New to Grieving

[GeneB]

This is my first post as my wife passed away on November 21st. She had a rare brain disease Progressive Supranuclear Palsy (affected movement, speech, swallowing, and eyesight). Numerous falls in early 2011 with a major fall in 6/11 that broke her neck at C1 and C2. Fusion was successful but she never recovered enough to walk again and was basically helpless with her legs. Her swallowing deteriorated and in May this year had to have a feeding tube inserted. This only partially solved the problem as she still aspirated and refluxed. She had three bouts of pneumonia since May and the last one was so bad that she did not survive. Her speech got so bad that I could hardly understand her. While we knew there was no cure for this disease, we also knew that the average life span after the PSP diagnosis in June 2010 was 6 years. But she only lasted 2 1/2 years after diagnosis. I was her caretaker the whole time. You hear that knowing someone is going to die makes it easier when their time comes; I am here to tell you that doesn't seem true. I hurt so bad and I am trying hard to cope. We had 56+ years of wonderful marriage (I am 75 years old) and it was so very hard to lose her. It was a lot of stress to care for her but I wanted to do it and now I have this big hole in my life. I look forward to reading about how all of you are coping so that it will help me.

GeneB

[widower2]

Gene I'm so sorry for your loss. Know that caregiver/helpless feeling. Hope the site does help.......

[Caremal]

Gene I know of PSP. and as you know falls are the major cause of death with that disease. I am so sorry she fell and broke her neck. I am sorry she got sick and could not get better. My friend passed away from that 4 years back and I have known others as well. Knowing she is gone is not nice or fun. We here are all missing someone special in our lives. My husband passed away 8 months ago. Knowing someone has a disease and will die someday as my husband did I thought it would make it easier. This is not true at all - they are all diffacult. I thought I was all ready well NOT even close. The only way to make it is to walk threw the pain of our grief. Cry, stomp your feet, hit a pillow, Scream, Do what you need to or want to do. I find it helps to journel some my husband and I often sent letters to eachother so it is natural for me to do so. This is a really good forum to read and get things off our chest. We are members of a group we never wanted to join and yet we are here. We all support our members and somedays are better then others. When your up you support others when your down we support you.

Hang in there This too shall pass.

Carol

[Izzy]

Can I join in? I lost my hubby on Oct. 25. I miss him so! I need to learn how to deal with this,but listening to you guys i know this is normal.How do you go on?

[widower2]

Hi Izzy, I'm so sorry for your loss. It is very much a one day at a time thing. I suggest reading through some of the posts here, and if you see any of us in chat, pop in and say hi. And of course feel free to post any time and vent/etc.........best to you!

[UnderHis Wings]

This is my first post as my wife passed away on November 21st. She had a rare brain disease Progressive Supranuclear Palsy (affected movement, speech, swallowing, and eyesight). Numerous falls in early 2011 with a major fall in 6/11 that broke her neck at C1 and C2. Fusion was successful but she never recovered enough to walk again and was basically helpless with her legs. Her swallowing deteriorated and in May this year had to have a feeding tube inserted. This only partially solved the problem as she still aspirated and refluxed. She had three bouts of pneumonia since May and the last one was so bad that she did not survive. Her speech got so bad that I could hardly understand her. While we knew there was no cure for this disease, we also knew that the average life span after the PSP diagnosis in June 2010 was 6 years. But she only lasted 2 1/2 years after diagnosis. I was her caretaker the whole time. You hear that knowing someone is going to die makes it easier when their time comes; I am here to tell you that doesn't seem true. I hurt so bad and I am trying hard to cope. We had 56+ years of wonderful marriage (I am 75 years old) and it was so very hard to lose her. It was a lot of stress to care for her but I wanted to do it and now I have this big hole in my life. I look forward to reading about how all of you are coping so that it will help me.

GeneB

"You hear that knowing someone is going to die makes it easier when their time comes; I am here to tell you that doesn't seem true. " I don't see how it could be true, but I haven't lost anyone suddenly, and I don't think there can ever be a loss as great as losing a spouse, unless it's a child. Anyway life is lonely and sad right now, but I take one day at a time. My husband was diagnosed with cancer in May 2012 and passed away in September 2012. The best we can do for you is tell you that you can talk about her here and we will try to cheer you up if possible. Humor helps me a lot and my husband was always doing something goofy, so some of my memories make me laugh. I thank God for laughter!

