a few people have made posts or have started up with hospice in the last week or so. every now and then there is also a rush of questions posted on the forum regarding hospice such as when do you know if it's time, how does one accept that hospice is needed.
i was first approached about hospice back in january. it was right after russ had his first brain bleed and he was in the hospital. the MD covering for russ' primary was the one who brought it up. my first reaction was shock, not because i was against it but rather because i didn't think russ would qualify. about 20 years ago (gosh where did the years go???) i had been an oncology nurse. i was used to referring some of our patients to hospice. the rules then were much different than they are now. a MD had to state that there was less than 6 months to live and if you lived longer you had to go off hospice. also one had to be homebound, meaning they were confined to the house.
my first reaction to the MD was, "but russ is not homebound, he goes to daycare". needless to say i was quickly educated on the different guidelines in effect now and agreed to speak with the hospice affiliated with the hospital. the admissions nurse was nice but pushy, wanting me to sign russ up immediately. i had had interactions with vitas hospice on a professional level plus i knew i would have to talk to my sister regarding this possibility.
sue initially had a hard time accepting that this should be a road we should explore. i was glad when she called a cousin of ours who works in hospice to get her point of view as well as encouragement to try it.
unlike sue and others in the country trying to decide whether hospice is appropriate or not, it was a not a difficult decision for me for many reasons.
the decision to make russ a no code had recently been made. even though some hospices will accept people who are not a DNR, i knew that was a step in the right direction for using hospice. i also knew from my oncology experience how wonderful hospice and their philosophy is, and especially how supportive they could be. i think the ultimate decision pushing me in that direction was a discussion i had had with russ 3 summers ago. we were driving in the car and he tried to describe to me what it felt like to him to know he had alzheimer's. russ described it as "my brain feels like it is one big mess of cobwebs, and i can't clear them out to think straight." what a wonderful description on his part. he also went on to tell me that he wouldn't wish this disease on his worst enemy and if he had a gun, there were some days he felt like ending it all. russ admitted deep down he could never take his own life but yet he didn't want to live his life in such a fog. he would also tell me that if God saw that it was time to take him, that that would be ok.
i know he didn't share that with many if anyone else; my mom told me he never expressed it to her. after my mom died, russ said on a couple of occasions, "gene had so much life left, it should have been me, not her."
so for me at least the decision was an easy one. i truly believe it is what russ would want too, not to be keep alive longer than need be. he would not want a lot of testing done as things arise, he would want to let nature take it's course. he does have a living will that states no life support or heroic measures so that helps to make this russ' decision, not solely mine.
as much as russ loved life, this is not the life he would have wanted for himself. he would not want to be a burden on his family. he would want to be with gene in heaven where he could dance and laugh again, go out to eat and travel all over heaven. russ would also want to be comfortable and not in pain which is what i want for him as well.
no ones knows how much longer russ has to live. he could go quickly which is what i pray for or he could linger. he has been on hospice now for over 6 months. i feel truly blessed that he has a wonderful nurse in janine. his aide victoria and the nurses at respite treat him caringly as well. what i do know is that along with hospice we will keep him as comfortable and happy as possible until God calls him home.
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4 comments:
You know if you had written this a couple weeks ago, you would have made calling hospice a lot easier for me. I will forgive you though. LOL
I had NO idea people could be on hospice for so long. We called hospice in for my grandfather 3 years ago and he died one week later. One year ago we had to call them again for my Uncle and he died less then a week later. They were helpful but it all just happened so fast... Thanks for posting about this. I just did not know there was another way it could happen. thanks again love :)
Alzheimer's is changing hospice. My group has many patients with Alzheimer's or some kind of dementia at least. This disease is forcing all of us to rethink care.
I was concerned that everyone might get a too optimistic impression about hospice. Caregivers don't need more disappointment.
That's one thing that irritates me about all these positive articles about drugs. Make you think a cure or a treatment is just around the corner.
I can only imagine your shock when the doctor suggested hospice. Even though my mom is getting worse, the words from a doctor would probably still hurt.
You always write with such peace in your words - I find it very comforting.
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