Tough Decisions…

As a part of my effort to be prepared for the worst as I hope for the best, I’ve been under home hospice care for the past month and a half.

In my case, home hospice care means I have a visiting nurse coming by about 3 times a week, checking on my health status, taking all my vitals and talking to me for a while about how I’m doing. It also means that I get a weekly visit from the hospice social worker, who helps me to identify, understand and make decisions on a variety of really complex issues.

This past week, my social worker (Celeste) came by to discuss one issue that I thought was rather cut and dry, but proved to be a whole lot more complex.

… and that is, whether I would prefer to die at home or in their Hospice House.

Well, I thought that was a pretty simple issue when she brought it up, and told her that when I am in decline and dying, I would of course want to be at home, surrounded by my loved ones.

Good enough, said Celeste, but we’ll probably need to bring in a hospital bed so that you can be properly cared for. Any idea on where in the house it ought to go?

My wife and I bounced around some options and finally concluded that we could set up my hospital bed on the first floor (Celeste is concerned about me going up and down the stairs) in what is now our TV room.

But there’s a rub…

My son and 3 stepdaughters like to catch up on their TV watching on weekends, and there would be no place for them to sit, nor would I even want to be around while the stepdaughters watch those teenage situation comedies they are inexplicably drawn to. We figured a workaround for that (the kids could watch the TV in the master bedroom, since I won’t be there anyway).

But then there we realized that if you put me in a first floor room, I have no access to a shower or bath. Hmmm… OK, we’re going to have to think about that some more.

Another, rather odd issue occurred to me: if I were to die in the TV room, would the kids be creeped out or concerned that my spirit may be lurking in the room.

At about that time, my stepdaughter Elinor (15) arrived home from school, so I asked her how she would feel about the TV room were I to die in there.

Oh yes, she answered immediately, I’d be totally creeped out and wouldn’t want to go in there for at least a month.

So I wasn’t too far off the path by surmising that that would be a problem.

Do you have arrangements made to have friends or family with you during the days when Jeanne is at work? With her new job, after all, she’ll be a 45 minute drive away 9 hours per day.

Well, the only relative nearby is my daughter, Ashley (28) who works full time and would also be a good 45 minute drive away.

And all of our friends work. Most, a good distance away from here. So that’s not an option. There’s a woman (a retired nurse) who lives down the street from me and is always around, so that’s a fallback option, but we haven’t spoken with her in over a year.

Now I’m investigating the Hospice House option, as the home option (when my health starts going into the final decline) seems to be fraught with problems.

But without Celeste, and her loving courage to ask and flesh out the implications of the tough questions, I might have gone merrily along my way only to find myself in a real bind when I need help the most.

There’s a special place in heaven for people like Celeste.

 
 
Discussion

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Comments
1.
On November 24th, 2008 at 5:29 pm, Roger Bourland said:

Celeste is indeed a blessing and the issues she raises are solid gold. I’ve been very concerned about precisely this.

The hospice house is a gentle, loving and absolutely appropriate place to be. It will be different from home but so convenient and practical for everyone involved that I can’t imagine a finer solution. None of you will ever regret this decision.

Love,

Dad

2.
On November 24th, 2008 at 5:56 pm, Ed said:

Damn,

D: None of the above

Sigh,
Andy thanks for taking this discussion on,
with us.
I appreciate you sharing it like this.

I’ll be back to comment on your post.
In the mean time, I did leave
both numbers on your machine if
you have a minute filled with nothing better.

Warmly,
Ed

3.
On November 24th, 2008 at 7:58 pm, Kelly said:

Andy, my heart goes out to you and all the decisions and issues that you are facing right now! I am glad you are at peace…and I am sure you have had a great life, full of love and family…and that is truly a blessing! I’m glad I got to see you in SD…how many years ago??? You are in my thoughts and prayers! Kelly (your cousin!)

4.
On November 24th, 2008 at 9:35 pm, Ken Homer said:

Dear Andy,

Hmm… Very tough issues indeed, and no easy answers in sight…

One thing that comes to mind, is if you are wanting to be at home rather than at the hospice house, how do you feel about spending your final days upstairs where you do have access to a shower and/or bath? Is that a viable option?

Of course I’m in no position to trouble-shoot here, so I’ll leave it to you, your family and Celeste to work those technical details out.

What does catch my eye in your post is the comment of your step-daughter about being creeped out.

Aside from the benefits of not watching TV for a month (could any teenager stand such thing?!) there is the larger issue that is hinted at here about helping her to deal with your death in a way that grounds, strengthens and prepares her to enter her adult life with the power and grace needed to face life in a world where death is a potent reality.

Although I lost my own mother at age 9, several friends by the time I was 25, and pretty much all of the generation above me by my 32nd birthday, it was not until well into my 40s that I began to reconcile myself to the inevitability of death and to see death not as a defeat, but instead as the ultimate surrender into The Immensity of Human Experience - a stance that has alleviated much suffering for me (and for many around me).

Growing up in my world, death was to be feared, fought against and kept in the dark. It was not polite to speak of it and if it happened to someone you loved, you just kept the grief to yourself, or if you were really wrecked, you went to a therapist and moved on, but you certainly did not talk about it - too morbid! Hence the majesty and mystery of death became occluded by a toxic shroud that caused much greater harm than the loss of life which death demands as its ransom.

Nowhere in my early life was there a model of how to stand in the presence of death in a way that made me stronger. No one taught me that facing death squarely could make me more compassionate, more loving, tender, honest and better able to live my life and to love others more fully. Not until I began a serious study of Buddhism did I learn how other cultures through time have dealt with death. To cite just one example of people who do not see death as the enemy, Tibetan lamas train for years to be aware that death is always one breath or one heartbeat away, and in living with that knowledge they are always treating each present moment as their last. That acceptance provides them with a tremendous equanimity as well as knowing where to focus their consciousness when their heart does yield up that final beat.

