Hospice and living the process

My husband is now in hospice. He was diagnosed with GBM in July of 2008, has had two resections, radiation, 2 clinical trials, 5 cases of radiation necrosis related meningitis, left sided hemi neglect, visual field loss, a small stroke, and now has left sided paralysis. He was the smartest man I knew, but now has suffered some cognitive deficiencies. He worked as a pulmonary, critical care sleep and internal medicine physician, and so for the first three years, he did not suffer many effects. then in january of this year, he was in and out of the hospital with psuedomones meningitis. He is now on life long IV antibiotics. His cognitive deficits make the experience very isolating and lonely, since he was always the one I would talk to about things. He is in a lot of denial, even now, when he can no longer get treatment because nothing is working. I find this site useful in that it helps me to see that my own frustration and loneliness is about grief and loss. The loss does not come all at once, or even very quickly. It is a gradual thing over weeks, months and even years. I try to remember him five years ago, and sometimes fear that I won't remember him as the man I married. I feel like I have another child, and I so often want to say to him, to the world, where did you put my husband? When I am in a more centered state, I can see how lucky I am, though. He is kindness and appreciation, and he reminds me daily how much he loves me. I, too, tell him how much I love him, but when I'm sad, I fell so much grief over the daily losses and the daily exhaustive grind that consumes your life in this process of dying.

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Hello,

Thank you for your post. I am so sorry about what is happening for you and your husband. I understand because I am also experiencing many of the same things. My husband was diagnosed in Dec. 2008 with an anaplastic astrosytoma grade III. His tumor was unoperable. He has had radiation, temeador, avastin, chemo. He has an MRI on Dec 26. He was a biomedical engineer and worked until Oct 23 when he no longer could concentrate and see well enough to see the computer screen. Now he doesn't have feeling on his right side and he has difficult finding words, he is very tired and and sort of stares out into space. I know exactly what you mean when you say where did my husband go. Like your husband, my husband is also very kind and wants me and our three daughters to be okay and wants us to lead our lives as normal. Difficult to do as you know. Well, I just wanted to tell you that you are not alone and I will keep you and your family in my thoughts. Warmest. T

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Hello Tina, Thanks so much! It's funny how knowing that another is experiencing a similar path makes that path slightly easier. It is as if I can say to myself that I am not alone, even though I don't wish this path on anyone. I will also keep you in my thoughts and prayers and hope the holiday season brings some measure of joy and comfort!
Thanks again, S

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My husband was dx'd with GBM in June of this year (2012), and he died in the middle of the night in Hospice at the hospital last Friday, 12/21/12. (The Mayans must have only been talking about my husband, not the *whole* world.) I totally get what you mean about him not being himself/like a child, and it's totally frustrating for them as well -- they realize they're like that when they have moments of clarity. Ron lost his ability to walk or write due to right-side weakness after the surgery, so he refused chemo and radiation -- I quit my job and took care of him full-time after the rehab centers weren't making sure he was eating (so dumb), and he lost probably 50 pounds. Once he was home, I could get him to eat three Ensure- (or Boost-) based shakes (with protein powder to add calories) each day: vanilla in the a.m., strawberry midday, and chocolate in the p.m. I would change his "pad" (I refused to call it a diaper -- he's not a baby, and I didn't want him to feel like he's not a real man!) twice a day, which made it a real workout for me for those four months! I was so glad that I stayed overnight in his room those last four nights in Hospice, because when he was going to Heaven in the middle of the night, I know he looked back at his body and saw me lying right there in his room -- he wasn't alone -- and perhaps he also noticed that the other eleven rooms in that section didn't have anyone else with them like he did. So I'm SO glad that I'd go home at about 7:00 p.m. and take a shower, and go back to his room for the night and just stay there all day every day. I learned to appreciate every single day during that whole six-month process. Thanks be to God.

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Thanks grattan33 for your words! I am sorry for your loss! I hope he was in no pain. It sounds as if he knew he was surrounded by love with you and the 'others' he was with when he left this earth. I want this process to be holy for Jim, because I know that death, like birth, is a holy process. I also am realizing that I must accept it for what it is and still know that it is sacred. I'm not sure what I believe about what is to come, and want to learn to be comfortable with those holy mysteries.

As Gildna Radner says, I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. ...Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity.

Living in ambiguity is uncomfortable. So much of life is about trying 'to figure it out' - the what's, the why's, the when's. Our spirit seeks to find comfort living in this ambiguity, and it is in these moments, we may develop and/or question our faith, and ask what does it all mean? What happens when we die? after we die? The answers to these questions are extremely personal and the process of being on this journey is very sacred! I witness my husband's journey each day as he marches closer to the edge of this mystery.

By way of honesty, I must tell everyone reading this that my husband and I are Unitarian Universalists. UUs, as we are known, are a non-dogmatic faith that respects the independent pursuit of faith. At the very center of the tradition is a tolerance and support of our individual faith journeys. Our church's foundation is love and respect. Our church's motto is 'No hell for over 150 years'.

It is certain that at the end of life as we know it, we all die. Personally, I have come to believe in the sacredness of ambiguity. If that which is divine had intention and/or intended for us to know the universal truth of what happens after death, then we would all know and believe the exact same thing. But our faith paths are as varied as we are, and each of those paths are sacred and true for each person experiencing it.

