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Love and Caregiving...

Posted by @IndianaScott, Mar 29, 2017

Another Insight into Caregiving: Connecting on a Unique Level

During my 14+ years as my wife’s primary caregiver I gained many insights into caregiving, but there was one, over all the rest, I had never expected.

I found my wife and myself connecting on a very different, and in hindsight I now say, unique level. Rather than being strained by caregiving, our love flourished and deepened.

We had been married for 27 years before her diagnosis and were having a fairly unremarkable life together. Two jobs, two kids, two dogs, two extended families (which gave us both love and fits at times), etc. Then we discovered we were to actually be given two lives together. We’d lived the ‘for better’ and ‘in health’ portions of our vows. Now we were to embark on a new life where we would work on the ‘for worse’ and ‘in sickness’ segments.

As every caregiver here knows, the day your patient and you hear the words of your diagnosis lives change. In our case that change would be a forever change.

During my caregiving I learned many new skills, tactics, and strategies, but what I didn’t expect to encounter was the deepening of the connection my patient and I had. After all, after 27 years of being together, we both felt we pretty much had our love and feelings for each other figured out. But we didn’t.

This deepening of our connection certainly didn’t make caregiving a bed of roses, nor easy, but it was nonetheless amazing to me. It was also the underpinning that gave me the strength to rise to the often overwhelming demands of caregiving each day, day after day.

For the last five years of my wife’s life she was totally dependent on me. Even when our children were at their youngest, I had never had anyone so totally and completely dependent on me for every aspect of their life. When our children had been tiny there had always been a partner to help, parents, grandparents, friends, etc. who offered to lend a hand in the tough times. But I was to find this not to be with caregiving. My wife needed food, clothing, medicines, routine, bathing, exercise, communications, medical care, patient advocacy, and much more. That was all on me.

The new level of connection didn’t dawn on me right away. Rather it was one day when I was banging around the laundry room. Not particularly happy having to wash another, and unexpected, set of bed linens, nightgowns, etc. while I also had a meal to prepare, a house that was a mess, a boss who was angry I had caregiving duties encroaching in my life, and more. I knew I banged the wash machine lid down harder than I should have when in the silence after I could hear my wife quietly weeping in her bed. Between her sobs I heard her say “Damn me! Damn me! I should be doing this for Scott.”

I stood around the corner frozen by those words. There she was bedridden, fighting brain cancer, and she was mad at herself because I had her laundry to do. I mumbled to myself “no, honey. You should be mad at me for acting like a spoiled brat!” I steeled myself, walked into our room, sat on the edge of the bed, and held her hand. I have no idea how long we held each other and cried. After some length of time we realized we were each saying the same thing through our tears “I am sorry!”

That day my view of caregiving changed. We both agreed neither of us had chosen our roles, certainly didn’t like them better than our previous lives, nor did we have any option but to accept them.

I sat alone later that night in silent darkness of our living room and it was then I came to embrace my role as caregiver. Every aspect of her life now depended on me. I had no alternative but to repay that need and her love by accepting my new role with as much grace as I could manage each hour of each day – one day at a time.

Over the years many people have asked me how I could have done what I did as a caregiver. My answer has always been the same “Love makes you do crazy things!”

Peace and strength to every caregiver!

REPLY

Scott: You are such an eloquent communicator of your feelings. Cancer is not something we would wish on anyone – but it does seem to be an epidemic. How we and our loved one(s) handle it is the true meaning of LOVE. This experience has deepened the love my spouse and I have for each other – which is the only redeeming aspect. I also know what will kill me and don’t need to wonder if the heart trouble that runs deeply in my family will be my end. Knowing the enemy helps us win the battles if not the war. Love and peace to you and your family.

Scott,
Thank you for sharing. This is a guide for caregivers and patients as well. What a joy!
Loli

@IndianaScott Hi Scott: While all of your posts are thoughtful and meaningful, this one just took my breath away. Thanks again for sharing with us. Teresa

Scott, what a beautiful story of Love! My sense is that your story some would say is so “old school”, but I would say that you were experiencing that part of love that seems to escape many of us today. Everywhere we look whether it be TV, radio, magazines, movies, etc. its all about sex, performance, looks that seems to try and send us the message “this is what love is all about”! Your story, although not that anyone of us would welcome, in my opinion truly represents how true love is experienced. I also believe the greatest example that was shown to all of us is the very sacrifice that Christ endured for all of us. Thank you for sharing your very personal story! I know I have been touched by it and I believe that you are leaving a true love story within your family that will last for generations. God bless you both.

Thank you for “Sharing your heart” Faith, Hope and Love;
ABut the “Greatest of these is Love”

(Always was and always will be)❤

That’s an amazing post.

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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@ihatediabetes Thanks for sharing this very heartfelt story with us! Teresa

Liked by ihatediabetes

@thankful

Scott, what a beautiful story of Love! My sense is that your story some would say is so “old school”, but I would say that you were experiencing that part of love that seems to escape many of us today. Everywhere we look whether it be TV, radio, magazines, movies, etc. its all about sex, performance, looks that seems to try and send us the message “this is what love is all about”! Your story, although not that anyone of us would welcome, in my opinion truly represents how true love is experienced. I also believe the greatest example that was shown to all of us is the very sacrifice that Christ endured for all of us. Thank you for sharing your very personal story! I know I have been touched by it and I believe that you are leaving a true love story within your family that will last for generations. God bless you both.

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@johnbishop– John, thanks for your kind comment. I always respect them.

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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God bless you and your son!

Liked by ihatediabetes

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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ihatediabetes, I have seen some Downs syndrome adults working at Children’s hospital in the cafeteria stocking the eating utensils. They do have job coaches that enable them to work outside the shelter. The man I saw was totally intent on his job and did not perform what a supervisor I once had called “chin music” which is simply too much verbal visiting.

Thank you for sharing your trials with us. It can be difficult to live through this type of experience. When my son was severely injured the social workers int he hospital came to me 2 days post accident and tried to demand I place him into foster care as it might be too difficult for me to work and care for him. He has never been in any place except home and 10 months of recovery in hospital.

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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Your story tugs at my heartstrings. We don’t know what we are getting when we have children. I have a similar story and so I empathize with your situation. God bless you and your son.

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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Thanks everyone. I have my son at dentist now. Then we go for haircut. I picked him up at center aka adult day program to run errands. Our semi annual meeting is Thursday. That’s when county and providers come to talk about what’s going on. These meetings are stressful to me. I’m sure we are going to talk about my son participating on work crews and what to do about bathroom accidents. I was actually thinking of looking into Depends just because my son will be away from center and he will be standing up for awhile. He is learning to run dishwasher in a college cafeteria in Minneapolis. That’s what I mean about needing to put out so much effort just to do something people take for granted. All this so my son can try working in community for a few dollars in spending money. The alternative is staying in center all day long.

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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Hello @ihatediabetes I applaud your efforts! I can only say my wife had to use depends and they were a godsend for her!

Worth looking into I would think!

Peace and strength

@ihatediabetes

My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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Reading your experiences as caregivers, nurtures my soul. Specially those who take care of children. Children have been close to my heart since I was a child myself. It took me to pursue a teaching degree, and to work with low income children in Mexico City. What made me very strong during my ordeal with mouth cancer, was to think of the little children that have to go through cancer and other ailments, sometimes since they are born.

And now, to think of you, care givers, that have to be right there, day in and day out! You are true heroes. True Saints.

With respect and admiration, Loli

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