The Wall Between Us

[DeeGee]

I was writing earlier today to a friend of mine whose SO was diagnosed with a cancer right round the same time my husband was. Her guy is doing pretty well, responding to treatment.

One of the things I was writing about was that I felt that our relationship changed from the day of the cancer diagnosis on. That after that things were different. I felt at times very lonely because I felt I had to be upbeat and hopeful and could not share feelings of despair and sadness with him because I did not want to pull him down, ever.

And my husband was not a man who EVER freely talked about his deep feelings or fears and that did not change once he was diagnosed. He displayed no curiosity about his disease, did not ask many questions at all of his doctors. There was no acknowledgement between us that he was terminal until about two weeks before he died, and even then it was just him looking at me and saying "I think I'm dying" and I answered him "Do you want to talk about this?" and he said "Not really" and that was that.

I am curious to hear from others, if you care to share, on how this went in their relationship with their loved one.

Thank you,

DeeGee

[LarrysGirl]

DeeGee, this is a hard one for me. The most painful part of my grieving has been around this subject. Larry waited over four years on a transplant list only to die the day before his fiftith birthday. We NEVER gave up hope, we were a team in a battle for his life. In Sept. 2005 his health was rapidly failing, yet the drs. were trying to find a way to help. They found cancer then and yet we continued to speak as if a miracle would take place. I think somewhere in my heart I began to fear we were losing the fight but I could not say the words or let him give up. In November, 4 days before his death the doctors told him there was nothing else to be done. Myself and his family did not find out until after he died that they had told him he would die soon. He never let on.

I can still see his eyes when he came home. They followed my every move. We looked at each other with an unspoken knowing look, as neither of us could bear saying goodbye. I have suffered with the knowledge that he knew he was going and he kept that to himself. Was he scared, could I have helped him, did he need me to say something.... that has almost made me insane at times. I told my counselor after Larry died, that had he told me, I probably would have taken my life first because I couldn't bear the thought of being here without him. So you see, I still hurt terribly over those last days. Deborah

[DeeGee]

Well, Deborah, I too am second guessing myself at this point. Should I have pursued things more directly with him? Deliberately initiated a discussion about death as it was becoming more and more evident that it was coming closer and closer? He never was the kind to want to discuss deep feelings and throughout our relationship I always had to almost force him to discuss his feelings.

I think I must have been afraid to push on this. There was what seemed to me like so much denial on his part. But I kept thinking that denial is a self preservation type of thing, and I didn't want to cause him to be in a painful awareness, so I just kept up the "charade" that there was the hope that he was going to get better. And, yes, I WAS hoping and praying for a miracle all along the way. I kept telling myself "well SOME people make it through this, why can't he be one of the very, very few lucky ones?

But it was just bad news after bad news.

I know that I tried to do my best for him, tried to make things the best I could. After the cancer went into John's spine and the bone broke and he had to go into the hospital to get it fixated things really started to go down hill pretty fast. He was losing his balance and fell several times. The pain medication patches were no longer working well because he had virtually no subcutaneous fat left on his body. Then he had to switch over to oral meds and it took several adjustments to get the right dosage. So he would either be nodding off or suffering in pain.

It sounds to me like your husband loved you very much and he surely knew that you loved him. I know that I loved John very much and know that he loved me.

It was a very, very tough situation to be in and I didn't really have much of anyone to give me any guidance through it. Maybe if we had contacted Hospice sooner, they could have guided me. But even that, to contact Hospice, is like giving up, so I didn't want to bring that subject up and none of the doctors or nurses ever even talked about it to us.

Dee

[kath]

DeeGee,

This is a tough topic and probably the one that left me with the most guilt, also. I had been worried about Bob for a while. He seemed in constant pain and bled from his mouth whenever he slept (which was a lot.) I didn't go to his early Drs. appointments, but constantly reminded him to ask the Drs. about it. He never did. One day he said that he felt like he was dying. I made him go back to his Dr. The follow up appointments were pushed out or forgotten so by the time he was seen again, he was seriously ill. His only comment when I asked him to talk about the possibility of death was, "I'm not done here, yet. I still have to make C's shelves." He had never been afraid of dying since the time he nearly severed his hand and went into shock. At that time he went to the light and he said it was the calmest, most beautiful feeling he'd ever had, but was told to come back. It wasn't his time. I was terribly lonely during his illness, because he was so private, I wasn't allowed to talk about it with anyone. I would cry at night, lying next to him, fearful of what could happen. I was worried, exhausted from taking care of him, the kids, and our old dog while working full-time.

