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Reply by Xenia

02 Dec 2015, 5:20 PM

Dear Loving Wife:

Reading your message my heart goes out to you knowing what you are going through. Having a husband going through the cancer and all the treatments is not only hard on him but you as well. I feel your anxiety and pain in trying to keep on going as normally as possible.

My husband had lung cancer and many other ailments and passed away last January and many of the situations you are in I went through as well. John was not paralyzed but his illness kept him bed ridden most of the time and as you myself and family tried to keep on going as normally as possible. What is the normal dealing with illness we asked ourselves and try valiantly to go on trying so many things to make our lives normal.

Your not feeling thngs as deeply as you would normally has been part of my dealing with John's illness. This was my way of protecting myself and not letting myself feel what I would at other times. So often my sister would say to me: You are so brave and how do you do it?" At that time I would just say "I have to, I have no one else to turn to and if I break down what good will that be to John and myself?" Self preservation was taking over my feelings and when I had time I would sit and have a cry to release my feelings.

There is so much help here on CVH as we all have been through what you are going through at one time or another. I offer you my frieindship having gone through rough times dealing with my palliative care for John, thankfully I turned to CVH often and would go to the message boards to find support.

Christmas is going to be hard for many of us who have lost our loved ones but I recall last years Christmas and as you made it warm, pleasant and as stress free as possible with the help of my family who took over much of the stress of the holiday season and made John's Christmas one to remember by him and all the family.

I send you wishes for less stress and the ability to go on during these difficult times. I will stay in touch and trust we can be of support to all on CVH.

Xenia

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Reply by Loving Wife

03 Dec 2015, 1:52 AM

Hi Xenia,

Thank you for your supportive note, and I am so sorry for your loss. I hope Christmas will bring some moments of joy and remembrance for you and your family, but I imagine it will be difficult and emotional too. It is already hard for me when I think it may be our last one together.

Like you said though, I am in a place for now where I don't have time to vent very often. And it would upset my husband. So we try to keep things going and enjoy what we can. I always heard that a lot of grieving is already done when you lose someone after a long illness, but I don't know. I don't think I am feeling grief as much as am just putting on a brave face and pushing through. I would like to be able to relax for a little while and truly grieve.

i appreciate your reaching out in spite of what must be painful memories. I do hope that I, like you, will be able to comfort others after this experience. That is the only good I can imagine coming out of this excruciating time.

Thank You,

LW

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Reply by KathCull_admin

17 Jan 2016, 3:56 AM

Hello
I was wondering how you have been LW. Although it's only been a month - it has been a month since you last wrote and so much can happen in a short time. An old song described grief as "a know that is hard to untie". A friend told me last week that she does not believe grief is 'linear' - it curves and twists and jumps out when least expected.

I wonder did you see the article Grief Work - I found there was lots of helpful information.

Have you been able to have time to relax a bit?

Katherine

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Reply by Loving Wife

17 Jan 2016, 5:51 PM

Hi Katherine,

Thank you you for checking on us. We are in a fairly peaceful lull (no emergency hospital visits) for now cancer-wise. My husband's PSA is slowly rising, but we are going through different therapies trying to find something to stop the rise. At least it's slow. Our biggest problem is a persistent bedsore that will not heal after 4 months of home treatment. We see a wound care specialist this week. I am worn out worrying about it.

Emotionally, this is so stressful. I have been breaking out in hives for the last month and my hair has been falling out for many months. Working full time and caring for my husband in the evenings is exhausting. Since he is paralyzed, this involves a lot of physical work. We are 15 months in now and I do wonder how long I can last like this. But I don't see that I have any choices.

I think hospice care would help greatly with the emotional stress, but my husband does not want to go into hospice care yet. He wants to fight the cancer as long as he can, and in the U.S., that disqualifies us for hospice care even though he has a terminal illness. He has some palliative care, but that is minimal.

I see a therapist about every 4 to 5 weeks, and that helps some. But this is just a long, long road of very hard work mixed with worry and sadness. I have been strongly encouraged to put my husband in respite care for a week or two, but this is very expensive. It would also put my home health aide whom I hire for 3 hours a day out of some needed income for a while since I pay her by the hour. So, it really is a complex situation. It feels like we are a house of cards.

We do have moments of comfort now and then when friends visit and our church has been a great support. I never thought of myself as an especially social person, but I find myself craving company. My husband's pain meds make him sleep more than normal, and I need to be here when he is in bed since he is so helpless. When I do go out, other than to work (when he is required to stay in his wheelchair), it is just to get groceries or go to the pharmacy. Occasionally, we go out to lunch or to a movie, but his sleepiness and pain make this less and less enjoyable.

So, for now, we are treading water. I relate to many of the posts on this website, and ache for others in similar situations and those grieving the loss of their loved ones. It is a hard road, and sharing the load makes it more bearable.

My best,

LW

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Reply by Nouce

17 Jan 2016, 8:36 PM

Dear Loving Wife,

I hope Christmas season brought you some (even if small) joys. But holidays can be very hard too! My husband has leukemia that invaded the central nervous system, and he has become very more disabled, both cognitively and in terms of movement. I am so gratefu he doesn't have pain, and I hurt for you having to face not only your husband's disability but his suffering.

