to son and DILs stress while they try to help him get the end of life care he needs.
OP is doing an excellent job of trying to get all the balls rolling and is being thwarted by husband and father. She sees the inevitable and it is beyond frustrating for her to try and get everyone on the same page before it becomes a defcon 5 emergency.
Unfortunately this may ruin and damage time OP and son have with dad because of burn out and stress. And if dad does get placed you dont have to feel guilty if you are not visiting him 24/7. Dad placed his mom in a nursing home and never visited. So his fear is the same will happen to him. You don't have to overcompensate because of that and if his dementia progresses daily visits may be to disruptive for him from you both.
Fortunately, showing my husband some of the other posts on this forum and talking more has helped and I'm already feeling like we're more on the same page.
I am so sorry that you are going through this difficult time.
I can tell by your writing that you are a caring person. Your husband sounds like he is compassionate too.
Both of you need a break. Hire outside help to care for dad while you decide what to do for a permanent solution.
You stated that your husband set boundaries with his dad in the past, so he is a sensible man. He’s struggling to sort through his emotions at this time.
You were wise to do research and you realize now that you are in over your heads.
I commend you for having an honest discussion with your husband. If your husband is anything like mine, he won’t act immediately.
Your husband was being honest when he said that he needed a bit of time to process things. Don’t pressure him or he will most likely withdraw. Allow a reasonable amount of time for him to process the facts.
Let it be for now and chances are that he will come around and see that you are correct in your assessment of this situation.
I would feel differently if this situation had been going on for a long time. Then I would say that it is time for action or a more drastic change such as a separation.
Meanwhile, start looking into facilities in your area that will suit his needs. So, you will have the information ready when it is needed. Don’t forget to research hospice providers.
Best wishes to you and your family. Keep us posted on how you are doing.
If FIL's prognosis is <1 year, beware that H's "time to process" might mean his trying to stall it out so that his father doesn't have to move anywhere before he dies.
Sounds like FIL is already beyond AL.
What about a VA facility?
My husband pointed out that FIL is probably scared that we're just going to dump him in a NH, because that's exactly what FIL did to his own mother. We're not planning on doing that at all. Daily visits would obviously still take a lot of our time, but he is dying, and we do genuinely want to spend time with him. We also need our space and privacy back, and his dad needs better care than we can provide.
But people with supposed terminal illnesses can linger a really long time.
My MIL has been dying of "terminal" lung cancer for 3 years now.
I agree about starting the search now and getting dad on a waiting list or lists for placement. But you have to get husband on board and it sounds like he is dragging his feet. Probably from fear knowing his dad is dying and guilt that he can't take care of him in his home.
Maybe you can convince him to start the process by touring a few of the places you have found. That might get him ready for the next step.
Just read your comments below. Yeah it's going to be difficult getting husband on board. Good luck and keep trying to get him to listen to reason. I think touring the places may help alleviate his fear regarding places he's seen that weren't good facilities.
One thing i learned here is to find a place that allows a transition from assisted living to a higher level of care when needed so dad moves to a different part of the facility rather than having to find an entirely new place to move him to if his dementia progresses before he dies.
Your dh is overwhelmed right now because his father is dying and you're adding to his grief and stress by demanding he move out immediately. My children are having a VERY hard time trying to process my recent stage 4 cancer diagnosis, I can tell you that. All they care about right now is my comfort so if my dh was trying to place me somewhere, they'd be having a meltdown. That's not to say your FIL should live with you for the rest of his life. But the rest of his life could be a matter of months. As inconvenient as it is for us sick people to stick around and be burdens to everyone, the body will shut down on God's timetable, not ours bc we'd like life to get back to normal. Your FILs days of normal are long gone now. He doesn't need to "accept" his terminal dx either.....he should live every day thinking he's got 20 years of life ahead of him., why not?
