A different kind of loss

by jennifer
(toronto, canada)

Grief is usually associated with death. Of a parent, spouse, child or friend. But there is a whole other kind of grief. Grief for the person who’s still there.
I’m talking about the overwhelming sense of loss and despair felt by those who still have the person they love, but have lost them to stroke and/or disease. Yes, they’re still there. Except they aren’t. They may be unable to respond, trapped by illness, in a body that can’t indicate the slightest emotion. Rage, sorrow, envy, remorse, shame, love, even humour not even mirrored in their eyes. And yet, who are we to say they aren’t all present, just not accounted for? By the sufferer and the sorrower.
Then there’s the other kind of loss, where the person you love is also there but, this time, semi-present, thanks to a stroke. That's what happened to my husband. And this is even harder. He was once, and still is,greatly loved. A man who relished company, conversation and companionship. And still does. He knows he’s not what he was, but can’t explain just how or why. He tries and, because speech is difficult for him, he cries. When this happens, he can be easily diverted. A kiss. A simple “I love you”. Promise of a treat. Any and all of these make him, apparently, “forget” what was causing such sadness. But do they. Or is he just trying to make things easier for those he loves, too?

But he can’t make anything easier. He’s now a child. I've acquired a fill-in- the- number-year old son. One with whom I cannot truly share my thoughts and feelings. One with whom I will never again share the things we loved to do. Enjoy a good meal and a glass of wine. Read and discuss books, movies, theatre, music. Make love. Hike, play tennis or golf. Explore different countries, try out different languages, cultures, food. Share old friends and make new ones. We can’t even live together. Life now is a series of visits.
What do I do? There are some options. Grief counselling or therapy. Support groups. On-line this and that. But try and find one that deals with this. They’re all about death. Death of a parent, spouse, child, friend, even pet. Social workers, community services, various religious groups are all ready and eager to embrace the experience of finality. But this demi-ending, this limbo, seems to go unacknowledged anywhere, by anyone. And so, I try to endure. For those of us, like me, without family, this means days, weeks and specially week-ends of mourning. A sorrow so overwhelming can only be shared by a very few, very, very close friends. Grief takes over just when you think the worst is done. Out of nowhere, apparently, a thunder storm of tears. A paroxysm of grief, just to remind me that I must go on. Must continue to visit, love, console All the time with a smile on my face. Offer an encouraging word and hug. Promise a treat. My reward? The knowledge that my love is still returned. A hundred-fold.
Is that enough? It has to be.

Comments for A different kind of loss

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Oct 12, 2012
Jennifer
by: AnneGale

Hi
It is AnneGale. Thanks for asking. My husband blacked out at the gym and because of that fell and hit his head which caused bleeding in and on the brain, besides shifting his brain off center of the stem. He talks just like before. He now rises by himself and can pretty much transfer from wheelchair to walker alone in therapy.
It's the cognitive, short term memory and thought process that is giving him a problem. He's off with numbers too, plus he seems to be having some double vision. He goes for another c-scan next week. He got out of bed and fell at the SNF and so we want to be sure he didn't do anymore harm. If he continues as he is and can get stong enough to do the walker, get to the bathroom and transfer to the car with minimal assistance he will be able to come home.
I too don't have family in town although my sons call me and would be here in a heartbeat if I asked. His children are closer and his oldest came over and stayed the first week when we didn't think my husband was going to make it. But I'm not real concerned in that area as I have Jesus as my constant companion, getting me through all of this. Yes the tears still come and I shake my head trying to make sense of it all, but the Lord just asks me to trust Him and surrender it to Him. This I do each day. I can feel God's peace and even have joy and share His love with all the staff where my husband is. God is performing a wonderous work with my husband. I would have chosen a different plan, but I'm not God. So I wait with anticipation.
My husband enjoys college football, but the games come on after they bed him down, but we talk about it. Also I bring our dog in every once in awhile.
This living alone is not fun and not having a close friend doesn't help either. I get to church and see people there, but the rest of the time I'm by myself, except when I visit Randy (my husband).
One day at a time. I try to eat and sleep right and take care of me so I can be there for Randy.
My prayers are with you also. Thanks for caring to respond. I'll get on more often. Please take care of yourself. Blessings, AnneGale


Sep 21, 2012
four weeks in
by: Anonymous

Hi Anne or is it AnneGale?

