Realizing your parent or any loved one may have dementia is a tough one. I live with the regretful feeling that I should have recognized it sooner. At the time I was absorbed with my own life drama, but that’s no excuse. My hope is that what I learned as a daughter, observer and eventual full-time caregiver will help someone else in their journey.
- Learn to differentiate between memory loss and dementia. All of us can be forgetful at times – more so when we age. Dementia includes such behaviours such as confusion with what season or year it is, forgetting important events, and taking much longer to do familiar things.
- Develop your awareness. This may sound basic, but I realized that I could no longer view my mother as independent. In much the same way one consciously and subconsciously is in tune with what their baby or child is up to, one must again tap into that mindset. If you’ve never been a parent yourself, this might take some effort; but it can be accomplished.
- Involve experts. Most cities have an Alzheimer’s Society and most areas will have social services that offer assistance, direct you to help, or at minimum give you tips on daily living. In the beginning, when I could leave Mom alone for a few hours, I picked up excellent suggestions like pull the fuse to the oven and microwave. As time and her illness progressed, I was referred to a Day Program where I could take Mom for 4 hours twice a week.
- Demonstrate your patience. At the onset of Mom’s illness, I did not recognize her behaviour as an illness. I shamefully admit that I was less than patient. In fact, I often expressed my annoyance and even argued with her. It wasn’t until she started asking questions like “Is my sister Annie dead?” and “How old am I?” that I realized how far from reality her mind had travelled. It was only then that my empathetic nature kicked in and I was able to let go of my anger and impatience. I wasn’t mad at her. I was mad at the disease and the situation. I was heartbroken late one night when I was working away at the computer and she appeared from her bedroom and asked, “Are my parents dead?” She was 92 at the time.
- Take behaviours in stride and come up with practical solutions. Here are some examples of what I encountered. Issue: I noticed Mom took longer to get dressed. I ventured into her room while she was getting dressed and saw that she was opening and closing dresser drawers. She apparently had no clue in which drawer she kept her underwear or what was in any of the drawers. Solution: I labeled the drawers. Then I labeled the kitchen cupboards and closet doors as well. Issue: A few days later, I meandered into her room to find that she had 7 or 8 outfits laid upon the bed. She had no idea what the weather/season was, so she couldn’t make a decision. Solution: I started helping her make the decision by telling her the activity of the day and making a couple of suggestions, still giving her the choice – much like one might do with a young child. Issue: At bedtime, I watched her go back and forth repeatedly from her bedroom to the bathroom. Only because she had the habit of tapping her toothbrush on the sink to shake off excess water before putting it away did I know she had brushed her teeth. On this night, I listened and discovered that she had brushed her teeth on each trip. So I light-heartedly asked, “How many times do you brush your teeth at night?” She replied, “Just once.” Solution: I made up a yellow sticky note that read “I’ve already brushed my teeth tonight” and started putting it on the mirror right after she left the bathroom the first time.
- Write things down! I found myself repeating situations and past events. So, I started to write little histories for her. I wrote to her about how my Dad, her parents and siblings had passed away. Knowing how detail-oriented and organized her personality was, I itemized each with a description and year. I also wrote about happy memories explaining the lives of my brother, myself and cousins. I made her a scrapbook of pictures of her life with a little narrative beside each picture. I’m so thankful I did this because I would often catch her reviewing the letters and papers. At first she reminisced and later she regarded them almost as if they were about someone else and would ask questions.
- Find or build your own support network. You can’t do it alone. We need a village to raise a child, and we need a village to care for our elderly. Seek out others who have loved ones afflicted with dementia and support each other. Recently wonderful solutions are being designed internationally for long-term care facilities. When the time came for me to place Mom in a long-term care facility, I did my research and found a wonderful home and was able to confidently let the experts take control. The decision to place her into a home was difficult and I’m grateful that I had a support network of family, friends and professionals to ease the transition.
May you never have to deal with this, and if you do, may your path be with courage and grace. Bless you.