Faith is a gift but one that is difficult to share. Love is also a gift and it is one that can be universally shared..perhaps we can only share our personal faith paths through love. Perhaps, that divine light understands that this is what is needed in this world. For me, witnessing is not about a particular faith tradition, but about living love. If we love at each step, and love abundantly as Jim has, then perhaps we can glimpse that heaven even here on earth. If we live in hatred, dissatisfaction and ingratitude with everything in our lives, then we end up creating our own kind of 'hell'. No matter whether we actually believe in a literal heaven or hell, our lives on earth about trying to create through love a little bit of heaven for others. When we do, perhaps we begin to see light and love all around us. I see Jim revel in his love for others.

Today, I am trying hard to embrace the holy mysteries. I am trying to relish the fact that Jim will live forever, perhaps literally or perhaps not, but definitely through all of us whose lives he has touched. We can choose to carry his love forward into a kind of eternal life, where that love is multiplied for eternity. I have been and am so honored to be loved so ardently and abundantly by such a man as Jim. And so for today, I will try to embrace the ambiguity of what is to come with love.

Merry Christmas on this holiest birthday!

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Thank you for sharing your thoughts and beliefs today. I need guidance. My husband is also a victim of this disease and although I pray every night, I really don't have much faith. Reading your words have given me some comfort today and that I am not alone in this.
Thank you,
Pam

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Amen. Jesus even said: "Faith, hope, and love abide, these three. But the greatest of these is love" (1 Corinthians 13:13). Interesting that He didn't say the greatest of these is faith, which is puzzling to those of us who are devout! :) Probably b/c everyone interprets "faith" differently, but everyone knows what love is. Most faiths actually don't emphasize the love per se between our Creator and us as individuals. ...I've been seeing visions of Ron with our bichon frise, Mustard, who was 17 1/2 when she died just five days after his tumor-removal surgery in early July (I couldn't believe I was losing them both at the same time -- she *is* our child) -- and I've been seeing Ron holding Mustard and with his amazing, constant smile. It's the love that lasts. Doubt doesn't last, so don't waste any more energy doubting -- God is the very force of love, and He loves each of us. Since Ron passed, I've been waking up every morning and I smile with joy, which has been totally surprising! I've been watching home videos of him, too -- that's been great -- you can go to tinyurl dot com slash HeatherAndRon if you want to see the TV show (posted on YouTube) we were on this past March! How marvelous that we got a chance to do that just four months before his GBM diagnosis... (You can see his smile in the video, too) :)

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Dean Heather,
I am so sorry for your loss. I enjoyed watching your video and found it very informative. You and Ron were such a lovely couple. It amazes me how many wonderful people are being taken by this monster disease. Before Jan. 12, 2012 the only time I heard about GBM was when Senator Kennedy died. Now it consumes my life.

You have such a wonderful attitude and seem to be in control. (I especially like your reference to the diapers as "pads".) I will do the same when we get to that point. So far Dean is still eating normally, walking on his own and taking one day at a time.

I'm holding it together but I know the worst is yet to come and it scares me. I will search for my faith and not waste anymore time on doubting. Thank you for your wise words.
Pam

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Pam, you're obviously a wonderful person -- Dean is a blessed guy to have you by his side! Don't worry -- just take it day by day, sometimes minute by minute, as it will affect his mood and personality but it probably won't be consistent. Just remember it's still "him" inside that body, even when he isn't acting like himself. I have a feeling they have reactions they can't always control, and I'm still a little angry at myself for sometimes getting mad *back* at Ron when he'd act angry at me! I learned that, when he would start to escalate (get angrier and angrier, sort of talking himself into anger), I'd walk out of the room and stay out for a couple minutes, and when I'd go back into the bedroom he'd be fine again. Also, I wish someone would have explained appetite loss to me -- the initial appetite loss (in July/August) was due to the surgeries, and Megestrol Acetate solved that for a few months (I'd put it in one of his shakes once a day for a couple weeks); but in November, he was only eating about 1,000 calories per day as he was starting to really go downhill -- food didn't taste good to him anymore. That's great that Dean can still walk! Enjoy every day with him! And see if he can participate in one of the clinical trials -- there's some progress being made with the vaccines -- go to PTcommunity dot com and search for the article "Investigational Vaccine Improves Survival in Glioblastoma Patients" -- I found that very interesting. If Ron had been healthier after his surgery (if he'd been able to walk), he would have participated in one of those clinical trials. God bless you my friend :)

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I am sorry you are going through this. I went through a similar sit w/ my mom. Dx'd July 26th (she was 62) (the disease was too far along for chemo and radiation) Dr's removed what they could and she entered hospice right after that. She was OK at first, but declined and passed Oct 30 this year. It was very hard for my immediate family. My sister and I took care of her, fed her, clothed her, changed her, etc. My Dad also did so when he was not at work. We hired a home health care sitter that did light duty work (feeding, bathing, changed as needed, some light housework). They typically worked from 9-6pm Mon - Fri and we were by mom's side during those times, too. My heart ached at seeing her decline. About a week before she passed away (her speech was 99% gone) she grabbed my hand so hard it hurt, with big eyes. She wanted to say something so bad but I told her I knew she loved us all and I loved her so much. I know she is in Heaven with my G parents and Aunt and Uncle, having a good time!

Know you are not alone. It is a very distressing time. This is a good time to cling to your faith.

So much love to you!!
Love,
Christy

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