Nancy Scott’s husband has dementia. It was tough at first, but now they are managing well.

By Nancy Scott

My husband, Randy, was only 53 when we first noticed signs that he may have dementia. That was over a year ago, and during that time we went through the difficult process of getting a diagnosis. Today, his dementia has progressed, but we are managing well.

The first six months were really hard. It was tough for me to deal with Randy’s anger and frustration. After he lost his driver’s license, I had to change my work schedule so I could drive him to his workplace. Then he lost his job. These were huge adjustments, and Randy was not accepting of things.

But then came the second six months. This may sound odd, but they were pretty glorious. Once Randy accepted that he had dementia, he started to show his gratefulness to me. We hold hands all the time and he hugs me when I come through the door. 

I understand that Randy has had to give up a lot of control, so I try to give control back to him whenever I can. I give him the chance to make choices about small things, like choosing a parking spot. I’m the one who makes the credit card payment at the gas pump, but Randy’s the one who grabs the nozzle and fills up the tank. I always thank him when he does things for me.

I know things will continue to change, and we will have to make further adaptations to the way we do things. Right now I admit to feeling stretched. Randy’s dementia is progressing to the point where I can’t leave him alone for long. We pay for some help, and we are on a waiting list for Family Managed Care. 

But through it all, Randy and I still communicate with each other. I keep him informed of all decisions, big and small, and his expressions of appreciation continue to make things easier.

Here are my tips to help you understand: 

1. Don’t give up on getting a diagnosis. Advocate! Keep pushing until you get connected with a doctor who understands. The Alzheimer Society of Manitoba can help to connect you.

2. Be flexible. Be prepared to do things differently as the disease progresses.

3. Keep family members and friends updated on any changes in the person so they will understand.

4. Let the person with dementia take the lead. Know what upsets them or causes stress, and avoid those situations.

5. Get your affairs in order. There’s a lot of paperwork, and it’s a challenge! The disease can progress quickly, and it’s best to be prepared. 

6. Call the Alzheimer Society for help. The client support staff will help you to problem solve – and they are a shoulder to cry on if you need it.

January was Alzheimer’s month, but this is a disease that deserves better understanding every month of the year. –DD