Quandary about what to do -- Hospice or not?

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A week ago, I took my Mom to the ER because she was panting from minor exertion and was pretty weak. Dr at ER diagnosed "very mild" pneumonia and put her on Levaquin antibiotic for 5 days.

Over the next 3 days it was increasingly difficult to get her up and transfer from chair to seat on walker, to commode, up from bed and so on -- her knees are very bad to start with, she seemed to have put on several pounds of water weight, and she was quite weak and wobbly. I was having to support as much of her weight as possible and it was difficult.

Last Tuesday afternoon (5 days ago), she fell while I was trying to get her up from the commode. She bent over double, could not push herself upright, and I could not hold her weight in that position, so she went down on her knees. Not hard, as I was able to provide a bit of support as she went down. But when she fell, her left lower leg was scraped by something on the strut of her walker, and she ended up with several bad skin tears there totalling a wound of about 8 inches long by about 4 inches wide. Bled a lot. I called 911 and put pressure bandages on, and she was taken to the local hospital ER. It took a med tech there at least 45 minutes to carefully place the pieces of torn skin back in place and suture them with Steri-Strips because her fragile skin won't hold for stitches.

I could not have her back home because I can't lift her and she could not stand long enough for me to transfer her. I had already called Hospice to have them come out and evaluate for a hospital bed, so I insisted the ER call Hospice to come and get her. The nearest Hospice location is about 45 minutes away. A nurse came out, evaluated her and arranged for her to be transported in to their Palliative Care Unit for further eval and until arrangements could be made for the hospital bed. Usually that is a 2-day stay, and she was discharged today and their transport brought her home. The hospital bed is to be delivered tomorrow morning.

But now here's the thing: now that she's home, she can stand with enough strength to get her up and transfer her with no more difficulty than I was having before she ended up being so weak and short of breath last week. Makes me wonder how small really was that "very mild" case of pneumonia. I remember kind of wondering why the ER doctor didn't hospitalize her anyhow, given she is a 96 year old woman, but I didn't ask.

Should I cancel Hospice and the hospital bed? She says she doesn't need it and doesn't want it ... well, this evening I would agree she doesn't need it per se, but she might need it in another couple of days. While she was at the Hospice unit, they didn't get her up to walk, they cared for her in bed. So she had nearly 3 days of being off her feet, resting her knees, etc. Here, she will be using those knees and legs several times a day.

What to do, what to do?

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I'm kinda going through the same thing. In January my brother, the nh and I all thought mom could go at any time. I started the process through her health care to get a hospice evaluation. Then my mom rallied and has been doing better. Just yesterday the hospice people called to say they'd see her Monday. I explained mom was doing better. The hospice nurse said it was still a good idea to continue - and that the most common mistake families make in situations like ours, is waiting too long to get hospice involved.
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Az, i think you're on the right track with Hospice. Mom has kidney problems, yes? I seem to recall that Leviquin can cause kidney issues, ao you may be seeing some additional weakness on that count.
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And the proof is in the pudding ... getting her up this morning was no problem, and she was able to walk with her rollator to the bathroom (about 6 feet from her bed), but her knees started to give out on her just as she reached the commode and she ended up half-falling onto the commode with her Depends still on, I may have given her "Depends rash" when I cut them up the sides and then pulled as gently as possible to get them out from under her. Getting up was a problem, almost a reprise of a week ago when she fell, but we (barely) managed.

The bed was delivered just after I got her onto her recliner chair in the livingroom!
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I will keep her in the program, now that I know the program will keep HER :) The aides twice a week will be a huge help, and also a nurse once a week to keep an eye on that leg wound. Thanks so much for the good advice!
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AZLife, leave her in the Hospice program. They will determine the next steps and take some of the burdens off of you. Hospice saved my sanity the last year of mother's life at Age 97.5. It was the best decision I ever made concerning the well being of my mother.
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jeannegibbs, thank you :) Keeping her on Hospice is what I'd like to do, for a while at least. My biggest concern is that if her legs get so weak again, for any reason, then toileting her obviously becomes a huge problem because I can't get her there and it's awkward to try to change her and clean her in her recliner chair or in her bed. It can be done so much more efficiently if she is in a hospital bed that I can adjust to a level comfortable for me. I'm just worried that if the Hospice folks see that she can be gotten up and down all right at this time, they would want to pull the bed, but obviously (to me) she could go downhill again at any time and rapidly.
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One more comment ... "wondering why the ER doctor didn't hospitalize her anyhow, given she is a 96 year old woman"

Hospital stays can be very disorienting and confusing and scary and unpleasant for elderly people, and for people with dementia at any age. Many doctors try to avoid hospitalizing elderly people or keeping them in the hospital longer than necessary. Obviously sometimes the hospital is necessary, but it can be a tough call.
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Since you have hospice arranged, what would be the downside of continuing with it?

Last year my mother (95) went on hospice (in a nursing home). She improved and improved, and whaddayaknow? She is still with us. After about 3 months she was discharged from the hospice program. She "graduated."

My husband (dementia) was on hospice only 5 weeks in our home before he died. Hospice made those 5 weeks much more comfortable for both of us. For example, he was miserable one day. The hospice nurse examined him and said, "I think we can solve this with a catheter. She went to her car, brought in a sterile kit, and had the problem solved very quickly. I am so grateful it didn't involve transporting him to an ER!

One of the biggest benefits of hospice is they cut red tape. We'd been trying to get a hospital bed for about 2 weeks. It is covered by Medicare and his doctor ordered it, but there were all kinds of paperwork delays. I signed the hospice agreement at 3:00 in the afternoon and the bed arrived by 7:30 that evening!

Hospice means the end to any attempts are curing the patient. That did not apply to my mother, who was not a suitable candidate for physical therapy (for example) and was not on any drugs she had to stop. In my husband's case he was clearly at the end stage of his disease, and the fewer pills he had to try to swallow, the better!

Unless it means giving up some treatment you think your mother should have, I don't see any reason not to continue with that program. If she truly does get her strength back and she no longer appears to be likely to die soon, they will take her off the program. You can ask to have her leave the program at any time.

My husband loved getting the hospital bed! And my mother loved getting hers. I think you will find that it is very practical and handy. If mom doesn't need to be in it all the time, so much the better.

AZLife, please come back and let us know what you decide and how it is going for you. All the best to your mother!

(By the way, in case you need to know, the hospital bed will probably say it takes extra long twin sheets. They work. But since today's sheets come with such deep sides the regular twin sets work, too. My husband loved a plaid flannel set from Target! And after he was gone, my mother loved them, too!)
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