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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!

Interested in more discussions like this? Go to the Caregivers Support Group.

eileena | @eileena | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

REPLY
chipshot2000 | @chipshot2000 | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

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ihatediabetes | @ihatediabetes | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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

REPLY
loli | @loli | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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

REPLY
rmftucker | @rmftucker | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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.

REPLY
eileena | @eileena | Apr 24, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 25, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

@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

REPLY
ihatediabetes | @ihatediabetes | Apr 25, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 25, 2017
In reply to @ihatediabetes "My story of caregiving is having a baby boy. My husband and I were very happy...." + (show)
@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.

Jump to this post

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

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