Reading Kamla’s post, I recognize how precious my time with Chris was.
How lucky I was as a long term caregiver to still be in a relationship with someone who loved me.
There were times, I admit, when I was all too focused on getting the laundry done or the fridge cleaned out. When keeping busy was my way of ignoring the fact that I was not free to go outside into the fresh air; to go for a walk, to saunter down to Starbucks and read a paper while sipping a latte.
I prayed a lot. “Pray for courage, Maggie.” Father Obiwumma advised. “I pray for grace,” I said. Grace to accept that this was my decision. Grace to be cheerful, loving, helpful.
Grace to remind myself that being entrenched in this apartment 23 of 24 hours a day was not anyone’s fault. It was my choice.
It’s amazing how hard it can be to remember that sometimes.
Sometimes, I’d get cranky. Then Chris would crack a joke; clown for me, make a face or deliver some harmless, lewd comment. And we would laugh. And in that moment I would truly know how fortunate I was to be with this man on this final journey, to be his chosen companion.
We sat together for hours every day, holding hands, watching movies, Chris giving me a constant flow of data about the actors and locations and sometimes even the history behind the movies. He cried when brave men did great things.
He cried when Doc Holliday died in Tombstone. Not sobbing. Just wiping his eyes and huskily asking for a coffee or fresh water.
After the TV was turned off, we’d say the rosary together. It was what he wanted. I would kneel beside his bedside and we would say the decades together.
I was lucky to be in that relationship right up to the end. Lucky to have all those months and years to nurture and hold him, to understand that I was losing him.
I don’t know how Kamla copes, after losing Jack so suddenly. How people who lose their loved ones in an accident or sudden illness or suicide manage their grief.
I miss Chris. Miss him terribly. But I can’t help feeling, reading other caregiver websites, that somehow, I was one one of the lucky ones.
Final Instalment of a continuous narrative by Gemma Tammas.
While we are regularly visiting his doctors, two more inflections added to his failing health. Hearing loss, and cataracts. Many times, I have to shout at him because his hearing aid is not in its place.
Only yesterday, he was telling me about a woman, who was interviewed on the news, saying she traveled to San Diego to learn about a diet. Tom told me that woman became a nun.
“That’s what she said,” he insisted and it was no point to dissuade him otherwise. It wouldn’t have changed his mind anyway.
I help him to read as his eyes get tired and every phone call fell on my shoulders as Tom’s voice became scratchy, mumbling his words.
Losing his health big time along with his driver’s license, still he is asking “How can I help you?”
When I give in and tell him what to do, he forgets it and I have to control myself not to tell him off.
His memory is failing but he still remembers our phone number in Hungary fifty years ago.
When we are going shopping, he gets out of the car and starts shuffling in a different direction. I have to run after him grabbing his hand.
My life, our life, changed. We had to give up small pleasures like walking in the field for an hour with our dog, Heidi, going to the seashore for a stroll.
Heidi, our ten year old Rottweiler, recently became paralyzed from her waist down, unable to take only a few steps before she collapses, then I have to lift her up and put her on her feet.
Some days I question myself. Why, why me who is burdened to do all these things. Then I look at Tom, and I see in his eyes the suffering, the hopelessness, but still a tremendous willpower to live.
Then I pat Heidi’s head and I feel her energy passing through my body, and even in her crippled condition, she gives me strength to go on, to take every day as it comes and enjoy it to the fullest.
My heart aches, when I see both in reclining health, but still, I feel fortunate to able to take care of them.
Caretaker? Caregiver? I rather call myself a wife and mother.
Part two of a continuous narrative by guest author, Gemma Tammas.
One morning I found Tom tied down in a wheelchair in front of the nursing station.
His head dropped on his chest, saliva was dripping from his mouth.
“He was climbing out of his bed,” the nurses told me, “we had to tie him in the wheelchair and roll him out to the hall to keep an eye on him.”
“All these medications make him crazy,” I argued and from there on, I had no choice but to stay with him during the nights also.
After two long weeks, still feverish, losing half of his weight with gall bladder infection and against his doctor’s advice, I brought him home.
He was weak, not able to stand by himself. With my brother’s help, we would carry him to the bathroom, wash him on his bed and feed him, forcing the food down as he had no appetite.
Slowly he recovered his strength, what was left of it, and our pilgrimage to different specialists began. After six months and countless tests, he was diagnosed with Parkinson disease, Alzheimer and hypothyroid. As he already had a pacemaker, visiting his cardiologist three times a year was now topped with regular visits to his neurologist.
His medication ‘regime’ had to be set, and after six months, a routine was established. To help his memory and to help him to sleep better two more medications were added.
We follow a stringent schedule for his eating as he can only eat an hour before or two hours after with certain pills.
I was amazed how religiously he was taking the pills, he, who never took even an aspirin in his whole life.
Now, from 7am till 10 pm in the evening he is on a strict schedule.
When I wake him up at seven o’clock to take his first dosage – he kisses my hand.
But at night he seems more confused. When I try to put eye drops in his eyes for his glaucoma, I have to force his eyes open because he opens his mouth instead.