Refusing to drink

Hi Carlos,

I'm sorry to hear about this, and can fully understand how sad and worried you must be. I'm elderly myself and lost both my mother and a dear friend to dementia - the latter only three years ago. I'm also a former nurse, though not specialised in geriatric or end-of-life care.

My friend was given fluids every night via hypodermoclysis during the last few weeks of her life, with the infusion being set up in a new site every night by the nursing staff in the psychogeriatric unit where she ended her days. In her case, it was set up in a new site every night.

It's my understanding that hypodermoclysis cannulation sites are quite fragile, and not as suitable for long-term use as the IV kind. I have, however, done a couple of searches on indwelling hypodermoclysis, which seems to suggest this might be possible. Perhaps you'd care to do a similar search. I would, however, imagine that the original insertion of the cannula might have to be performed by a professional.

I'm hoping there are others out there with more specialised, up-to-date knowledge than mine, who can give you more specific advice. In the meantime, does your mother not have a doctor or nurse you could ask about this?

Finally, I know this is very sad, but it's often dehydration that helps dementia sufferers out of this world. In fact, most hospitals and nursing homes withdraw fluids just before the end, when the kidneys are no longer functioning properly and hydration would only result in more fluid ending up in the tissues, adding to the patient's distress. I'm wondering whether you are able to estimate your mother's urinary output, and determine whether it's decreasing even in comparison to the little fluid she's taking in. If it is, this could indicate that she's already in the terminal stage.

To us, death by dehydration seems a terrible, painful affair, but people in the very last stages of life don't seem to experience thirst - as evidenced by their refusal to drink. Would you consider just offering fluids at regular intervals and allowing your mother to drink when she wants to? That way, she wouldn't suffer thirst. This isn't euthanasia, it's simply allowing nature to take its course to a peaceful end. In the meantime, you can swab out her mouth with a wet sponge at regular intervals. People who have gone past the stage of voluntarily drinking will often suck at a wet sponge by reflex action.

I know only too well from my own experiences how painful these end-of-life choices are, and my heart goes out to you. I know you'll give your mother the best possible care, whatever the choices you make.

And don't worry about your English - it's excellent!

Lily,

Sorry that I repeated my first post. i was just trying to edit the original text, wich obviously didt work.

Thank you so much for your kind, and also helpful response . I understand that you have been trough this process of caring for loved ones with dementia, wich is  so stressful and yet so rewarding.

Eventough my mom is on the last stage of dementia , I dont think she is at that point when  I should consider  letting “nature take its course”, and the reason is that  she still eats well specialy at lunch, she hás not lost much weight, and  despite the refusal to drink it only ocurrs at certain parts of the day. Interesting what you noted about the urine output wich in her case hás not diminished, but I will of course be vigilant in case it does.

The problem is that  she is not drinking as much as she should, and one of the reasons is that now she hás frequent episodes of severe constipation ( up to 6 days)

I have done a few searches on the subject of  hypodermoclysis, that seem to indicate that it is posible for long term use, amonsgst those this text from US National Library of MedicineNational Institutes of Health

“The hypodermoclysis technique of subcutaneous infusion has many benefits for long-term care patients and staff. Minor complications associated with the procedure are easily remedied, and studies have proved its effectiveness. Hypodermoclysis provides an easy-to-use, safe, and cost-effective alternative to intravenous hydration for the elderly long-term care patient.”

I know it will come a time when I will have to make  hard choices,  I just hope I ll have the  strenght to let go

In the meantime I appreciate some other experiences on the issue of  hypodermoclysis as a way to suplement insuficient hydration on a long term basis.

Thanks

I think you'd need to ask your mother's medical adviser about hypodermoclysis anyway, as you'd need training in handling this. I'm assuming you don't already have some kind of medical training - apologies if you do. I've only ever heard of it being used at home under the daily supervision of a nurse.

I appreciate your point that as your mother is eating well she's still getting some enjoyment out of life. Are you actually able to measure her fluid intake? If her urinary output hasn't fallen significantly, that suggests that she's still getting enough fluid. I also helped care for a friend's bedridden mother until her recent death. She drank around 800ml of fluid per day for the last year or so of her life, when she wasn't eating a great deal, and this seemed to be enough for her.

Constipation is going to be a worry, of course. I'm sure this is something you're well aware of, but if her fluid intake is very low she shouldn't have any cellulose-based bulking agents to help her constipation. (Can't give you any commercial names as examples as we're clearly not in the same country.) If these bulking agents are not taken with sufficient fluid, they can cause intestinal obstruction.

I can only reiterate that a subcutaneous infusion is something you'd need to discuss with your mother's doctor.

I wish you all the best with your devoted care of your mother.

Lily

You have been very helpful.

I already asked a nurse in a local clinic, if Hypodermoclysis  would be indicated in the case of low hydration on a 89 y.o. woman, and she said that it certainlity is an option. also told me that  if no adverse reactions such as Inflammation or other,  the catheter can be  used for up to 7 days ? ( that was a surprise to me, so long ?)

Any way  I will  try for at least one week and see how it goes.

I just want to be prepared, because I can sense that the trend now is for her to refuse to drink ,  Last month she was drinking about 1500 centiliters, now it is hard for her to drink 1000. she still pees a lot even with less liquid intake, but I want to avoid taking her to hospital if on a bad day, as it has happened before she totaly refuses  to drink.

Also thanks for the constipation advice. Sometimes I have added some thickener to help her swallow (starch based), wich might worsen the constipation problem, so I will stop that aswell

Thanks for the help

Carlos