I Need to Find a Small Light in a Dark Room . . .
By Marileigh on April 16, 2011
Saturday, April 16, 2011
(Mom and me working on a jigsaw puzzle in the activities room at the care center)
I need to find a small light in a dark room (from The Freedom Riders movie). This what my friend Susan said to me yesterday when I ran in to her at Starbucks.
Susan and I hadn't talked or even seen each other in a quite sometime. I think the last time I had spoken to her was last spring. She is fully aware of my life and the needs of mom, in fact she was surprised to see me alone and at this particular Starbucks since it is off the beaten path. I was equally surprised to see her at this particular spot. After our three hour visit, sitting in Starbucks, I knew we had been brought together for a reason. We needed to talk. We needed each other at this moment in life.
Susan cried as she began telling me what was going on in her world. Susan is a retired corrections officer at the county jail. She doesn't cry often. While she has a snowball of stressful issues piling up on her should, including identity theft that took place in a getaway to Las Vegas, her bigger concern is about her mother. Her mother is diagnosed with Alzheimer's and has been living with Susan's younger brother and his family for the past few years. They have been doing the 24/7 care, but feel things are getting to hard to control and their mom needs more care than they can offer her. Susan's running into me was like a breath of fresh air to her, as she was completely lost as to what to do with her mother and even where to begin looking. Where is the book that tells the family caregiver how to begin looking at the possibilities for long-term care?
There are no books to tell family what to do with a parent (or any friend/family elder adult.) Yes there are books on caregiving, but from my own experience, there isn't one that give you an honest picture of what caregiving looks like and more importantly what it feel like. There is no step-by-step instruction manual you can pick up at the nearest senior center. Carol was lost and frustrated. While her mother lives with her brother, the brother has given the job of finding a place for their mom to his two sisters. Susan's sister refuses to have anything to do with it and told Susan to call their mom's doctor and let him deal with it. I had to chuckle at that suggestion thinking if it were only that easy. It's not.
I wish I had had someone to talk to and gain information and help from when we were in the throes of this. I wish I had someone to talk to now when although mom is placed it is still a struggle and at this point in her care we don't yet know if, insurance wise, she will be approved for long-term care. Isn't that ridiculous? Mom is 93, has Alzheimer's disease, has had a stroke and a heart attack, her heart is functioning at guesstimate of 30%, and she is now in a wheelchair. What on earth is the insurance company waiting for before they can determine her in need of long-term care? Where is the book that tells the family caregiver how to understand and work the insurance system?
Carol and I are happy to have run into each other. We need each other. She, to learn all that I have discovered in the last two months in regard to mom's care. Me, to lean on her supportive shoulders, talk, trade notes, laugh together. Today I realized that through this entire process, and these years of caregiving mom, the one thing I really needed was a friend I could honestly open up to about what was going on. I have friends. When they ask, "How's mom?" or "How are things going?" My answer is, "Fine." My description of FINE quickly turned to FRUSTRATED, INSECURE, NEUROTIC, EMPTY. Today I am feeling that fine means fine which certainly is a step in the right direction. There is no book that tells you this.
Today Susan and I met at Starbucks to have coffee and talk more, and then she went with me, to visit mom, at the care center. Like me when I first saw the facility, she smiled with she saw the grounds with a green trimmed lawn and flowers everywhere. Once inside, the first thing she noticed was the roaring gas fireplace (it is rainy and cold today.) The entry is beautiful and we were greeted by the receptionist, me by name. Susan was impressed. Mom was happy to see me. She didn't remember Susan, but was happy to have company. The entire time we were there Susan kept commenting on how nice the staff were, how they really seemed to like and care about the patients, and how they knew all the family members visiting by name. She especially liked mom's nurse, Donald. Donald is 6'4ish and a former Marine, now an RN. He's animated and funny and he chooses to work in the field of geriatric. We stayed close to three hours--we joined in the Bingo fun and mom won prizes. As we drove back to Susan's car we talked and Susan was eager to call her sister to tell her about the visit. She felt so much better about the how too of finding a placement for her mom, and she felt good knowing that if she decided to visit any other care centers she could call me and I would go with her.
There are some good books out on caregiving. The 36 Hour Day is excellent and I still refer to it all the time. I have several other books, but in my opinion it is the best. Magazine articles? There are a lot of magazine articles out there. My issue with the articles is that they tend to write through rose colored glasses, making every thing cheery and noble and reminding us that we are doing the most giving act, as children, by taking care of our parent. They do not address the stress, the frustration, the guilt. It almost seems as if the sandwich generation is being glamorized. I suppose the intention is to make those of us doing it feel better, and feel worth of praise. I don't take care of my mom seeking praise and I have yet to feel worthy. I take care of my mom because she is my mom and I love her so much, and it's the right thing to do, and I want to do it with all my heart.
The one thing that the books on caregiving do advise caregivers to do is make time for personal attention. Find a hobby. This is the one bit of info I did share with Susan was that she had to take care of herself while taking on the care and decisions for her mom. Do something that is strictly Susan's for Susan. While it is harder to do this than you can imagine, I wish someone had told me and even forced me to do this long ago.