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Heartland65

My DH was diagnosed with dementia several years ago. The doctor said that his was triggered by a TBI he received due to a car accident he had in the early 70's. He crushed in the front left side of his skull. At first it wasn't bad but now it has progressed. An MRI done five years ago showed that approximately 1/3 of the left side of his brain was gone due to brain atrophy. Now he has reached the point where he can't do much for himself. He has forgotten how to use the microwave and he cannot cook. He can't do anything to help me around the house. He falls frequently. Last week he was trying to dress himself, but he kept trying to put both socks on the same foot. I even tried putting my hand on the leg that the sock needed to go on, but he couldn't understand. I had to put the sock on for him. I have also noticed aggression. He frequently fights in his sleep; he has even hit me a couple of times in his sleep. He does not remember doing this. This is so frustrating. He had always been very active in fishing and hunting but now he requires a walker to get around. He frequently forgets when he has eaten and will get mad when I tell him that he just ate. I am looking for resources for both of us. He is unable to get into the bathtub because of his mobility issues and I cannot get him into the tub myself, so now I'm resorted to giving him sponge baths. I will not put him into a nursing home because the one's around here are horrible and very expensive. We just can't afford it and it would make me feel like I have failed him as a wife. But when all is said and done, I do need help with him. Any advice would be helpful. Thank you for letting me vent.

Kibbee

DH has gone through a similar progression of cognitive and neurological decline, as a downstream side effect of surgery, radiation and chemotherapy to treat a malignant brain tumor in 1999. His cognitive decline began relatively quickly after treatment completion and presented as deficits in executive function, such as issues with problem solving, planning, task organization, etc. Neurological decline began in 2014 with left sided weakness. Through 2020 he was able to walk using a cane, but began to experience falls. Falls increased greatly in 2021, to almost every day and sometimes multiple falls in a day. Today he can no longer walk and uses a wheelchair full time.

I’m still taking care of him at home and as of right now, I see no reason to stop doing so. Some steps I took to accommodate his needs: moved him to the first floor bedroom, added a wheelchair ramp to our house, bought an old but serviceable wheelchair van, and worked with his neurologist to have orders placed so that Medicare would cover the cost of a Hoyer lift and a hospital bed. Something I wish I could do: modify the bathroom to be wheelchair accessible with a roll-shower. Unfortunately we just don’t have the square footage to make this happen. I’m keeping him clean though. Vital parts wash-ups happen at every underwear change. I put him in the wheelchair and we do upper body and head washes, plus beard trims, in the kitchen. Foot care is also done while he’s in the wheelchair, via a “spa” footsoak and nail trim.

Anyway, I’m making it work so I know it can be done. I look at it as a just series of problems to be solved. There are many tools and gadgets that are made to assist in the care of a person who is bed or wheelchair bound. And finally, I’ve learned so much from the many wise people in this group.

ImMaggieMae

I’m also taking care of my DH at home and plan to continue doing so. My DH is late stage 6, maybe early 7.
Some things that have helped is renting a hospital bed for which Medicare has finally taken over the payments. My husband can no longer climb the stairs to our upstairs bedroom. The hospital bed is necessary because of acid reflux and coughing, some of which is probably due to swallowing saliva. I purchased a couple of walkers and a transport device to get him to medical appointments when there is a longer distance than he can manage with the walker. He has become very wobbly on his feet in the past week or so.

I use home tests regularly for UTI’s and then take samples to our nearby urgent care if positive. The AZO brand test strips has been accurate so far. They come 3 to a package and are inexpensive. I get them on Amazon but I understand some pharmacies carry them as well.

He can’t manage showers on his own but will take showers with me. I had a couple grab bars installed in the shower and one in the bathroom and one just outside the bathroom door. Much of the time we do sponge baths or partial baths. I usually do this when he’s sitting on the toilet. Private parts are cleaned well after each bathroom use. He is doubly incontinent, so we go through lots of disposable wet wipes, some large and some regular size. Most are 99% water. I took the advice of one of our other members, ButterflyWings, and clean whatever skin is showing and accessible, legs, arms, etc. This works well for us.

We use a slip sheet on the bed to help position him. But with increasing difficulty walking, I think we will soon need some type of lift. Kibbee, I’m not familiar with hover lift. Is it easy to use? Can one person manage it? My sister lives here with us and helps with watching him but has a bad knee and can’t really handle any lifting. Is the lift easy to use?

Would it be helpful to start a group for those of us caring for LO’s at home?

