DH put on in home hospice care

nancyj194

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

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

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

Thinking of you and wishing you peace and strength.

xoxo

CampCarol

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

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

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

Jgirl57

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

Jazzma

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

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

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

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

nancyj194

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

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.

Ragfoot

Nancy,

My DW was recently accepted into hospice in-home care. I very sadly removed her from her two days a week in day care (ADHC). My reason for giving up those very needed hours of freedom is because the day care she was attending will NOT honor her POLST (Physicians Orders for Life-Saving Treatment). In the event something should happen to her while in day care, they would have her transported to the hospital. The hospital, not knowing her wishes for comfort care only (DNR, no tubes, etc.) would attempt to nurse her back to some semblance of health, instead of letting her go.

If your LO has expressed the desire for comfort care only. You might want to check with his day care to see if they will honor his requests.

Best wishes for you. Remember, if you don't take care of yourself, you won't be able to take care of him.

Fred

nancyj194

Immaggiemae, I appreciated the description of your alarm system. Since it works, that's what counts!

I don't sleep well for several reasons. One is I listen for him to make noise, two I hear him make noise and get into his room quickly, three is I have him settled back into bed and take some times an hour or more to settle back into going to sleep. I put a Ring extra camera on the other night stand last weekend, so I can see him moving about or getting up. I check that too much, also.

Our son set up a motion sensor, so his night stand lamp comes on, but last night, DH got up to go to the bathroom, not using the urinal on his night stand. As he walked around the end of the bed, 17 seconds later, the light went out and he fell. It was 2 am.

I didn't call 911 for a non emergency lift assist as I was told by a friend, the fire department will stop coming out. What I did not do was call the hospice number, which I shall do next time. I tried for a good 30 minutes to get him back up, then gave up and brought him a lot of pillows and three cozy blankets to keep him warm. That lasted all of 3 minutes. I again tried to lift him but could not. Anyway, he finally fell asleep and I did too, towards morning, so I at least got another hour of sleep. I called our son and he came over, so we both were able to lift DH up.

I called to talk to Hospice and she said that after a lot of 911 non emergency lift calls, they will stop coming, but we have only had 2 in the last week, so that is not an issue. From now on, I shall call the hospice number and hope things will go better.

Ragfoot, you have a very valid comment about day care and DNR, etc. I will call and talk to them on Monday and make sure all of the information is in place. Our medical power of attorney states that, on the refrigerator, it states that. I believe the day care has that information, but I will ask.

I'm younger than DH by six years. I am healthy and have taken over everything around the house, both inside and out, other than mowing the lawn. That I hire done. I've not given up on planting flower gardens or vegetable gardens every year. This is in a suburb, so we aren't talking like on the farm. You can take the girl out of the farm, but you can't take the farm out of the girl.

nancyj194

On Sunday morning, March 2, my DH took his last breath. It was a long difficult journey for him and me.

On Tuesday, I took him to the Alzheimer's day care and he did okay. When I went to get him up on Wednesday morning, he sat on the side of the bed and as I helped him up, he slid down on the floor. I called our son who came right over and we got DH up and into his wheel transport chair and into his recliner in the living room. DH could no longer stand and sat in his chair, propped up with pillows.

I called hospice and they came right out. The nurse said I could not take care of him any longer. They went about searching for a nursing home facility to have him transported to for respite care, which is covered by Medicare for five days. On Thursday morning he was transported to a Senior Living Facility not far from where we live. He no longer knew me or our son and DIL or our daughter, husband, and family.

He was still eating and drinking a little on Thursday and Friday, but by Saturday he stopped. The family gathered with him on Saturday. The medications to make him comfortable seemed not to be working. He was in pain and moaned and would choke frequently. He never opened his eyes. Our DIL is an RN at a medical center and she did advocate for more comfort meds. Finally Saturday evening, he was not moaning and quietly breathing. I stayed by his side all night listening to him softly snore. At 6:25, on Sunday morning, I heard him take his last breath. I could not believe he was gone. I ran down the hallway to the nurses station and they ran back with me, the nurse said he had a faint pulse and then it stopped. We stood there with no one saying a word until the nurse said, "He's gone. I'm so sorry."

This incredibly difficult road had come to an end.

I wish to thank everyone on here, who helped me, when I needed someone to hear me. You all truly helped make a difference.

Jgirl57

Oh nancyj194, I am so sorry for your loss. It truly has been a long difficult journey. Peace to you and your family.

Quilting brings calm

I’m so sorry for your loss.

housefinch

I’m so sorry and it sounds like you did a wonderful job.

SDianeL

https://alzconnected.org/discussion/comment/238353#Comment_238353

I’m so sorry for your loss. Thinking of you and praying for your comfort. May he rest in peace. 🙏💜

Goodlife2025

So sorry for your loss. There are no words but may you and yours know the peace only He can provide.

harshedbuzz

I am sorry for the loss of your dear husband.

Mint

Wishing you comfort and peace during this difficult time.

fmb

I am so sorry for the loss of your husband. May you be blessed with the strength you need for the coming days.

Kat63

So sorry for the loss of your DH. May your wonderful memories bring you comfort and strength going forward.

White Crane

I'm so sorry for the loss of your dear husband. May you find peace and comfort in the coming days. Please rest and be gentle with yourself. Sending hugs.

Brenda

CampCarol

I’m so sorry for the lost of your beloved husband. Sending thoughts and prayers to you during this most difficult time.

easy23

I'm sitting here with tears in my eyes for you. May you find peace in the coming days; you did a great job taking care of your DH.

midge333

I am sorry for your loss.

ladyzetta

Dear Nancy.

I'm sorry for your loss, your in my thoughts and prayers 🙏 peace be with you. Hugs Zetta