It’s a Small World
It’s a small world and for caregivers the world gets smaller and smaller. Over the years I’ve had a number of clients who held caregiver roles in their families. But it wasn’t until I was in a caregiver position myself that I truly could appreciate the depth and width of the small, small world in which caregivers can live in.
Increasingly over the past three years, my world has gotten smaller. It is also gotten more depth-full. My mother’s Alzheimer’s diagnosis brought me closer to her than I have ever been in my entire life. With the exception of my infancy and early childhood, of course.
Going Away Without Mom
Tonight is the eve of the first time I will travel alone since my mom was diagnosed with Dementia. Until now, she has accompanied me when going out of town. It is a very challenging time for us both. The other day I went to manage her medication and she said to me “Don’t go catch a boyfriend while you’re out of town.” Which really means “Don’t stay too long, I’ll miss you.” I’ll be back soon and I will miss her too.
What I want to say to mental health professionals, especially those who are serving people who are taking care of elder parents or children with special needs or adults with special needs; is that the biggest support you can offer caregivers is to help them get additional help and support for themselves.
One of the best things I did in the past couple of months was to throw an absolute fit with one of my siblings! I essentially let them know that I could no longer shoulder the load alone. I can take the lead. But I can’t do it all alone.
As a result, one of my sisters (who was already providing financial resources for a caregiver) not only continued to do so, but stepped up those services to a professional service versus a “friend of the family.” That provider is with my mom during the daytime during the workweek. It is something, it is everything…to have 5 hours during the day that I know she is cared for and looked after.
Occupying Space in My Head
It’s not that I spend all of my non-work hours with my mother. It’s that even when I’m with not with her, she occupies a lot of the space in my mind. I’m always thinking, “Has she taken her medication, did she eat her meal yet?” “How is she feeling today?” “Did she get confused about taking your medication (because of difficulty tracking the day of the week)?” “Is her stomach bothering her?” “Did I schedule the follow up appointment I was supposed to schedule?” “When in the world can I be available for that appointment and will the doctor have a time that work with my schedule?” You get the picture.
Finding a Way Back to One’s Life
I used to have a weekly routine of going to tai chi on Wednesdays and Saturdays; of calling my sister on my way to tai chi class; of calling my best friend every day if not every other day; of talking to some of my other really close and good friends once a week or once every two weeks. Now I pretty much talk to people on social media and speak with people in my immediate surroundings. After that…there’s no more space. It’s not that I no longer value those relationships. In fact, I miss them very much. The truth is I only have the availability for what’s most immediate: my existing clients, my supervisees, the people that come to my workshops, my mother and me.
I often think about the advisement I’ve given to other people, especially those with young children who are mothers and are trying to still maintain their careers. I encourage them to get additional childcare support to create some space for themselves. In many ways, I’m doing those things… the problem is there’s always been so much on my plate and that hasn’t changed.
Career Growth Spurt
I am engaged with numerous requests for services, while at the same time trying to build a platform to serve more people without my physical presence. It is a growth spurt…like I wouldn’t have expected 20 years into my career. I’ve had growth spurts before, but not with someone else to take care of at the same time.
Some people describe these as problems of the successful, but I don’t think that’s it. At least that’s not all of it. The truth is our country is woefully unprepared to provide for the aging baby boomers. Generation X – my generation – is much smaller than the baby boomers and many Gen Xer’s have delayed becoming parents. As a result, they are parents later in life in addition to trying to provide for their aging parents who may have multiple and numerous health needs.
Our modern medicine prolongs life; which, generally speaking, is an amazing and beautiful thing that gives families more time together. It also presents numerous challenges. For example, what happens when people outlive their retirement money? What happens when there are not adequate caregivers for all of the aging adults?
What happens to those Gen Xer’s like me who never married, and never had any children? What happens to me in my older age? What are the things that I need to do now to make sure I can provide for myself? What are the things that go unattended because I have no space?
This Wasn’t What I Planned
This wasn’t what I planned to write about this week. It wasn’t what I planned to write about ever. As I sit on the edge of this business trip, which will turn into a short visit with my sister and my nephew, I’m reminded how important it is for me to expand my world. I don’t necessarily mean by traveling. I mean by creating space for the wonderful and amazing things and people that I want to show up in my life.
I’m actually writing this blog post by speaking into my iPhone and sending an email to myself because I drove to my mom’s house to set up her medications for while I am away. And I went to get those travel size containers and few office supplies for the business part of my trip etc… And because I am driving and when I get home I want to edit and then go to bed. Because I’m so tired. I’m so very tired. But I’m also very excited about with this trip and what it will bring.
Who is With Me?
As I wrap up this post, I will wonder how many of you – my readers – are caregivers to aging parents or to very young children who must have all of their needs met by someone else? Or to children with special needs or adults with special needs. I wonder how many of you are tired as well?
As one of my favorite writers Oriah Mountain Dreamer says in her poem The Invitation-
“It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.”
Keeping My World Small
While I don’t have children to feed, I have myself to feed and a community to serve. I have a mother that counts on me to be there. Not someone else, me.
So for now, I keep my world small. Yet it is still vast and seems to spiral in many concentric circles. I am grateful for the vastness of this small world.
I have taken comfort in these times. In the closeness I now share with my mother, who ironically was so very busy during parts of my younger teen years and early adulthood. I am trying to learn to juggle what she had to learn to juggle then — making money to help support her family, while also trying to create space for that very family.
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