Need to vent and looking to hear advice or from people with shared experiences. My mom’s neurological disease progressed quickly in the past few months and she is now in hospice. She has limited speech, confusion, incontinent, and is bed ridden. She lost the ability to feed herself in the past three months and was barely eating because she does not want help. She was still drinking a lot of water but became very congested, was admittted to the hospital. She did not have pneumonia but failed a swallow test. They said with every viscosity some goes into her lungs and to expect 1-2 weeks and recommended hospice care.
I took leave from work and we are now in week 3. We considered bringing her home for hospice care because she actually looked better after a few days. But I quickly realized that she looked better because my dad can’t handle the care she was in need of at home. She gets better care at hospice and it’s a burden off of my dad.
It has been exhausting and grueling. At home I have a very busy life that has changed to very little activity overnight. I sit with my mom, make food and do chores for my dad. I’m stress eating and not exercising. She hasn’t had solid food, she’s had some soft food sparatically, mostly ice cream or something cold that soothes the throat, and on average 1-4 oz of liquid per day. She’s conscious a couple hours a day, or keeps her eyes closed and listens. I go between wanting the relief of her passing and then feeling guilty about it. Because of the initial doctor’s life expectancy my father and I went through a big part of the acceptance of it all, made funeral arrangements and everything. And now we are waiting and are told it’s very difficult to predict the time that is left, and I somewhat resent the first doctor for not saying that.
I also have mixed feelings about the hospice care. My mom has requested food or water three times unprompted in the last three weeks. When family asks if she wants something she says no. When I nurse asks she sometimes agrees or if they ask repeatedly she will agree to the 3rd or 4th suggestion. My mom has always been a ‘pleaser’ and throughout her illness would not do things for the family (like OT or PT) but would always perform for doctors and nurses. I spoke to the hospice about this, concerned she was just appeasing them but the behavior hasn’t changed. I told my mom it’s okay if she doesn’t want anything but she didn’t respond to me. She has never been comfortable discussing difficult issues despite my efforts.
I’ve heard people living only a few days like this, and some lasting weeks or months. I feel guilty for wanting it to end sooner but also angry that her low quality of life may be prolonged.
Her blood pressure has been mostly normal, she usually has a high pulse, she aspirates some after injesting, she is being given suppositories for bowel, and is wet every time they check her every four hours (how is that possible on such little liquid?). She is losing weight, was never big to begin with, her hands and feet have some swelling. Her color still looks pretty good, feet are pale, her skin gets pretty dry so we put lotion on daily for comfort. She says she’s not in any pain when asked.
Had anyone else had similar experiences with failed swallow tests? Thank you for listening