I was thinking about all the different scenarios caregivers experience and how they try to handle them to the best of their ability. It got me thinking more about the person with dementia and what they are experiencing and coping with. While both individuals are going through stressful times I believe the person with dementia is dealing with much more than the caregiver.
Some of you might be thinking, “Are you serious? What could be more stressful than being a caregiver to someone who has dementia of any kind.” Believe me, I’m certainly not discounting the fact that caregiving is a high stress job. I personally know the stress of being a caregiver. Just stick with me for a moment.
When I was growing up my dad had the kind of job where we had to move every two years. No, he wasn’t in the military. His job was one of helping a company start up and get running for two years then move on to the next place. As a small child it never bothered me to move around so much, not until I hit my teenage years. As teens we’re starting to establish who we are and we begin to identify with some of our peers. We become involved in all sorts of school activities, we are allowed to date and go to parties. Some teens feel like “this is the life!” while other teens might think “it’s the end of the world!” However you felt as a teenager you know you wanted to be able to hang out with your friends and do all the fun things in life. I was exactly like that. Except one day the time came for my dad to be transferred. . .this time I was devastated. Moving meant I had to leave everything and everyone that was familiar to me. How on earth would I ever make friends again and fit in? I was scared, upset and extremely distraught.
Now, think about a time (or maybe the time is approaching) you had no choice but to move your loved one who has dementia. That person has probably lived in their home for most of their life. Now you’re telling them they have to move. Their situation is no different from what mine was as a teenager. They have friends they’ve known their entire life. They have attended the same church since they got married. They have “history” in their town and neighborhood. How can you possibly come in and tell them they have to leave everything that is familiar to them?
Maybe you haven’t reached the point of relocating your loved one. But those of you who have, know it’s wasn’t an easy decision; there was probably some guilt involved in the decision making as well. As caregivers there will always be guilt lurking over your shoulder no matter what you do, it’s part of the role as a Caregiver.
What I’m trying to convey is have some empathy for your loved one when it comes time to make a major change in their life. Be considerate, and by all means continue to be respectful, they deserve it. If you’re not sure how to bring up the subject of moving or changing living arrangements whatever the change might be, talk to other caregivers who have been in the same situation and ask how they handled it. Getting input from other caregivers is more helpful than you might realize. Don’t be embarrassed to ask for help.
If you haven’t noticed, and you will, people with dementia no matter what kind of dementia, do not handle change well. It could be as simple as rearranging a piece of furniture, moving their toothbrush to the other side of the sink and even changing the kind of toothpaste they’re used to seeing. Really? Something so minute as that is hard for them? Yes! They might not be able to read labels anymore, but the packaging doesn’t look the same, so yes, it’s change for them. My mother thought her lipstick was her toothpaste one time simply because it was sitting where her toothpaste was usually located. Someone had put the toothpaste in the cabinet above the sink. What did she know?
Think about ways you can help your loved one when there has to be changes. Never try and convince them you know best and they don’t, because it doesn’t compute in their mind the same way as it does in yours. Again, ask for help if you don’t know how to handle the situation. I just cannot say that enough.
Change is a constant in our everyday lives but not for a person with dementia. They need consistency all of the time. Be mindful of that and help them to stay as calm and focused as you possibly can. Any time there is change it can possibly trigger agitation, anger and certainly confusion. That’s where you will need an abundance of patience.
Everything we take for granted and understand to move forward due to change is completely opposite for the person with dementia. Start putting yourself in their place and rethink how you can make things more simple and inviting when change is the inevitable. It might take some time for them to acclimate to the changes but eventually they will.
- Love on them daily
- Be present when you are with them
- Put your electronic devices away
- Focus all of your attention on them
Give thanks for having the most important job in the world!