I would secretly call his older brother for advice, because I was scared of losing him. He said not to worry. By the time he was put on disability leave from work, he went downhill within a month. Each day was something new and awful. I got most of my information off the internet about his illness, as his own Drs. were very vague and I was afraid to bring it up...his timeline. They were the ones that kept telling me he wasn't sick enough to be seen for a transplant. They made it seem like this could go on for years. I held onto hope even his last week which was spent in the hospital. The day he was to be put on the transplant list was the day he went into septic shock, just after I left the hospital.

There was one time during his disability when we talked about a reknown hospital that his brother wanted him seen at. It was a long ways from here, insurance wouldn't have covered it, and with two children, I didn't know how I could manage having him there. He seemed a little miffed that I didn't pursue it, but he didn't mention it again. I talked about how I regretted this with another of his brothers months after Bob died. He had been in contact with the famous hospital and they didn't think anything more could be done. It seems everyone knew, including him, that his time here was to be cut short. I refused to believe it. In fact, that final day, when I came home and gathered up the kids, we cheered, Dad had made "the list." He would get better soon. Within a half hour, that all turned.

I think we try to put on a positive face, out of love, for our spouses. I know I left it up to him to talk about his fears. I was always there for him, watching, praying. I couldn't give into my own doubts because it was so painful, I didn't want him to worry more. I wanted all his energy to go towards his healing. It takes time, but guilt eventually leads to forgiveness. Somewhere along the line, I think I even experienced acceptance, although all these things sort of weave in and out on a daily basis.

PS...The first thing I did in my widowness, was build those shelves for my daughter. I had a very strong need to finish his projects.

Kath

[DeeGee]

"I was terribly lonely during his illness, because he was so private, ................. I would cry at night, lying next to him,"

kath: Yes, I too felt very alone. And I did have my daughter to talk with about what was REALLY happening, but honestly, while that helped, it still did not take away that "wall between us" as I call it.

So there is all that lonliness and carrying that burden throughout the illness and then when they pass, there is this loneliness and feeling of being overwhelmed with all there is to do and the sadness.

No wonder we cry!

I think I know in my heart that if John wanted to talk about these things with me he would have. He knew I am generally a strong person, that I would have been capable of sitting and talking to him about it. He obviously did NOT want to talk about it, not to me, not to his identical twin brother, not to his brother-in-law with whom he was particularly close. So it wasn't just me that he didn'twant to talk to about his death. And again, he did not seek to write a will and when asked by his brother-in-law a few weeks before his death if he had any special requests or wanted anything special to go to anybody in particular, he answered "No, Dee will take care of everything like that".

So I guess in the end they do it their own way.

[Kavish]

DeeGee,

There are some men, who don't want to upset the applecart. I guess your husband was one. I too find it very very difficult talking about my fears or my inner deep feelings because I really don't know how to express them. Sometimes we men are the most stubborn and really immovable objects maybe just to avoid criticism which may be a part of us deep down somewhere lots of time ago. I was afraid of my mother so I really wasn't able to express myself and was very shy. Now I am just trying to channel myself inwardly to be calm after having met the most wonderful friend who tried her hardest to bring me out naturally. She gave me space and patience just like you did with your husband.

