How Many People Does It Take?

My sister, Dad, Mom, Jeff and me

How many people does it take to care for a person with dementia?

For just three days this weekend, in order for all of us to be able to do the things we need to do (work, attend church functions, celebrate an anniversary, take a class on dementia, and do a bike tour) we need six adults and one child. True, this is a far busier weekend than most, but now that Mom can not stay at home alone anymore, it is very hard to work out our schedules.

My sister has given us the wonderful gift of spending time with Mom three days in a row while Dad goes out of town to learn about how to better communicate with people with dementia, Jeff and I celebrate our 11th anniversary and attend a few church events, and Jeff, Dad, Jeffrey and I to go on a bike tour we have been looking forward to for months. My sister is so amazing!

Two of my son’s friends are having him over for a playdate while I attend a work meeting one day and Jeff and I go to a musical for our anniversary.

I didn’t realize how hard this was going to be, not being able to leave Mom home alone. We can not run up to the store anymore, or leave my son and Mom home together for a bit to attend a short meeting. Today I was home, but upstairs working, and ten minutes after the boys left on an errand, Mom was opening up the doors to the house looking for them. Even having me in a different room was too confusing for her.

They say it takes a village to raise a child, but it takes a village to take care of us all.

Thank you to everyone in my village!

Blessings,

Rev. Katie

Too Much Going On

It has become increasingly more complicated to schedule things in our house anymore. Mom is getting more forgetful and has an especially hard time if more than one thing is different than usual. For instance, this week my husband Jeff is out of town part of the week, my son and I are gone over the weekend, and I have had a few meetings in the evenings, and one night all of us had meetings at the same time. 

The other night Mom had no idea where we were going and when I went over the travel schedule with her again, she was angry and made the comment “Why do you guys hide everything from me?” I can see why she is angry. In her mind, we did not tell her what we were doing. And frankly, I admit that while we did tell her, I did not remind her enough or remember to put everything on the calendar. In the future I will write things down better and remind her more, but it is not only the schedule that is confusing. Even when Mom remembers the schedule she can’t remember why we are going somewhere or what we will be doing. It is just way too much information for her to remember and it is frustrating.

It is hard to balance all of our lives together at one time. We can’t stop doing things we like, but we also need to make sure Mom is more included and does not feel as though we are hiding things from her. Possibly writing down the when, where and why of our travel and meetings would be helpful.

The reality is that sometimes life moves very fast and a person with dementia can not process things quickly. You really need to slow down and be patient. However, we do not always have that option, and those are the times when it is particularly hard. It is not pleasant to have to leave Mom when she is confused and did not know we were going anywhere. But we have to get to the meeting, or catch the flight, and sometimes we can’t slow down and take more time.

I feel in those moments that I do not have the ability to address Mom’s feelings and truly take care of her. I feel like I am choosing myself over her, which is true. I know we all have to chose ourselves over other people at times. We do this with our friends, partners, kids. This is never an easy thing to do, but if we do not take care of ourselves and do the things that bring us joy, we can’t really take care of and support others.

What I hope is that overall Mom knows we love her and want to take care of her, even if we are not good at it sometimes, and even if we have to leave.

The best thing we can do is keep trying to have better communication as her abilities change so we lessen the times of last minute confusion just before we have to head out the door.

Blessings,

Rev. Katie