Caregiving: On Our Own Journey

I was helping to lead a training on activities for people with dementia the other day. Speech-language pathologist Kathryn Kilpatrick from Communication Connection was one of the presenters. She had a lot of great advice on how to communicate with someone with dementia which I will be writing about later. However, one of the comments she made really stuck with me as it addresses a problem I see all the time in families trying to care for a loved one.

Kathryn said that each caregiver is on their own journey through this process. What she meant was that we will all handle the illness of our family member differently, and that's ok. Often what happens in families, and were I see the most difficulty created for them, is family members judging what kind or how much caregiving other people in the family are doing. 

There are many paths on this journey. Photo by Jeff Norris

For example, I was with a client once who was telling me about her "ungrateful" child who had not come to visit her in about a year. I noticed that while I think Miss. Mary is the sweetest little old lady ever, I really have no idea how she treated or still does interact with her child. While I could be fully present for Miss. Mary and help her through this issue, I also knew I could not judge her child. While we may not agree with what they are doing, unless they are putting their loved one in physical or emotional harm, or creating an unsafe environment, we should let people help as they are able.

Even in families that are close, no one really knows the relationship each child had and has with their parent so you can't expect everyone to to provide care in the same way. Some people can't handle daily amounts of time with their loved one. Some are only comfortable with the person one-on-one because it may be detrimental to be with other family members. Some people just are not comfortable with doing things like bathing, taking someone to the bathroom, or changing adult diapers.

We also need to recognize on this path that people may have more or less energy for the journey at different times. Sometimes a caregiver you may need to pull back on what they are doing because it becomes too overwhealming, and that's ok. You can hire more help or rearrange the care schedule so that everyone gets a break at times. That is why in hospice, respite care is offered to the family every six weeks.

In my work as a minister, I see far too many families fighting over the caregiving, each one expecting the other to do this or that, and missing the fact that everyone is on their own journey through this. 

Blessings,

Rev. Katie

The Carolyn L. Farrell Foundation in the News

Photo by Gus Chan/The Plain Dealer

The Plain Dealer, the local Cleveland, Ohio newspaper, just did an article about the Carolyn L. Farrell Foundation for Brain Health and the dementia program we run every Wednesday!

Read about it HERE. 

Blessings,

Rev. Katie

From Their Perspective: How Scary Dementia Can Be

The more trainings I take about caring for people with dementia and the more I really try to see the world from their eyes, I see how scary and unsettling life is for them. A very simple example of this is the Hoyer lift we now have for Mom.

A Hoyer lift is a large device with a sling attached to it that lifts a person who can not walk and allows you to transfer them. We had a few new caregivers at the house to help train them on how to use the Hoyer lift because it is very easy to get bruised or dropped in the lift if it is not used correctly. Dad and I let the caregivers practice transferring us in the lift. Let me tell you, it is pretty scary.

You sit there while the people around you communicate with each other checking to make sure they have the right colored loop on the right hook so you do not fall out of the lift. They were just about to lift me once when I noticed one side of the lift was not attached and I was able to tell them before they lifted me. I was imagining what it was like to be Mom and maybe see that the lift was not correct, but not be able to speak to tell them. How scary!

Dad in the Hoyer Lift

Then they lift you up and you are suspended and swinging in mid-air while the device rolls across the floor taking you to your new destination. Someone has to watch your forehead so it does not collide with the metal bar at the top of the lift and another person holds your legs so they do not swing and hit the metal pole that is the center of the lift. You would think you might feel like you are wrapped in a cocoon but you really feel like you are swinging from a crane like a fish caught in a net that could drop at any time.

I can see how this is terrifying for persons with dementia. No wonder many of them get agitated during transfers.

Here are a few tips that might make something like this easier:

1. Always tell the person exactly what you are doing at every moment. "Carol, we are going to move you from your chair to the bed. We are getting the lift ready. Now we are going to raise you up."

3. Each caregiver should check to make sure the other got all of the loops on the right hooks as a safety measure. Say out loud that everything has been checked so the person can hear you and feel a bit more safe. 

2. Reassure safety: "Carol, we are going to raise you up. The lift is safe and we are here for you."

No matter what, much of life is going to be scary for persons with dementia. Even if you think they cannot hear you or understand, they probably can, so the best thing to do is communicate a lot with them. Always tell them what is going on around them and what is happening next. And in every situation try to see it from their perspective in order to understand their needs better.

Blessings,

Rev. Katie