Back in the spring of 2010 David was in the hospital for the first fall. At one point during his time in rehab he asked us to call hospice. He wanted to go ahead and die. He was extremely depressed at that point and I believe he thought that hospice would take measures to end his life. My sister and I discussed the matter and I told her hospice doesn't take measures to end a person's life, but if a person chooses to die by starvation, they help that person stay as comfortable as possible. I also stated that he was delirious (he thought he was in a prison and that the guards were trying to kill him, or in a hotel and the nurses were the cast of a theater production). I said if he chose one minute to end his life through starvation, he'd be asking for french fries two days later. He wasn't close to death; therefore, this was a momentary thought.
This is a different day and a different situation. He has a housemate who's daughter rushed her father to the hospital for his fourth trip to the hospital for his fourth heart attack this year. He's Dad's age. He's been in ICU for three weeks now. I mentioned to the caregivers that I didn't want Dad resuscitated or whisked to the hospital if he stopped breathing (as did her father). That I was going on vacation shortly and I just wanted to reiterate our wishes. They had me rewrite a Do Not Resuscitate letter, but stated the call of whether or not to take him to the hospital was with the doctor, unless he was in hospice's care(!) They appeared nervous to be having the conversation.
I had to do a little soul searching on that one. Hospice? Dad is actually thinner than the last video. I asked the manager if he was eating. I felt his shoulders and arms through his shirt and there is no meat at all there. His legs are completely atrophied. Sticks for bones and big knees. The manager said he ate his cereal every day. Since I am of the "Feeding Tube Out" school of dying with dignity, I decided it was time to so a little research on hospice (of which I know very little.) Our past experience with hospice is that the family acts as the nurses and caregivers up to the bitter end. I am already breaking that pattern now with the group home, but maybe it IS time to call in hospice. (He can receive it care in his current home.)
I went to the web and found on one hospice site (there are many) a list of tips for when you know it's time.
Frequent trips to the emergency room or a recent hospitalization
Decreasing appetite and weight loss
Increasing weakness or falls
Requiring more help with everyday activities
Multiple changes and adjustments to medications because of ineffectiveness or an increase in the number of medications required to control symptoms
Increasing shortness of breath or need for oxygen most or all of the time.
Family feeling overwhelmed and in need of more resources.
Here's a few that I would add:
Living a life no sane person would choose
No chance for improvement
Mental anguish beyond what one should have to endure most of the time
Here was more criteria per the website:
In order to receive hospice care, the patient must:
Be diagnosed with a terminal illness including, heart disease, neurological disease, lung disease, renal disease, cancer, Alzheimer’s, dementia or other conditions.
Have a medical referral from a physician.
Have a life expectancy of six months or less.
Have a desire for comfort-oriented care rather than curative, aggressive treatment.
He will not be cured, regardless of the treatment.
Another quote from the website that spoke to me was:
"The earlier you call, the more we can do to help you. Often, we hear from families that they wished they had known about hospice services earlier. We’re glad you found us; you have made a positive step in affirming the value of life."
In every case so far in which one of our family members was dying (Dad's number four), the designated caregivers kept holding out hope for a miracle (Cindy's case) or had unrealistic expectations with regard to life expectancy (Mother's case) or felt obligated to be the only caregiver because of the loved one's wishes. I'm not in denial about Dad's dying. If he lasts a year (doubtful) then I can live with being a few months off. Nor do I know what hospice can do that is very different from what he's currently getting. I just have to think it's more humane not to keep up what has basically become pushing food and meds on a man who doesn't want either. Having him take drugs to calm him down enough to force him to take MORE drugs cannot be the only option.
I will talk to hospice and his doctor next week to take the next step. Here's the website.
http://www.chot.org/site/402/when_is_it_time.aspx
If anyone would like to come see him, you can stay at my house in my guest bedroom anytime. Earle, Sarah and Mary came a week ago. I think it went pretty well.
I'm on Facebook. Please don't spell out the name of the blog. Just refer to it as DPW or "the blog" so we can protect Dad's and my anonymity.
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