I am reminded this morning of a book I read by Arundati Roy called The God of Small Things. It is set in India and is concerned about the sad and dangerous things that go on in the main characters’ family lives, set in a country where sad and dangerous things are happening on a much larger scale. So the main character prays to the God of Small Things.
The recent tragedy in Newtown has helped me keep my own tragedy in perspective. Although my parents are clearly suffering both physically and emotionally, there is some small comfort in knowing that they have lived full and relatively long lives. The children of Newtown have not.
We carry on and continue to march forward.
Dad is settled in his room at the nursing home. The room is semi-private and quite small which makes it difficult for his care. He is using a geri chair that takes up more space than a wheel chair, and they have to pull a Hoyer lift into the room to get him up or put him back in bed. It is quite a cramped ballet of movement when that occurs. We hope to get him moved to a larger room when one becomes available. His medical condition is a little complex because of the side effects from his prostate cancer radiation treatment years ago that have required him to be catheterized three times a day since. First he managed it on his own for a decade, then Mom took over. Recently we’ve tried the Foley cath but that probably led to the UTI and landed him in the hospital on Tuesday of our crisis week. Since we’ve had a variety of opinions recently from doctors in the hospital to the doctor at the nursing home, the Foley cath has been in, out, and now back in. It continues to be a big medical issue for him and may require a minor surgery for a surgically inserted cath. The Foley cath appears to cause him pain based on facial expression and body movements.
Dad’s swallowing ability has been evaluated at the hospital and re-evaluated at the nursing home. It continues to be a source of concern. He is on pureed foods only and nectar-thick liquids. Initially we had to give him his drinks by spoon, but a straw has been approved if it is well-monitored so that he only gets a sip at a time. We have to wait quite a while between bites of foods and sips of drinks. His swallowing reflex is very slow. The aides at the nursing home feed him most of his meals, but we’ve kept our morning home health aides working with him for a transition period. I try to visit at meal times to be able to feed him occasionally.
Mom finally got enough strength up to visit Dad on Thursday. She hadn’t seen him since he went to the hospital on the previous Tuesday night. We were in the middle of a Christmas party entertainment at the nursing home when Mom arrived with my sibling. Dad was crying every time a new song started, so it didn’t really feel all that much like a celebration to me. He did seem to listen attentively to the jokes and trivia questions from the entertainers. Mom wasn’t sure Dad recognized her at first. He did not respond as I imagined he might. He remained fairly neutral. I have no idea what he’s thinking.
Dad is trying harder than ever to speak. Yesterday I asked him to whisper because sometimes he was able to do that when he couldn’t actually talk out loud. I leaned in close over his bed, next to his head, and felt his warm breath blowing the wisps of hair from my forehead with his efforts to expel words. The speech therapist who is working with him on swallowing, thinks he may be able to use a communication board. Today I am working on getting photos to her of family members, foods, drinks, and other things he likes for her to make the communication board with. I am afraid to hope.
Meanwhile, my siblings are getting my mom ready to move. They are sorting through things as she chooses what she wants to take with her. Yesterday the dining room table held a stack of sheets and a few mementos. I took three family photos off the wall to hang in Dad’s room in addition to what we’ve already put up there.
The little Christmas tree and the Christmas bells still decorate the living room. One day soon I will have to return and take them back down without Mom sitting in the chair in the corner. At least I won’t have to look at the empty chair. It is going with her.
11 thoughts on “The Small Things”
Take care during this hard time, Christine. Hope you have a chance for some happy time with your kids…. Hugs.
Christine—I have been out of the loop with you for awhile and I apologize as it appears you are entering or actually already in a really difficult time. My heart breaks for you. It really truly does. It is such a hard thing to see our parents wasting away and feeling helpless to do anything about it but you have been and continue to be such a good daughter. Your words here show the depth of your love and devotion to your parents. While I don’t have words that will help you I do have prayers that I am sending up on your behalf and for your parents and the rest of your family. Stay strong and know in your heart that you are a good daughter. Hugs.
I also have been out-of-the-loop for a bit, self-consumed, busy at home, busy at my Mom’s nursing home, etc. I was so sorry to hear that you’re Mom has been diagnosed with cancer. And I am sorry about the situation with your Dad. You are certainly getting hit with the emotional (and I assume, physical) stress overload! Do take very good care of yourself. You need to be at your best for yourself FIRST or you are no good to anyone else. I’m sending you hugs and keeping you and your family in my prayers. If you get a chance, you can PM me on FB and let me know more details, as to what nursing home and what hospital. God bless, Terry
may the God of small things take care of all the little details that are so crucial and so need to be attended to. Most of all may God continue to hold you in the palm of his/her hand.
Christine – remember that things disappear in a nursing home. Not from the staff usually, but from the other patients. Since your Dad may or may not care, don’t leave anything there that cannot be replaced.
My grandmother was in a lockdown ward the last few months of her life and in a short period, everything disappeared out of her room. The other patients would wander in and out and take whatever appealed to them. Most of them were equally as unaware as she was and had no awareness of what did or did not belong to them.
Also remember that as tragic as is what happened in Newton, it does not diminish that you’re going through a massive upheaval right now of your own. Allow yourself time to grieve your parents change and to not feel guilty for it.
What a sad year this has been, Christine. Best wishes to you and your parents.
How hard this must be, for parents who you likely remember as strong and capable. My heart goes out to you. My parents both passed before they became incapacitated. I still miss my mom horribly.
So sorry I’ve been remiss in visiting. Preoccupied with our own lives, we forget others may also be suffering.
You are so strong, Christine. God bless you for your patience and loving support of your parents.
Hugs…for showing us the way.
I’m sorry that you and your family have to go through this.
It’s no small thing when your family is involved. Certainly the days are hard, but the moments are precious. Make time to do something special for yourself.