Thanks,

Kavish

[marsha]

Dee Gee - Oh, I'm glad you brought up this hard subject - one I never could find the words to express, except in my journal. Please forgive me in advance for this long winded story, but I need to get it out, to answer you. When Joe's cancer was diagnosed, I was in shock, particularly because billiary duct cancer shows no symptoms. I thought, ok, chemo, radiation, whatever it takes, we can beat this. He received his first round of chemo, then he fell. He said he slipped on the floor. Then a second time - the third time I couldn't get him off the floor. I called 911, and they took him to the hospital, and ran further tests. I had called his oncologist, who said his ammonia levels were probably off. At 1:00 am, the doc called me to say they found the cancer had gone to his brain. When I drove back to the hospital, in shock, I thought - he's dying. I could not even get my head around it. They transported him to Norfolk General that night. The next day, the worst was confirmed. I remember the doctor saying, it's all through his body - he has one to six months. We cried together, but when I went into the hall where my good friend was waiting, I sobbed. When Joe came home, I remember sitting at the kitchen table, crying - I said to him "what's going to happen to us?". He said, and I'll never forget this, "you know what's going to happen -you went through it with your mother and father" (both deceased.) That was the only time we addressed his terminal sentence directly. He went through 30 days of radiation - I saw that he still retained hope, and decided to fight. I needed to honor his wishes. I didn't cry in front of him; but I cried in private. I couldn't give up, because Joe wasn't giving up, even though the evidence of his decline was right in front of me. We just continued living our lives as best as we could. A week before he died, he said, "I feel different." I never felt more alone in this universe than during those 4 months. Vickie O'Neil (a member of this site) said to me, and I'm paraphrasing - what could we do? Our husbands were staring death in the eyeballs. The anguish, and guilt, thinking, what could I have done differently, did I do enough, was a big part of my grieving. But we, all of us, go through the journey of life, and death, personally, and internally. I know Joe knows that I loved him more than anything on this earth. I hear you - Hugs, Marsha

[valley]

Like all of you, this topic brings great sadness to me.

Tom and I always talked about him being cured...getting well.....handling the treatments because on the otherside of the treatment would be better health.

Once when Tom was in hospital for peunomia the doctor, someone we did not know, talked about paliative care.....that he would just try to keep Tom comfortable. Tom called me that night. He was furious. Doesn't this doctor know how hard we are fighting and that he is going for a CURE. I called and spoke with that doctor the next day and just laid into him. That he had no right to talk to Tom like that, other doctors had told us that treatments would help and we were fighting cancer, and fighting for his life. I got some weak response from the doctor. Both Tom and I sought out doctors who always offered hope and talked positively about what our options were and what we could do next. It was all we would allow ourselves to hear and in truth doctors did in fact talk to us as though we could have hope. That they too had hope for Tom.

Tom was hospitalized 3 different times for peunomia. And had radiation and low dose chemo and then full on chemo. He got thinner and thinner. Coughed more and more. Still we had hope. It was 6 months of both of us doing visualization, praying, doing massive Vit. C infusions, naturopathic treatments, food changes to the the cancer diet, fighting, fighting , fighting for health.

We both did this. Side by side. A few times I did bring up the subject of WHAT IF and left the door open. He would not go there. Only one time when our daughter was with us, he said, "I am not afraid to die". But we never really talked about death. I know he worried about me and how I would handle all the things we have on the go and all the responsibilities. Once when I was sitting by him I put my arm around his back and said, "Tom, I am going to be alright". That was it. That was my acknowledge of how sick he was. I also told him most days, "you are my life", which was probably unfair to him. But he was and is. And he would say, "I know. I feel the same way". His desire to live was far greater than his desire or need to talk about dying. Is this true? I will never know. That is how it seems.

When people would phone to visit with him, it was like he wasn't sick. They were right into laughing and discussing everything they ever had. But he would alwasy say, "I could not do this without Shelley". Thats me. I know he could not do it without me. We were partners in this fight, as we were partners in everything we did. Tom was a man who said I Love You to me and to our kids. And thank goodness for that. He dropped dead from a complication from cancer right after lunch one afternoon and I called 911 and they worked on him but could not save him. I have to believe that when he fell to the floor he did not know or believe he was dying. At least our children and I knew....because he said it so much....that he loved us, even if he could not talk about dying. But I do play that over and over again in my mind. If he was scared inside and just couldn't bear to talk about it...I would feel so horrible, that I couldn't have provided the space or security or whatever for him to go to those depths. It seemed we talked about everything in our 40 years together. I would like to think at the end......he felt free enough to express his fears.