Thank you for responding to my post. I really do empathize with you in what you're experiencing. As you know, Karl had his stroke in February and, like your husband, is recovering far better than they had anticipated. He is only slightly younger, 82, but was active physically right up to the day it hit him. Work, tennis, etc.

I'm so glad that your husband is rallying. Good for him. And I'm sure you're the reason. Do you have any family? I have none, so his loss is really hard to cope with when I come home. I can't say it gets any better as you move through it. It really hasn't for me. I don't cry as much, but I'm not engaged with life the way I was before. He seems to have taken that with him, too. I go in several days a week, and he's adjusting well to the long term care home. Has been there since June. Although it's an older facility, he gets all kinds of therapy: physio, some speech (which I'm continuing), computer, pool,even Shiatsu massage. So they keep him fairly busy and he's very caught up right now with European soccer championship! He's German.

Does your husband have any interests you can build on? It's really helpful to have something you can do together. I don't do soccer - much! But I do watch tennis with him.

I think back to those first weeks and wonder how I ever survived. I'm sure you're doing the same. You will survive, but it won't be easy. You're living for two now, instead of as a couple.

How is your husband's speech? Which side of his body is most affected? I was given a wonderful web link by someone on another board. It lists 1000 of the most common English words and phrases, and also has audio for pronouncing. That runs either slowly or at regular speed, which is vey helpful for somebody who is trying to regain his speech. Let me know if you'd like the link.

Sorry not to have been more upbeat in this. I'm down with bronchitis, so am not feeling very buoyant.
Please post again
Keep well yourself - and ASK FOR HELP WHEN YOU NEED IT!

jennifer


Sep 21, 2012
a mistake
by: AnneGale

Jennifer,
I am sorry but I addressed you as Judith in the comment I left. I'm sorry but my mine is swimming with all I'm going through. Blessings, AnneGale

Sep 21, 2012
Into 4 weeks of sharing the same type of Grief
by: AnneGale

Judith,
I am so very glad that God led me to this site. You are right, everything out there seems to be geared for death grief. I sometimes think that would easier. My husband had massive brain damage from passing out and hitting his head while at the gym. He wasn't supposed to live through the night.
Then he rallied, only to have a seizure a week later(still in hospital). Again he was not supposed to live through that night. He did and now is in a skilled nursing facility for rehab with a feeding tube surgically inserted in the stomach.
He is amazing everyone with his ability to respond to rehab, but he still has the vacant stare, and there is some of the infantile actions. He is almost 87 years old. Nothing is the same and trying to live a new normal is difficult. I know the Lord will see me through all this, but it's hard. I'm glad to see this site and to know that I am not alone. Thanks for caring enough to reach out to others. Blessings, AnneGale

Aug 08, 2012
A heartfelt thank you
by: jennifer

Barbara and Doreen,

Thank you both so much for you kindness and sympathy. I empathize deeply with you for the losses you have both sustained and only hope that you will find life gets easier well, maybe a little less hard, as we all continue our journey.

I'm so glad I stumbled on this site last night. Someone was truly looking after me. I had reached the stage where I honestly believed that no-one understood the hell we are all going through. You both, along with Judith, have given me reason for hope.

God bless.

jennifer

Aug 07, 2012
A diffierent kind of loss
by: Barbara

I'm sooo sorry for your grief. I took care of my Mother for 5 years and I do know how you feel.
I was very young while she was ill. I was only 35 y/o but it is very difficult watching the fear and frustration on their faces is sooo hard. And you feel sooo alone. At least you did have the best experience of a true love for many years. Take comfort in that. Many of us never had the true love with a husband you have had. I thought as we got older life would be easier...it's not.
When I was very young I never even thought of the rough times to follow. Everyday we wake up praying for the strength to do what we have to do that day and the next. I wish I could give you words to make you feel better but their are no words to make it better. I will pray for God to give you the strength to get you through this difficult time.

