My heart goes out to you. I know so much of what you are dealing with. I only posted once before on this site and it was in regards to the two diseases your husband has. My husband had dementia since he was 45 and then at the age of 58 he began showing ALS symptoms. The dementia was very slow in progressing until around 2006 when it began progressing faster. We began noticing speech and swallowing difficulties towards the end of 2006. In the spring of 2007, his wrist was becoming affected. I could see my husband slowly slipping away from me and it was horrible. I can't take up the space to share too much. I hope to begin a website or blog soon to try and encourage others who have to walk through such a nightmare. Dave was diagnosed with ALS in July of 2008. At that time his upper body was being affected by the fasciculations. He went to the ALS clinic in Grand Rapids, Michigan in October. They confirmed the diagnosis of the bulbar form of ALS, but basically said the ALS was throughout his entire body at that time and they were only giving him six to eight months to live. My husband passed into the presence of His Lord on December 6, 2008. He never understood either of the diseases. Because of the dementia he couldn't understand the limitations he needed to be under with the ALS.
I understand the need to get away and to take the moments you can for peace, joy and relaxation. I believe with both diseases against him you should think really seriously about the decision to go so far from your family, doctors and your comfort zone. Both FTD and ALS cause the victim to be unaware of their own actions. Will you be able to control his actions in a strange environment? My husband went to daycare a couple of days a week last summer. It was difficult to even transport him the forty minutes back and forth to the daycare. I couldn't stop and run any errands when he was with me. He didn't understand he needed to stay in the car and would try to get out even though it might mean he would fall without my assistance. Taking him to the bathroom was difficult because he didn't have the use of his hands any longer to be able to pull his pants up and down. I couldn't go into the men's bathroom with him and he wouldn't go into the ladies with me. Very few places have family bathrooms.
I believe without the ALS my husband would still be alive. FTD patients can live many years. My husbands father and his brother (twins) both had a similar early onset dementia and they lived until they were 67 and 68. With the ALS my husband died at the age of 59 1/2. I'm surprised the doctor would tell you that the dementia would take your husband first. Generally the ALS is what causes the body to shut down. It is a disease that literally eats away at the persons body. It is horrible to watch. I'm sorry this isn't a very hopeful answer to your questions. I know though there is joy and laughter in the midst of the pain. Know that others understand the path you are walking now. Please feel free to email me directly at email@example.com
if I can be of any further assistance.