Wednesday, June 4, 2014
so, how am I doing these days??
I am taking each day as it comes. Some days are great and filled with energy and some days this week have been challenging. I decided on Sunday, since I wasn't feeling up to heading out to the local ball diamond for a game, I would spend some quiet time with my Dad at the nursing home....
..... I stepped into his room after looking around for him. He was laying on his bed with a blanket half pulled over him and lightly dozing. I spoke quietly to him and his eyes fluttered open. He stared at me and then slowly it occured to him that somehow he knew me...."oh, hello there". "Hello Dad", I responded back. I gently helped him to sit upright on his bed and then pulled a chair around for him to sit on. He needed some help getting into his chair but once there, he cracked a grin and thanked me for coming. I always try to bring him a coffee and a treat. Today he has two cookies and a coffee... he forgoes the coffee and says it tastes bitter. He is missing so many teeth and the remaining ones are decorated with what looks like breakfast and last night's dinner. I will have to return to brushing his teeth when I visit. He smells slightly of urine.... or rather his bed does.
I am feeling mixed emotions of relief that he looks great and of guilt for not visiting him more regularly. The tears start and I try to catch them. Dad has already welled up and tells me how excited he is to see me. I ask him about his children and he is lucid when he says how much he loves each of us. This is a rare moment in his Alzheimer's journey and I get parts of it on my iPhone video recording. Part-way through the recording, he 'sees' a dog and calls it to him by smacking his lips together in a repeated kiss. The mind is an amazing hard-drive that once in a while coughs up a long-ago bit of memory and plays it for its keeper. His faraway look and the quick smile when the 'dog' he has been calling sits beside him for a pat. He strokes the arm of the chair and touches my hand in the process which brings him back to the present moment. 'Oh, excuse me' he says. I reach over and pet the back of his retreating hand and he looks at me. He is blind in one eye and the other one sees so very little. His once strong powerful fingers are bent in various directions and too much pressure will cause him pain. He smiles and he eyes fill when I tell him I love him.
An Alzheimer's patient can react strongly in response to pain or other stimulii that can change a peaceful conversation into a hellish ordeal. That sweet little old guy can smash you in the face in seconds and without warning and all as a response to certain stimulii or memories. I am always careful and speak quietly to my father at a level he is comfortable with. He does not like to be told what to do or have anyone raise their voice to him or show impatience. I can get him to do what I need him to do through a sense of humour and lots of hugs. He loves to laugh and loves to have his hands held gently. i know my father well and we have a connection which is hard to explain.... I just know him and I know what he is saying. I know what stories to tell and which ones not to tell.... I know how to re-direct him when necessary.
There are many moments today where I will tear up.... how is it possible that the strong resiliant father I grew up with is a mere shell of what he used to be??? He sits in an old age home that is old itself and lacks fresh air and areas to move about in. Why can't they be large, airy and filled with plants and things to do. I rarely see other visitors in the narrow hallways when I walk Dad around the floor, I catch the strong odor of poop at the end of one hallway and I steer my father to go back to where the odor is less invasive. He doesn't notice the smell but later, the lady sitting near us begins to whine and the docile face of my father begins to crinkle and then he begins to verbalize his annoyance at Katherine's increasingly high pitched wail.... some time after the nurse glares, says something under her breath and then rolls her eyes at the back of her head ....time to walk away and back to his room. I get him to go pee before I tuck him in to bed for an afternoon nap. Time with Dad goes by fast. Two hours of holding hands and making him laugh at my silly stories.
I have to guide him around the toilet and help him with his pants. They have put depends on him to catch the occassional dribble.... years ago he would have laughed if anyone told him he'd be wearing them.... reminds me of the story of his father who slathered on Neet hair removal when it first came out in the 1920's.... and guffawed that a lotion, bad smelling one at that, could possibly remove hair.... I tell my Dad that story every once in a while and he guffaws like crazy until the coughing takes over. I could tell that and other stories time and time again and elicit the same reaction every time.
He has always had that 'cough'.... more like clearing the throat which turns into a full cough to clear the lungs. He has always suffered from pneumonia and pleurisy since child hood. He had pneumonia weeks ago which is why I could not visit him then. The modern day of medication has helped him to survive to Alzheimer's. I grab him a kleenex to help him with his spate of throat clearing. He smoked many years ago and quit before he married Mom.... he never took it up again....
