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| Dad's recent hike with my sons, their partners, and my husband proved to be a happy, memorable event. |
Yesterday it occurred to me that more than an illness, dementia/alzheimer's is a life chapter. The disease lasts a long time, so unlike an illness that you either cure or succumb to--dementia and alzheimer's are a life chapter all their own, a life chapter that can last a long, long time. With that in mind, how do we deal with it?
At first, when dementia struck mom, we ignored it for the most part. We noticed signs, but laughed the signs off or dismissed them. But when the forgetfulness and diminishing cognitive awareness became greater, we began to adjust to it. Instead of letting our loved one go off alone in a store or mall, we would accompany her, and instead of expecting her to remember a family event, we set up systems to remind her. Looking back, the dementia began to take root about ten years ago. I remember when I first lost my mom in a store--she didn't know where she was. I frantically searched for her and then found her. Then there was the time when she brought her beloved oatmeal cookies to my house, cookies that didn't taste the same as usual. Obviously she had forgotten some of the ingredients. The dementia started with small events like that, and now ten years later Mom is very much a different person. She doesn't engage in conversation, plan parties, get excited about decorations or look forward to seeing extended family members as she did in the past, but she still has some of her old traits such as her great love for my dad, her good manners and will to be as independent as possible.
Looking back at the ten years and ahead too, I am realizing that it's good to think of this part of life as a chapter, not an event. And as you think of this as a chapter, it's important to establish collaboration, pacing, and priorities.
Collaboration
As with most things in life, dealing with dementia/alzheimer's profits from collaboration, and that collaboration profits from moving ahead with patience, an open mind and the awareness that this chapter will strike each and every member of the care team differently. There will likely be conflict. Looking back, one of my challenges was wanting to rush ahead and create a tight plan asap, rather than stepping back and giving people the time and attention they needed to share their thoughts, process the information and work together. In hindsight, I wish I were more patient, empathetic and open minded as this chapter began. Fortunately, in time, I've learned to do better in that regard and I believe I am becoming a better collaborative member of the care taking team. It is difficult for a team of people to collaborate around dementia/alzheimer's simply because it is a new, emotional chapter for everyone--a chapter with few to no road maps as to what exactly will happen or how to move ahead.
Pacing
Unlike an illness that may depend on ready, speedy actions to cure the situation, dementia/alzheimer's is likely a long chapter, and if you don't pace yourself, you'll burn out. Too quick, grandiose plans will likely not succeed while steady, regular routines will likely be more manageable, doable and successful. For example, I help out once a week. During that time I have a steady list of chores that I complete. It's created a positive, doable routine for me and for my parents. That's been good. We've instituted a number of other regular routines that help out too. Here and there, there are down times that are less than ideal, but when that happens, I ask myself if that less-than-ideal situation will make a big difference in the long run, and usually the answer is no. So a bit of imperfection has to be added to the mix--there's no perfect way to deal with dementia/alzheimer's so the goal is as-good-as-possible regular routine of care and comfort.
Priorities
Caring for dementia/alzheimer's patients profits from having positive priorities including safety, comfort and happiness.
- Safety: As much as possible, you want your loved ones with alzheimer's or dementia to be as safe as possible for themselves and others. Regular assessment of their living arrangements, activities and supports helps you to determine that. There will be some hits and misses as you try to secure the activities and environment, but for the most part, regular attention will help to ensure as much safety as possible.
- Comfort: You want your loved ones with dementia/alzheimer's to be comfortable. Today there are so many modern approaches to ensure comfort. There are all kinds of health agencies available to help out including home health aids, hospice and more. It takes some good research to figure out what will work for your family as well as knowing what financial supports are available too. Most communities have elder service organizations that can help you navigate those choices. There are also many products that help to create a comfortable environment and reworking a person's home can support greater comfort too by locating the best chairs, beds and other comfort items in easy-to-access places. Simplifying collections of items such as clothes, kitchen equipment and other daily tools and items helps dementia/alzheimer's patients retain greater autonomy without the confusion of too many or too difficult-to-use items. Further adding supports with regard to financial efforts, grocery shopping and more will ease the situation.
- Happiness: As with the other categories, there's some trial-and-error involved here, but finding the right conversation topics, outings, foods and friends to include in your loved one's life in order to create happiness is an important priority. For my parents, I've found the following events to bring happiness:
- Just right foods: There are definitely some foods that bring more happiness than others.
- Good smells: Cooking when I visit fills the home with wonderful smells and a sense of comfort.
- Family stories: Engaging my parents in storytelling about the old days is sometimes great conversation, but sometimes not. That depends, but when the conversation is great it is usually accompanied by some great old photos, news articles and artifacts that inspire the story telling.
- Decorating: I often decorate my parents' home in ways that I remember my mom decorating the house when I was young. This brings warmth and good memories to the house.
- Hikes: My dad loves to hike so whenever possible, we add a hike to the visit. Most recently my dad took a favorite hike with my sons--though somewhat rigorous, it was happy outing for dad--one we captured with a great photo.
- Good shows and music: Sharing in shows and music your loved ones enjoy brings happiness.
- Parties and holidays: If possible, engaging your loved ones in just right ways for parties and holidays brings happiness too.