I agree with your dh. Wait till his next set of scans give you a clearer picture of what's going on. You can always hire 24/7 in home aides to properly care for him if necessary. Give dh a chance to breathe right now and get on board with your request in his own time and way. If he cannot do so, then you have other decisions to make I guess.
Good luck
I think many men are used to 'doing', 'taking action' to 'fix things'.
Is your DH like that? I'll bring Dad home.. don't know what else to do.
It's a normal & loving reaction.
But now it time to respond in a more detailed way, with a more sustainable plan.
1. What's Dad's prognosis?
Is there any kind of timeframe? I've seen families do amazing things in the last week.. but others crushed by the needs of 2 weeks. 3-6 months or more needs a proper plan.
2. Depending on above, could Dad stay if a lot more help* was brought in? Or just for now? For a month? A few months?
*Actual nurses, aides or sitters just for companionship, depending on his health needs.
3. When the end is reached on home care, having the next option lined up will ease the stress on everyone.
Eg folk where I live (insured) may keep their LO at home, with hospice services (IF possible/suitable) but many then transfer to a residential hospice bed nearer the end. I don't know if that is available where you live?
We're definitely bringing in professional home health, regardless of how long he stays here or where he ends up. One option we're looking at right now is him buying a small house about 2 minutes away from us that has accessibility features like a walk-in tub and supporting him with daily visits from us and frequent home health. We are incredibly fortunate that money isn't much of a concern. He has more money and assets than time.
There is also a fantastic hospice here, and their facility is wonderful. I wish he had so much more time, but I'm also honestly looking forward to when he's referred to hospice because I know they'll take great care of all of us.
BTW Stage 3 or 4 lung cancer is a death sentance. The oncologist keeps thing upbeat for patients unless they truely ask things like longevity at this stage. Then these doctors turn around and give education to health care and will tell the true story.
I agree with the others. Hubby needs to have a more time to process. The ongoing needs of his father have probably consumed his brain. He might still be in the "I can do this" phase since he is much more "committed" to taking care of his Dad than you and he knows that he could lose his Dad at any time.
How about "at home" care? You could start that now to let go some of the care giving load. You could get it for just a portion of the day or night. That will allow you and your husband to get a more objective look at what his father's condition is while you navigate the wonders of home care services.
Will your husband allow you to start doing the research on centers by yourself? Since your father has stage 4 lung cancer as well as memory loss, it would be helpful to use a referral service. You might want to look at smaller homes as well as the larger centers. Be up front with everyone and say that you are only doing preliminary research. The possibilities and alternatives could blow your mind. Don't be pushed into any timeline. If your FIL is still ambulatory, you will have more options than if he was not.
When your hubby is ready, you could then review what you saw, and revisit with your husband. By then, there might be even more options.
When my sister came home and saw my mother, she started talking to her friends, doing research, and then started talking care homes and feeces on the wall and floor, to me. I want to caution you against this catastrophic thinking. My Mom was able to walk after hip surgery (and 2 pins), due to the fact that I believed she could walk again and worked with her to walk. The shuffling gait and rapid decline in mobility can be somewhat reversed with PT and exercise. The refusal to take care of his own hygiene could be because he no longer can stand and it is difficult to walk. It also can be because he thinks he doesn't smell or many other reasons. My Mom is over 100, and we still do exercises, although fewer of them. I tell her it is so she can get on and off the toilet by herself.
Is he going to the VA center for his stage 4 lung cancer? What do they suggest to help him with the rest of his life?
You are in your 30s. I don't know what your work situation is like. I would use this time and this situation as a learning opportunity. This time could be a toe dip into your future with the healthcare industry.
Much of our time over the past few weeks has been invested in transferring his VA care and getting reassessments of his service connected disability rating and means. He was exposed to Agent Orange in Thailand during Vietnam and should qualify for a 100% rating thanks to the PACT act. He's finally going to see his new VA PCP on Monday, and according to the LCSW he should be able to get home health, respite and other support with the doctor's orders.
That is awesome about your mom! I hope she stays as healthy and happy as can be.