Arrowhead

First off, placing him in in a nursing home or memory care would not make you a failure as a wife. If you could afford it, in the long run it would be better for both of you. He would get better care and you would not wear yourself out. However, only you can decide your best course of action. I hope you find something.

jsps139_

https://alzconnected.org/discussion/comment/211999#Comment_211999

I think it would be very helpful to start a group for caregivers wanting to care for their LO at home until the end. I hope and pray I will be able to do that too.

Kibbee

@ImMaggieMae The Hoyer Lift is the #1 tool that makes it possible to take care of DH and keep him at home. I find it easy to use and move around, although some caregivers have reported finding it a bit challenging. Basically it is a hoist on a movable base. The base supports a hydraulic lift boom that can be raised and lowered. The boom has hooks on it. To lift DH I use a lifting sling, made of a slippery mesh and with loops at the corners. I help DH roll onto his side and then place the sling under him. The loops on the sling then attach to the hooks on the boom. I crank up the boom to raise DH off the bed, then roll the lift to his recliner or wheelchair, and lower him into it. The sling stays under him in the recliner/wheelchair and when I need to move him back to the bed I just re-hook him up, crank the boom to lift him and take him back to bed.

The other great thing about the lift is that the boom can be lowered enough that I can lift DH off the floor. He’s only fallen to the floor a couple times since we got the Hoyer, but oh my…such an easy process compared to what I went through helping him up off the floor before. That was really physically hard and also very upsetting and stressful.

With an order placed by a physician, Medicare will cover the cost of the lift although there may be a small co-pay for a certain number of months.

For more info just Google Hoyer Lift, and watch videos of one in use. Please note - videos may show the lift being operated by a two person team, because in a facility setting using a Hoyer Lift may be designated as a “two person assist”. But in reality it’s not that difficult to operate. I routinely operate it on my own, as does our caregiver when he is here with DH.

ImMaggieMae

https://alzconnected.org/discussion/comment/212015#Comment_212015

Kibbee, thank you SO much for your explanation. I will go look up some videos. I hadn’t considered that it would even be a possibility for one person to operate one. One quick question that may be answered when I see the video. Would it be possible to use one to transfer a person to a toilet?

https://alzconnected.org/discussion/comment/212011#Comment_212011

I’ll start a group as soon as I have a few free minutes. Any suggestions for names?

Balin

I will be taking care of my LW to the end because we have no money for anything else. She is in an early stage and I haven’t really accepted the whole thing yet. I am just starting to look for resources and found this group. Thank you for being here.

Kibbee

@ImMaggieMae Re using a Hoyer Lift for toileting. Yes, it can be done. It requires a special sling with an open space so the PWDs behind can be uncovered and make contact with the toilet seat. When the base of the lift is adjusted to its narrowest position it will fit through most doors so it can get into a bathroom. Once inside the bathroom there needs to be adequate space to maneuver the lift into the correct position over the toilet. But most bathrooms (ours included) don’t have that kind of open space. Alternatively the lift could be used to place the PWD on a bedside commode. One caution with that, make sure the commode is heavy enough to remain steady while the PWD is being lowered on to it, and while they are sitting on it. You don’t want anyone or anything tipping over.

I tried the bedside commode route at first but DH could not always identify that he was ready to ‘“go”, so it was a lot of effort for some wasted trips. And if he did recognize that he was ready to go, he could not dependably hold it until I could get him onto the commode. Plus I had to remain close by, since he wiggled around and was at risk for tipping over. In the end, it was easier to just keep going with disposable underwear and the clean-up that entails. I’m OK with that because I’d have had to do clean up assistance with commode use too.

Kibbee

@ImMaggieMae For what it’s worth there are also systems where the lifting device operates from a track attached to the ceiling. These are custom installations and often have tracks that go directly from over a bed and extend into an en-suite bathroom. The caregiver uses a remote control to move the lift along the track, and to raise & lower it. Very nice, but not something Medicare will pay for. The Medicare lifts are basic. On mine I have to use a hand crank to raise & lower the boom, but it’s easy enough to do and I just think of it as my upper body workout!

fmb

My DH is in hospice care, and his Hoyer lift rental is 100% paid for by Medicare. The one they provided runs on a rechargeable battery, with two batteries provided.

ImMaggieMae

Ok, I started a Group for Caregiving at home and started with a question about Hoyer lifts. Kibbee, it would be great if you could copy and paste the information you posted here which is so extensive and helpful.

The group is open to anyone, so if you have suggestions, comments or questions on home care, you’re welcome to post. If you click on the 3 little lines up in the corner of the top bare it will show a drop down menu with Groups as one of the options.