Noticing Sensations
For the first time in three years, I have been gifted with two experiences of being “home alone.”
- When Marvel took Nicole swimming. I noticed how good it felt to have the house to myself.
- When Carol took her to her birthday lunch, I noticed again that same sensation in my body. I paid more attention to what I can only describe as feeling lighter.
I did not realize how “weighed down” I feel with the limitations on my life after my daughter moved in with me … the lack of freedom to take off on a whim … to respond to causes that touch my heart … the responsibility … the need to plan ahead for everything.
Caregiving in the News
Sunday’s Dayton Daily News included an article on family caregiving. A social worker who cares for her mother knows how to navigate the different resources. It takes a social worker to interact with that system. It is so difficult and frustrating. A person with a Ph.D. told me they had trouble with it. And for me, it takes an emotional toll every time I have to do it. That is why I want a case manager for Nicole.
I could relate to these statements made by caregivers or care-giving researchers in the article:
- “You have all of their worries and all of your own.”
- “…the emotional challenges were much more difficult to figure out ….”
- “It was hard to ask for help and it meant a lot when friends saw help was needed and reached out.”
- “…family caregivers experience a loss of freedom and a loss of self …”
- Policy makers and agencies need to create programs that take into account the needs of the caregiver as well as the person needing care.
I was heartened to read in the article about a series for caregivers of children with special needs or behavioral needs. I’m probably not eligible. My daughter is 48 but she will always be my child.
I called anyway to get information and the person answering the phone knew nothing about it. It was a huge let down.
She is going to check into it more, but that phone call took an emotional toll. I have to build myself up to make these calls because most of the time over the years, I hear, “We can’t help.”
Just To Be Clear
Nicole is not so debilitated that I cannot leave the house. She is capable of staying home alone while I engage in activities in this vicinity. It is hard to be away in the evenings. I don’t want her to use our gas range unless I am present, and so I take care of dinner … providing healthier fare than she would give to herself. That has paid off, as recent better-than-ever blood and CO2 level testing indicated.
I can even go away for several days at a time … if microwaveable meals are available and I don’t go too far.
However, I experience anxiety leaving. Nicole fell recently and we needed to call 911 to get her up. Fortunately, I was home.
As a result, I’ve been researching medical alert systems.
For me to relax and enjoy myself, I need people close by she can call in an emergency or for a need we didn’t anticipate.
And truth be told, all the preparation involved for both of us if I leave for an extended period of time overwhelms me.
How Team Nicole came about
- Nicole’s isolation wasn’t working for her anymore. She became depressed.
- She is not eligible for day care/respite care.
- Mom became overwhelmed with the full responsibility of addressing her need for more stimulation than TV and her iPad provides.
- Mom’s discouragement when hopes for taking vacations vanished.
Friends Rally Round
Thanks to Diana, I have a trip planned to spend a couple of days at Lake Erie. She arranged her schedule to be the point person while I’m gone.
I see Nicole’s spirit improving. My friends are becoming our friends. Thanks to them, she has had five outings:
- Shopping for a bathing suit
- Three swimming excursions
- A lunch date to celebrate her birthday – that meant she got to eat at Red Lobster, her favorite restaurant, twice this year.
Assignment: Exercise & Record Progress
Marvel gave Nicole this assignment. Initially I didn’t see her following through. I attributed it to “lack of motivation,” a symptom of her disease.
One day I watched in amazement as she exercised her arms and legs and recorded her progress in a notebook. It was gratifying to see her smiling with pride in herself.
I told Marvel, “You are a miracle worker!”
A Reel Conversation
Watching movies is one of Nicole’s favorite pastimes, and so Karen offered to facilitate a Reel Conversation for us and a group of friends who expressed interest in being “Team Nicole” members. At first, Nicole turned up her nose at the thought of the “in-depth” conversation slated to follow the viewing of “Arrival.” But she participated and, despite herself, seemed to really enjoy the interaction. Friends commented positively on her insights.
Another Reel Conversation is on the schedule.
A High School Classmate Joins Team Nicole
Pat and her husband have been supporters of the Muscular Dystrophy Association. She and I talk occasionally on the phone. She mentioned a couple of times that she would be willing to stay with Nicole so I could get out.
Pat lives almost 26 miles away … a 40 minute one-way trip, so I never took her up on her generous offer.
But I reached out and asked if she would like to be added to the team.
Chills ran down my spine with this response:
“Yes, Linda, I want to be part of Team Nicole. I feel the Lord also wants this. Before I read your e-mail this morning I did my prayer time and I had written your name and Nicole’s name on my prayer list. So happy to hear so many people are willing to help.”
Neighbors Join Team Nicole
When Bob and Shirley across the street heard that Nicole was depressed, they offered “Game Nights” as a way to get her out of the house doing something fun.
She smiled at the suggestion. For this socially-avoidant woman, that’s a good sign.
A Weight Lifted
With all this support from friends and neighbors, with more of us carrying the weight … I’m feeling lighter these days. Many times, I don’t even have to ask. They see the need and they respond. That means a lot. For them and their caring, I am eternally grateful.
What about you?
What lifts you up when you feel weighed down?
What is it like for you to depend on others?
Linda, this posts reminds me of how exceptional care givers are in that they pay attention to what so many of us miss. Being hyper-conscientious is the primary career of caregivers and caregiving is a career.
That is so true, Roselin,
Unless we are doing it, we don’t see what is involved. And there are others have much more difficult situations than I have. They can’t even get out for the day to do something for themselves. At least I am still able to do that.
Sometimes I think I don’t deserve to be upset by the things I mentioned in this post because I have it better than others. And still my life is limited and I find that difficult.
Thank you for your understanding.