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Reply by Xenia

20 Nov 2014, 2:54 AM

Hi Tuna and all:

Your description of your husband in denial, not the Nile river, denial that he is sick and has no pain. I do believe we are married to the type of man. What you described is exactly what John tells the nurses. I have no pain, yeah, after 3 mg of hydro morphone and 9 mils every12 hours and extra for break through pain. You have no pain...What a pair. Somehow I feel and think it is their way of coping and knowing that if they deny the pain and reporting it they are not ill.

Your description of digging trenches is so realistic. I often wonder if I like you want it over with and then feel guilt.

The art of dying with cancer has never really been discussed. One may hear that someone was very ill with cancer but no discussion of what one goes through for the patient and the caregiver. I do believe a home care caregiver is much different from what the nurses in hospital do. They get to go home and are relieved during lunch break, etc. etc. We do not get the luxury of having a break unless the get some respite. Of course, the other alternative is to place our husbands in care and this we do not do. I could not place John in care as he has such good days and I have worked in care homes and would hate to see him sitting in a wheel chair with others, sleeping or dozing in the midst of many others. At least at home the children come and visit, we watch TV what he can see as he has lost much eyesight, macular degeneration, his hearing is nearly gone even with his hearing aides, good thing I have a loud voice, got that from yelling at my 9 brothers. lol. True, I come from a very large family.

John is asleep now and it is close to 7:00, dinner over and I will take a rest. Tomorrow is his 86th birthday and everyone is coming over. Have everything ready to go. Kids are bringing other items for dinner so it should go over well.

Off to bed, to sleep to dream, Yeah Shakespear, if only we caregivers could.

Hugs to all.

Xenia

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Reply by tuna

01 Dec 2014, 1:55 AM

Denial....
Xenia, it is almost like we are married to the same man. I nodded and nodded my head as I read your post. im wondering how the family celebration went.

Its been day after day after difficult day here. I want off the rollercoaster.
My dear hubby was having such difficulty passing urine this week. I called the home care nurse and she came within an hour and catheratized him. It's in dwelling. Upside, he no longer has to get up and use the washroom every 10 minutes.
Today he asked me if the catherater has anything to do with having cancer....such difficult conversations. He is quite sleepy, yet forces himself to try to stay awake. He is afraid to sleep, as he is afraid he won't wake up. Such A tormented existence. My heart aches for him. He won't lay down. He sits up, and jerks his body to stay awake.
The Hospice nurse that came to do his cathetar was so kind. What a special woman. No questions, she just came in and saw the problem and did it. She was kind and professional.
Strength. Patience . Kindness. Empathy. Control. All these things are needed above and beyond love. I am lacking in all the above.
How much longer?

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Reply by jorola

03 Dec 2014, 10:21 PM

Tuna I wish someone could give you the answer you seek. I wish something could be said to ease your husband's fear. I wish so much for you and him. I do know that despite what you think you have strength, patience, kindness, empathy and control. What you are unable to to do sounds like you have a wonderful nurse on that journey with you. Know my thoughts are with you both.

Jodie

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Reply by tuna

07 Dec 2014, 6:10 AM

Thank you Jodie. In truth, Cancer has a lot of whys and few answers.
From week to week I see a change in DH's condition. He is now losing the battle to stay awake. He sleeps more and more. I did get him out for a drive this afternoon. Our goal was to go get a coffee. When we got into town, he was too tired to get coffee, so we headed home.
Last night was a hoot. He woke up at 1 am, and thought it was morning. I heard noise and got up. He had changed his catheter himself from the night bag to the day bag and was sitting on the couch. I was so so tired, I just took him by the hand and got him back into bed. My tired state caused me to not check on how well he did with changing his bag by himself. My bad. In the morning he told me his cathetar wasn't working anymore. I checked, and he had twisted up the tubing when he changed it. I fixed the tubing and he was back in business. I made him promise not to change his cathetar bags by himself anymore.
DH is pretty fussy about what he wants to eat now. And thats fine by me. He doesn't want protein shakes or supplements. He wants cereal or toast. Thats pretty much it. And the occasional vodka and OJ. I don't want our last conversations to be fights about food. So, I let him dictate what he wants to eat. I am learning to pick the battles. Actually, I just don't want any battles. We have been married for 21 years, and never ever had a fight or had bad words. Why start now?
Today he asked me if the Hospice nurse thinks he is going to die. I gently reminded him of the purpose of Palliative care. When there is no hope of a cure, we focus on comfort, and left it at that. He wanted to know how much longer he has to suffer this dreaded disease. I have no answer.
He no longer enjoys visits with friends. He found his vist this week with his brother to be a bit much.
After I got him settled in to bed, I slipped out to the gym. They were only open for another 1/2 hour. I thought better than nothing, and had a great run and squeezed in a stretch. I take what I can get these days.
I think it will be a realtively peaceful night- compared to last night.

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Reply by tuna

21 Dec 2014, 6:47 AM

"Not knowing when death will arrive requires a kind of endurance on the part of the family. It’s like being asked to run a race with an unknown finish line."

I found this quote on the virtual hospice website tonight. Words of pure golden wisdom and genius.
DH's condition is changing rapidly. As I reread through this thread, I realize just how rapid. He sleeps about 20 hours of each 24 day now. His family have demanded to know why he is not in the hospital. I continue to respond with grace and dignity and kindness. I restate my husbands wishes, and remind them that meeting his desires are what I focus on.
I met with a wonderful Hospice counsellor this week. She assured me that my feelings are normal and helped me make sense of my husbands denial and his need to battle when he had no more strength left to battle. She said that "people tend to die in the same manner in which they lived their life." So much truth in these words.
Feelings are feelings, not good or bad , right or wrong. Acknowledge and then let them go.
Today I thought "I just want to be happy again". Then I immediately felt bad for feeling this way. Tonight I reflected on this feeling of wanting to be happy again. If it was my husband that was the survivor and I was dieing, I would want him to be happy again too.
This week I have to meet with the funeral home director. I have been avoiding this step. I tried to do it all through email. It can't be done through email.
“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” - Unknown
Grace. Dignity. Calmness. Understanding. Run this race to the finish. There will be a rainbow again someday.

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Reply by JennJilks

21 Dec 2014, 2:18 PM

Good for you!
Stick up for yourself. I've learned so much, going through all this. It seems as if you are already wise.
They say we need more $ for palliative care, but we simply need education, moral support and dialogue.
Good for you for reaching for hospice support. It's tough to do.
You are in our thoughts.

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Reply by jorola

21 Dec 2014, 3:53 PM

Excellent quotes tuna. They really capture the essence of it.

Hugs, peace and strength to you.

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Reply by Nouce

21 Dec 2014, 7:24 PM

On that race with you, no known finish line--I love this metaphor! Thank you, Tuna!

Nouce

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Reply by tuna

28 Dec 2014, 3:19 AM

Thank you to the team who maintains this site and the beautiful people who post messages of support.
The palliative team was here this morning, and we switched to under the skin butterflies to administer medication to my DH.
This feels surreal. What an honor it is to support someone in their dying hours.
Its been a beautiful day. Our children came and we all sat on the bed together as he started to let go.
Its going to be a long night.
Thank goodness for Hospice. My husband so wanted to pass away at home. He is in his home, in bed. What a gift
-------------------------feeling grateful and peaceful

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Reply by BevB

28 Dec 2014, 4:02 AM

Hi Tuna

I have no profound words to share at this time. You & your family are in my thoughts & prayers. I remember being where you are as if it were yesterday. Hugs

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