Hospice is killing my father!

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I understand that hospice is SUPPOSED to be COMFORT CARE!!! The facility won't give my father any water because they say he'll choke on it but he is sure able to swallow all the sedative medications they shoot down his throat every few hours! How is this COMFORT care and what can I do when my mother is responsible for his decisions since he is so medicated??? PLEASE HELP, HE HASN'T HAD ANY WATER IN DAYS!!!

15 Comments

Huge hugs to you. This is a horrifying experience.

Try to keep calm. Are the nurses using sponges to keep your father's lips and mouth comfortable? You should see little sponges, like sort of triangular Q Tips, being used.

Is your father conscious? Is he asking for water?
Dear abandonedsoul,

I'm so sorry to hear what you are going through. I know its very painful to see your dad in this condition. Please check with the doctor and nurses. I hope they can help you. My thoughts and prayers are with you.
What is your mother's reaction to what is happening with dad?

Hospice care is for the family as well as for the patient. Ask to talk to the social worker or chaplain (if that is meaningful to you) for an explanation of what is happening. Ask how he can take the medication OK but not water.

This is an exceedingly painful experience to go through. I am so sorry. I don't know if it is any consolation but it would probably be an even harder experience if hospice weren't involved.

To be on hospice your father had to be evaluated as being in the very end stage of his illness. He is dying, and would be if he were on hospice or not. This is exceedingly hard to accept, but perhaps talking to the hospice staff will help somewhat.

Your mother does get to make the decision for your dad. Please realize that this is agonizing for her, too. She is doing her very best to act in her husband's best interest. Please don't blame her for hospice "killing" him. That is not what is happening.
Thank you all for your swift responses... Yes to the sponges question but they're just swabbing out his mouth with some kind of diluted mouthwash mixture and he holds on to the sponge with his mouth because it's the only moisture he's being given. I asked him if he wanted a drink of water to wash down the obviously foul tasting medicine and he said yes but then he didn't seem to know how to use the straw and the nurse took it away from me before I could put my finger over the opening to hold water into it and use it sort of like an eye dropper and told me that he would choke on it anyway because he has lost the use of his neck muscles to swallow but this is directly after he swallowed four syringes full of different medicines... I just don't understand how he could decline so quickly. Last week he was still up and "playing" out in his garage and today he can't even speak and I feel like he has a terrible look of horror in his eyes as if he wants to respond but can't...
Plus he was only on 20 mg of morphine 4 times/day and the next day he was upped to 20 mg or morphine, 5 mg of methadone, 1/2 mg of lorazepam, plus holidol and 2 different steroids. When I asked why the increase they responded with, well, he's getting agitated. He's only agitated when they wake him up to turn him over, otherwise he has been remaining very calm. My mom says that she doesn't know what else to do and she is not as knowledgeable about prescription drugs as I am so she doesn't realize how many sedative drugs he is on regardless of the dosage.
Is there anything I can do without any legal POA?
Yes, there is - you can speak. If your father says he wants a drink he should be made aware of the choking risk. If he still wants to attempt to drink, it's up to him. If the nurses continue to refuse to assist him, go and find a ward manager or a senior and ask for intervention.

YOU WILL GET NOWHERE IF YOU ARE AGGRESSIVE OR UNREASONABLE. It is imperative that you keep calm and keep to the point: that your father is asking for water and it is being withheld. You should continue to make the point that your father is still able to swallow medications, but do it calmly. Get angry, you'll be out on your ear, your father will lose his advocate, and your mother will lose her only comfort.

These are the current NICE guidelines on drinking at end of life (they are of limited help to you):

Hydration – signs of dehydration should be checked for every day and help should be given to keep their mouth and lips moist. People who do want to drink should be given help to carry on drinking if they can still swallow. While they are drinking, it is important that they are checked for problems with swallowing or drinks going down the wrong way. However, some people may not want to drink in the last days of their life, and swallowing may become difficult. Their doctor might suggest giving them fluids through a drip or tube. This might make them more comfortable, but for a person who is already at the end of their life, it won't necessarily help them live longer, and it might not be the best option for everyone.
Why are they buggering about with a straw? Use a 5ml teaspoon.

Keep in touch. Hugs.
Trying not to be a downer, but the last 48 hours of my dad's life were spent with him begging to get a drink of water. They let him suck that stupid sponge thing and swabbed his mouth. My only regret, 3 years later, is that I didn't give him water. I was just talking to my mom about it yesterday. If it is bothering you, follow your intuition and give him a sip of water. Sending love and blessings, your way.
DON'T DO THAT!!!

If you attempt to give your father water yourself they will throw you out of that room so fast it'll make your head swim. Keep insisting on patient-centred care until they agree to a trial swallow.

But if he can swallow Oromorph, he can swallow thickened fluids. Get some plain water thickened and ready.
I know you are upset about all this and it is very traumatic to watch a loved one suffer. I'm so sorry you and your mother are dealing with this. You can purchase a medication syringe at the drug store and try giving him some thickened liquid just a few drops at a time. You can try ice chips, again just a tiny bit at a time. You can use an oral swab with just plain water. Maybe a little tiny piece of watermelon. But toward the end it won't make much difference. The liquids may run out of his mouth, the watermelon will be dug out unchewed. We just last month went through this. Mom was at home, not in any facility. Nurses came 3X a week. Aides came daily. I administered the pain meds. Mom was in extreme pain and I gave her minimum dosage because I was afraid of "killing" her. I regret now that I allowed her one single moment of unmedicated pain.

The nurse told me on Friday they would begin 24 hr attendance when they thought she showed the signs that death was near. She passed away unexpectedly and quickly on Sunday. Her time schedule, not ours. It's never easy to lose a parent. It feeds into our fears of abandonment. I will pray for you to find peace. Please use the counseling service that hospice provides. Bolster your mother, she needs you.

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