Visit to the hospital

[mandeldog]

Today, Saturday, I visited a friend at the hospital where my wife and I spent so much time.  I haven't been back since her passing.  Although my friend is going through a very challenging time after a serious operation, she will walk out of there with hope of something approaching full recovery.  Rita and I were not so lucky.

After I visited, I returned to the outpatient surgery waiting room where all of this began.  In September of 2014, I waited to hear the results of my wife's cardio-version, to correct irregular heart beat (atrial fibrillation).  This had been discovered in an appointment with a cardiologist that my wife made after reading a book on heart health.

After a long time, one of the doctors involved in the procedure came out and told me that the cardio-version had gone well but that they had detected that my wife had a leaking heart valve (atrial valve).  So that was the second little slip on what turned out to be a steep icy slope.

We returned to the cardiologist who was happy to inform us that the repair of the heart valve would involve open heart surgery.  We went through a lot of tests in preparation for surgery, including the cardiac catheterization to trace the arteries of the heart.  I remember when we were in the prep room, looking out the window and noting that the cancer center was right next door.

In December, Rita had open heart surgery and the heart valve was replaced.  She was then in the ICU for ten days and then in a regular hospital room for about three.  Her total stay was thirteen days - a long time.  She then returned home with a home health care nurse visiting a couple of times a week.

Rita's recovery was not quick and over time I had some feelings that all was not right.  She had a lot of edema, shortness of breath, and other heart related symptoms.

When we returned for her follow up appointment in mid January, 2015, Rita was clearly not well and had not recovered as expected.  The doctor returned her immediately to the hospital.  She had extensive testing during this time which revealed that Rita had amiloidosis of the heart.  This meant that her body was producing a bad protein, amyloid, which was going into her heart muscle, stiffening the heart and preventing it from pumping properly.  We learned that once this protein entered the tissue there was no way to get it out and that Rita's recovery would be limited.  Later testing showed that Rita had multiple myeloma, AL type, which caused the production of the amyloid protein and all of the effects to the heart as well as to her kidneys.  By February, another heart doctor told us that Rita's prognosis was six months to a year.

That news was devastating, as you can imagine, but in some ways the best information that we had gotten, because it allowed us to live out Rita's last months with a realistic view of what was to come.  We spent her last months making her life as comfortable as it could be, dealing with lymphadema (swelling of legs), pressure sores and such. 

We also saw an oncologist and Rita agreed to take chemotherapy to see how it would go.  At first, reduced amounts  were not too bad.  But then the doctor wanted to up the amounts to see if we could get her numbers down (always numbers ... never people).  I didn't want to affect Rita's medical decisions but I wish I had questioned the increased chemo from the get go.  Once Rita was on that, she was gone four days a week, completely wiped out.  I think that affected me more than I admitted to myself.  I kept going to those weekly appointments with the oncologist although the whole thing was making me angry and I was starting to lock horns with the doctor.  Rita started skipping the chemo from week to week in order to spend quality time with our children and friends, and finally, on July 17th, 2016, she told the doctor that she didn't want to take chemo any more.  I am very proud of her for that.  As a result, our last months, until November 24th, when Rita left this world, were good ones - Rita was there for me and I was there for her.  How many times I held her and told her how much I loved her - and she knew how true it was.

Rita and I were a couple for 46 years and married for 44 years.  As I said in the grief support group, I cared for her during that last year of her life, and she took care of me for all the rest of the years - so now I only owe her 45 years.  :-)

There's more to tell ... the difficulties of care giving ... and the gift of being able to care for my wife.  How much I love her.  How much I miss her ... but know that she had to move on.

Thanks for listening to all of this ... it's taken me a long time to be able to share this here.

Bill (that's my real name)

[kayc]

Bill,

I know what it took to share your story, and appreciate your doing that.  Many of us have mixed experiences with doctors/hospitals, some of us wanting to forget that part, others wanting to make changes in the health care system because of it.  

What we take with us is not the numbers, but the time with the person we love, the person that mattered at the end of the day.  No matter how much time we were given, it didn't seem enough, yet we're thankful for each moment we had.

I'm sorry you lost your wife, it's really tough.

[Margm]

Bill, we have all shared, and what it comes down to is we have lost the biggest part of ourselves.  Billy would say I was him and he was me.  The only difference is, I can see me, but I had rather see him.  Welcome to our forum where we all suffer together. 

[Gin]

Sorry for your pain, Bill.  This is such a hard journey.  Glad you found us.

Gin

[Polly]

Bill,

I know that must of been hard to go back to that hospital. I have trouble just driving by the hospitals Richard was in. I avoid them if possible.