Aug 07, 2012
A different kind of loss
by: Doreen U.K.

Jennifer I am so very sorry for your loss of your husband's health and the loss of the person he was to you in your life and marriage. I have always been mindfull of people in your category who has not lost someone to death but in other ways. I APPLAUD you for bringing this to the forefront of this forum for us to explore ways we can support you. Also to hear, respect and validate what you are saying and how you feel. Your situation must put a terrible strain on you. There is only so much a person can take. It means you are always grieving. My husband died 12weeks ago from a deadly cancer caused by working with asbestos. Steve was 65yrs of age and we were married 44yrs. Steve's cancer was inoperable, incurable, and aggressive. I was his caregiver for 3yrs.39days. It was a painful time of watching the man I loved die slowly before my eyes. He was always sad not knowing which day he was going to die. He lost quality of life for this whole time of having cancer. the strain was too much at times. There have been times I have heard of people walking away from someone who was ill. I used to be angry with that person and couldn't understand how they could do this. I DO UNDERSTAND NOW!!!!! There were times I felt like walking away. I would go out of the room, have a good cry and then come back and nurse Steve.
Prior to this in 2005 Steve had ENCEPHALITIS. the virus attacks the brain and the person goes into a coma and between 3-6weeks that person could be left with residual effects even brain damage. Steve had short term memory loss. He had extreme pain in his legs. Unbearable pain the virus attacked his spinal cord. Steve was never the same man. His personality changed. That was the day I lost the husband I knew. For 7 years I don't know how I coped. If I did not believe in God I would never have survived. Now Steve has died. I have to live with another grief. LOSS in general is very hard to go through in life. Having a stroke. Well this is what I dread for myself because I don't want my children to have to nurse me. Here in England the family have to sell the family home in order to pay for the hospital or care home facilities of caring for someone who is incapacitated. How can we help you Jennifer to get through the grief and loss you are living with? You can email me anytime and say whatever you wish. I will allow you the space to be you and help share your grief. my email is
doreenelkington@aol.com I hope you feel some measure of comfort sharing your hurt and pain with those who care. You need practical support also with emotional support. Life has dealt you a very cruel blow. Reach out to God. His support will carry you through the difficult days.

Aug 07, 2012
response to judith
by: jennifer

Oh Judith,

I am so sorry for your loss. I'm sure you must still miss your husband deeply and yet you took the time to respond to my post.

I am very, very grateful for your sharing,and promise to pass your kindness forward whenever I have the opportunity.

Jennifer

Aug 07, 2012
I Totally Understand
by: Judith in California

Jennifer, I feel your pain and sadness. Those of us who were caregivers to our spouses years before they passed went through the same kind of loss. WE lost our lives as husband and wives and became more of a Mommy to them, WE fed them, clothed them, changed their diapers, brushed their teeth and so on. We loved them and hoped they would one day return to the Man or woman thye used to be but knew it would not happen. SO we mourned the loss of a marriage in which we shared a life going , and doing things together, being kissed by them and making love. Getting a card from them on special occaisions. We don't get to hear how special we are to them anymore when they loose thier ability to speak. We don't get to dance anymore.That all stops and we go off alone and cry for the total loss of it all except the loss of them and then one day we loose them too. AND all that loss before is not enough to prepare us for the horrible heartbreak of their passing. We hold them, and continue to love them unconditionally then and long after they are gone.

Those who have never gone through it will never give a thought to those of us who have. When they look at us pushing our loved ones is a wheelchair they don't see the big picture of all that loss.

Please keep God in your life and talk with him and pray for strength to see you through this. I too will pray that for you.

It's been 23 months of my loves passing after 35 1/2 years of loving . I spent 3 1/2 years lovingly being his caregiver.

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