Showing posts with label caregiver. Show all posts
Showing posts with label caregiver. Show all posts

Sunday, March 24, 2019

His Final Lesson





Recently, my brother shared a piece that he wrote about our dad. It is one of the most heartfelt, poignant things I've ever read. Beautiful, succinct, and touching, may you be blessed by this lovely writing:


His Final Lesson
“Rick, come here.” Typically, words and even commands spoken by him did not elicit a heightened reaction from me, but there was a specific tone that made this sound different, possibly more imperative. 

Please don’t believe that I am someone who is not reactive. My main priority in life shifted from one of being cared for to being the caregiver. I still wonder how I took that responsibility without being more overwhelmed or more mystified. Because it was me – the boy who could not go to school without fear of being away from his parents; the boy who crumbled at any potential illness – my own or theirs; the boy who could not stick to any activities such as Boy Scouts or band. Yet, when the time came, I gracefully accepted the role as the caregiver, the boy now who could be called man. Although I did not see it, I embraced it. His lesson was that of a teacher – quietly teaching valuable lessons of being a man without me even knowing that it was occurring.  

The response to my expected question “What’s wrong?” was one of unknown pain that was to eventually take him away from me. We started what would be our last phone call to 911 and subsequent collecting of the home items for another hospital stay. 

Despite my fears, years of concern based on the reality of mortality being a few steps away, possibly a few minutes away due to him not being in touch with his body or his needs associated with the plethora of health issues related to heart trouble, I always reacted with a calm nature and, in my heart, believed that it was not the end. Regardless of the severity of some of the hospital stays or diagnoses, I must admit that I never believed it would end. Naivety is not usually my forte. But with him, I always felt like there was another day, another month, another year. This was a testament to another lesson – the lesson was grace regardless of the surroundings and circumstances. 

The ensuing diagnosis, required surgery, and many ups and downs in his physical and mental health took a toll on all of us. It only lasted three weeks, but felt like many months had gone by. He was tired, frail, and, no doubt disappointed that his body was failing, but he never complained and never once did he say he was in pain. 

I was young and full of anxiety. My concerns ranged from my own physical health through the rest of the family being ill or diseased. He did not understand mental health issues such as this. He had dealt with others’ issues, but he never quite understood the “why” behind them. Yet, when I needed him to be there to tuck me back in at night or to pick me up from school when the worry was beyond normal, he was there. He never made me feel bad for the worry, or for being bullied, or for the irrational concerns about death, monsters, and such.  This lesson was to understand and accept, sometimes even if you don’t truly understand. 

I watched him in bed daily – some days intubated, some days awake and able to talk and listen. Reality of this being our final hospital stay became more and more tangible as the weakness grew and no interventions had a lasting effect. A doctor had called me and sternly said, “We have to be open and prepared if God is calling him” since some of their interventions were not having that magical effect we had come to expect. Still, the grace of handling this without falling apart had overtaken me. I cried, I begged to have it be different, I used up my bag of tricks that had always kept his quality of life high, but this time was to end in an unfamiliar way and I was letting that reality make me stronger. 

I had not been formally acquainted with death. I had heard stories of all of the loss that my family had handled, but most of this occurred before I was born. Distant relatives, friends of the family, and others that we had known were gone and the sting had been there, but it was a fleeting pain, yet all their memories would remain fond to me. His mother had died many years ago and I watched him handle it with quiet compassion and reverence for who she was to him and to others. His lesson was unending love and the value of legacy.

I received a call from the hospital that he denied intubation. He was still present, but the intubation would be necessary to continue life. I had no choice but to go and find out if this was truly the end. I cannot recall my thoughts on my way to this visit, probably an amalgam of potential outcomes at that point. I laid eyes upon him in his bed, the way that I had for these few weeks, and even hours prior, but I knew this held more weight than those other visits. Upon seeing me, I should have known that he could not lay eyes on me and say “okay, I give up”.
Each time that we had a “scare”, I suppose it was evident that I was giving every fiber of my being to positive outcomes, never once admitting that there were any options beyond continued life. And I lived that way from day to day, for many years. Regardless of how high he had gotten in age, there never was a day that I let on that he was aging. Regardless of how he was unable to do certain jobs or activities, I never let on that he was more limited. I was his biggest cheerleader. I had gone from being the frightened little boy to his champion in all ways that I could. There were ways that he adapted to still be functional and express his love, despite any limitations.  This could also be attributed to him – the lesson of adapting to your environment and accepting change. 

This visit lasted only about twenty-five minutes. He would allow them to place the ventilator back on. We had moments of communication, despite this final intubation. So many words were spoken before this point, yet it was down to a few final lessons. Though it was only a few short years ago, the memory of all words has faded a bit. However, significant words were spoken at that time. I told him that we would not torture him anymore after this attempt. I wanted him to know that he had fought hard, but I also wanted him to know that I, the one who had fought so hard to keep him alive for so many years, was giving him permission to no longer suffer or fight, when it was so clear that he was ready to let go.  Our last exchange was one in which I initiated my expression of love. In all of my years of life, the words had never left my mouth toward him and neither him for me. It was clear as day, though, that was how we felt. But, on this night, I felt that it was time. I knew it was the right time. And, he reciprocated. 

