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Palliative Care - a bit long


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I spoke of this on another thread, "X-Rays - Not Good" but wanted to come on over here and let everyone know how it is. We began this journey in January 2004 and here we are a whole year later, and a lot of it was good, too - it was worth it. Hubby was sick from treatments many many times but many times he wasn't. We had birthdays, our anniversary, fireworks, family, friends, visitors galore, phonecalls from the distant past, we raised a crop of gourds and when we planted those gourds, no way I thought he would be here for the harvest but he was. He got well enough to take long walks with me and he and I had some of the best talks ever and we are closer than ever, there is something so special between us now and that is forever.

So, here we are, a year later, and the chemo didn't work at all and the chemo before that didn't work either. He's been debilitated since Thanksgiving and it just keeps edging worse, week by week. And each time the tests are worse. We knew it was coming. Finally we had the talk with the doctor and we knew it was here. She had other offerings but nothing much, nothing we wanted to try, not really. And now it is Palliative Care. We had lots of discussions and we really think this is our best choice. Enjoy what we have.

On the basis of only a few days, Palliative Care is Not Bad. It is kind of a relief in a way. Just think, no more chemo. No more blood counts dropping and spraying everything in the whole house with Lysol. Not that this is what we wanted but it has come. Hubby has plenty of meds. He has no pain at all. He said the other day that he felt contented. He said yesterday what a good wife I was, what a help I am. He is letting go of troubles and seems happier in a way. He sleeps a lot. When he is awake he is pleasant, we talk, we laugh. When he goes back to bed I lay beside him and we watch TV and I rub his back. The little black dog tries to nose his way in between us and usually succeeds.

He is losing ground slowly at the present. Two weeks ago he could walk to the car. Now I back the car up to the front porch. Two days ago he wasn't sure he could get to the porch but he did. He needs more help with self care now but nothing I can't do with him. We just take our time, no rush. Nothing is so important it has to be this minute.

We have a few tests on Friday to see just what is what. WE might have more treatments for new problems but on the basis of comfort. Sometime next week we will be signing up for Hospice, here at home. It will be nice to have some help, nice to have someone to call with questions. "Nice" being a relative term. He is not so bad off right now, I am thinking we might still have a good bit of time together but I really don't know. Some people stay in Hospice a long time, some don't. I expect I will be around a long time. I have met some really good good people here. Good people are so important in a good life.

I don't mean this to be so sad - though it is - but rather just to say we are doing okay today, which is all any of us has. And we are glad to have the meds and the help and we are glad to have the whole year we just had. We are glad it is not over yet. It is just different.

Take joy in every day, it is all around you. Life, love, and be happy. Why not? If not now, when?

Sorry I am a bit slow on answering the PMs, grin. I know you will understand. We are okay.

Blessings, Margaret

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Oh dear Margaret,

You are so strong and so wise. I guess in a way, I envy the talks you and Jim are having. Earl would really not discuss his illness. When the doctors said it was time for hospice, that there was really nothing more they could do, Earl made some reference to losing the war.

Earl only spoke happy thoughts with me. I too would lie in the hospital bed with him and we would talk about times past and laugh at times. I think it bothered him that I was doing everything for him, but I told him that it was my privilege.

Margaret, try to indelibly print these days on your mind and heart. You will want to recall them. I wish I had taped some of Earl's conversation or borrowed one of the kids video cameras. I do have one tape from his surprise 60th bday party and I almost taped over it. But the God of idiots working a VCR was on my side.

Yes, your post is sad. But it is so full of love and compassion and wisdom.

I am thinking about you so much these days. Watching this happen to the love of your life, your best friend, is very hard.

We are here for you and care about you Margaret, just please remember that.


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I would like to just copy word-for-word what Katie said. My eyes are burning with tears. You touched me deeply. You have quite a way with words, and those words reflect your heart and your love. I don't think I could ever be so brave. You are quite a lady!!

All my love and prayers for you, Jim, and your entire family.


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Sounds like you have come to terms with what lies ahead and are at peace with your decisions.

I takes alot of courage to do what you are doing.

Hoping for a long time together, that Jim hangs onto his health so that you two can build more beautiful memories together.


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I can't add much to what has been said....but what a blessing you have been to each other....the only suggestion I would make is to journal some of the conversations you have, keep notes of funny, sad, poignant things that you talk about.

I journaled some of the conversations I had with my Mom in the last weeks....have read through them recently and it surprised me how much I had sort of forgotten. OUr minds are so busy with all that is going on, we need that little reminder to keep those wonderful memories.

You will be in my thoughts and prayers.....

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Margaret - I do so love reading your posts. You are so eloquent and wise - you have a way of changing the way I look at things for the better. I am so sorry that the reason for this posting is sad, but as you say, there is still so much to be grateful for.

You have been in my thoughts a great deal, and will continue to be. My very best wishes to you both.

Love Karen

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I can't begin to tell you what your post meant to me. You somehow in your words brought me peace about my Dad. I don't know why, I don't know how, but you did.

I admire your courage, devotion and love. May God wrap his arms around both you and your husband and keep you safe. I will be thinking of you and praying for peace. Love, Sharon

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Dear Margaret,

I'm sorry and I sincerely hope that my post is not inappropriate, but I wanted to thank you for what you wrote. I cannot explain why, but reading it gave me comfort; not comfort in your pain, but in the peacefulness I feel from your words.

I cannot convey to you (and the many others on this board) how much I admire your strength and love. May you continue to find peace in the days ahead.

Love to both you and Jim.

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Margaret, that is sad in many ways, yes it is, but in another way it is very, well, nice. Nice that you and your husband have this time together, nice that he seems so content and nice that you are so, well accepting.

I think you are my hero.

thanks for sharing, it really helps, and that is what we are here for.

God Bless,

Karen C.

p.s. and yes, it's wonderful that he talks to you about it. that really helps in my book.

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Dear Margaret,

I think there are many, many people here who can feel your pain and your joy. When I say joy I mean that there is something special between those who are so close to the person who is suffering. Joy because you savor the time left, joy because you have a chance to say goodbye, joy because you learn what it really means to give of youself completely and ask nothing in return.

My mother is loosing her battle, she knows it and I know it. She has time to make plans, this is good for her. I asked her the other day if she had her choice of knowing in advance that her life was ending(as in her case) or to not know by some unfortunate event that would end her life without warning, with no hesitation she said she would want to know. "I have time to get ready" she said.

There comes a time when one has to make peace with one's situation and accept what the future holds. I believe when that time comes for each of us we know it. It sounds as if you are at peace.


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