Partnering Together and Dealing With Issues Early

By Arlene Jeffrey, family partner in care

My husband, Bill, is 63 and was first diagnosed with Cognitive Memory Loss about 3 years ago and began using Aricept about a year and a half ago.  I noticed some behaviours that concerned me about 7 to 10 years ago and he lost his job 5 years ago.  I am sure that the memory loss issues was the reason he lost his job.  He told me that he started asking people to remind him of things.

He has never had a good memory so it was difficult to detect at first.  I knew something was wrong when he had difficulty finding things in the kitchen.  He had always done the cooking so it raised a red flag for me, especially when I found him using a recipe one day - he had never done that before.

The progression of the illness in his case is definitely slow.  For this reason, we have been able to cope fairly well with the changes as they happen.  It is much more difficult for those who have to deal with a fast progression because they don't have much time to deal with each change as it occurs.

Last year we began using the services of the Alzheimer Society and it has helped us a great deal.  I have always been a proactive person, so I took a couple of classes myself to learn more about the illness and how I could best help my husband.  Then my husband agreed to join me in going to the classes that were geared for both of us.  The fact that my husband is open to working together to educate ourselves has made our journey much easier.

I know that I felt that I would be much more able to cope with everything by acknowledging the problems and dealing with them early, so we are prepared for what may come later.  I also felt this was the best way to know about any new services that are available.  I think we are both coping well also because we have met others going through the same experience and we can all learn from each other.

I have to commend the Alzheimer's Society of Brantford/Brant County on the programmes and services they offer.  My husband is in the Day and Stay programme each Thursday.  This gives him a support group where he can vent and learn more about strategies to cope with what he is experiencing.  I got to a support group once a month.  We both participate in the monthly breakfast programme.  As well, I was able to enjoy 2 days in September at the caregiver retreat.  Apparently, the Brantford Society is the only one that offers this service.  It gave all of us a chance to get away from it all and enjoy catered meals and all the activities that were offered - massage, reflexology, square dancing, and entertainment as well as lots of free time.

The advantage to accepting and dealing with issues early is that you can have peace of mind knowing you are doing all you can at the present time because you have prepared for the future.  For example, even though my husband had never wandered, he was very open to being registered in the "Safely Home" programme.  He knew it would make me feel more comfortable and I felt it was safer to have that protection before it was necessary.  He also decided to have a discussion with the family about issues that he may not be able to voice properly later on.

Unfortunately, not everyone is willing to take steps before they are required and I just feel that this puts you at greater risk.  I can empathise with those who are attempting to engage people early one.  A lot of people just don't want to deal with issues until they are forced to.

I think greater education would help the general public to realise that not everyone with this disease is housebound or unable to continue regular activities.  Most can continue to do activities they enjoy for a long time with the help of others.  In fact, when there is a group of people, it would be very difficult to determine who has memory loss, since it is generally not noticeable until the later stages of the disease.

Because of our early involvement, we were able to participate in the MAREP workshop in Toronto this November.  We were pleased to be able to express our ideas and have a chance to interact with others who are going through the same process.