Stories

Living with Alzheimer’s disease: Barry’s story

Barry was in his early sixties when he was diagnosed with Alzheimer’s disease. He and his husband, Randy, had recently moved to an idyllic new town on Cape Cod, excited to start a new chapter in their lives. The diagnosis meant that he not only had to give up his job, but also his plans for the future. Worried about the loss of awareness of himself and his life that would ultimately come, Barry prepared his will and visited assisted living facilities. Making these decisions now gives him a sense of comfort that he is still in control of his own life. 

Transcription

Barry: I used to do a lot of freehand drawing. That is one thing that I'm sad to say I've lost. My name is Barry, and I was diagnosed with Alzheimer's about five years ago. 

The one thing that I found the most difficult through this whole process is being younger, so to speak. I was 61 or 62 when I was diagnosed. I'm now 66, but I had planned on working this whole time. I truly enjoyed what I did: interior design, kitchen design, custom cabinetry design, and it was something that I was doing and was successful at. And it was a sense of pride. It was a sense of income. 

A lot of people, my friends in their sixties and seventies, still working, being productive. That's sort of been taken away from me. 

I was already panicking that time was ticking. You know, before I lost awareness of me, my life, and then my husband, knowing that it's going to be harder for him. At one point I was like, you should go your way, I'll go my way. I don't want to, you know, you didn't ask for, you didn’t sign up for this.

Randy: I was ignorant to the disease, so I really didn't know how to react other than the fact that I knew that it was something that would eventually take his life. And quite honestly, put us in a situation for many years to come that just really didn't fit into our plan. We were at that sweet spot where we're looking forward to living on the Cape and doing what we wanted and spending time together. It just felt like everything crashed. So, there was terror. There was sadness. There also was a time that we kind of started to pull our bootstraps up and say, we've got a plan for the future. 

Barry: I started to get things in place. We actually visited a couple of assisted living homes.

If I could make some decisions prior to, then that's off the table. I may not know exactly what's happening, but I'll know — I know now from peace of mind that those are things that I've sort of pre-selected, those I took control of with the will and how, you know, my husband is going to continue on after me. 

Randy:  You know, it goes back to the for better or worse. He is my soul mate, and the plan is to be together for a long, long time.

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