It's time to tuck Dad in for a nap... he is tired and as I lay him down, he keeps thanking me for visiting him. The tears start up again and I smile and kiss him on the head and cheeks in rapid fire which gets him smiling again. God, how I love you Dad and how guilty I feel for leaving you behind in the nursing home where you will spend the rest of your lonely days there. How is this payment for a life of hard work??? I touch his cheek with mine and whisper words of love and promises to visit soon. He closes his eyes and a smile forms once again on his tired face. We did talk earlier of him returning home to heaven.... we both believe in an afterlife.... he says it will be soon and that he is long in the tooth. Part of me prays it is soon so that he doesn't have to live this way..... in his lucid moments.... he knows kinda where he is......
I step out into the sunshine and warm air......I make it to the car before the tears start to fall. I don't want to grow old if it means ending my days in a lonely barren room with no place to go. I look up to where his floor is.... and bid him good sleep... one where his soul can fly and be free. See you soon.
There will be a few more times when I arrive home that I have to take time out to just cry.
Here is a pic of me 8 months after chemo below a family pic (taken in August 2010 just 6 months after chemo). My hair is changing colour to reflect less 'Artic Blonde' and more ash brown. I love the curls so for now, I will keep growing out my hair... soon, there will not be any curls left so I will enjoy them when I can.
Some days, like today, I am in some pain... not bad but annoying. Today it is in my right chest - beginning at the sternum and into the right underarm, then through to the back... I am assuming at this point that all the vitamins and tinctures are helping to drain the lymphatic system. I have pain in the areas around the chest and underarms that have lymph nodes but this could be a guess. Most days are good and I have little pain in the liver as compared with a month ago.
I putter each day to keep the body moving but today is a down day where I am doing paperwork and preparing for September's teaching load. I figure if I do it on my down days... I should be done everything in time for start of school. I plan ahead... always have and just in case - I have all my notes at the ready and online for my students, including a week by week on my FOL blog to use as a guide. I pray that I will be healthy at the start of the new school year. In a journey like this, you plan for any eventuality.... including the Will, which I still have not buckled down and finished.
Its been 6 weeks since Melina passed away.... there isn't a day that goes by that I don't think of her. I still leave the occassional message on her FB page.... life goes on and people get busy....but I still need her to know that she is missed every day....I still leave messages for Nancy who passed away almost 5 years ago of a heart infection in her sleep.
Sarah, her daughter Payton and Shelley made 'Relay for Life' candle bag tributes to me and put them on FB... yup, I cried. I just can't go to any of those events anymore....I guess part of me just doesn't want to acknowledge that I am still fighting into what is now year 6....and I find it hard to read all the tributes to those who no longer live amongst us. I do not want to be involved with anything to do with cancer groups (learned this one the hard way) because I do not define my life through my illness...I am not brave....just someone trying to make the best of a not so fortuitous situation. My time is valuable and I choose to spend it with my family and friends who love and care about me and doing things that bring me joy.
Saturday I went to visit my friend Millie...we met as fellow paddlers and became friends.... she has had a stroke and her left side just won't cooperate...she is now a patient in a local hospital going through physio and trying to get some use of her limbs. She is wonderful and always offers a smile... we chat about the times in the boat when I would get in trouble for laughing or talking.... that was three years ago. What a crazy life when you join a group for support and fun and end up paddling for an ex-olympian hopeful spending valuable time away from family only to be caught up in drama.... sheesh, what a year that was. I was lucky to have walked away with some truly special friends. I learned that the illness didn't rob me of my self-esteem and that stress of that magnitude only serves one purpose...to create more illness. Kisses and hugs for you Millie and sending you lots and lots of love as you heal from yet another bump in your life's journey.... hope you heal super fast!!!!
This week, Mitchel's 19 year old friend has been diagnosed with Stage 1 Pancreatic Cancer..... sigh...it just never ends.....I am wishing Eric all the very best.
Tomorrow is Lydia's 12th birthday.... wow!!! I am so excited to be celebrating her special day with her. Well, it's time to head into the kitchen and help make the cupcakes for her classmates tomorrow.
check out our urban garden...