His last lesson was finding out if I could be not just a man, but the man; the man who could let him go despite giving so much to ensure that he lived; the man who could be strong enough to use words of love because the actions were no longer possible. This lesson was his most valuable, because we both needed it to move on; for him to move on past this life and for me to move on past him to a life which would have to garner new meaning and understanding and use the tools provided since childbirth to continue the cycle of love and kindness.  

Author: Matthew R. Mattia (Rick) 



Sunday, May 28, 2017

It's Never Too Late





Mom was never the warm and fuzzy type. Not a hugger or a kisser, but my brother and I knew we were loved and adored growing up. She showed her care in so many other ways; with the baked goods and food she prepared every single day. With a listening ear for our school bully infractions, or the betrayal of our one true love. Advice given, words of wisdom, character building ones. A tender heart toward nature and toward others. No prejudice was allowed--Mom truly cared for all of mankind. This is who I am honored to call my mother.

Yesterday the tables were turned in a very dramatic way for me. Though her once beautiful mind has been faltering for some time with dementia, and my brother and I have been caregivers through it all, I had to step up to the plate of comfort in a major way.

The nursing home had called me about two weeks ago. They mentioned placing Mom on an anti-depressant. Said she had bouts of crying and depression. Hmmm, this was not something our family had seen recently. On the contrary, we noticed her talking more and laughing more when we are there as the strokes she had have begun to heal a little.

Cute little remarks, old inside jokes and our favorite of all, the movie lines we know and love so well are all things that continue to make Mom smile. We'd do anything for that smile. And yet yesterday while visiting her in the early morning, I saw my mother break down uncontrollably for several minutes and my heart broke.

As the nurse was bathing and dressing her in bed, Mom appeared to have had enough. I think her arthritis was hurting as it always does in the early morning when rising. I think she realizes she is limited, so limited in her adult briefs and inability to dress alone or stand alone. I can't imagine what goes through her mind in times like these, but she started to sob, deep heart-wrenching cries, and I did something uncharacteristic, I hugged her around the shoulders and stroked her back gently, reciting words of love and of comfort. The nurse she had isn't the most patient, but she stood back and let me do what only a family member could. Mom cried and I soothed. I held onto her and kissed the top of her head tenderly. And then I was able to do what all of us in the dementia/Alzheimer's community know best. I was able to re-direct her by talking about a pretty bracelet she was wearing. Like a small child, her tears slowed to sniffles. She saw the bracelet and answered my questions about who gave it to her. I sat back content that a crisis had been averted, and thanked God for giving me the tenderness needed in that moment even though I had never done this before with her.

I know we all come from different types of families. There are some of us who grew up with adoring parents who snuggled with them, gave tons of kisses and showed affection. There were others who grew up with harsh words, barked orders, and slaps instead of hugs. There are some who don't even know their parents and would have given everything for even one word from them or about them. I consider myself blessed that even though affection wasn't a big part of my years, I got so much more.

Pull yourself out of your comfort zone and love a little. Even those of us who have been hurt in our upbringing. Forgive, and let go. See our precious elderly for who they are now. People just like us with human failings, with imperfections and good and bad inside. Perhaps their own childhood was hideous and they didn't know any better. Look at them in a new light. Be the light of Christ in their world. Give that hug, say those words. Never let it be too late.


Wednesday, March 29, 2017

Rainbows Will Return






Where to begin? A year ago, six months or perhaps only three weeks ago. This has been a life-changing, earth shattering time for our family. It was about this time last year that I noticed my father acting differently. Usually cheerful, our rock and our strength, Dad began to complain more than ever about how he was feeling, how difficult it was with Mom's worsening dementia, every bill he got in the mail, etc. Dad always had such joy talking with me about Spring and flowers and seed planting and birds. Simple morning conversations that I could live on for the rest of the day. That ended around this time in 2016. Little did we know we would lose Dad later that summer. That he was winding down, and the time had come for his well-deserved rest with Jesus.

Now our little family is going through this with Mom. Words cannot describe the feeling in my chest--of my heart splintering into tiny fragments, each one burnished with a memory good and bad alike. Only three short weeks ago we were able to take her out to eat, go for drives to her favorite stone bridge and listen to the creek. Three short weeks ago we saw a high school play and Mom sang along to the Disney tunes she knew and loved so well.

Yesterday we moved our mother into a care facility. I saw a woman before me that I barely recognized, completely devoid of emotion. Gone is the laugh that was so cute. Gone now are the stories told over and over, stories we all knew better than her, but listened patiently as they were told once more.