We may have passed up the opportunity to really speak of death and face it, because we both were keeping HOPE alive.

Your friend,

Valley (Shelley)

[DeeGee]

'His desire to live was far greater than his desire or need to talk about dying.' Oh, yes, my dear, I think this is so true!

Thank you all for writing. I have noticed a great similarity in these stories. And also noticed a great similarity in how we each dealt with the situation and the feelings we were left with.

It would be interesting to me to hear the other side of the story. There surely are those patients who come to acceptance of their condition, those who write a will, write down bequests and plan their funeral music? I wonder if their survivors feel a lot differently?

[kath]

Dee Gee,

I had read an article a while back about cancer patients. The Dr. said there is peace that comes in the final stages of their illness. I know Bob had that peace. He wasn't afraid at all. To me it was like he was protected from what was to come. So maybe, what our human minds see as an unwillingness to talk about, was really something they didn't even think about.

Months earlier, Bob had some strange dreams. He said all his family (that had passed away) were there, smiling, happy. We didn't think anything of it at the time, but now I imagine that they are all safe, and close to us.

It's sort of strange to think about all these questions and uncertainties we are left with. By the time we can get the answers, it won't really matter, because we'll be back together with them again...forever.

Kath

[MartyT]

Dear Ones,

It seems to me that, when caring for loved ones who are dying, we need to keep in mind that it is their dying and their death, not ours that we are dealing with ~ and one of the most loving, selfless things we can do for them is to take our cue from them, and let them do it their way. What each of you did for your dying husbands was to love them enough to let them do it their way ~ Do you really think they are standing in judgment of you now, for the selfless and loving way you cared for them?

[PaulaB.]

Dee,

The wall is huge.

A terminal illness with someone that we hold close to our heart is something most of us have no previous experience in. No matter what we did or didn't do, there is no blame although I know I have some quilt issues, but I did the best that I could and I never left his side. It was a journey of life that we were supposed to do with this other person and I am just beginning to learn now that it taught me a lot about who I am. And I am beginning to continue on the journey in a different way because I am a different person because of it.

I got my Tom and I involved in a program called the Wellness Community to discuss his feelings because he didn't want to talk to me. I think it helped him when he was strong enough for awhile to attend. He went through a period of anger that was hurtful and I didn't know how to reach him. It got to the point that I told him that I knew that he couldn't talk to me about his anger and his frustrations. I told him to write a list and to discuss it with his group counseling and that I didn't need to know what what was on the list. I don't know if he ever did. I found the list in his file cabinet after he passed away. No. 1 on the list was being diagnosed with cancer.

We both always tried to look at the "hope factor" knowing full well it didn't look good. His family wouldn't even consider anything other the "cure". They sent books, they sent all kinds of advice, but they were never here to drive him to his appointments, hold his head and rub his back after chemo, hook up his feeding tube every night for months on end. They weren't here to change his colonoscopy bag after they removed the feeding tube. I called in Hospice when I couldn't lift Tom anymore. They came to the house for two weeks and then Tom went in house at Hospice for one week until he passed. It was the best thing that I could have done for Tom. I could share our last week together knowing that he was in good hands.

Paula

[mlg]

Oh, how lucky you are that you could put on a "happy" face and be supportive. I have NEVER my whole life, been able to hide my feelings. If I try to "lie" it is like a big Neon sign going across my forehead saying, liar,liar. Tom knew that and the night of his diagnosis his first words were, "at least I got the fast kind". That very moment the guilt started creeping in because of all the time Nancy Nurse here had talked about how quickly pancreatic cancer usually took someone. One day we were talking to someone and I said something about we were talking about something the night before. He stopped me and said, no , I talked, you cried. I really don't know which is best. Them not knowing how you really feel or blubbering like a baby. He knew no matter what I was there to support him every step of the way. I hadn't left his side in 37 years and wasn't about to now.

