I noticed two things: her forgetfulness and her anger. Both were a change from how she was before. But she was taking Prednisone and asthma medications, which sometimes had the same side effects, so I didn't worry about it at first. 

She was hyper tuned into me, and picked up my expression and voice more than she ever had. She'd misunderstand things I'd say and I wouldn't have any idea why. I never knew who or what would upset her. It was exhausting.

How would you describe what you were feeling in those days?

Frustrated, confused, very sad....but one thing sticks out: lonely. I could go to lunch or dinner with friends, I could go to the gym, but none of that made up for the loneliness of living with someone who I couldn't talk to any more. And our friends really tried to help, but they didn't understand it either, and it was hard on them to know how to act. Eventually we had to give up the social things we used to do.

You cared for Susan at home for 3½ years after her diagnosis, before finally moving her to a long-term care facility. Did it get harder?
Yes and no. Yes, in that Susan herself got worse as the disease progressed, and she could do less and less for herself. But when I finally came to the realization that I needed to accept her as she was, because she couldn't help what she was doing...when I finally realized that she can't change, I'm the one who has to change...then I guess the caregiving part got a little easier. It was never a specific thing or event, it just evolved from reading, going to support groups, and learning more about the disease, and it finally sunk in: you can't fix Alzheimer's.

How did you do that?

As I learned more about the disease, I simply changed the way I looked at it, which helped me change my expectations of her. I stopped trying to explain things to her, stopped trying to force her to understand. I learned to laugh at some of the odd things she'd do, instead of beating my head against the wall trying to figure out why she did them. There is no "why" in Alzheimer's! For instance, one day we were riding in the car. She opened her purse and pulled out a toothbrush and toothpaste, and starting brushing her teeth. Used to, this would have upset me, and I'd have asked her why she was doing this and would've tried to explain that you don't brush your teeth in the car, and on and on. But this time I just kept on driving and when she was finished brushing, I calmly asked, "So now what are you going to do with that toothpaste?" She simply picked up a water bottle, swished her mouth with water, and turned and spit it out the window! I just laughed, and so did she. It taught me that she could still do things, but not necessarily what I thought she could do! It was funny then, and it's funny now - if you can look at it like that. It's a lot easier than trying to make sense of dementia.

So knowing what you know now, what worked and what didn't work, and what might you change in how you cared for Susan?

I knew from the start I had to take care of myself so that I could take care of her. I made the effort to continue doing things for myself - my hobbies, lunch with my friends, etc. But I was looking after her 24/7, without a break, for a year and a half, and I realized I couldn't keep going like that. I knew I needed more support, so that's when I got her started in the adult day program so I could get some time for myself. It made a huge difference.

I didn't do some things I should have done sooner - like starting Susan in the adult day program. But she was resistive to the idea, and I just didn't know any better. However, when she finally did start going, she really enjoyed it, and it made things so much better for me. Looking back on it, I realize now that this was the beginning of my learning how to live without her... although I couldn't have admitted that at the time. It's hard to start doing things by yourself (we had been married nearly 50 years), but if I had kept on the way things were going, both of us would have become more and more isolated, and that would have made things even worse. The other thing I should have started sooner was going to a support group, which I started doing as soon as she was in the adult day program. It was a tremendous help. Up to that point, all I knew was what I had read in books like The 36-Hour Day. But the support group put me in touch with other people who were going through the same thing I was. I'd hear them talk about ways to handle this or that, and I'd think, "maybe that would work for me."  I went twice a month from then on.

It's not a support group. 

It's not a meeting.

It's  just a bunch of guys getting together. 

First tee-time is

Tupelo Honey South

No RSVP required, just come join us!

For more information, contact Woodie at 828.712.9726 or  woodrow344@yahoo.com