Long-term illness

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Comment by justjen on June 5, 2013 at 11:13pm

Thanks so much to all of you for the warm welcome and for your thoughts and ideas.  I am sorry that all of you are experiencing this, too. 

supernova--I am hoping that you're right, that I will stop having to answer so many questions as time goes on.   I know people are generally coming from a good place, I am just very sensitive and worn out right now, and my tolerance is much lower than usual. 

Ruphkhee--my husband was a really nice and likeable guy, too, which I know is part of the reason people want to know all about what happened and why.  I am glad to hear people say so many nice things about him, but it's hard to hear at the same time.

alwayshopeful, I had actually prepared a summary for his doctors (I did a ton of research and kept track of everything), so that's not a bad idea!  I am lucky to have family and friends nearby, they have kept me going for the past few months as John got sicker and then passed. 

Mford, I also had trouble getting people to understand how sick John was.  He was in the hospital for 4 months straight, but somehow people still didn't get it.  It wasn't until he had a stroke that most people finally realized how bad things were, but by then, he was only a few days from the end. 

Suz--we heard a lot of that, too, and it would annoy me at times, even though I knew people were trying to be nice.  I don't have any widowed friends yet, either--even the group for widow/ers nearby is predominantly people in their 70s and older.  Not sure if I want to try going, I am 35 and not sure I will be able to relate.

Hello to Coopzone, Barbswife and Mysticwingz--sorry for your losses. 

Comment by Mysticwingz on June 5, 2013 at 10:37pm

Coopszone and BarbsWife - I too am new.  My husband passed on April 8th so we are all kind of within the same time.  I think I was on "auto-pilot" the entire month of April as the change in his medical condition happened very fast.  I am really having a hard time now that my family has all gone home.  I hope that we can comfort each other.

Comment by sueprnova on June 5, 2013 at 9:56pm

Coopszone, Welcome to our little piece of the Universe.  You're fresh and raw, as are you BarbsWife...so don't expect too much from yourselves.  If you can or can't make it a day without crying...then it is what it is.  

There is no right or wrong way to mourn the loss of your love.  Do what feels right.  It will change from day to day...week to week...

We all get it.  

Peace, 

Sue

Comment by BarbsWife on June 5, 2013 at 9:40pm

Coopszone.  I am so glad you found this site; it has been a great source of comfort to me.   I lost the love of my life on April 1 2013, several months before our 16th anniversary and after a 19 month battle with the dreaded C.  I am now just over two months out.  I also feel like the first month was easier--I think in some ways that as time goes on the permanence of all of this really sinks in and every day new things come up that you have to decide "alone".  

So glad you have a good support system around you.  

Tamera (Barb's wife)

Comment by Coopszone on June 5, 2013 at 9:34pm

Hello all, I am new here. I lost the love of my life on March 7,2013, 17 days before our 20th anniversary. He suffered for 17 months with bladder cancer, had his bladder replaced at U of M and got a neobladder. Was doing well but it had gotten in the lymph nodes. He was 63 years young, I am 58. I miss him terribly. I have probably only made it through 3 days without crying since he died. Seems like that first month was easier than the last two. He will be gone 3 months Friday. I work two days a week and babysit for my 20 month old grandson and 15 month old granddaughter two days a week. Now that Papa is gone I am on my own. I hate having to make all the decisions. We had hospice come in about a month before he died but he was able to die in his home with his family all here. I go to the Hospice Grief Group and it has helped. I am happy to have found this group. Need to be with people who understand. I have a wonderful family and friends. Even his ex wife still calls me to see how I am doing.   Connie

Comment by Suz on June 4, 2013 at 3:48pm

Hi JustJen,

Welcome to our site. I am glad you have found us but so sorry you have to go through such a sad situation. I have a daughter that is only four years younger than you, which really puts this in perspective. I lost Jud after thirty-seven years of marriage and forty years together. He didn't have a rare illness but he had a nasty one...pancreatic cancer. I grew tired of people saying that he was going to make it or that medical science was making great discoveries every day! We both knew it was just a matter of time. I was the one in the family with the odd conditions, though none of them is life-threatening. I don't even tell people their names anymore or I tell them to Google it (well, usually I am not that rude!!!) It does get old! I think you will find this site to be a comfortable and welcoming place. I found it two months after Jud died and it really saved me. I have no friends who are widows yet and you really feel "out of sync" with the rest of the world. 

