linny
Member
- Joined
- Jul 18, 2010
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 06/2010
- Country
- US
- State
- ca
- City
- woodland hills
its been so difficult to come back to this forum since my wonderful husband doug died february 16, 2011. He was a wonderful father to two wonderful sons. everyday my heart is broken and, I find the strength to live on. When I look back over our short 10 months I realize that we tried so many things to help doug succeed but, you will always have regrets that you wish there was more. My husband lost his speech so quickly, that my best advice to all of you is talk, talk, talk because the communication was the most difficult part of this disease. We were so numb with the initial news, then the progression was so rapid. We tried many experimental drugs and, vitamins. We barely had time to discuss trachs and food tubes. He did not want a trach and, for whatever the reason he was never short of breath or seemed to struggle. What I found the most valuable was the "lift chair". Even when we were using the hoyer lift and transferring became more difficult, we maintained a sense of normalcy by having him sit in the lift chair till his last few days with us. He was very much involved in the family day to day and, yet it was too difficult for him even to use a computer. We communicated with blinking and letterboards. This was the hardest thing me and my teenage son had to endure. When you are caregivers you have to remember to love you spouse and tell them so. I still am so broken -hearted that while trying so hard to keep the family together, the pets, the house, the bills that you forget that your loved one needs you to say I love you all the time. Unfortunately, I will always live with the sadness that I just didn't say it over and over. I knew that if I was too emotional, I would never make it through his journey. Since his death, all i do is cry; something I tried so hard to control when he was alive. thankfully, he is in a better place now. I will always love him and miss him terribly. My sons will always have wonderful memories of their incredible dad. love ya honey forever.