Good advice from others
The New York Times has an article on patients with Dementia, mentioning that although this is a terminal disease, too much aggressive treatment is done for the patient. They recommend patients with end stage dementia should be treated the same as those who have terminal cancer.
This comment posted after the article has been a great help to me.
It's hard for me to accept my Mother not wanting to eat. I guess I need to get over that.
This comment posted after the article has been a great help to me.
It's hard for me to accept my Mother not wanting to eat. I guess I need to get over that.
I did 24/7 care of my father for 7 years. We stayed at home the entire time.
If I had to do it over again, I’d change a few things.
During the final few months, I would not encourage the loved one to eat any time they didn’t feel like it.
Alzheimers patients slowly lose their desire and ability to eat.
Just allow their natural inclination to be the measure of need for food. If they want it, feed them, but do not encourage them to eat more or more of any particular item.
This is especially true in the final 3 months.
Eventually the same will hold true for even liquids.
When they no longer want to drink, offer it, but do not encourage it.
Do not withhold anything, but allow the process to proceed even if you think it will bring a end to their life sooner.
Lastly, give more rather than less pain relief. Err on the side of too much, especially in the final weeks, days and especially hours.
I would have given even more, even too much, pain relief.
I should actually call this discomfort relief rather than pain relief.
With the Alzheimers process faster is better than slower.
Better for the patient and better for the care giver.
Let them go… That is what I learned from my years of care.
Labels: end stage dementia, pallative care
posted by Confessions of a Caregiver at
10:36 AM
2 Comments:
Lynda, I'm happy you were able to get some value out of my post, although it made me re-read what I had written knowing that others might take it so closely to heart.
I'm sure you have it about right. I was trying to convey that I would have given up on trying to make him as healthy as possible for as long as possible and instead just focused on making him as comfortable as possible.
Its hard to know when let go. As he ate less I would sometimes be putting the spoon of food up to his mouth like a mother does to a small baby, trying to get them to eat what you think they need.
As long as they're comfortable it doesn't matter whether they eat enough to sustain weight, because eventually they are gonna lose it.
I also wish I had not overly encouraged the liquids. We went from no food to just liquids and when he stopped drinking from a cup, I was then still using squeeze bottles to get a little liquid in.
I would not do that again.
I would however take all steps to keep the person's mouth wet as a dry mouth can cause much discomfort.
As their intake of food goes down, they do lose weight, but that is fairly slow.
However once they stop drinking liquids, then things progress rapidly, very rapidly.
I guess that's why there is the inclination to keep giving them liquids because they lose weight so rapidly once the liquids stop.
You know the end is coming very soon after they stop drinking.
I would avoid at all costs any IV hydration or tube feeding.
To me, that is madness.
As to the pain medications, I was feeling caught in a bind at times.
I did have both Vicodin and Roxonal (liquid morphine). One problem that concerned me with the Vicodin was that it also slows down the bowels and then there is a balancing act between pain relief and constipation resulting in suppositories and all that.
I didn't want him filling up with pooh in some ghastly amount in the final weeks or so.
Eventually though I did have to use suppositories. Amazing all the stuff you do for a loved one when you have to.
So its all a close call, but as I stated, I would err much more on the side of comfort. I absolutely would have used more of the Roxonol, especially in the last week and even more so in the last 24 hours as breathing becomes labored.
Oh yes, about your brother and the skin injury. I can only say, it sounds like my dad. Sometimes when I was doing just anything, especially changing his diapers etc. , he'd just put his arm here or there, perhaps trying to stop the process or resist being cleaned and ZAP....there would go the skin.
So many times during the last few weeks, and months, a patch of skin would break loose on his arms. It was so delicate. Then I have to spend so much time cleaning it with delicate sprays, and wrapping it with non stick bandages.
The I'd get the once a week hospice visit and feel like they thought I was bashing him or something. I don't think they really thought that but sometimes he'd have two of those sores healing at once. He had very thin skin.
Not sure if you have one of those special beds that reduce pressure points. During the course of all my time I was able to prevent any bed sores from ever forming anywhere. Did so by trying to keep him as clean as possible and rubbing on all sorts of creams and the like to prevent any diaper rash, etc.
I'm not sure what stage your mother is at right now but it won't go on forever. Thankfully it goes rather quickly as the ability to eat and then drink comes into play.
Really very rapidly when the liquids diminish.
I'm sure you'll survive and be very proud of the job you did.
Not to judge what others have posted, but I've never seen a nursing home that could give the care and love and support that a parent gets from their own child at home.
You're doing a worthwhile job. Very trying and physically demanding, with minimal sleep.
I'll read your Blog and wish you well during the coming months.
Dax
I absolutely agree with the no hydration and feeding tubes.
In my opinon,people do that for themselves, not their loved ones.
Thanks for all your advice
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