For a while I tried to do things with him--go out to dinner or a movie, find an accessible b&b to stay overnight, etc. But now I have had to stop all of that. I do have a few friends who come and help me take him to their house for dinner once a week, whcih is a real gift. Now, I always have to carry a bag with all the necssities because toileting has gotten to be a real problem for him. I think it was Dostoekvsky who said, "Love in action is a harsh and dreadful thing in comparison to love in dreams."

May you be free to say how hard it is, here if not elsewhere, and may you know the shape of your love, even when you feel only exhausted, sad, or angry.

Nouce

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Reply by Loving Wife

18 Jan 2016, 2:47 PM

Hello Nouce,

Thank you for your kind and profound message. Love in action, and under the circumstances we face, is a challenge for the heart and mind. Every day presents a thousand opportunities to choose a loving response or to just "fall apart."

I am am sorry that you and your husband are facing such a heartbreaking time together. I know that this is never what you imagined your life together would bring. I find dealing with toileting problems among the worst. When friends and family do volunteer to help by taking my husband somewhere, I often can't accept because I don't want them to get caught in a bad situation--for them or my husband. This would be so awkward and awful for all. So I usually have to be around somewhere.

This sounds so "matter of fact" in writing, but it is overwhelming in day-to-day life. We can't get away on any vacations or long weekends. He just has too many issues to travel. And if we did go, the amount of work I would have to do to arrange things would erase any relaxation I might get. But it is so awful for my husband to have nothing to look forward to. He loved to travel and see things, and so did I.

We watch a lot of TV, and, for now, that has to do. Have you ever tried respite care? I want to try it, but I feel guilty putting my husband in a facility for a week or two so I can get away. I know it is necessary for my mental health, but it feels so cruel. It is expensive, so when and if I use it, I want to do something that will really recharge me.

I pray for the best for you and your husband. And I especially pray that you will have relief, moments of joy and laughter, deep rest and good friends. These are are all of the same things I want for myself.

Sincerely,

LW

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Reply by Xenia

20 Jan 2016, 9:29 PM

Dear LW:

So many words of wisdom have been stated on this message board so I will concur to all they others have said.

I feel your loss of doing things with your husband and I understand your craving for company. I too felt this when John was on heavy meds as I had to be home to be there for him when he woke up. I did have respite care weekly but the other days I would be alone with John except for the hour long visit from the palliative care nurses who checked up on John's condition, etc. Some company regardless of who they were helped with the feeling of being alone, not loneliness which I found to be different. The alone feeling was worse than being lonely as I knew the reason why I was lonely and that would pass. Being alone was so different as John was in the next room, yet I was alone .

I also pray for relief from your worries and send you virtual hugs from the West Coast of Canada. Keep messaging as that helps so much. I depended on these messages to keep me going through the day when John was at his worst and without them I beleve I could not have carried on for the length of time of John's illness and providing him the palliative care he needed.

Take care

Xenia

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Reply by KathCull_admin

03 Feb 2016, 5:41 PM

Good morning,
It has taken me some time to respond to a sentence in your post Xenia - which I think is profound.... “The alone feeling was worse than being lonely as I knew the reason why I was lonely and that would pass.” That ‘alone’ feeling is less than it was 6 months ago but every so often – like last weekend – can take over. It is very good to be able to share with others in the community who understand.

LW – did you find a way of respite that fit your and your husbands’ needs? Guilt, as my friend once said, the gift that keeps on giving! Have you found a way to rest and refresh?

Katherine

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Reply by Loving Wife

04 Feb 2016, 3:31 AM

Hi Katherine,

i would like like to say "yes" that am working on respite care for myself. But that's not entirely true. I am in the process of getting the paperwork done for a two week respite stay for my husband, but it is because we are having the house treated with pesticides and I don't want him exposed. He can"t stay in a hotel or with relatives because there are no hospital beds. Also, I have a grueling workload over the next few weeks and I just can't do the work and take care of my husband in the mornings and evenings. I wish I were going on a little getaway to rest, but I just can't work that in In the next few weeks.

I have to say that I am not alone, but am lonely. I still have my sweet husband with me. But he is consumed with his disease and what is happening to him...as anyone would be. He has become very demanding about things that can help make him more comfortable. So we are here together bur I am lonely. I know that one day I will give anything for his conversation, buy for now,need to to be with others whose lives are not confined to a sickroom.

but am too tired to care too mubh!

debbii

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Reply by KathCull_admin

13 Feb 2016, 3:34 AM

Hi
How are you doing debbii? I am thinking about how much work you have to do - to get ready to go and to organize and stay on top of the pesticide piece. A few years ago we had a bedbug infestation. I would not wish that on anyone.

Do you have anyone to help organize, help your husband to adjust and give you some breathing room? Are there things you can do to help you rest? Music, meditation or?

I worry about you being so tired......
Katherine

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