Introductions: Are you caring for someone with dementia?

Hi @tunared Thanks for reaching out on this important aspect of caregiving. I am sure others will have ideas and I will continue to think about the changes I made., but I wanted to get back to you quickly to let you know I'm thinking about this.

We, too, have a one-story house. My wife was able to be home for her entire journey, although I fully know that is not possible for all. Her last 14 months were in home hospice, which was a godsend. Here are the adjustments I made that I recall first. I removed all throw rugs. I rearranged our bedroom by pushing our bed against a wall and made room for a hospital bed, even though we didn't need it right away. Our bathroom was full of ssues I never fully resolved. Our shower was a step-in and even its tiny ledge became too big a barrier. Likewise I had to remove and replace the edge piece between our bedroom carpet and the bathroom tile because it was a tiny bit higher than either and it caught her toes, then the wheels on her chair. I added grab bars on either side of the toilet. Perhaps most importantly I bought some of those adhesive stickers for tubs and showers and put them on our bathroom floor to help with slipping, but tended to not cause tripping. I bought a supply of the cheapest washcloths I could find so when they became too stained, I could toss them. I also bought some thin towels for post-bathing so the drying cycle for them was quicker than with our old, heavy towels.

Not sure of your setup, but we have two steps from the house to the garage so I found a wheelchair ramp I could put there. My wife became quite scared when I would lower her down the stairs without it, so I was happy this helped her relax and be more open to going out to our driveway and/or garage for some fresh air.

As silly as this probably sounds, I laid in a big supply of my favorite 'cheat snack'. For me that is peanut butter filled pretzels. I found having those on hand offered me the chance to easily treat myself on those inevitable extra difficult days.

Not financial, but we also attended to the necessary legal papers. POA, medical POA, estate/wills, advance directives, and (I don't know if you have adult children or not) but included our adult children and all of my wife's specialists on her HIPPA forms so I didn't always need to be the informational hub.

I'll keep thinking!

Strength, Courage, & Peace

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Hi @tunared Thanks for reaching out on this important aspect of caregiving. I am sure others will have ideas and I will continue to think about the changes I made., but I wanted to get back to you quickly to let you know I'm thinking about this.

We, too, have a one-story house. My wife was able to be home for her entire journey, although I fully know that is not possible for all. Her last 14 months were in home hospice, which was a godsend. Here are the adjustments I made that I recall first. I removed all throw rugs. I rearranged our bedroom by pushing our bed against a wall and made room for a hospital bed, even though we didn't need it right away. Our bathroom was full of ssues I never fully resolved. Our shower was a step-in and even its tiny ledge became too big a barrier. Likewise I had to remove and replace the edge piece between our bedroom carpet and the bathroom tile because it was a tiny bit higher than either and it caught her toes, then the wheels on her chair. I added grab bars on either side of the toilet. Perhaps most importantly I bought some of those adhesive stickers for tubs and showers and put them on our bathroom floor to help with slipping, but tended to not cause tripping. I bought a supply of the cheapest washcloths I could find so when they became too stained, I could toss them. I also bought some thin towels for post-bathing so the drying cycle for them was quicker than with our old, heavy towels.

Not sure of your setup, but we have two steps from the house to the garage so I found a wheelchair ramp I could put there. My wife became quite scared when I would lower her down the stairs without it, so I was happy this helped her relax and be more open to going out to our driveway and/or garage for some fresh air.

As silly as this probably sounds, I laid in a big supply of my favorite 'cheat snack'. For me that is peanut butter filled pretzels. I found having those on hand offered me the chance to easily treat myself on those inevitable extra difficult days.

Not financial, but we also attended to the necessary legal papers. POA, medical POA, estate/wills, advance directives, and (I don't know if you have adult children or not) but included our adult children and all of my wife's specialists on her HIPPA forms so I didn't always need to be the informational hub.

I'll keep thinking!

Strength, Courage, & Peace

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Scott
Thanks for the ideas. I'll be picking up some washcloths and towels and adding the grab bars. I'll keep the rugs on the floor for the time being (I do have anti-slip material under the rugs). We have been to the lawyer and completed all the paperwork. The snacks are a great idea because I've been drinking to much wine/liqueur when the stresses get too much.
I expect to have quite a journey in front of us, so it helps to have this site to vent/ask for help.
Dan

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We are moving in with our daughter this month - house ready to close. Stress is something else again. Moving by itself is stressful but when you are coping with someone with dementia (and they think they are 'fine') sure can add to need a dark chocolate fix.

One this I did, besides safety railing for the toilets, was added a riser to the toilet, which makes it easier for him to get up and down (my feet no longer touch the ground!). I also got him a lift chair and even with that he has problems getting out of it.

Each day seems to bring something new. And then there are days when everything seems completely normal.

I tried to shield his kids at first but decided that wasn't a good idea. We now can joke about it and they are quick to offer help. A support group is the greatest thing, especially if you can laugh together. For me, that makes getting through the days easier. I also have a best friend who lets me 'vent' - things I wouldn't want to burden the kids with.

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@tunared and @billchitwood This is what I love about this Caregiving community on Connect! The power of "group think" -- or is it "group answer"? I had totally forgotten about the riser for the toilet! Invaluable and I now recall that we went through about four iterations before we found the right one! Luckily I found a nonprofit that accepted used durable medical equipment and provided it free of charge to those who needed stuff. Unfortunately, they didn't make it through the pandemic, but I was so happy to be able to see so much of our equipment reused.

While we didn't have a lift chair, I did find a fully adjustable hospital bed to be invaluable, especially for fighting bed sores and transfers, etc. I still ended up with carpal tunnel in both wrists from all the repetitive lifting, but can't imagine what shape I'd be in without that bed.

Strength, Courage, & Peace

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Bill weighs about 200 pounds and I'm just a little over a hundred - he is 6' and I'm 5'3" - and he is always asking me to pull him up (I don't let the family know I do it as they would freak out - but I am strong).

Our doctor tried to have him use home health care but he kept lying to them and they believed him, so wrote him off as eligible. I tried to convince him that it wasn't for him so much as me - didn't work.

Now I have to remember to dismantle the riser for the new owners.

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Please join me in to this group. I am caring for my husband with early stages of dementia. He is constantly asking the same questions which can be nerve racking. He can still sit in a group and laugh and converse so many do not realize what is happening. He only drives in and around our area where he has lived since childhood. Never any distance. We play bridge and he amazes me how well he can play complicated hands. We exercise almost daily at a YMCA. He does do some yard work. He has started constantly itching his head, but I can see nothing. Wondering if a dematologist is needed to check.

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I am new to this site as well and so far I have learned a lot and taken some helpful advice. It is my husband who has Dementia and he is getting a CT scan soon to compare to a previous scan. This way doctors can see the progression of the disease. It is scary to watch our loved ones going deeper into themselves, changing almost day to day with this disease. His meds are maxed out for Dementia and I have heard from his doctor that Alzheimer’s meds do help with Dementia. And so the diagnosis from the CT scan might be what he needs to start taking the meds for Alzheimer’s. Some great advice is to take “one day at a time.” Stay in the present and try not to project about the future as that will make your burden heavier than what you are carrying now. I find that keeping in touch with others in the same situation brings me comfort and I know I am not alone.
Prayers for you and your wife, and welcome to our group.

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