[Jane A]

Hello Gene and Izzy:

I am so very sorry that you need to be here: but since you are, welcome to one of the few places where everyone feels your pain because they're either in the same situation now or have been there already.

Gene, I did not know about Progressive Superneuclear Palsy so I read up a bit on it. It certainly seems like a cruel disease, and I am so sorry that your wife was not able to beat the pneumonia. My husband had lung cancer, but he actually died from pneumonia also, after spending a horrendous 12 days trying to fight it in addition to the lung cancer.

Izzy, you are right, it's one thing know that what we feel is normal, but knowing that doesn't change how we feel when they actually depart and we are left to pick up the pieces. I guess that somewhere deep inside we manage to retain hope that our own loved one will be the rare exception to the stats, or that the stats are wrong/out of date, or that the doctors got the wrong diagnosis, and it isn't until they have gone that the whole reality hits. At least until then we can do our caregiving and feel that we are at least doing something to help them. Once they have passed we have nothing left to fill up our days and nights with busy-ness; and we lie awake sleepless because we can't say goodnight to them, nor feel peace or relief when they go off to sleep, nor plan for what we are going to do the next day to make life better for them. And it never, really, changes, but I think that the longer it is, and the more we can express our grief and anger, the better we get at coping with it. (My husbamd died in 2009 and earlier I used to go outside with a dozen eggs and pitch them against the trees at the back of the garden and scream out in anger or despair ... now I can do with only half-a-dozen eggs before I can get myself back under control!)

I hope that you will be able to come here and share your grief or pain (or things that bring you some peace!) knowing that all of us understand and will do whatever we can to help you get through this most difficult time.

Jane

[Tab]

I guess that somewhere deep inside we manage to retain hope that our own loved one will be the rare exception to the stats, or that the stats are wrong/out of date, or that the doctors got the wrong diagnosis, and it isn't until they have gone that the whole reality hits.

That is exactly where we were, all the way up until we came to find out that surgery was no longer an option. Even then we were given 2-6 months only for the monster to take her 13 days later. It was only after she died that the full gravity of it all struck me. I've yet to recover.

At least until then we can do our caregiving and feel that we are at least doing something to help them. Once they have passed we have nothing left to fill up our days and nights with busy-ness; and we lie awake sleepless because we can't say goodnight to them, nor feel peace or relief when they go off to sleep, nor plan for what we are going to do the next day to make life better for them. And it never, really, changes

This is precisely where I am at right now. I feel I lost my purpose and have nothing but time on my hands now that the care of her is over. That doesn't bode well when you are missing the one you love so much.

[Tab]

I am sorry for your loss Gene. I am sorry for what the both of you had to go through. I am sorry for what you had to witness.

I think those of us that was/are/will be caregivers bear the burden of witness to the vicious ways life can be taken from us. I believe that burden is heavier and much more cruel for the caregiver when the life that's taken is someone you love.

[Jane A]

Please... take care of yourselves. I sense a lot of despair on many of these posts. I am here to tell you that, hard as it is, you can and you will get through this most difficuit time. You will do it on your own timeline, as no one is the same with grieving, but make it you will!

It took me what felt like forever .. four long, seemimgly endless years, plus counselling and drug treatment and and over a month in hospital ... eventually some time between all these "interventions" and backsliding pain I finally recovered from most of the ill effects, and the meds I am on now seem to keep me generally okay (I still see a "shrink"' every two months -- both to keep on the meds, and also because I live in Canada and I have been advised to keep on seeing him every month or two by my GP; so that if I relapse I will remain on his patient list and will not have to wait to get an appointment.)

No I do not think that my life will ever be the same, not like it was, but I can now remember the happy times, and talk about them with appreciation rather than pain, and although I have not created a new me, I have been able to live as "myself by myself" and have separated that from "myself as a wife" and even "myself as a mother". So I am still me, but have finally become just myself -- alone -- and have found in a way that it is lonely, but in another way it has been liberating in a sense that now I need not be defined by anything or anyone but myself.

Please remember that you are still you, not just a spouse, or a father or mother, and that you have a right to be YOU, not just an appendage or support to someone else. I am thinking of you all, and wish you serenity and peace.