My 86-year-old grandma has Parkinson's and dementia. Partial hip replacement back in March. Deteriorating since then.
Was constipated from meds: back to hospital for enema.
Dehydrated from enema and not really eating: back to hospital.
ER finds UTI and mentions “failure to thrive”, because she wasn't eating too much. Trouble swallowing begins.
Bags of IV meds: infection cleared. Started eating puree and thickened juice.
She eats, and hydrates, then comes back home.
Eating fine at home on day 1, but day 2 she is mostly unconscious and we can't wake her, and no food intake. Back to hospital she goes.
Bags of IV, and she is back... and eating puree. Blood work is fine. CT fine; no heart attacks or strokes. She is medically OK. Vitals are good.
Dr mentioned palliative care bc this seems to be a pattern: she gets hydrated in the hospital, comes home and gets dehydrated.. so it's back to the hospital. She would come home, eat and drink as she wants.. and then we just let nature takes its course. She is DNR, so he said she likely won't come back to hospital if anything goes wrong. Dr said could be days.. to months.
So we are kinda confused, bc if everything else is “fine” or “good”, why would we go directly to palliative?
Could it be something else?
When she is alert, she eats.. but I know her drinking has declined.
Can she come home on an IV? Can someone survive on an IV?
I kinda feel like we are giving up on her if we choose this palliative care option.
I still need to get more info, because Dr said her situation is different bc she still eats.
We don't want her to suffer; all this back and forth, poking is too much for her.
We want to make the best decision for her. I know she wouldn’t want to be hooked up to machines, so would an IV kinda be the same thing?
Any suggestions/advice of questions to ask?
Thanks in advance.
I suggest considering where quality of life fits in with your grandma's value system. Does extending life in this incarnation take precedence over the quality of life. For some people it does. For other's it is the opposite. Once you have considered this, then you will know better how to address her situation.
I agree wholeheartedly.
We would prefer grandma to be
comfort and to go in peace, whenever that it.
For examples, try https://www.parkinsons.org.uk/information-and-support/equipment-eating-and-drinking
Is grandmother propped up while she tries to swallow? Swallowing lying down is a different set of muscles from swallowing propped up when gravity is working to help.
If she requires permanent hydration with a tube, it would seem to be a ‘close to the end’ situation, no matter what they say.
You say she has a 24 hour caregiver. But you say that she has not spent much time with her to monitor.
Your grandma's fluid intake should be monitored.
Thickening liquids and pureeing solid foods should be done.
And offering thickened fluids, and soft foods like puddings, pureed fruits should be a constant.
If grandma has a tendency to "choke" or aspirate then avoid things like jello, gelatin as those will liquify rapidly once they get into the mouth.
If monitoring and increasing her fluids then this routine of dehydration, hospital, "recovery", back home to dehydrate again will continue. And at that pint the doctors will probably recommend Hospice rather than Palliative Care.
At some point there is a time when the body has had enough and the "failure to thrive" becomes an End of Life transition. There is not much one can do when that point has been reached. We all have a time when enough is enough. While family finds it hard to accept the person that is dying is generally at peace. As your grandma declines and eats less, drinks less it is best not to force her to eat or drink. As there is decreased activity the need for calories decreases.
Offering is good but not forcing. If the body is not processing liquids even IV's can be a problem as there is no place for the excess fluids to go so edema can become a problem.
She has 24hr care prior to breaking her hip, which is when this all started. In the last month, she has only been home a few days. Visitors aren’t really allowed in hospital, but after a few arguments, we were able to have the caregiver there to help, as the Nurses are not helpful. My grandma doesnt have the cognitive capacity to ring the buzzer to have her diaper changed.
The initial days home with the caregiver were fine, eating and drinking. Each time she goes to the ER, the eating process has to start again. Ugh.
But I will ensure to monitor better.
we completely understand that this may be the end, and have made peace with it. So we want to do whats best for Grandma.
I shouldn't think they were doing that in hospital, even once she was off the IV but before she was discharged. What's the problem with drinking?
its all spoon fed to her
Do research and discuss, then discuss with the MD. Neither Parkinson's nor Dementia is end of life diagnosis. But adding age, other infirmities, other difficulties and overall quality of life in the equation of this PARTICULAR elder may make Palliative the right care. Ask for a Palliative care consult so you can discuss what it all means.
Do try to remember that "giving up" is quite different from "recognizing that someone has lived a long life and is approaching the end of it". That knowledge doesn't specify years left, but it does mean that it is time to consider comfort and quality of life over length of life, and going on and on and on to no end and with great torment.
I am so glad you have a meeting on Monday to explain what palliative care is, because I think you don't understand it fully. You can, in the meantime, easily research online what exactly palliative care is.
I surely do wish you all the best in this decision.
I wish you the best of luck.
We have a meeting on Monday.
was researching last night when I found this group.
After reading other’s posts, im realizing that, there is a lot more to it, and we need to ask more questions so we understand what it will look like, and what will happen along the way.
Thanks for the reply.
we understand that her time may be up, but since the multiple Drs have told is different information, we want to ensure we are trying everything.
So it doesn’t feel like we are just giving up and letting her starve to death.
Everything else is “normal”, her organs are not failing, and we want to give her another chance.
its really only been one instance when she was unconscious.
For example:
monitoring her fluid intake
encouraging frequent, small drinks
using sippy cups, straws
choice of drinks + water
juicy foods - soft canned fruit, soups, milkshakes, salads, jello, etc.
Is somebody with her all the time?
It isn't really that long since her hip replacement, and it is a big operation to get over. Certainly too soon to give up! - but palliative care doesn't mean letting her turn her face to the wall, it just means taking certain strenuous and invasive measures off the treatment menu after discussion.
How is she in herself? Happy enough? Do you have any concerns about how she is taking all this?
thank you so much for replying, your reply helped a lot.
She has a full-time 24hr caregiver who feeds her.
grandma cant drink out of a cup/sippy/straw so she is fed liquids with a spoon.
She hasnt really spent enough time at home to monitor.
Her dementia got significantly worse after surgery, but most of the time she recognizes family.
last week I thought she wasnt going to make it, so I asked her about a feeding tube/breathing tube and she said no. My Mom has power of attorney (i think its called advance directive in the US) and said Grandma made it clear that she doesn’t want life support.
we are making plans to bring her home and I will be making her food
to eat, and I plan on getting her other liquids to drink, like Gatorade.
What I saw was that each hospitalization set her back a bit more and she never regained her baseline. So we said "no more hospital trips--what they can fix at the NH, all well and good. If not, let it be."
You are in a different situation, because she's at home. Is there anything you can do to increase her hydration? Soup? ices? Protein shakes? Watermelon?
Palliative care isn't "giving up". It's letting things be.
thank you for replying. Glad to hear that there are other options, and that this isnt the end.. yet.
ive taken time off to help out, so I plan on making a schedule for the caregiver so we can monitor food and hydration.
she has been eating all her puree
food.. its just the liquids.
We are actually located in Canada, so we dont have Medicare.