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Hello,


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

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Thank you everyone for your responses, it’s helpful to hear. She developed mottled skin on her legs so we know it won’t be much longer. Her waking and lucid moments have been fewer. I spend nights alone with her and before bed last night I asked if there was anything she needed. She said yes a hug! I was very touched because my mom has never been into physical affection. I have her a hug and told her I love her and she said she loves me too and that she is sorry for any problems she caused. I said she hasn’t caused me any problems and squeezed her hand. She is very vocal in her sleep, I can’t make out much but it has the cadence of a conversation. She had some moments today where she seemed in pain but clearly refuses any pain meds. Praying for a peaceful passing
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my dad stopped eating and drinking after he caught MRSA via his urinary catheter ie he was in rehab for a broken hip repair......I believe the antibiotics(he was responding to them) caused him to not want to eat and drink...but they said "he was dying" - not sure if that's what was happening...apparently his agitated condition and delirium made them also make him NO FOOD OR DRINK for fear of aspiration.....they wanted to put in a feeding tube but I said no at that point......so we chose hospice and he died within 3 days due to heavy amounts of morphine/Ativan and Haldol...im sure it was an overdose....and the decision to choose hospice along with what I witnessed with the meds they administered has left me broken for the last 8 months ie he died summer of 2018
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I think the way to handle this is to offer, but don't plead, cajole or force. If she truly doesn't want to eat she won't, she can refuse to open her mouth or to swallow what is placed on her tongue.
Food has a lot of powerful emotions attached to it, feeding our loved ones = nurture and love, and how many times have you heard someone tell a sick person they need to eat to keep up their strength? Your mom may actually feel a momentary pang of hunger which is satisfied by one or two bites of food, or she may crave a special food just because it was a favourite - there is no reason to withhold anything she may desire just because she may aspirate, at this point she is likely to aspirate her own saliva.
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Billie, so sorry to read that your Mom is going through this.

My Dad developed aspiration pneumonia due to every time he ate/drank he would have a major coughing spell to a point where he couldn't catch his breath. While in the hospital he had a swallowing test done, among other testing, and failed, and the nurse told me it was time for hospice.

Dad was ready as he had missed my Mom terribly since the year prior she had passed. A couple weeks later, Dad passed peacefully in his sleep, after I had told him while he was sleeping it is ok for him to go, and that he had taught me well regarding how to deal with life, and how I knew every tool in the tool box and how to use it thanks to him [which I am sure he was smiling on the inside].
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We used moistened mouth swabs to keep my mom’s mouth and throat from being dry. Also a few small ice chips. The swallow test was very definitive that she couldn’t handle any foods or liquids without problems so all attempts stopped. At the end of her life her food was stopped, she was kept minimally hydrated as her doctors told us that dehydration was painful to the body, but hunger was no issue. She seemed peaceful.
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Thank you- no she didn’t want a feeding tube or IV and I’ve read that can cause more discomfort. Daughterof1930 when your mom failed the swallow test were the signs visible? My mom can get the thickened juice down but is gurgly afterwards, sometimes burps, coughs and hiccups too. She seems to want it to soothe her throat more than anything. But she has confusion and some dementia so it can be hard to get a real answer out of her. My worry is that giving her anything will eventually cause an infection that will be worse and more painful than wasting, but she also still asks for liquid sometimes and it doesn’t feel right to deny her either and even if I do that the nurses don’t.
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People can last pretty long without food. Without water, not very long. Is she on IV fluids? Does she want to be on IV fluids? What does your mom want?
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When my mother failed her swallow test, as in it showed clearly that she was aspirating food into her lungs when she ate by mouth, all feeding by mouth was stopped immediately. This included both food and liquids. Aspiration of food brings lung issues, like pneumonia and other infection. My mother already had a gastric feeding tube when the swallow test was failed, so all her feeding and liquids for the rest of her life were handled via the tube. With your mother on hospice care I wouldn’t think a feeding tube would be placed, more likely comfort care measures would be implemented. I’m sorry you’re dealing with this very difficult situation
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