Every day is different living with dementia. There are good days with nice weather working outside, being surrounded by love and children, and bad days with paranoia and sadness of reality. As a nurse, my mother is very aware that this disease will progress and it won’t be pretty. She is concerned about my sister and husband and what this might do to them.
Joanne and Brad have a strong faith and give selflessly of their time and sympathy. They also give selflessly of their assets. My mother is loved sincerely and my sister is generous with displays of affection and understanding. If I think about it, it makes me cry. Changing the way you live, the pace at which you go, and everything about your daily routine is scary, but they did it without question. (Ok, maybe a few questions!)
My brother Larry has been working with Music and Memory, an organization that works to provide music to elderly people in nursing homes. By connecting patients with music helps tap into deep memories that we think have been forgotten. It brings them back to the present and helps patients to engage, converse and feel like themselves again. He has provided an iPod and a playlist of my mother’s favorites. The challenge for her is her profound hearing loss, and technology. Do you have a parent who might benefit from this? If so, I would encourage you to visit https://musicandmemory.org and to watch the documentary on Netflix called Alive Inside, a life-changing and heartwarming film about the effects of music on dementia patients.
Two steps forward and one step back is one way my sister describes things. One day, my mom is having a good discussion about the items in her house and what to do with them, the next, she is talking about things that she will do when she goes back home. Moving from reality to outer space, depending on the day is keeping life interesting and challenging for Joanne. We all feel that once my mother has her own bed and dressers, all her clothing and special pictures, she will be able to settle in even better. For now, there are bright spots of seeing my mother get used to her new surroundings. One great example is when Brad got a new flatbed trailer to haul some of his equipment around, my mother thought it would be good to take that to Pennsylvania to go get her things. That’s a win, although not logical!
My mother is physically active and wants to be a part of every project that they do, which is wonderful and challenging at the same time. Joanne’s patience is unbelievable as she always lets mom do tasks to help.
Here is an example of yesterday’s job….painting sealant. Notice the wide blue tape that was placed on the floor to keep the sealer line neat? She just painted over the whole thing.
Brad said, “At least we got the shovel away from her and now have the sprinkler system repaired!”
Caring for an aging parent is not for the faint of heart my friends! This takes a new skill, and it is a skill that we have never flexed before! Most importantly is to find support from friends and organizations who can relate to what you are going through. It is amazing to find how many people are going through exactly what you are once you begin that dialogue.
Not every family has the same resources as we do. Not every family can accommodate having a parent live with them, but there are options and your job is to find out about all of them. The most important thing that you can provide your aging parent is love.
Be their advocate, their champion, and their consultant. Be their voice when they are unable to verbalize what they need. Love them.
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