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my husband died in Feb’18 of a rare condition called Multiple System Atrophy, a form of Parkinsonism, for which there is no treatment. He gradually lost all ability to move, speak, swallow, blink and then breathe. I cared for him at home for three years. His death was peaceful, at home with me next to him and his favourite music playing, but I am devastated, even though I knew what was coming. Does anyone else out there have experience of caring for someone with a degenerative disease and watching them fade bit by bit while standing by helplessly? 

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Hi Lp, 

Im so very sorry for your loss.  Although I’m not familiar with the particulars of degenerative disease, I’m certainly familiar with the devastation of going through this process with our spouse.  My best friend, love of my life and male life partner passed in March of 2009, from stage 4 cancer.  We had just celebrated 30 years together in January of that same year.  I am in my 9th year of this journey, of learning to live without him physically here, in my daily life.  

It has certainly gotten easier over the years, but I still struggle with the loss in my life, I do really well for weeks, months, but then at a weak moment, a particularly meaningful song, or a unexpected piece of mail for mike will show up, or I will run into an old dear acquaintance that somehow missed the notifications and funeral, and it all comes flooding back, and I’m in deep grief again.  

Mike was diagnosed with stage 1 colon cancer at 48 years old, in November of 07.  At the time, we were advised by the best doctors money could buy, that stage 1 colon cancer was very curable, provided we followed the instructions, participated in all the prescribed treatments, Mike would be completely cured and back to his normal to his healthy self, by March of 08.  Well, sadly the cancer had other plans, it did not respond to any of the treatments, and in March 08 we were told the cancer had spread to his liver and we now had a very different disease, stage 4 terminal colon cancer.  They gave us 6-8 months without treatment, or hopefully, 5-8 years with chemo therapy.  We decided together, to fight, do the chemo and hope for more available treatments in the next few years.  That “chemo” year was just brutal.  Hindsight is 20-20.  We had no way of knowing, how things would turn out, I have wished many times post his passing, that we had not done any treatment and just allowed the illness to take it’s course.  He was still very strong, very “healthy” other that terminal cancer in his body, lol, but we could have afforded to just travel, see the world, visit Japan and Europe, the places we always dreamed of visiting together when we retired.  But, of course, we decided to fight for more time, to allow doctors to find a cure.  

That last year of his life, was a roller coaster, with one month the cancer retreating, the next month bounding back with even more disease, next month retreating, next month even more disease.  The week of treatments (received chemo once every two weeks) was horrible.  The week in between treatments was better.  But each week I watched Mike go from his original 6 ft 6”, football player build of 280 lbs, down to his 6’1 , 148 lbs in our 8th month of treatment.  Yes he even shrunk 5 inches in height.  We finally exhausted all available chemo cocktails in January of 09, and the doctors told us no hope at that point, and to just go home and love each other.  

He passed in our home on March 1st, surrounded by all of his family, friends, tons of love and in peace.  He was 9 days past his 50th birthday.  

My heart goes out to you.  I’m so, so grateful for my time with Mike, our love, joy, happiness.  I wouldn’t trade 1 minute.  I’m so grateful that we had the time together, if he had to leave, to say all the things we wanted to say, to share days, just holding each other, loving each other.  There were hours, days, we said nothing, just held each other and loved one another.  

When my breath is taken away, yet again, with the shock, “oh yea mike is gone”  my mind is reeling, my heart devastated, I now calm myself, sooth myself with those very sweet memories of holding each other, the words mike shared w me of being so grateful for me, so grateful for finding me so young, the great adventures we shared, the wonderful life we created despite so much anger and disgust and resentment towards us in those early years.  

Hugs and love to you,

steve

dear Steve,

Tank you for your right words.  I still can't describe what I exactly feel after loosing my dear husband in April this year. I am in a constant grief and still confused about what happened in his last weeks.

The world is only grey and white now. All colour is lost.  And yet I am surrounded by the most loving people you could imagine.

It is good to read in this mail about your love.  It is what I feel for my husband, but couldn't express.

Hugs to you;

Riet

Dear Steve,

thank you so much for your words. As you know, even with a long illness, you still go through shock. And I know that there is no “getting over”it. It is traumatic to see your spouse deteriorate physically.  And 50years old was way too young for your husband to go- Yoj must have been a couple for all of your adult lives -that is indeed a horrendously  difficult adjustment. . .but yes, the comfort we cling to is that we had the time to express our love. But even so, the pain is excruciating. I’m thankful for websites like this where people who have been the Ugh similar experiences can share, because my friends- bless them-haven’t. I feel sometimes that they must regard me with horror as some harbinger of what lies in wait for them one day. 

