WAM - Deb and Rocky

September is World Alzheimer's Month

September is World Alzheimer’s Month. Throughout the month, we are going to say hello to some of the people who have shared their stories with us over the years. For some of these people, their caregiving journey has come to an end, while others may be a further along on their journey from when we last spoke. But wherever they are, these caregivers are continuing to share their stories to raise awareness about Alzheimer’s disease and other dementias, to honour their person who lived or is living with the disease and offer support and guidance to those on their own journey.

Follow along here and on social media.

Deb and Rocky

We first met Deb and her husband Rocky, living with young-onset dementia, for a story we did on a support group for the 2019-2020 annual report. Rocky was living in a long-term care home and was confined to a wheelchair. Rocky passed away on Nov. 29, 2021. He was 66 years old.

How are you doing?  

I’m OK. I am trying to find my new normal. You don’t just loose your partner, but also the staff at the home who become like extended family.

How long was Rocky in long-term care?

Rocky went into long-term care in March 2017.

Were you hesitant to put him in long-term care?  

Initially, I was reluctant. I visited some of the homes and was appalled at the way people were treated - the lack of space, the lack of humanity. People were sitting slumped over, were dirty and smelly and staff were yelling at some people.  

An acquaintance told me to check out Lakeview Manor in Beaverton. I was concerned about the distance, but after visiting and seeing the home and the outdoor space and watching the staff, I felt it would be a good fit for our family.

What it was like after Rocky went into long-term care?

I found sleeping difficult. I kept listening for Rocky to get up during the night. I had lost my job because I had to stay home to look after him and was suffering from caregiver stress, but my employer didn’t believe that was a “thing”

Any advice for people trying to make a similar decision?  

Visit homes at different times of the day. Conditions differ depending on what’s going on. It takes time to get people cleaned up after meals, so it may appear they aren’t being cared for properly, which may not be the case. Ask families of residents what their experiences have been. It’s the best indicator of what to expect. 

September is World Alzheimer's Month. What do you want people to know about Alzheimer's disease/dementia?  

The disease can creep up on you and you don’t realize what’s going on. It’s horrific to watch someone who is outgoing, adventurous and capable suddenly not know how to relate to people, being paranoid about silly things and forget who you are. Mood swings, aggression, financial challenges, radical behaviour, loose of communication are just a few of the challenges you may face.

What do you want readers to know about people living with dementia?

They are still there. A simple touch, holding hands and talking to them is invaluable. Be patient with them and with yourself. It can be so frustrating to come to terms with the changes.  

In my case, Rocky declined quickly. His communication skills disappeared pretty significantly within a year of diagnosis, and within two years he was in a wheelchair and couldn’t feed himself or use the bathroom. They are locked in their bodies with a mind that is failing, but they are still human and should be treated with compassion and respect.  

What did you value most about AS York?  

The DAY program staff were amazing. The support they provided and the music program that Rocky connected with was truly a blessing. The support group and the people I met there have been invaluable. A lot of us get together regularly and we chat through Facebook and Messenger. People from the young-onset dementia support group were my shoulder to cry on and my support when I was looking at long-term care homes or when I didn’t think I could get through another bad day. They help me when Rocky went into long-term care and I felt guilty about making the decision.  

Anything else you would like to say?  

People need to be more aware of what dementia is. It’s not just Alzheimer’s disease and its not just forgetting things. It (ticks) me off when people assume that if they forget where they put something, they must be getting Alzheimer’s.  

It’s also not just a disease only of the old. Unfortunately, the long-term care homes cater to those who grew up during the Second World War and the music programs are geared to people in their 80s and 90s, not those in their 50s and younger. There is no place for those with young-onset dementia: They are a forgotten group.

People, generally speaking, are ignorant about what dementia is and the impacts on the individual and the family -  the agony of watching someone disappear and fade away; the friends and family who don’t understand or know what to do so they stop calling or coming around, making the caregiver feel more isolated and lonely.  

Then there are the legal battles you fight in order to get financial support including retrofitting your home to accommodate limited mobility with no financial support.

The scope of the disease is mind boggling.