Love and Caregiving...

Posted by Scott, Volunteer Mentor @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!

@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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My husband has had incontinence issues since Prostrate surgery in 1991, that have progressively gotten worse since he is now diagnosed with Alzheimer’s Disease and vascular dementia since suffering several small strokes over the last 2 years. He wears depends and gets along well with them. They have made things so much easier especially at night when he has the most difficulty.

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@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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It is a great plan. Yes, Depends sound great. Best to prevent a mess.

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@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 The use of Depends sounds like it would be a help to your son as he steps out into the community without the worry of accidents that would be embarrassing to him. Your ability to be flexible is inspiring to everyone who is a caregiver. You are doing a great job! Thanks for continuing to share your story with us. Teresa

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@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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Thank you. My son does have experience through his program to interact with senior citizens. His center used to volunteer for meals on wheels program. The driver is an employee of adult day program. The kids used to help bring meals to the door of seniors. Unfortunately the government cut the program so these seniors were given frozen meals to heat up themselves. That was really sad because the seniors lost their daily interactions of people coming to door and greeting them. The young people lost an opportunity to get out into community to do something useful. I don’t think the people making these decisions really understand the full impact of meals on wheels and what is actually happening out there during these meal deliveries. It’s not just about food.

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@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 That is too bad! Both the volunteers and the senior citizens lost out on this one. Teresa

Liked by ihatediabetes

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@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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Hi everyone, I am going to California to visit daughter. She’s little sister of the 25 year old son I have been talking about on mayo connect. I was thinking that another kind of caregiver is the brothers and sisters of children with disabilities. I was thinking that my daughter tried to help with her brother eventhough she was just a little kid. We would be in a restaurant and my son would be walking around talking to everyone. My daughter got my son to leave by running up and saying she was going to sit in the front seat. That got my son riled up and he ran out to car so he could sit in the front seat. She had all these tricks to help manage her older brother. She also used to apologize to people and explain to grown ups that her brother has a disability. But she was only ten years old. She was a child caregiver. I think they are hidden caregivers.

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@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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Some of them are and they are wonderful caregivers. Your daughter must really love her older brother a lot.

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@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 What a lovely tribute to your daughter’s caring nature! Thanks for sharing that and I hope that you have a lovely trip to California. Teresa

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@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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Hi @ihatediabetes What a gem you have in your daughter! Yes, a hidden caregiver indeed!

Enjoy California and your time with her!

Peace and strength

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@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. First I have to get through semi annual meeting at day program. It’s today. Btw I did go to Walmart last night and picked up package of Depends for men. They are grey in color. Thank goodness they aren’t white. That would be too feminine. I also bought some disposable washcloths. They were right by the Depends. So I did learn something about what people are buying for incontinence. Yes, my daughter is a gem. Having a brother with disability really made her grow up thinking about people with special needs. There are so many kids growing up with parents that are ill or siblings that are disabled. I think they are unsung heros. And they’re just kids.

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@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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Good luck today! I will be thinking about you!

I agree, One of the few benefits of caregiving I have seen as well has been the empathy it instilled in our young grandsons. After their experiences helping their grandma and seeing what she needed, how she changed, etc. they truly understand not all good people are ‘normal’ and they are not to be feared, mocked, etc.

Gems for sure!

Strength and peace, @ihatediabetes

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Hi everybody, yes child caregivers are amazing. I do think God uses the experience to create something beautiful in these kids. My son’s semi annual meeting went really well. I did get the Depends for men and showed them to everyone. The plan is for my son to put one on when he puts on work uniform. The center has work shirts, pants, and non slip shoes that he has to wear. So the grey color Depends hopefully won’t be noticeable to my son. He really likes to work in college cafeteria. He gets to eat lunch with college students. All you can eat too. Also I did find out that the center is still delivering meals to seniors in their homes. I’m really glad about that. But it’s not called meals on wheels. It’s another non profit but it’s still hot meals delivered to homes of senior citizens. The kids from the center are doing this volunteer job on Thursdays and Fridays. I’m sure other volunteers take the other days. It’s definitely an important thing for somebody to eyes on see these senior citizens every day. Peace and hope to you all.

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