Her eyes hold a tiny spark of light when she sees either me, my brother or son. But I'd give anything to rejuvenate life back to her; of memories that would fill her with emotions once again.

She was wheeled into her new room and as she looked around at perhaps a few familiar items, my brother handed Mom a beautiful dolly he got her a few Christmases ago. One story our mother always told us was about a doll she received one year from a family friend. She would describe the beloved doll in great detail, and my brother tried to replicate one by searching many sites and finding one that Mom claimed looked exactly like the one she'd had.

Mom sat in her wheelchair stroking her dolly, covering her with the blanket that lay around her own shoulders. My eyes filled with tears and it was difficult to remain stoic. I stayed with her until much later in the day, watching old movies, trying to get her to eat in the dining room with new friends, seeing if talking about cooking and baking would bring her around just a little.

I left last night with the feeling of a tight band around the upper part of my stomach. The band of fear and uncertainty, for it was with me last August when my father was in the hospital. It is a hated companion this familiar tight knot of tension and worry.

I cannot find my laughter right now. I am not enjoying much. My work days are filled with stress and I don't like who I've become. I snap in anger over situations that I used to handle a little better. I'm not reading for pleasure, doing much writing, except these cathartic blogs. Most of my thoughts are of Mom and wondering how her day is going when we cannot be there with her every minute.

I've read about others who have gone through this before me. I see their smiling faces, their grandkids or trips they've gone on. I see that life does return and there will be rainbows and sunshine again. This is a season in my family's journey. The tale of two parents both so very loved and a life so very missed. My brother and I will hold on to what we have of our mother until her own story ends. And then we will make new memories and remember with fondness the old ones so lovingly tucked away in our hearts.




Monday, March 6, 2017

Care For the Giver





I lay awake at four in the morning, totally unable to find that cozy spot once again or to stop the thoughts which pummel me from all sides. Will Mom be alright today? Will she eat and take her pills? What if she missteps and takes a fall? Is her health okay?

On the days I am with her, I try to give her my all. We begin with a scrumptious breakfast, bacon, french toast and coffee. I do my best Lumiere impression from "Beauty and the Beast" for her to "Be My Guest" as I serve her. I love to make Mom laugh, and it's no easy task always thinking up a barrage of chatter so she won't go down any of the paths of depression. Dementia is enough without the added sadness she sometimes carries.

I glance around for tasks which need done; wanting to be of help to my brother who is her nighttime caregiver. He does so much, and I want to make life a little bit easier for him too. I'll begin the wash, take care of the cats, do a light dusting, help Mom to dress or heaven forbid, take a shower. For this has not been easy and on the days I can coax her, I end up getting almost as wet as she does. I know she feels badly. It can't be easy having your daughter insist you do something that has become almost scary. For the tub isn't easy to maneuver with her bad leg, and getting her onto her shower seat takes patience and a little muscle as well.

Some days I take Mom for a drive to a favorite spot near a lovely creek and small stone bridge, knowing she and Dad loved to drive there each week. We may even grab a little food while we are out, but taking a walker in and out of the car and making sure she doesn't fall, gives every trip a little added stress.

 I orchestrate all her doctor, dental, eye and foot appointments like a well-oiled machine, seeing that she is cared for. And getting her to them is another feat in itself.

Once she is situated back home, I make sure that Mom has taken her late afternoon pills; or days when I am not there, try talking her into taking them on the other end of the phone. It's exhausting, these simple tasks, and sometimes as part caregiver, I want to vent and scream and even run away.

My friend Goldie reminded me that we must care for ourselves. We are no good to anyone if we don't first take time to do something nice for us. As another of my friends, Paula mentioned the other day, if  you were traveling on a plane and in an emergency the oxygen masks came down before you, you would first put the mask onto your own face so that you'd have enough breath to take care of your loved ones around you. We cannot help someone else if we can't breathe.We cannot thrive without oxygen, and that's what the caregiver needs; sometimes one small breath at a time.

It's been easy to fall into a trap recently--an endless pit of despair at times. Poor me, why me, etc, etc. But when I actually listened to these two remarkable friends, my spirits lifted and the shackles of depression began to abate. Some people find a little solace in having their nails or hair done, or purchasing a fun new outfit. Others enjoy a good workout at a local gym. There are those who take in a movie with a good friend, or share a cup of coffee with another. A long, hot bath, good music, all great for the caregiver. And some of these are easily accomplished.

I took in a movie the other day. And I've been taking time to read good books, listen to music I enjoy, and on occasion, even paint my nails with glitzy, fun colors. Yes, it's true--we must give care to ourselves a bit from time to time or we lose a little of who we are and all that we can do for others.

So, buy the new shirt, read that book, indulge in the dark chocolate you've been wanting. Call a friend and vent. Then vent some more. Laugh at a funny movie, or be inspired by a touching one. Do something for you! It makes the spirits soar and helps us to be a much-improved caregiver. Remember to breathe.