WAM - Jennifer and Feroze

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.

Jennifer and Feroze

We first met Jennifer and Feroze for an Alzheimer’s Awareness Month story in January 2020. At the time Jennifer was trying to look after her partner, Feroze, who lives with Alzheimer’s disease. Jennifer later spoke at a caregiver event, sharing with people about her life as a caregiver, a role she didn’t want.

Feroze is now living in long-term care and Jennifer is finally able to put herself first – taking care of her health and writing her fourth novel.

Last time readers heard from you, you were just putting Feroze into long-term care. How long has he been in there for now? How is he doing there?

Feroze has been at Bloomington Cove for over two years and he is doing very well. He was painfully thin when he went in, but he has gained weight and is looking good! They have been able to adjust his medications to keep him comfortable and reduce agitation and delusions, all of which were problematic for me as a caregiver. It’s reassuring to know that a nurse is always there, and a doctor is on call. A dental hygienist comes for scheduled cleanings, too. When he was living at home, taking him to the doctor or the dentist or, worse case scenario, the emergency department of the hospital was really challenging and extremely stressful. 

Where does he think he is? 

It varies. 

On the day he was admitted to Bloomington Cove, I said I was taking him to the AS York DAY program. He always enjoyed going there and I didn’t want to upset him by telling him he was going into long-term care. By that time, I had learned the art of therapeutic lying. Maybe because of that, he sometimes still thinks he’s at the DAY program and that I have come to take him home. So I have to invent a reason as to why that isn’t happening, e.g.  “I just have to pop out and pick up something for supper, I’ll be back soon.” If I’m not back for a week, he doesn’t seem to notice! Other times he thinks that I live at Bloomington Cove, too, and that my office is just across the hall, which is similar to the setup we had at home! 

A few times my sons have been able to pick him up and bring him back home for an afternoon. For the longest while, I was concerned about doing this, thinking he might not want to return to Bloomington Cove, but it’s been fine. He isn’t able to verbalize that he is back home where we lived together for almost 40 years but he is comfortable and relaxed here and obviously feels “at home”. When it’s time to go back to Bloomington Cove, we just have to come with an appealing activity such as “Let’s go for a drive in (son) Tarik’s blue car.” Feroze has always loved cars and he still responds well to this suggestion.  When we get back to Bloomington Cove, he is tired after being upright for several hours, so responds well to, “Let’s go find your bed and listen to music.” If all else fails, food is a motivator!  

You got sick yourself (the catalyst for putting Feroze into long-term care). How are you doing? What have you been doing?

It was a difficult decision and one you made at the height of the COVID-19 pandemic, do you regret your decision to put Feroze into long-term care?

I wasn’t an easy decision, especially during COVID-19 and I did wonder if I was a horrible person! But I was at the end of my rope. I did the best I could for as long as I could, so, overall, I have no regrets.

Although when I arrive to visit and find him washed and shaved and diapered and dressed and looking 100 per cent normal … when all I have to do is sit with him and talk or go for a little walk, the guilt can sneak back in, telling me I could have kept him at home longer. But then he gets paranoid or delusional and I know I made the right decision, one that probably saved my own life, because with Feroze in care, I have been able to look after my own health, reduce my stress and have heart surgery. I have also been able to finish writing my fourth novel, Gone but Still Here – an Alzheimer’s story. And I’m currently completing Dandelions in the Wind, an anti-racism audio program. If I had remained a full-time caregiver, I would never have been able to finish these projects.   

What advice do you give other caregivers who are trying to make the same decision?

Please think of yourselves first for a change.  

Being a full-time caregiver for years on end is a killer. You can do it for a while and even get satisfaction from it but eventually it wears you down, physically and emotionally. There is little doubt that you will feel guilty making the decision to put your loved one in long-term care, but no one who has been through what you are going through will blame you.

The only people to point a finger are those who have never walked in your shoes. If they had, most would quickly change their viewpoint. But the truth is that the only ones who really understand what it’s like to be a caregiver for a spouse with Alzheimer’s are other people caring for a spouse with Alzheimer’s. 

What did you value most about AS York? 

In the early days of coming to terms with the diagnosis, the educational courses were helpful and the DAY program was a life-saver. A word of advice for newbies: Feroze didn’t want to go to the DAY program at first. He was like a kid being left at pre-school, had a tantrum or two! It would have ben easier for me to acquiesce to his wishes, but I stuck it out and made him go, saying, “Too bad! You are going because I need you to go!” Just like the preschooler, he soon got used to it and loved it! And I got a break!

Then there was Minds in Motion, which we attended together. We played games and exercised and socialized with others in our situation. It was wonderful—the highlight of my week!

Even though Feroze is now in long-term care, I am still benefiting from the legacy of AS York — enjoying friendships with other caregivers who I’ve met along the way and with whom I bonded because of our shared experience.  

AS York was a lifeline that is still supporting me. 

 

It's World Alzheimer's Month. What do you want people to know about Alzheimer's disease and other dementias?

There is a stigma associated with all forms of dementia that probably make it more difficult to live with than other terminal illnesses. Society does not deal kindly with it. And despite decades of research, there is still no way to stop or reverse it. For some, the journey is a few years. For others it is two decades of slowly losing the ability to reason, to read and write, add and subtract, to dress or use a toilet, to turn on the TV or answer the phone, to walk or talk or swallow. Years of erratic personality changes that replace the person you loved with someone entirely different, someone who may be hard to love. Years of hallucinations and delusional thinking. Years of aging backwards until your beloved is as helpless as a child living in an alternate universe. 

It’s hard to accept that your smart, witty and capable life partner is no longer able to look after himself let alone help look after you! The dream of travelling in your golden years is replaced by the reality of the four walls of your home. As a caregiver you are alone even when your partner is right there. You are unable or share your problems with him. For starters, he can’t help solve them, and you can’t unburden yourself on him when he has such limited comprehension and so many problems of his own. It’s a lonely and isolating existence, leaving little time or energy for your own needs.

I hope these few words open your eyes to the plight of the caregiver and encourage you to move alongside, rather than shy away.  

And if dementia becomes part of your life, then take advantage of programs such as those offered by AS York. And accept help.