You have before you an opportunity to engage those around you, especially your children, in an inquiry that can leave them far better prepared to live in a world that seems so much more dangerous than the one that you and I grew up in. A world where the ability to face fear and access love and compassion will be of ever increasing importance.

Death is scary stuff, dealing as it does with the ultimate existential questions - what happens when I die? How will my family deal with my absence? How can I remain a presence in their lives if my body is not around to hug them? How will they know I love them when my voice is silenced? What can I leave that is of lasting value?

These and other questions that co-arise with them have no “answers” of course. But being unanswerable does little to diminish the importance of raising and exploring them with those closest to you. That exploration or lack thereof, will color for those you leave behind the way in which they will chose to relate to the inevitable as they make that slow but steady progress of preparing to meet their own death.

There are huge fears swirling around and within the question of death. Very few people find the grace to handle these fears skillfully - after all it is fear’s job to rob us of skillful means and too keep us small. But I sense that you are beyond such smallness now. The more you are able to openly talk about the fears which death raises within your family - and my guess from knowing you and reading your blog is that you are pretty fearless already - the greater the likelihood that your death will become your greatest gift to those whom you love.

Perhaps you are already doing this - I don’t know, the time and distance between us is great and my ignorance of your life even greater. But on the off chance that you have not considered this angle, I hope it might shine some light on your situation. I do so appreciate your willingness to post what is happening with you on your blog and I will continue to keep you in my heart and healing practice.

Sending love and blessings from out of your past,

Ken

5.
On November 25th, 2008 at 8:56 am, Erin Brenner said:

Andy,
I’ve been putting off writing this post because I just don’t know what to say. I’m heartbroken by the news and the seemingly unfairness of it all. I was blessed to be able to join ClickZ and work with you and Ann and the rest of the original team. I still try to take of your baby every day, helping make it the best it can be (though I feel we often fall short of that).

I’m glad you’re retaining your good spirits, and I hope they buoy you up when you need them most. You’re in my prayers. And if you need anything from me, please just ask. I’m still just up the road in Haverhill.

Peace,
Erin

6.
On November 25th, 2008 at 11:16 am, Tamara said:

Dear Andy & Family:

Such strength you show. My personal experience with the hospice home is with my Father, 3 years ago. He had his ups and downs and they were nervous about sending him home. As it turned out, he stayed and all the family came and went and spent all kinds of hours with my Dad. They were so loving and caring and always gave us our space when needed. I have no regrets whatsoever. In fact, to this day, most of my donations go to Hospice because it is an absolute necessity in our daily lives.

I work at The Colonnade and Andy, I’m so glad that your Father shared your story with me. It helps me to understand what is going on with your parents as well. God bless you and your family.

7.
On November 25th, 2008 at 2:58 pm, Randy Cassingham said:

Hospice is awesome — and a far underappreciated service in our culture. A standing ovation to those who take on this terribly difficult job. What special people they are.

8.
On November 26th, 2008 at 11:09 pm, Carolyn said:

My experience is that now is the time to be gathering options and the decision will come naturally once the time is right. Until then, enjoy being with those you love and takes lots of pictures. Folks start to get afraid of asking to take pictures for some reason, and yet those pictures are priceless gifts in the decades to come. And I would love to come over for a chat. We’ve always been a good combo for a loving and frank chat. XOXOX CSG

9.
On November 29th, 2008 at 12:41 am, Danielle Dery said:

Good day Mr Andy,

(*From the Affiliateshowcase-site of Mr Ken McArthur-Blog i get to your Blog 13 nov., 24 nov. Andy’s health Update & Tough Decisions…)

I am in Canada, close Montreal in the snow now. But understanding completly your lifestyle now, feelings, questionning = The fact is: i am chronic sick from Fibromyalgia so, i past by many events you describe in this Blog.

* Seems nobody is there for us then, when we need just… few listening, glass of water, emergency toilet, hygiene daily… i was alone home with my dog Cita, a female sheperd well trained! helping me to get UP on feet when i was falling on floor… believe it or not!?

*Same for eating, weakness, lost strengh, bed-ridden, not walking, needing pampers but never i agree to wear that sh*t panties for hours!!haha

*I want let you know= your decision to be at home in final moments IS THE BEST! Yes, it is the Best you deserve dear Mr Andy!
*Even more & lot around you will disagree, i have a deal to offer you if nobody is there or wants to be there for you= ME I WILL COME ASAP OK with pleasure! Just call, email, and i come asap by trains or planes!!
Phone: 1-450-777-5469
Mail: pommy1955@yahoo.ca

I agree we don’t know each other, even english is my 2nd language, i born french in Quebec city area, but i Will Come, i CAN BE THERE FOR YOU!!
*I did it before with a desperate couple from Texas, i met them in bus in CA. I just need: room & shower. My Fibro is stable, but i don’t eat really i drink milk +my soya proteins, you see nothing difficult. I had many of the symptoms you described, i used Nutrition to heal. My Ph.D. thesis was about sickness related to radiations! Maybe, we have a LOT to share, don’t be shy to contact me dear Mr Andy.

I am 53 at home now. I was Biologist Ph.D. & Translator, i do Reiki by distance daily. I explain how to use simply science articles from http://www.PubMed.org for update, it’s Usa National Library of Medicine site.

Truly, Friendly,
Wishing you the Best & Hope!
Take care!
Danielle ….there for you! * NAMASTE!
Love & Light of Angels with you!

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