Dawn R. - It is Not All Doom and Gloom


Two years ago this month my 55 year old husband was diagnosed with Young Onset Alzheimer's Disease. This was not exactly unexpected as we had seen "symptoms" for approximately 2 years before he was diagnosed. The past two years have been extremely difficult in many ways watching my strong, handsome, smart husband become totally dependent on me. He is no longer able to drive, pay the bills or even write his own name without assistance. He has no idea how old he is, how long we've been married, how old our children are. If he gets lost (and he has) he can't provide any details to them to get himself back home safely. He does not know his phone number or address. Simple tasks for us become mountains to him. Tasks such as putting away the silverware takes him a long time and we are never sure where we will find things after he has helped. I've thrown out more food that he has left out of the freezer than I care to think about.

However, it is not all "doom and gloom". He still enjoys my company, tells me how much he loves me, still has his wonderful sense of humor and can still make me laugh. He finds such joy in just sitting next to me on the couch holding my hand.

I have learned that I have greater courage and patience than I ever thought I'd have. Issues that at one time would have seemed huge no longer bother us. We now live day to day and no longer "sweat the small stuff." When we find ice cream on the counter, melted, we just laugh about it and say we now have chocolate milk. Sometimes when we come home with groceries my husband will ask me if I just want him to leave it on top of the freezer to save ourselves time. Like I said, his humor is still intact.

Balancing my working with his safety and well being has been difficult. While I'm at work I worry about him and hope he's safe. I worry if he's lonely or did he eat lunch. When I stay home I worry about my job. I am only 50 years old and I still have 5 years before I can draw a pension. I need to make sure I have medical insurance and other benefits. I am very lucky to work somewhere that is willing to work with me and give me the flexibility I need.

Alzheimer's is such a devastating disease. A few years ago we had looked forward to being able to retire to our "dream home", maybe finally do some travel, spend time with our grandchildren. All that has changed now. I have no idea how long I'm going to have him with me. I'm terrified of the day when he no longer recognizes me. And it saddens me to think of his last days when he won't even be able to find comfort in his memories of a life well lived. He won't remember the day we walked down the aisle, the birth of our children and grandchildren, the memories we created. Every year we participate in the Memory Walk to raise money and awareness of Alzheimer's. My husband, son and I have participated in documentaries to show the devastation of this disease. We had decided early on that, while we couldn't actually go through this disease with my husband, we would do everything we could to raise awareness of it. As we are proof, this is not just an "old person's" disease.

Tags: Spouses and Partners