My 78 year old alcoholic mum has been having increasing issues with dysphagia. She's now down to small amounts of cream of wheat, smooth soups, soft cheese and wine which has recently declined from 2 1/2 bottles/day to 1 1/2. She often chokes and spits up meals. Blood pressure is hypotensive. Our homecare doctor is vague on her trajectory. She's obese & ambulatory, has COPD & CHF, is on home oxygen, has lung cancer, epilepsy, a collapsed lung, gallstones, a bad liver, pruritus, tremors, edema and lifelong untreated generalized anxiety disorder. Amazingly, no cognitive decline but sleeps a lot, awake maybe 8 hours total per 24 hours. I've moved in to help and oversee homecare and deal with the constant curveballs but i can't do this for months. Does anyone have experience with dysphagia and alcoholics? I am stunned at her body's ability to withstand malnutrition, dehydration and alcohol abuse and certainly not happy she won't consider hospice!
I'm guessing your mom won't want her wine thickened, and that might just do her in, as it can go into her lungs instead of her stomach, and can cause aspiration pneumonia, which in most cases is deadly.
Your mom has a lot of issues going on, and the fact that she is sleeping a lot, tells me that perhaps the end is closer than she/you may realize. And though you say that she has no mental decline, I would beg to differ, as someone with all her health issues who continues to drink, obviously has some mental issues for sure.
She really does need to be under hospice care at this point, whether she admits it or not.
You are not your mothers keeper, nor is she your responsibility. You have to take care of yourself and do what's best for you. Your mom probably belongs in a nursing facility at this point, where she will receive the 24/7 care she requires, and you can get back to just being her daughter and advocate.
I'm sorry that you're having to deal with all this, just because your mom has chosen not to take care of herself. But again, that's on her, not you, so please do what's best for you.
Has her dysphagia been diagnosed by a speech therapist who did a swallow test? Or is there an assumption that it's dysphagia?
Instead of Hospice, how about considering Palliative Care to start?
No, you can't keep up this level of intervention and support; it's going to deprive you of your livelihood.
Time to have a hard conversation with mom about what she is going to do when you leave in a week. You will find out how much insight she has into her situation when she answers--she may think she can manage just fine on her own! She can't, but if she thinks she can, then you will need to confont the fact that there IS a decline in her reasoning abilities.
Dysphagia was diagnosed a few years ago. Doc believes her main issue is hardening of the oesophagus. She's had many lectures over the years from medical professionals about her unsuitable and unsafe living situation (family house & big garden) but she is resolute, she wants to die at home. And she can afford it. She's spent 100's of thousands over the past 5 years making sure the home and her are taken care of. Private care however is hit or miss and so many little things they can't do. I'm tired of driving back and forth and the constant worry including her being prayed on for her $. The last cozy relationship with a private careworker was the last straw. The DNR is taped on the fridge, MAID & hospice pamphlets go unread in her night table, we're down to the wire. I just feel obliged to be here. And yes, her reasoning is not sound but she doesn't have dementia which is the only legal way i could assume more control.
Just wondering about dysphagia progression and how long can someone so unhealthy survive with so little food/nutrition and a liquid intake of just wine :/
The same product that thickens thin liquids can be used for the wine.
I am guessing that at this point she "needs" the wine and would refuse to do without even if she could.
The products that are used to thicken liquids change just the viscosity of the liquid not the taste, although drinking a very thick liquid or even eating water from a spoon can be a bit strange maybe off putting to some. But at least she would not aspirate.
I've given up discussing hospice with my mum. Her doctor is due for a visit in a few days and i hope he strongly encourages it. I've spoken to him privately for months about the toll it's taking on me. I guess i'm more frustrated that the health authority supports end of life at home. It just shouldn't be an option in all circumstances.
She has no wine swallowing issues presently. Water however makes her gag lol. I think when she can't drink her wine is when she may finally give in and RIP.
Um. I'm not quite sure what your mother is expecting of you, or what you're expecting to happen or to be able to do for her. Have you thought this through?
You say you can't do this (whatever "this" is) for months. What if it's years?
I will ask the doc about oesophageal varices. Never heard of those. What's happening now is tightening and food/pills getting stuck so diet has become very small, 2 small pills are crushed and mixed with yogurt and another med changed to liquid. Most of her meds were discontinued last year due to kidney failure at which time Doc said prepare for the worst and 6 months at the most.
What i can't do forever is be 24/7 live-in coordinator. It's been six weeks and prior to that i was constantly worried and on-call regarding care and house maintenance issues. Mum's got days, weeks to months. You can't live without food for more than a few weeks. Longer if you stay hydrated and she's in deficit. I guess i've just calculated reasonable life expectancy while bracing for dysphagia changes. Which is why i'm here. Things are just too dynamic.
It's possible but we'll never know. No more hospitals. I think it's just a combo of her many co-morbidities and active dying. End of life dysphagia is so complex and must be so overwhelming for the patient. Every bite and sip could be life-ending :(