Calgarian Ron Freckleton spent 10 years caring for his wife, Joan, who was living with dementia. Here, he reflects on that journey and shares some insights he learned along the way.
My dear wife, Joanie, died at 11:11 a.m. on Easter Sunday, April 20, 2014. Joanie had been living with dementia for 10 years, and I had been her sole caregiver.
In those early years, both of us faced a whole new world. For Joanie, it was a world of confusion and fear. My world — one of desperation and despair. Over time, I gradually learned to live with and care for a loved one with dementia.
Although I have no professional education on the subject, I feel that my 10-year journey through dementia with my lovely Joanie qualifies me to offer advice to the family caregivers of loved ones with this debilitating condition.
Dealing with a Diagnosis
I hope you have sought professional advice on ascertaining your loved one’s condition. Not having it diagnosed does not mean that it does not exist. Denial does not delay its progression. The behaviour of people living with dementia will vary according to the type of dementia that they have. The part of the brain that is affected by dementia dictates what behavioural traits will become evident. It is important that you do not feel that there is a stigma attached to dementia. It is a disease of the brain, pure and simple.
Short-term memory loss is often one of the first symptoms of dementia. Your loved one may repeat questions or statements. For instance, “What day is it today?” If you feel exasperated hearing the question repeated and answer, “I’ve just told you,” your voice and body language may cause your loved one to become aggressive and hostile. Pretty soon, both of you will feel ill-tempered and a very poor tone will be set. A stony silence will hurt you more than your loved one. I found it easier to answer the repeated question with a good-humoured reply. “It’s Wednesday, all day, and it’s Thursday all day tomorrow.” My voice and tone indicated that everything was fine. What did it cost me to repeat my answer each time the question was asked? Nothing, absolutely nothing.
We’re all human; there will be times when you are not at your best and lose patience with your loved one. He or she will forget your squabble in a moment — their lack of short-term memory will ensure that. But the harsh words you both may have shared will be with you for a long time. That’s something for you to think about. Bite your tongue when you can’t say something nice. You’ll be the benefactor.
Go with the Flow
If your loved one is content to spend their days doing little things that make no sense to you, but are of interest to them, go with the flow. That should be your mantra: “Go with the flow.”
[Once,] Joan, using scissors, cut 20 $5 bills in half. Her thinking was, probably, that she would double her money. Her smile when she showed me her handiwork was just lovely. How could I be mad at my Joanie? I was genuinely amused as I did the repair work.
You will learn that trinkets become treasures, things of little value become very precious. Many quiet hours can be spent just touching them. Encourage your loved one, show them that you share the love of their possessions. You may see it as an obsession; think of it as a pastime.
Quiet times with someone living with dementia are a blessing. Some of the best days of my life were spent sitting with my Joanie. Me, talking about good times in the past, Joan listening. I could tell if she was really remembering just by her comments. Sometimes she was, sometimes she wasn’t. It didn’t make any difference, we were happy together. I learned that the precious memories I spoke of were therapeutic for me and comforting for Joan.
Maintaining Social Connections
Something that gave me pleasure was the way Joan behaved in social occasions when she was around people other than myself. She greeted everyone as though they were the best of friends. She didn’t distinguish between store clerks and medical specialists; everyone was a recipient of her charm and warm smile. I was careful not to interfere with her interactions. Social interaction was important to me. We needed to maintain contact with family and friends. A support group is important, necessary and can never be too large.
Connecting with Your Doctor
As Joan’s dementia progressed, her behavioural pattern changed, and I learned new skills. Our family doctor was my mentor. I recommend that all family caregivers keep in close contact with their GPs. If your doctor does not have experience with geriatric care, I suggest that experts be consulted.
I was fortunate that our doctor’s special interest was geriatrics. He insisted that we visited him each month. He was monitoring my health as well as Joanie’s. Each visit garnered valuable advice. He explained that “white lies” and promises that you can’t keep were okay. Constantly repeated requests by your loved one, for something not possible, will easily be assuaged by saying, “We’ll do it tomorrow,” or something similar. The request will be forgotten tomorrow. No harm done. Our doctor’s major message was to keep your loved one as happy as possible.
My advice to all family caregivers is: please accept all the help offered to share the care of your loved one. I should have taken advantage of Alberta Health Services’ [resources] a lot sooner. The home care services that are available will enable you to grab a few hours of respite. You will find that you can entrust your loved one to a professional’s care and know that they will be in good hands.
Another helpful organization is the Alzheimer Society of Calgary. A portion of the society’s funding goes into research, but its major commitment is to the support and well-being of dementia clients and their family caregivers. The society also puts great emphasis on awareness and education. The frequent information sessions and seminars that it presents are often the first steps that caregivers take in their quest for answers. The numerous programs and the available activities are invaluable to dementia clients. The respite that the caregivers gain is so necessary to their own well-being.
Caring for the Caregiver
I made many missteps along our long and winding road. I wish I could retrace and replace them. I hope some of my words will help you avoid the pitfalls that were part of our journey. My biggest error was not seeking help in a timely fashion. As the years ticked by, I had become adamant that I was the only one Joan would accept as a caregiver companion. I continually declined the offers of help from friends and family. My love for Joanie made me blind to my own welfare. I was sacrificing my own health and well-being by taking on the sole responsibility of caring for Joan.
I know now that I was wrong. Our family doctor recognized that I needed to get professional caregivers involved in Joan’s daily life. His advice led me to the actions that I should have taken years earlier.
Caregivers, please be aware of your own health, both physical and mental. It is just as important as your loved one’s. [ ]