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.
Some men can just not deal with what they need to do for a parent. If my husband is wishy washy over something, I make the decision.
I was a ‘hands on’ caregiver for my mom in my home. Caregiving is physically and emotionally draining. You are wise to hire additional help.
Obviously, you care about your father in law or you wouldn’t have posted a question on a caregiver support group forum.
It’s natural to be concerned about your husband’s back issues. Your mental health is equally as important.
You do not have to explain or defend why you feel as you do. You are the only person that knows what is going on in your life on a daily basis. Everyone else is just speculating.
You are smart to plan for your father in law’s upcoming care. Of course, you have to consider everyone in your planning.
Too many times caregivers feel invisible next to the person they are caring for. You and your husband are equally as important. I didn’t find my true self worth until I sought out therapy.
Take comfort in knowing that you are doing the best that you can. No one is ever prepared for these challenging situations.
Wishing your family all the best.
I can't help but notice that people who have actually cared for a loved one in their home are far more understanding... not just here but IRL. It's easy to judge and underestimate how hard this is until you've actually done it. I also didn't have a clue until we were actually living it.
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.
your FIL has stage IV cancer and dementia which may or not be cancer related. If he needs placement they can help you and they can also offer resources should you wish to keep him in your home.
is your FIL a Veteran? He may qualify for home health aide’s up to a certain number depending on his income.
You might also want to see if he qualifies for Medicaid, their is help and placement available also depending upon income.
start now because anything involving the Government will take time
I totally hear you about starting these processes now! That's why I was so concerned about my husband "dragging feet" on this stuff. We are already much more on the same page, in part because he's seeing how long this stuff takes. Time is our most precious commodity now, and we can't afford to waste it. The government/VA is still going to move at a snail's pace, though, so we have to be as proactive as possible.
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.
It sounds like your FIL may have dementia (3 of my elders did). FIL desperately needs help everyday. Who is handling his prescriptions? You may want to start palliative care to monitor him and help with decisions. They will tell you when hospice is needed.
Some agency caregivers will work half days. I do not know how I would have survived our 3 elders without in home care. I would highly suggest a cleaning company to start with a deep clean and then a schedule for weekly work.
Cut back on your visits. I was not a daily caregiver but did a mountain of things online. I had meals & groceries delivered, prescriptions delivered and household items from Amazon. Bills can be paid online as you well know. Set up all bills paperless. I switched my mom's insurance so she could have a visiting physician. She also used a mobile lab company and one for x-rays.
You and your husband are going to burn out quickly at this pace. Please set up some help today!
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.
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.
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 would continue to look at places, narrow it down to 1 or 2 and get on the waiting lists. As mentioned already, you can say no and stay on the waiting list.
Is he currently getting cancer treatment? At some point, that may or may not work and perhaps he will come to a point where treatment will no longer be an option. Or he may not want to continue with treatment if it is not helping. And then it could be time, or even at an earlier time, for a hospice evaluation. Even if he "only" has a year left, it will be a VERY long year if he is in your house and continuing to decline (which of course he will).
I guess you have a lot of hard work and pushing to do. Sorry for your problems.
You need now to lay down the law and the boundaries for YOURSELF. You need to tell your husband that this is a deal breaker for you. That his father will be placed and the animals rehomed within a month or you will be separating from him legally, leaving, doing your own job and your own apartment. Tell him that you love him, and he can judge you however harshly he would like, and you will assist him some few times when you have time, but that you are unwilling to live amidst this mess.
Then the ball is in his court.
Be certain you have sole control of one half your assets before you begin to lay down laws, or your husband may well empty your accounts; it has happened before.
You can't make decisions for others. You can only make them for yourself. The decision is now yours. I wish you good luck, and whatever you choose at least you will be able to say it was your own choice.
You can show your hubby this, and tell him I am an RN, and I would have been gone yesterday. That I recognize he is a good guy, but this isn't how I would be able to live, due to my own limitations.
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.
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.
If you can get this far, you will have an end in view, and time for things to settle down. If DH won’t accept the logic of this, he is not very bright, not very trustworthy, and not very nice. So the end of the marriage may be closer than he thinks. Make sure he realises that then HE will be the one doing all the care.
While he thinks it over, take a holiday yourself!
I'm concerned about his fairly rapid progression of dementia symptoms, and I'm not sure my husband fully understands what taking care of someone with full-blown dementia is actually like. I've explained to him that there's a huge advantage in moving his dad to a good place NOW, while he's still mostly competent and a candidate for regular assisted living.
Husband has admitted that his judgment is clouded by emotion. He's still racked with guilt over his mother's death. We've been together for nearly 14 years through thick and thin. One of the only other potentially marriage-ending conflicts we've had was when his mom fell seriously ill, and my husband completely failed to put up boundaries and protect me when his volatile, narcissistic sister tried to physically attack me. He let her stay in OUR home after that while we fled to a hotel (clearly this one still hurts.) So his difficulty standing up to his own family and getting his priorities straight have been a problem in the past. I know FIL will likely be very resistant, but he is clearly incapable of making good decisions. I think hubby knows what needs to happen but is content to keep kicking the can down the road as long as possible. I know we have far too much to do and not enough time.
Also - FIL is in denial about his prognosis. He thinks he has years or more, and this is a temporary stay until he gets better, then he's going to go back home, change nothing and live independently. In reality, his lung cancer prognosis is <1 year. He hasn't been assessed for dementia yet.
My husband has been very hesitant to have any discussions with him about his end-of-life care... I've been encouraging him to have open and honest discussions with his dad about his wishes and options like hospice and MAID, but he's worried about demoralizing him.
All of this really sucks because our house is small-ish. FIL's hearing is still sharp so we have to whisper our discussions, which we barely have time for and are 99.999% about his dad. I cry in the car or on walks now. I miss our bedroom, which we moved out of so he could have the more accessible master with en suite.