DH put on in home hospice care

nancyj194 · February 18

The long road is heading towards the end. I am trying to stay strong, but with each passing day, the road becomes more treacherous.

Last night DH fell after getting out of bed in the dark. In the process, he lost control of his bowels, in his Depends. Hospice said to call 911 for a non emergency lift assist. This is the second time in a week. Bedtime now consists of being awake most, if not all, of the night.

I am still taking him to the adult day care for people with Alzheimer's/dementia, twice a week. Thankfully that has not ended, yet.

Hospice is very good and caring, but other than someone coming to give him a shower, now a sponge bath, the rest is on me. The visiting hospice nurse goes over what DH needs for medication/supplies and they are sent out that day or the next. The nurse checks his vitals and is so very thorough on what I need as well as my DH. They can only do so much.

Exhaustion is taking over, but I'm still upright and doing what must be done.

White Crane · February 18

My heart goes out to you, Nancy. Try to breath and take each minute at a time. My prayers will be with you and your husband.

Brenda

Kat63 · February 18

So sorry to hear of your DH’s progression. My DH has been on hospice since last July and has fallen a few times in the last few months. Surprising but he can still get up with just a little help from me and so far no major injuries. Understand the assist from the Hospice nurse and aide. I appreciate their help so much, but yes most of the care is still on us. Please take care of yourself, especially if you are not getting any sleep. I had a day last week, as my daughter stayed with my DH and it helped so much. Sending hugs to you.

CindyBum · February 18

Thinking of you and wishing you peace and strength.

xoxo

CampCarol · February 18

I’m so sorry this is happening, and so much is still on you. I know you’ll stay strong for him; I’m sending prayers and virtual hugs!

Karen711 · February 18

Dear Nancy,

I wish you could have a friend or a relative, or an aide there with you during the evenings. It is so hard on so many levels to be there shouldering this by yourself, in the middle of the night. And as Kat said, sleep is so important! I’m hoping there are some resources you can call upon for added in home support!

Sending you a hug and prayers!
Karen

SDianeL · February 19

so sorry you are at this stage. Praying for you both. Hugs. 🙏

Jgirl57 · February 19

Sorry about your DH’s fall. You are doing your best . I imagine this last stretch will be very exhausting for you. (((HUGS)))

Jazzma · February 19

I found out yesterday that some of the aides at DH's memory care do side work as respite caregivers in home. For me, this will be a godsend as he is back home after a year at the facility, knows these people, and (I think) will accept them in our home. Perhaps you could check with local MC facilities to see if it's an option? These are people who interact with dementia patients all day long, and many have years of experience. For me it's better than trying a 'visiting angels' type service. You need to get a break and be able to relax, maybe even take a nap. Sending you warm hugs.

ImMaggieMae · February 19

Have you talked to your Hospice people about meds to help him sleep? Sleep is important for him too. Caring for a person with dementia is difficult enough, without having to do it with a lack of sleep.

Jazzma · February 19

https://alzconnected.org/discussion/comment/236719#Comment_236719

After posting this comment I realized that having people you don't know care for your loved one at home is risky. I happen to know the aides from his MC very well, so I'm comfortable with some of them and would not be with others. So — I don't think my advice is that good. Take it for what it's worth.

Biggles · February 20

Always such a sad and diminishing journey sending hugs, love and strength.

nancyj194 · February 20

Hi everyone,

I so appreciated all of your thoughtful responses. They lifted up my spirit.

Last night DH slept all night until right before 5 am. I slept also for the first time in weeks.

My temper has been short and I feel so guilty. I try to take a breath and respond calmly.

Jazzma, thank you for the comment about having someone come to help out that I do not know.

Kat63, I am sorry your DH is on hospice and has fallen, also. It's good he has still be able to get up with your help. Mine no longer can, even though I try each time before I call 911.

This morning when I went in to help him get out of bed, he was lying on the edge and said he was going to fall. I suggested he scoot over to the middle. It is a queen size bed. He said he was going to fall off of the other side. Oh my gosh…It took 15 minutes for me to help him move to the middle so he could then sit up and finally put his legs over the side to stand up and get out of bed. Everything becomes complicated.

There is a short railing at the top part of the bed, but he can sit up and get out where the railing ends.

Maggiemae, hospice prescribed Lorazepam 1mg, which does not work. They are upping it to 2 mgs. Hopefully that helps.

Hugs back to all of you.

ImMaggieMae · 8:20AM

Nancy, are you awake mostly because you’re afraid he’ll try to get up again? My DH usually sleeps all night but very occasionally will wake up to go to the bathroom and I have to go with him because he’s a fall risk. I made up a very simple (and cheap) alarm system. He has a hospital bed here at home with a partial rail along the top half. Below that, I set a lightweight kitchen counter chair, one of those typical types with the rungs. The back of the chair is against his bed and I have two tall thermos bottles set on the floor, inside against chair rungs. If he gets up and pushes the chair, the thermos bottles tip over and make enough noise on the porcelain tile floor to wake me up. I sleep on the sofa, perpendicular to his bed and pushed up against it, my head just a couple feet from his. I have another chair down toward the bottom of his bed, on the side where my couch is, another tall container inside the rungs. Sounds goofy, but it works. He’s groggy enough waking up that I can get around to his side of the bed and help him out.

We sleep downstairs and have for over a year because he can no longer climb the 15 stairs to our bedroom upstairs. We have a regular home alarm on all the doors to the outside that will go off as soon as you open one of them, but he’s never tried that since sleeping downstairs.

DH put on in home hospice care

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