[Clematis]

Hi Bill-that is such a sad story-it really sounds like the two of you went through hell together and then you lost her anyway, which starts another flavor of hell. I am so sorry to hear that this happened to you. It is terrible to lose someone that you had so close to you for so long, just as it is tragic to lose someone with whom you have just started and are hoping for many decades but are denied that. In the end, I think it's the depth of your love that makes the depth of the loss when they are gone.

It is hard to go back to a place where you experienced the traumatic history of a loved one's decline-it's a trigger for painful feelings. My cat is a therapy cat and I take her to visit an independent living facility where I imagined that my dad might someday go, although I worked very hard to take care of him at home, which was what he wanted. so he never made it to the independent living place. However, he did spend five days in a SNF (Skilled Nursing Facility) next door to the Independent Living, a respite courtesy of the Hospice people who worked with him. The timing was terrible-I really needed the help and was about tearing my hair for those five days between Christmas and New Years. It is really hard to get anyone to do anything in between two 4-day weekends, and I was trying desperately to find home health care for my dad. That didn't work out, he came back home for two days, back to the ER,  then a hospital for three days, and a rehab hospital for six days and then he was gone.

But during the five days he spent at the SNF I visited him at least once a day, and sometimes two or three times in a day, always bringing with me Lena, the therapy cat. She and my dad enjoyed each other during these visits and so did the other residents. I had been quite familiar with this SNF and had worked there in several different professional capacities over the years before, but after those 5 days that SNF was all about my dad. All those other years have blurred and the five days my dad was there are all I think of now when I go back there. I didn't go back for two months after he died, and then I started to think that the other residents would enjoy seeing Lena. I did go back and have been going back weekly since then, and it always tears at my heart. It has been five months now since my dad was there, but the cat stops at the door of the room where he stayed and looks in-every time. It's hard to go back in there-I know what you mean, because now that place = my dad near the end, just like that hospital will always = the time you spent there with your wife. But for me, at the SNF I know there a few people there who are bed-bound who are so thrilled to have a cat come to vivid-I can hardly keep her away. But it's hard... every time   -Laura

[KATPILOT]

Bill the good thing is that you are able to share your story here. We all listen, relate, and feel each others pain. It is hard indeed to go back to those hospitals. Anything that carries bad memories are difficult for some time. I had a similar experience watching my dad dying in the hospital five months after going through that with my bride. I had an event that took me quite by surprise. A year and a half after I lost my wife, I flew my airplane up to Calgary, Alberta to spend Father's Day with my father in law since my MIL had died just a month before and I didn't want him to be alone. When I had landed they directed me to a remote parking area where I was to meet customs. Where they put me was at the direct spot where we had loaded my wife in the air ambulance to bring her home to die five days later. I almost lost it shutting down the plane. I remember all these people walking towards me and I had to hold it together. We sometimes speak about triggers. This trigger was attached to a cannon.  It was hard. It was very hard but these feelings soften in time.

13 hours ago, mandeldog said:

  How much I love her.  How much I miss her ...

It shows Bill. Thank you for sharing.

[brat#2]

Bill, I'm sorry for the loss of your wife.  Glad you found us here and for sharing part of your story.  It was 11 months last Friday for me when I lost Dale and I know how hard all this can be.  However, this is a great place to come and tell your story, vent, cry, get mad, tell of happy memories and hopefully maybe tell of something good that has recently happened, because everyone here knows how you feel and they do not judge and are willing to help anyway we can.

Joyce

 

[iPraiseHim]

Bill, Thank you for sharing your story.  It is a touching tribute that you have shared about your wife.  My wife passed away suddenly almost 15 months ago and finding this support group has been a real help for me. Grieving is a long process and it just takes time to deal with the loss.  I was the caregiver for my wife the last six years as she became disabled from the cumulative effects of Type 2 Diabetes. Welcome to the group no one volunteered for but everyone is grateful to be a part of. Be gentle to yourself. I am learning to take care of myself as well as I tried to take care of my beloved wife.  This is part of how I honor her daily.  Get plenty of sleep, drink lots of water, and move your body. Please continue to share and find ways that work for you in handling the grief as it comes.  Hang on, Hold on; Keep on.  Shalom - George   

[mandeldog]

Thank you for all of your kind replies.  Rita did not die in the hospital where spent all of that time, but in a nursing home a few blocks from our home.  That is where I go to visit ... I look up at the window of her room and tell her how much we all love and miss her and what is going on here.  She so much wanted to visit our brand new and first grandchild (a granddaughter) in California but knew that she would not have enough time to do so.  So I told her that my daughter and I were headed out there to meet this tiny little lady ... and at the very end I said ... "and I'll see you soon."  That kind of surprised me. 

Yours, Bill