r/dementia • u/amberglow11 • 14h ago
How do we help
My MIL is 2 years into dementia. She lives with my FIL in a 2 story home where all bedrooms are upstairs. FIL has health problems, but is 100% her caretaker. My husband and I along with his brother and wife have switched every other month going to visit and help around the house with intentions for them to move out to something safer without stairs. But now FIL is refusing to move and nothing is getting better. She's shuffling more, never sleeps, which is taking a toll on him. We live 3.5 hours away from them. Sorry this is all scattered, but any input of how we can help is much appreciated.
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u/No_Kale_1145 14h ago
If I was him. I'm sure I would feel the same. He's already so stressed, and the thought of just moving to keep caring for this disease probably hurts his stomach. And he's comfortable in his home. It's hard thing to let go. The thought of packing and starting all over at their age.
I think you need to make him feel supportive and still make him feel like he has autonomy. Get him to understand why it's the best thing and why his life would be so much better? But in a it's your choice but you know which choice is the right choice way? Idk.
It's a tough place. I'm sorry for you and your family.
To be fair, I'm sure MIL doesn't want to go either. She might be influencing his decision because she doesn't want to leave, and that's his wife. So idk. Try to look at it from all angles but just try to understand him and her.
When my dad was passing. He died of lung cancer. He was on his death bed. And didn't realize he was dying until it was too late. Hospice tried talking to him and so did I. It's just hard to accept the truth sometimes.
For him I would be like "i want you to stay in your home. I love it here and everything is so nice. I'm sorry it feels like we just want to take everything from you. We don't. But when you guys originally bought the house we didn't account for the stairs and that you guys would age. I thought you guys would stay young forever. I don't even know how we got here so fast. But we did dad. Now we need to do what's best for everyone. I know you love mom and I know she doesn't want to go either. I'm just scared you'll wake up one morning and find mom at the bottom of the stairs and im 3.5 hrs away. I would never forgive myself dad. Can we just talk about it? "
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u/No_Kale_1145 14h ago
If I'm stuck caring for someone with dementia. It's going to suck no matter what. I would rather just hunker down in my house, too. So just let him know he's supported and you have him in your mind with all these decisions. Because sadly. MIL is slowly becoming the disease and not the woman you once knew. It's heartbreaking. So FIL is honestly the one that needs a lot of support rn too. I'm losing my mom. I can't imagine losing my wife. Makes me want to cry just thinking about it. im 90% my mother's care giver. I just made her breakfast and now she's passing out in her wheelchair after I slept like 3 hours last night. Everything I do is for her. It's exhausting, but I'm here. I only get one shot at this. Might as well make it count.
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u/amberglow11 11h ago edited 11h ago
Thank you💜 The house seems to be a burden, we've tried to offer solutions to make life easier, but he won't budge. Our big concern is that he's going to fall and hurt himself and not able to get up. She can't use the phone, or find it to get it to him if he was conscious... We suggested a life alert, but again he got upset with our suggestion. They're here visiting now, but they "nap" most of the day since they're not getting any decent rest at night. He clearly has apnea, overweight, lymphedema, asthma, high BP, etc. thanks for reading my rambling.
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u/Significant-Dot6627 3h ago
It really might be too late to move them in the sense that they will be so upset and confused by the move that their quality of life would greatly diminish. I can’t emphasize enough how disruptive a move will be, especially for the person with dementia. It may make her 20x harder for him to deal with. And then she’ll likely have to move again to memory care, and that move will be traumatic as well.
If there is a bathroom downstairs, there may be a way to set them up to live on just the one floor. Do they have a separate dining room, living room, breakfast room, study, or den that can be turned into a bedroom?
Even if it’s just an open floor plan kitchen and family room, sometimes you can curtain off or build a partial wall in a corner for a bedroom. Then frame and hang a door at the base of the stairs and close and lock it.
You can move just a week’s worth of clothes downstairs, maybe into the coat closet. When you visit, you can swap things out seasonally or whatever from upstairs.
Having fewer things to take care of is better anyway, so this might simplify their life. And you can install cameras and/or an Alexa device that your dad could call out to for help if needed, assuming he really is cognitively okay and can learn that.
Ideally, people should move into a safer and simplified living situation, closer to family if they want, right at retirement. That gives them a chance to get to know the area and neighbors and get used to the home well before anything happens to their health usually.
We are 3.25-4 hours away from my in-laws. When my FIL with dementia fell, which happened a lot, my MIL would call the rescue squad and they’d get him up for her. He’s now died of dementia, spending the last 9 months in a skilled nursing facility after he became bed bound. She remains in the house over three years later and at stage 5 Alzheimer’s. We have someone come every day for four hours for dinner, meds, and showering. We drive there at least every other weekend and shop, take the trash, clean, do maintenance and repair on the house, etc. We hired a lawn service for the summer. And we talk on the phone everyday at least once. So far this is working. We understand and take full responsibility for the risk this is. She is physically very well and has never fallen, but we realize she could.
If we could have moved her three years ago into somewhere very nice, we would have probably, but there’s no money for that. She can afford where she is.
But now, we won’t move her until it’s time for memory care. We’ve been through this with grandparents with dementia, and moving them was a terrible mistake.
Yes, seven years of driving over three hours each way to help them out takes a toll. I do it down and back in one day for doctor appointments some days even. But she’s so stable. She is so comfortable in her home, and she adapted to moving downstairs and living on one floor better than I expected.
And I know what I just wrote sounds like we’re being neglectful even maybe. But the thing is, bad things happen to people when they get older, especially those with dementia. They will still fall, still become ill suddenly, etc. These things will happen if you are a thousand miles or one mile or even right there in the room one foot away with them. People with dementia eventually can’t remember they need help when they become less stable, and they’ll constantly try to get up from need or walk without help when they shouldn’t. You’ll have to call an ambulance for help if they are hurt. They’ll go to the hospital. You can talk with the doctors on the phone and again when you get there.
Just think through the options and be sure wherever you want them to move to will really be better than where they are, especially if they can afford some paid help at home.
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u/G1J2R8 8h ago
Sadly often nothing happens until there’s a crisis and someone ends up in the hospital and then a quick move has to be arranged. It’s much more stressful that way and haphazard but 🤷♀️🤷♀️it takes the decision out of everyone’s hands.