He always from the beginning said he wasn't afraid to die, just sad about the things he was going to miss. He would stare out the window at times and I'd ask him what he was thinking about and he would say nothing. I think he was but never pushed it.

We didn't have to talk. The looks, the touches told it all. I asked him if things didn't turn out well, was there anything he wanted to do before the end. He wanted to go to Vegas one more time and die at home and I gave him both those wishes. We had received a book at the funeral home when his sister in law's dad died and it talked about all the things you should do to prepare for the funeral. About 3 mos. in he decided he wanted to do this so we sat down one day and filled it out. He even asked the people to be his pallbearers and got to see how honored they were by this. The only thing he wouldn't do was help me pick out the headstone. The only thing he would say was shiny black and NO benches ( I had wanted a bench so in my OLD age I could sit and talk to him). Therefore, when it came time I had a terrible time picking it out because all I could hear was NO benches. I wanted it to be special, elegant and dignified and still when it was done part of the lettering was bigger than it appeared in the sketches so wasn't exactly what I wanted but it kind of told the story of our life for all of eternity.

So I guess, whether we can or cannot hide our feelings, the most important thing is that we stood by the one that we love (present tense because I still love him with all my heart).

[Korina]

Wow. A topic that haunts me. As many of you may know, my husband was at an in-patient treatment centre for alcoholism. He was a very stubborn person, very strong-willed, not one to admit weakness, so it was VERY hard to get him there. In fact, I left him for 5 weeks with our newborn daughter, as I could see things were getting worse. But it took an intervention to get him there. The only thing I worried about was that he would finish treatment, as I had been taking a hard line with him, and didn't know if I could follow through. When he was admitted to the hospital, I didn't think much of it, as he had been very sick 2 years before, and he had recovered remarkably well. But then, suddenly, he was in ICU, and his prospects were dim. Infection. Even then, antibiotics are supposed to deal with that, right? Well, not always....

I was only with him for one day in ICU before he lapsed into a coma (at least I think it was a coma - he was on max antibiotic and blood pressure medication, and on a respirator). On that last lucid day, I don't think I accepted the possibility. I simply fed him pears, asked the nurses when he needed something...scratched his back - he always liked it when I scratched his back. I was almost annoyed he wanted me to scratch his back, if you can believe it. I thought - well nothing changes, here I am scratching his back, no matter the circumstances.

But I remember so clearly 2 instances. He was retaining abdominal fluid, and wanted it drained. But the doctor refused because of the ongoing infection. The doctor asked me if Scott realized how sick he was? Scott said to me, "Korina, you don't understand. It's hurting my organs." Thinking back, that statement told me he knew he was dying. But I didn't do or say anything special. I didn't tell him I loved him. I probably just left the hospital, telling him I would see him the next day (I don't remember what my last words to him were...) And then the next morning, he was unconscious.

The second instance was with the chaplain from the treatment centre, who, I might add, was a blessing - I don't know how I would have gotten through those 3 days without him. Anyhow, though Scott had said he didn't want to see anyone except me, before he said this, I had already told the nurses to let Anthony in. And all of a sudden he was there before I changed the instructions with the nurses. Scott and Anthony ended up talking for at least a half an hour in private. Afterwards, I asked Anthony if Scott knew he was dying. His answer was compassionate, but I just heard what I wanted to. Then, as he conducted the memorial service, he told part of that story. And Scott knew. But we never talked about it. Anthony spoke to him about his higher power, knowing that his time on this earth was short. Scott's immediate answer was, "Let's discuss this in a socio-economic perspective." No one else but Scott would have come back with that! They did speak seriously, and at the core, Scott's higher power was love (he was not a religious person). How can this be both comforting and torturous at the same time!!?

When he was unconscious, I don't know how many times I pleaded with him not to be afraid. My biggest fear is that he was afraid. But for a day and a half, I poured out my love and sometimes desparate hope, and sometimes reassurance that I would raise our daughter as best I could, etc etc. I hope he heard me. Those last days are so hard to think about. I went from so hopeful just 3 weeks earlier, as he was in addiction treatment, to complete and utter devastation.

Sorry for the long post, but there it is.

Korina