By Patricia Harrington
January is Alzheimer’s Awareness month and being the first month of the new year makes it a good time to begin to learn more about the disease.
I may have shared some of this information before, but I feel it is very important to share again. When I was a child I am certain some of the people I knew at our families’ rest home did have Alzheimer’s disease. I was not aware of its name at that time, although it appears there has been actual documentation of it since 1910.
When I recall some of the actions and behaviours I saw early on and think about what I have learned over the years, I believe many of these people may have had this form of dementia. They were mainly women who came to our home because they were no longer able to take care of themselves. They were not able to do the many things they used to do; they needed help getting ready for the day and if left to get dressed on their own, often they would be wearing their slips over their clothes.
For the most part people were very good natured, but one day as I was walking toward the house I could see one of the ladies in the sunporch knocking on the window. As I got closer I could see that she was asking for help, and as I entered the home I noticed she was asking for help from the public to let her out.
Bless her heart; she thought she was trapped and was not aware at that moment where she was. With a little distraction of an offer to go for a walk she was back to her usual self for a while. Eventually, this same woman did end up moving to a nursing home and by chance I got to see her again.
A few years later I had a shift booked at the home where she lived. By this point she did not recognize me and her moods had worsened to the point that she could be feisty when receiving care. She had been a woman who had a good sense of humour and was physically fit so she still had a good deal of strength. I still really enjoyed seeing her again. Perhaps it was easier for me to cope with her because I remembered the person she used to be and I was able to be more patient with her than others who had not known her previously.
As care providers it can be a challenge, but it is worth stepping up to it to learn more about the person with dementia. If they are no longer able to tell their story it is well worth finding out more about them, what they liked to do, what they do not like, what is important, who they knew, careers, favourite things, favourite music and so on. That is why it is called person-centred care, because the person – the whole person – is centre to the care being given.
At that time, in the early 1980s, people were just starting to learn about how to provide better care by not forcing or challenging people who have dementia. Sadly, in some cases, the changes in the person were not understood and loved ones and caregivers had great difficulty understanding why the person kept asking the same questions, why they didn’t know where they were anymore or why they could not put together a complete sentence.
Dealing with people with a dementia like Alzheimer’s disease was very challenging. Today it is no less challenging in many ways, but we do have more people and services to turn to for help. When we had people living with us and we noticed changes like withdrawing from doing things they enjoyed and spending more and more time alone, we would not have known where to turn to, to talk such things over.
When we reached our wits end looking after people who no longer showed any appreciation for what was done for them and we were constantly finding belongings in strange places, we did not have resources such as the Alzheimer Society to call upon. We did not have people and places such as the Memory Café and caregiver support groups to speak with and safely express our frustrations.
We know now that there are warning signs and that pretending they are not real does not make them disappear. We know that avoiding our doctor or not reaching out to the Alzheimer Society will not make the changes go away. What we do know is that early diagnosis helps us to better understand what is going on and it gives us time to plan for the future.
Early diagnosis does not stop us from living, there is still plenty to live for and still many times to enjoy – memories, enjoyment, pleasure and love all remain. Can they be articulated correctly? Maybe not, but memories are shared so our loved ones can share them back to us, if we are the person living with dementia. Or we can share our thoughts, music, food, walks and sights if we are the ones visiting or living with the person living with dementia.
If you have any questions about any dementia, call the Alzheimer Society of Southeast N.B. at (506) 858-8380 or the Alzheimer Society of NB Toll-free: 1-800-664-8411 or email them firstname.lastname@example.org. If you are a caregiver for anyone with dementia or any other illnesses please attend a caregiver support group in Sackville or Amherst or go to the Memory Café with your loved one on the last Sunday of each month, 2-4 p.m. at the Sackville United Church, on the corner of Main/York streets.
Like dealing with any change, learning about it and preparing for the future is important and will help you and your loved ones through the change more easily.
Patricia Harrington is executive director at Westford Nursing Home in Port Elgin. She believes it is important to share information on everyday concerns as we age and enjoys promoting these important aspects that will help our older population in aging well. She can be reached by email at email@example.com or by phone at 506-538-1301.