Q: Dear Regina, I know my mum has dementia and she is at an early stage. She is living in an Assisted Living Facility in the States. I visit her four to five times in the year. I am with her now and I have noticed some changes with her and sometimes my mind cannot recall if this change is something I am just noticing now or that it is a new change.
I bought a notebook so I can write down some of the things she does that seem different to me. My siblings have felt this to be a good idea and I just wanted to share it for some of your readers.
This is our experience and it helps us cope and keep track of mum’s memories for her and for ourselves. We actually leave the book at the nurse’s desk with her files so when one of us comes to visit mum we write in the journal. We also read the past visits and have encouraged our friends who visit to write their time with mum in the book. We all know that there will be a time that mum will not be able to enjoy the journal as we do but we all agree to keep writing as this will encourage us to enjoy the moments with her. We may share tears together during this process but it will also mend our broken hearts as we watch mum decline in the coming years. I hope you find this to be helpful for your readers.
A: Thank you for sharing your insights. It is a great idea and I am so glad this is working for you and your family. Journaling is therapeutic for many people. This can work in the private homes as well. The family just needs to find a safe place to have the notebook so everyone knows where to find it. You can even create one for your hired help to use. It can help with decreasing caregiver stress. There are different reasons to journal and you can name them as such:
• “mummy says”
• Funny things dad says
• My visits with Aunti. And so on….
Q: Dear Regina, I am having trouble with my family understanding the need for mummy to be more active. She is 86 years and she is more forgetful and seems to be upset easily these days. My family says she is ok to watch TV all day as this is what she has done for years and this is what most old people do. I have always said to them that doing nothing all day makes us nothing all day. I don’t think it is healthy just because she is old to just let her sit all day and do nothing. How can I get my family to see it differently?
A: This is a big challenge especially when there is a great majority of people thinking it is normal to retire and sit and relax all day long. Although, it is thought, “I can’t wait to retire and do nothing, just relax and enjoy my last years.” Some people do just that. You will see pictures or have memories of granny in a rocking chair out on the veranda looking out the window smiling at the people passing by or glued to the TV and asleep in front of it. What your family might not know is that granny had trouble walking and sitting was more comfortable, or that another illness or discomfort was happening that most people were unaware of because they were also brought up to not complain. Those who did not have dementia who sit a lot may have been in a lot of discomfort and they chose to sit to avoid discomfort. You would be surprised to learn that they did not choose to do nothing to be “lazy.” In different parts of the world where there are more opportunities for the older person to receive quality health care for pain and other discomforts, they are more active at older ages. Many older people continue to work longer and even volunteer to keep their minds active. Keeping socially active is another important factor in healthy ageing.
People with dementia need the caregiver’s help to be active physically, mentally and socially. Sitting around doing nothing will cause agitation as the disease progresses. One factor for this is that they do not remember that they are old and have the urgency to do something. They have worked doing something all their lives and now they feel loss because something is missing in their daily life and they cannot figure out.
It is difficult to change the view-point of other family members until they are able to take the time to understand the disease. I would gently and lovingly encourage them to get more education about it. Most people that think it is ok to allow someone to sit all day with no interaction do not understand the disease nor do they understand human rights. For more information contact the local Alzheimer’s Association.
Send your questions or ask about information regarding memory and cognitive changes, contact AWI at firstname.lastname@example.org or 486-4509