The past few months I notice a change in my daughter’s behavior. She
- sleeps more (and she already sleeps a lot because daytime sleepiness is one of the symptoms of her disease),
- spends more time in her room,
- doesn’t eat as much,
- is even more non-communicative than usual,
- complains of aches and pains.
After a series of tests, nothing physical is found. Her blood work and CO2 levels register better than ever. So, depression is the obvious culprit.
I get it. Being 48 with no job, no social life, and living with her mother for the past three years … depression makes perfect sense. She tells her doctor she has nothing exciting to look forward to. Her doctor prescribes an anti-depressant and suggests ways she could get out of the house.
The doctor hears a litany of “I can’t’s.”
As I listen, I feel the energy draining from my body. If she is going to pursue any of those outside activities, I will be responsible for orchestrating them. Don’t I have enough on my plate already?
And so immediately after the doctor leaves (fortunately she comes to the house) I orchestrate something exciting. Nicole wants to go to a concert at the Fraze. I direct her to get on her iPad and look for tickets. She finds the site but thinks we have to go to the box office.
“No we don’t. You can get them online. There’s a number. Call that number.”
A nice young man answers and with his help, she buys 2 tickets.
Then I send out lots of emails looking for someone who enjoys 80s music and is willing to take her to that concert. I get an immediate response. Kathy, of Kathy who talked with my daughter for hours about 80s music in 1999 when Nicole is in the hospital … don’t know why I didn’t think of her to begin with … but my mind doesn’t work well when I’m angry and stressed … texted “I’d love to take Nicole to the concert!” Perfect!
Thank you, Kathy!!
Myotonic Muscular Dystrophy (DM) is a progressive, multisystemic disease with devastating psychosocial and emotional aspects … a disease that robs those who carry it & their caregivers of a normal life. There is no cure.
I’ve been dealing with this disease in one form or another for 53 years. For 43 of those years, off and on, I actively pursued resources to help my children live as well as possible with their puzzling limitations. For 22 of those 43, I had no idea what we were dealing with. Not knowing was hard.
Even after we learned my children’s problem behavior was the result of a disease … even after that disease was given a name … when searching for resources, I heard far more demoralizing “no’s” than compassionate “yes’s.”
I’m weary. I feel my body growing limp at just the thought of reaching out again.
But in mid-May , I made some more calls for help.
- I need help getting my daughter out of the house
socializing with others.
- Did I mention … social avoidance is an aspect of the disease
- I need respite care so I can be away from home for a week or more.
- I need a case manager for her … someone who knows how to navigate “the system.” Someone who doesn’t sink into the pits of despair when reaching out for resources and hearing “no.”
I take a deep breath and summon the strength to make more calls.
Once more I am confronted with my daughter falling through the cracks. My children were 28 and 31 by the time a diagnosis was made. That means they are not eligible for help through the developmental disabilities board. The cut-off age is 22. There are a lot of resources available to those who were diagnosed by the age of 22.
The woman I call about a group home says she will research other possibilities and get back to me in a day or two. I have yet to hear from her.
My hopes mount with a second call. It is my first ray of hope in a long time. The woman on the other end of the line is very empathetic. “I understand. You sound overwhelmed. It sounds like you’ve been overwhelmed for a long time. This is what I’m going to do.”
She orders an assessment for a Home Care Waver. My hopes are dashed within days. I can tell from the questions the assessor asks … there is no help … unless my daughter is debilitated to the point of needing a nursing home.
Our only option is to pay out of pocket for any help needed. Did I mention … I’m not rich.
Anger arises … at the system … but the assessor representing the system bears the brunt.
I descend into the pits.
My friends care
My friends notice. The see me. They hear me. They extend love. They offer to help. They rally round and “Team Nicole” comes into being. I am blessed with the most wonderful friends anyone could have.
In addition to Concert Kathy, Prema tells me about what she and a friend did when their children were young. They took turns caring for them so the other could have a day to herself. She says she will help with Nicole. She and a mutual friend, Jen, begin making plans to periodically take Nicole to a movie so I can have a day to myself.
Diana and Prema see my disappointment that I will not be able to take the trip I’d been looking forward to. Diana says, “I live so close. I can be available to look in on Nicole. Start planning. Now how many trips do you want to take? Let’s get them on the calendar.”
Memories surface. A few weeks ago, Kathy, a friend from church, sees my weariness and offers to be available so I can get out of town for a few days. I check with her to see if her offer still stands. It does. Welcome to the team, Church Kathy.
Marvel also told me a few weeks ago that she will help. When she hears what’s going on now, she swings into action. She takes Nicole shopping for a bathing suit and a swimming workout.
It is the first time in 3 years I’ve been home alone. I had forgotten how good it feels.
Nicole is all smiles when they return from the pool. Marvel gives her assignments … “get out those old physical therapy handouts and begin exercising and keep a journal of what you’ve done.”
Wow! Nicole’s cardiologist will jump for joy if she actually does that.
I’ve seen no evidence that she is following through. Did I mention that apathy and lack of motivation are aspects of the disease (the most difficult ones for me to deal with) … not to mention feeling exhausted when waking up after a good night’s sleep.
But I will mind my own business and let Marvel handle that. Welcome to the team, Marvel!
Marvel also put herself down for a concert. She’s another lover of 80s music.
Karen lives at a distance but she offers to periodically facilitate “Reel Conversations” (watching a movie and having a deep conversation about it) at our home. One of Nicole’s favorite past-times is watching movies. This will give her an opportunity to get to know my friends during a fun activity. She wrinkles her nose at the “deep conversation” part and threatens to stay in her room for the evening (what she usually does when my friends visit … social avoidance).
I put the kabash on that. “No you won’t. Karen is doing this for you and for me and you are going to participate. You don’t have to engage in the conversation if you don’t want to. But you are not staying in your room.” My voice is firm. She doesn’t argue.
We host our first Reel Conversation on Saturday evening with eight in attendance. Nicole even participates in the discussion and I think, despite herself, enjoys it. Welcome to the team, Karen.
We plan to offer another “Reel Conversation” sometime during the next two months. It will be an opportunity for Nicole to get to know even more of my friends.
Miss Independence Squirms
Being independent is one of my survival mechanisms. Taking in all this loving support challenges me.
I ask myself, “Am I making too big a deal out of this?” Others in the myotonic community are dealing with much worse symptoms of the disease than my daughter currently experiences.
My friends affirm that I am not. My weariness makes sense to them.
When I quip to Prema, “Others have it worse … at least my house wasn’t blown away by a tornado … at least we’re not living in a refugee camp,” she yells at me.
“STOP IT!” Your pain is just as valid as anyone else’s.
In a similar conversation, Church Kathy agrees.
While my spirit rises considerably with all this support, I still struggle with weariness … I don’t think it is depression … what I’m experiencing doesn’t match those symptoms. I’ve been depressed in the past and this feels different.
There are days when I am down about the limitations on my life. The next day my spirit lifts. Even while writing this post, all three versions, I ride a roller coaster of emotion. Writing helps me get through the downs that suffocate the ups.
My weariness makes sense. Because of the best friends anyone could ask for, this caregiver is learning to accept support. I am blessed and full of gratitude.