I think what what you say about hindsight is natural, -yes, there are things that you might have done had you known, but you didn’t know, and so I think perhaps the only thing was to do all that you both could do to fight for his life. That was the only thing you could have done.

hugs right back. 

Dear LP,

Very sorry for your loss. I know how hard it is to loose your beloved husband and not being able to do anything at all to help him.

My husband died on April 20 of this year. He had a brain tumor Glioblastoma. He lived through this horrible disease for 4 years where they had given him 15 months.

The tumor caused paralysis on his left side.

He took every treatment they proposed to him.  At first the chemo helped, and than radiotherapy. But the tumor never disappeared. And after 2 and a half years, it started to grow rapidly. 

This gave him paralysis symptoms again. He was operated twice awake to remove the tumor.  Twice it started to grow back immediately.  And from last November on, his treatment was stopped.

He couldn't walk no more then. After Christmas he  was most of the time in an hospital bed in our living room. He couldn't eat no more himself.  I always had to help him. The last months he was completely helpless.

Our daughter and I had to nurse him day and night. The last weeks, he had more and more problems with his sight. He couldn't handle the telephone no more, he couldn't watch any tv no more. And his speak became very difficult. Often people didn't understand what he was saying. 

He couldn't eat most of the food he liked no more.  Only very soft cooked food in small portions were possible.  I read out loud from books and magazines he wanted to hear, because he could not do it himself no more.

He grew weaker by the day. He could no longer keep his head straight. And still he hoped for some miracle to cure him.  Because he wanted to live and nothing else. He enjoyed life so very much.

He lived for me, our kids and grandchildren and wanted to become a 100 years old.

But it was not to be.  And he died that night in April in our own bed.  But otherwise as in your case, he didn't die in peace.  He could not accept dead.

And I feel a guilt now I didn't see it coming that night. 

He felt not well and asked me at 2 am to phone our daughter to come to our house.  I refused to do so because she only left a few hours before  to go back to her own family. She would return in the morning to nurse him.

Soon after that, his breathing became more and more difficult. I had to turn him from one side to another to help him with his breath.

And while doing so, at one moment he died without me seeing it. So the last words he must have heard from me must have been instructions how to be moved..

That was not as it should have been.  He should have died in my arms. With our kids around him all telling him how much we loved him.

It is true, we all did this in the days before.  Our grandchildren came to play his beloved music on their electric guitars the day before he died. And did so after his passing.

But with my husband so helpless and sad already for weeks, I didn't see the seriousness of the last days.  I only now know how lonely how our kids must have felt, because they knew and were not able to tell us.  They tell me now how we were never open for the bad news.  But my husband didn't want to speak about the end. And I supported him there.

Now I am asking myself constantly if it was good what I did. Maybe he did want to talk and kept silent because of me.  No answer possible anymore.

And besides that I was very very tired.  My once so strong husband faded away.  He often cried about losing yet again another function.  His poor body was demolished completely by this terrible disease.

And I , nor anyone else could do anything to help him.

I try to get rid of these images of my sick and helpless husband, but the truth is, I have difficulties to remember him as the healthy interesting loving creative man he always has been. 

Of course he passed away only about 6 weeks ago.

And I miss him so terribly.  I thought I was prepared for loosing him after the very heavy years we had. Nothing could be more wrong.  He was still there and now he is no more. And I need him so very much. 

We would have been together for 50 years on the first of May.  He looked forward to a party on that day.  In stead we then celebrated his life.

But I wished this had not happened . Not to us, not to anyone.

Dear Riet,

what you describe is close close to my experience. You’re not alone. It is still early days for both of us, and the horrible thing is that there is no shortcut to the time when we feel better able to cope. But your husband died at home, and that is where we all want to be when our time comes. That is a gift you were able to give him. That is one thing I cling to- my husband was terrified of dying in hospital. He wanted to be surrounded by family, our animals and his things-books, picture, his favourite quilt- I read to him too, since he could no longer hold a book or focus on the print. He enjoyed being read to, and I imagine thay your  husband did too. 

And yure never prepared. My husband was 20years older than ,e, so I always knew I would probably survive him, but it doesn’t make it any easier. In fact, I even thought I was prepared up until his last breath, but in no way could I have foreseen the avalanche of grief that fell n me and still does, three months on.

Just do what you can to make yourself feel better regardless of what people who have not gone through this say. 

Dear LP,

lots of Hugs and Love to you,

Riet

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