Sending you the warmest of welcomes. I am glad you are here!

Suz

Comment by Mford4 (Marlene) on June 4, 2013 at 6:51am

Dear Justjen, welcome to this club no one ever wants to join...this is the place where you will walk this journey and not feel alone or totally crazy.  My husband had so many "rare" diseases that if I heard one more doctor tell me, "we don't often see this", or "this is very rare that is why we had trouble picking it out", I wanted to scream.  My husband never had a "normal" illness.  I know so many rare medical terms that doctors who talk with me today think I am a medical person by training.  

The frustration I often felt in getting people to understand how sick Pat was often overwhelmed me.  And my husband's personality was so positive, upbeat and welcoming, that I would joke with him to at least act sick now and then so people would believe me when I would talk about it. 

He was sick.  It was a struggle to get through the 13 years of his illness, the last 8 which were the worse.  He was totally bedridden for almost 2 of those, hospitalized more times than I want to think about, not taken serious enough by his family doctor to allow for us to get the home help I so often needed.  It was an assistant of his that FINALLY brought hospice into our home.  

So I get what you are saying and understand completely how you feel.  Welcome and lots of hugs...

Comment by Timetoheal on June 4, 2013 at 2:29am

JustJen, I as well as alwayshopeful, dealt with glioblastoma for 14 months. So much explaining about it and why its one of the most deadly forms of brain cancer. How it effects the person more being in the brain...how quickly it takes them..I put together a GBM fact sheet for family and friends. It took all I had to take care of him and explaining was the hardest part. People will understand if you hand it to them and tell them its just too hard to talk about but thanks for asking. Being young too everyone thinks you should move on sooner. I just tell them it is what it is and I'm living with the pain now so he doesn't have to. I miss him every single minute and its my grief to own. I get time will heal us and god only gives us what we can handle....my reply is "it's not a challenge god" I'm going to break soon. Then I have a daydream of my hubby and I on a beach, holding hands. What a beautiful feeling I get and I remember this pain I'm in is because god needed him more. I don't know why and even yell at god about it but it doesn't make it any less painful. I get up every day to remember the time I was given, tears and all. Thursday will be 12 weeks. Where has the time gone? It feels like yesterday and an eternity at the same time. It is still so new for you, give it time and don't punish yourself for living. You DH would want to see you live, smile, yell and even laugh. You'll get there. Hugs to all and welcome with my deepest simpathies to all the new members.

Comment by alwayshopeful (Jocelyn) on June 4, 2013 at 12:23am

Dear Justjen an dRuphkhee. I'm so sorry for both of your losses. I work for my father's company and know how difficult it was when everyone would tell me how sorry they were about his passing from ALS, so I can't imagine how tough that is to deal with when it's your spouse.

Just jen. I lost my husband of 37 years to a 21 month long battle with glioblastoma, GBM or brain cancer. I had a lot of explaining to do to his family all along the way. I have been widowed 7 months. Here is what I would suggest. Please do what will help you! I personally think a FAQ printout might save you some heartache. Perhaps you have something from the medical folks? If not, perhaps you could print some pertinent facts from the internet. Also, in my opinion, if you don't want to explain such a complicated disease, perhaps you could just say you would rather not talk about it right now. There is no instruction book for what we are all going through. I'm terribly sorry you have to go thru this at such a young age. What a painful tragedy. The first few months are such a challenge. I hope you have some support from family and friends. Let them help you if you can. My deepest sympathy on the loss of your spouse. Jocelyn~

Comment by Ruphkhee on June 3, 2013 at 11:45pm

My husband passed on4/5/13 . 4yrs. of Non Hodgkin's Lymphoma. It isn't any kind of rare disease. I don't have any advice on how to cope with having to tell people the same thing over and over. I'm  kind of in a similar situation. I own a service oriented business and my husband worked for me. I mostly handled paperwork accounting behind the seen. He operated the daily business. Although he had cancer, he worked most all of the 4yrs. So now I have my son working in his place. Well I'm answering the phone everyday now and my husband was/ is a great guy ? So I'm getting a lot of condolences. The hard part is when they didn't know about his illness and I've told the same thing over and over. It's very hard on me and a lot of them get really sad. I know where your coming from justjen. So sorry for your lossas well.

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