A tough month

[islandcharly]

Sadly, my ex-husband and father of my 16 year old daughter lost his 8 1/2 year battle with ALS on Thursday, Oct. 6. I'm not sure why I am writing here other than to express my thoughts and thankfullness to his life. He was the strongest, most determined man alive. He was given this diagnosis at the age of 31 and passed two months prior to turning 40. My daughter and myself were blessed enough to have spent his last week at his side and although it may sound candid, I would not change a thing. Donovan did not die of ALS, in fact to the contrary....he lived with it. He was a survivor and lived each and every day to the fullest. He was fortunate to have a loving, caring and supportive group of friends and family that stood by him each step of the way but he was the hero.... It was not unusual for him to email me and Kylee daily/weekly asking if we were okay?
On Sept. 29th, we were informed things were bad, we flew to Ontario from BC on the Sunday, Oct. 2nd and the entire week he visited with us, held our hands, joked, laughed, cried and said our goodbyes. We were due to fly out of Toronto at 9:30 am on the Thursday and he passed at 8am. He lived his life in such an unselfish manner and I only hope that I am able to live the same way. Although our daughter is going through a difficult time, she is able to understand that not only was he ready to leave this world, he was also ready to accept the other one. He left here as brave as he lived here. In all my life, I will never, ever look at life the same way. I know it is a cliche'....but there are reasons for everything and Donovan's death has taught myself & my daughter what it means to live. Donovan also leaves behind a young wife and two other very young sons who too have learnt the hard way what living,life & death is all about. ALL of us owe this to Donovan.......he will not ever EVER be forgotten.
We will meet again my hero........Donovan Robert Shaw (Dec. 17, 1965 - Oct. 6, 2005)

 

[MLECOLE]

So so sorry

I'm so very sorry to read about the death of Donovan. My heart goes out to both you and your daughter. So sad that he leaves so many people who obviously love him behind, and yes, I believe that there are reasons for the suffering that so many people endure (I just wish I knew what they were).

May I ask you a question? Was Donovan on a vent? My husband is on a vent and I'm hoping it will allow him more time with us. I'm always curious and hoping that the people who were long time survivors were vented, because that's what I'm hoping for my DH - that he is with us for a long time. I hope this makes sense.

Again, you and your daughter have my heartfelt sympathies. What a blessing to him that you were able to be there when he passed on. God bless you both, you will be in my prayers.

 

[Al]

I am so sorry to hear of your husbands passing. It is too bad that we never got to meet him through the forum. Thank you for the heartfelt tribute you have posted for him. As for the vent question it is my understanding that being vented will greatly prolong life as long as there is no other complications. Usually with a feeding tube and a vent an ALS patient can last quite a bit longer than someone who choses not to go this route. Once again my deepest sympathy to you and your family on Donovan's passing. Al.

 

[islandcharly]

Thank you both Mlecole and Al for your responses....it goes a long way! As for a vent, no he did not have one. He lived an amazing life considering he did not. In fact, he only had his feeding tube inserted 2 weeks prior to his passing. Quite ironically though, he may have had longer had he not objected to the feeding tube earlier. The ONLY thing that I think could have been done differently was that in itself. In the end, it was the 5th bout of pneumonia I think that finally took him. He soooooo loved to eat! He could not imagine life without enjoying the ONE thing he loved most and felt he could still accomplish, even if difficult. When he finally succumbed to the doctors and the tube, it was a bit late. He was already in the pneumonia stage and had little left to fight with. He did the ALS walk on Sept. 24th.....(in Hamilton) the day after the tube was inserted. He did fine. It was that night that he was put into the hospital due to resperatory failure from the stages of pneumonia.

I pray for you and your loved ones. Nothing, and I mean NOTHING has been more of a lesson of strength for me and everyone else who loved Donovan but having said that, it has been very difficult to let go. It is not for Donovan I grieve, he is in a MUCH better place - only for me.

Thanks again for your kind words!

The best to you both!
Charlotte

 

[islandcharly]

sorry, I forgot to mention, that YES, he would have lived much longer had the feeding tube been inserted earlier and if a vent had been used. It was his choice not to and it had to be his choice.

MLECOLE, you should find comfort in knowing the vent will without much doubt provide a longer life for your husband. My heart goes out to you. I pray for your strength and his.

Al, you sound very wise, thank you for your knowledge.

 

[MLECOLE]

Thanks Charly for the words of encouragement about my husband...as you know, there's so much stress and worry with this disease, but thank God we can be here for each other :wink:

Many many hugs to you. Take care of you and your daughter and God bless you both.

 

[islandcharly]

NO need to thank me........we all need support and I receive it as often as I give it. Do you mind if I ask how long your darling husband has been affected by ALS? How are the two of you coping?

I do not mean to pry, but perhaps with a little more knowledge of your situation, I can better help you.

Thinking of you,
Charlotte

 

[MLECOLE]

Dear Charly,

You are in no way prying...He was diagnosed four years ago, limb onset. He got his feeding tube a little over a year ago (just wanted to get it done and over with, he didn't need it at the time) that he now uses almost full-time since his chewing has gotten worse, and was vented this spring. He has good (hopeful) days and bad (depressed) days. He uses a powerchair fulltime and can't do anything for himself....

Thanks for your concern, you are a doll.

 

[islandcharly]

Well, very good choices for you both regarding the feeding tube and the vent........this will make things easier for you both I am sure. Four years, wow, your hubby is a trooper too!

He is very fortunate to have you...clearly you are a wonderful, thoughtful, supportive wife. I'm sure this makes his journey much easier to endure. Do you have children? If so, are they also supportive?

My best advice to you is 'one day at a time'. Focus on the 'now'.......not the 'what ifs' and 'whens' and 'whys'........Today is the only important day.

Don't forget to take some time for you as well. Being a caregiver is a difficult, stressful and strenous job. In order to be wife too, you need to give yourself some time for 'you'. I hope you do this. Do you have outside help/caregivers/home support?

I hope your day is going well.......you are in my thoughts!