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SIL on hospice, trying to set rules and schedules, bedtimes, dog time etc. My SIL is only 52, she has CHF, PSORIATIC arthritis, Breast cancer, fibromyalgia, and end stage liver failure, and psycosis plus she had a large hematoma removed from her brain last month. We have put her in hospice 2 weeks ago in my home, she's been living wit us almost 4 years. Most of the time she's been easy but now she's super demanding. I used to let her dogs run around but had tile floors, now we've moved to a new place with mostly carpet, so they have to be in her room or outside and she keeps wanting them in and out and I'm trying to limit that. I myself am not a dog person and have never before had animals in my house. I'm refusing to let her smoke because the hematoma, she could have a stroke. She also wants to be wandering the house all hours of the night and I'm now limiting her to her room from midnight to 8 am because she is altered and can get hurt. She falls quite often, at least once a week. I have a baby monitor to try and keep track. She also keeps tearing off her clean bedding and trying to cook and do stuff she hasn't done in years. She bounces from being almost comatose to highly active every few days. I hate limiting her but she's demanding all things at all hours. She's walking using a walker. Right at this moment she's "cleaning" her room, but only really making a mess. No one really knows how much time she has, cirrhosis is unpredictable, I'm prepared for a day, or a year to be honest. Part of me wants to let her do what she wants because she's only got "so much time" yet I get no sleep and am trying to keep up part time schooling. Also, when her ammonia levels are high and she's extremely altered and she cannot stand, is it okay to use the lap restraint on her to keep her from falling out of bed? It's the one they used in the hospital, and only when she is unable to stand on her own and only at night.

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I would let her smoke, but the neurological team said it would be giving her a loaded gun. I let the dogs in her room (tile) whenevr she wants, but then she can't go in and out of her room because as soon as they get out they run and pee and poop on the carpet because they won't go in her room. Unless something traumatic happens, I think this could be a long haul..they gave her 6 mo to live, almost 4 years ago...she shocks the Drs all the time. I just want to balance things....my family gets upset because I'm too easy, I feel bad and give in because I'm trying to make her as happy and independent as I can while trying to keep her alive and safe.
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Set limits you can reasonably live with. Keep sharing the burdens of care. You do not have to let her do absolutely anything that strikes her fancy if it makes your home unlivable, though you may want to allow things that make her happy that you otherwise wouldn't want to see her do for the sake of her own health. This is a tough job with this combination of medical conditions!
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I'm not alone...I'm sorry, I should have stated that. My husband as well as my mother and two daughters are here helping, my daughters are 20 and 23, but I am the main caregiver...and right now all she wants is ME. She is on Ativan, but it doesn't keep her down long....it seems she's like hyper and manic for 3-4 days then she'll burn out and be comatose a few days....including diapers. This has been going on a month at home, but was like this at hospital too. Like bi-polar but this is just the last 2 months. We take turns "babysitting" now, few hours at a time or until someone can't take it. I'm not sending her to NH until she gets to a point she's unaware of her surroundings or doesn't know who we are...I know they will have to restrain her and sedate her all the time as they had to in hospital. As for her family, aside from my husband she's got a sister who until I took over finances would call my SIL for money (who gets all of 1000 a mo from SSDI) while she and her husband make good retirement money, a brother who lives in a trailer in the wilderness and another brother who just saw her for the first time last week....in two years, and he's only an hour away. Oh they're 'thankful, I'm a 'godsend' so it's up to me and my family. My mom lives here too, totally healthy (thank god) and IHHS pays her to watch her while I'm at school..right now we get 25 hours a week. When it's 25 hours a day! For us in our area on her income a nursing home is not really an option.....they are just plain nasty and staff is sparse, when my granma had to stay a month we took turns sleeping on a cot in her room because there was not enough staff to even get her to a bathroom when she needed to go and shared rooms, I would have to be there all the time to keep watch.
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It really sounds like she needs 24/7 care or moved to a hospice facility, for her own good and for yours.
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Hospice can medicate her anxiety. Talk to the nurse about her agitation. You should not be saddled with this, for crying out loud, where is the rest of her family?
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