break – Dealing with Dementia

Music uplifts my mood. It helps me focus and makes me happy. I will typically be listening to techno-pop — it’s better than caffeine if I want a pick-me-up.

I first heard Let Go by Frou Frou when watching Garden State (I thought it was on at the closing of an episode of Gray’s Anatomy — a show I never really watched, but Internet sources won’t validate my recollective memory on that point). It’s been in my head, but never on my iPod, so I finally downloaded it last week. I like the tune and the focus on “letting go and jumping in.”

However, today this song brought me to tears as the words hit me very differently. For a few weeks I’ve noticed a decline in my Mom. When I arrive at her community she is in the living room playing bridge with a new group of residents. Now that she has spotted me, she wants to leave the game, but I encourage her to return – they can’t play without her. She insists we go to her apartment while the bridge group is taking a break. Within a few minutes there is a knock on the door asking her to return and she is really rude to bridge player that has come to invite her back to the game. I decide I have to walk her back to the game and I stay within eyesight so she knows I won’t leave until we can spend some time together.

We visit after the game is over and she is having trouble talking with me today. I’m confounded and amused as she complains that they were beginner bridge players. She can’t remember what day it is, so I wonder how she can remember her bids and those of her table mates. I’m told long-term memory hangs on and she is a bridge life master. There are so many aspects of her day that are mysteries to me.

After my father’s death, I realized that much of the grieving and acceptance I did as my parents were moving into dementia allowed me to manage while they were still on the planet, but I have been humbled by the depth of loss I have felt over my Dad. If he didn’t have dementia and I was not his caregiver, would his loss be as profound? I shall never know.

As I’m leaving the Assisted Living community today, I play my recently downloaded song. I knew the gist of words, but today I hear there is “beauty in the breakdown” and burst into tears.

This experience has changed me in many ways. I recognize that I’m a much kinder, gentler version of my former self. For that I’m grateful. However, I can’t find any beauty today in the loss of my mother. Searched.

So, let go,
Jump in
Oh well, what you waiting for?
It’s alright
‘Cause there’s beauty in the breakdown
So, let go, yeah let go
Just get in
Oh, it’s so amazing here
It’s all right
‘Cause there’s beauty in the breakdown

LakeVermillionSunrise — Photo Credit: Cole Bransford

My siblings are wonderful. I know from many of you that I’m lucky to have engaged siblings who will and can help. As we rolled into Christmas, my siblings came to town to visit with my Mom so I could spend time with my husband’s family who would be visiting us.

Initially, I still got a few calls from Mom when she was confused by a call and didn’t know how to reach my brother or sister, but for nearly three days, I did not get one phone call. On the third day — I started to ignore my mobile phone (it was Christmas Day) since my kids and husband were all with me and I knew my Mom was in the company of my sister. As soon as my sister’s flight left, the calls began.

I believe my Mom calls me when she is lonely, which only reignites concern over her well-being. I’m thankful she is in an Assisted Living facility, but can’t imagine anyone being in one without a family that visits, calls or advocates for their loved one. The fact that she is already in a place prepared to support her and that it is one she choose makes my caregiver duties much lighter, but it does add a level of complication. There are things that happen that we learn of second-hand, can’t control and don’t like.

However, I recognize the toll of my constant concern as the only local family member as well as the guilt that I’m not visiting her daily are taking on me and know that I need to give myself more breaks. I can’t make up for my Mom’s lack of short-term memory by calling more, I can’t feel guilty that I don’t visit more, but I can love her and be mindful of her needs.

One of the best tools I found to manage was using Google Calendar for my family scheduling. When I started to feel overwhelmed by raising my children well, caring for my parents and work, I worked with a life coach. She helped me develop my priority system. I use that to determine what goes on my schedule and review it quarterly to ensure I’m not neglecting key elements of my life. My husband and children all use the calendar to stay in synch. It works well for us.

A change in the routine of life can be eye-opening. Helping my Mom is such a daily part of my life, I didn’t recognize until I stepped away for a few days how much mental time I spent on the topic. It was nice to have the mental break. Recognized.

Ten Ways to Deal with Caregiver Stress (AARP)

Respite Care: A Break for the Caregiver (AARP)

Thank you to my siblings — and all of those friends and caring individuals who continue to pay visits and write letters to my Mom.