MiembroSam_8.Mar-49

Nombre verdadero

Sammie Marsalli

Sobre mi biblioteca

Amateur home caregivers of a loved one with Alzheimer´s are on the loneliest possible life journey. Their deepest feelings are unexpressed even to their family members so as not to intrude and burden them with added weight on their shoulders. These emotions are kept in a " human vault" which makes caregiving extremely lonely. They simply go unshared even with their closest friends. Emotions build a volcano ready to explode at any moment. Sadness is deep and daily at any given moment. Memories become dangerous when we compare the "before and after" of Alzheimer's sinking us into loneliness and depression. It becomes a silent battle of courage with ourselves as well as a battle for survival for our loved one. As Alzheimer´s caregivers in the home, we will sacrifice whatever it takes, suspend any activity we enjoy, ignore our basic necessities, and neglect our health to prevent our loved ones from shutting down.

Caregivers we are vulnerable to frustrations that test our temperament. Desperation often sets in. We easily forget that what is logical is not logical to the person we are caring for. Caregiver's of Alzheimer´s measure successes and failures differently than before. The “bar” has completely changed. We are most generous especially with other caregivers always being available day and night to help them in very difficult situations.

Caregiving for a loved one with Alzheimer's in the home without any outside help is extremely difficult but in most cases there is no other option. Outside professional help cannot respond in "real time" when behavior changes occur. Only home caregivers can. No one has the exact key as to how to respond to these changes as there are no two profile behavioral changes alike in the same stage of the disease.

Consequently, there isn't a standard therapy to apply as each person reacts differently in each stage. There are really no fixed "do this'' and "do that" rules or a set guide for the home caregiver to follow. Historical habits and past idiosyncrasies influence behavioral changes greatly for those with Alzheimer's. Even the stages of Alzheimer's vary in their characteristics. Only experiences from others can be your guide. What works for me may not work for you. Caregivers are completely on their own.

Alzheimer´s hospice care really begins in your home on the very first day of the diagnosis. As a result, I began to invent my own therapies. Each family as caregivers find themselves alone inventing their own therapies to mitigate behavioral changes and needs.

As there are no two Alzheimer's victims alike, there are no two home caregivers alike. We are all different in the way we react. That is why there isn´t a “supposed to do list” to follow. Our patience levels vary as well as some of the personal tools we apply because we are all dealing with very different behavior changes. Home caregivers only have trial and error experience to rely on as their guide.

I realize there are other "amateur Alzheimer´s home caregivers" like me on their own trying to take care of a loved one with Alzheimer's Disease. Like everyone I learned the hard way on my own how to mitigate tremendous changes in behavior with my wife. It's not easy as she was in the beginning of the advanced stages, unable to speak.

Hopefully, my books "Preventing Her Shutdown, Losing My Wife To Alzheimer's" and "62 Tips For Caregivers Of Alzheimer's, To Delay Shutdown," become a shortcut to avoid some of the desperation, frustration and sadness on their tortuous caregiving journey.

Preventing Her Shutdown, Losing My Wife To Alzheimer´s

62 Tips For Caregivers Of Alzheimer´s To Delay Shutdown

Sobre mí

I am originally from California. I met my wife, Chilean, during my first year living in Chile. I had started a very small language service company with very little money that taught adults English. I was the only teacher and I had a secretary who happened to be the owner of the house I was living in and conducting classes. The classes began at 8am before work in the morning but most of the classes were in the evening after working hours. My future wife became a student of mine in one of my classes that I was teaching late in the evenings. My hours were long from 8am to 9pm in the evening. After closing down my day ended about 10 pm.

We became engaged at the end of my first year. She had a car, I didn't. I didn't speak Spanish and she spoke very little English. Love has a way of breaking through language barriers. She knew I was a workaholic but that didn't seem to bother her. In fact I seemed to feel her admiration as this wasn't common in Chile at the time. Well, if she married me accepting me like this, I just took her for granted which turned out to be a serious mistake later on in our marriage.

We have been married 44 years, 3 kids now grown up, a great dog most of those years, a typical family on our own living a quiet normal life without major uncontrolled illnesses. We were a typical generally healthy family, prosperous with our own growing company living the typical competitive life we are all familiar with.

My wife was always independent throughout her life making decisions on her own as all mothers and wives do. She loved being a mother which filled her day with many school activities, car pools and just teaching our kids the standard moral values of life that mothers usually do. She was also very busy always getting together with her closest childhood friends, constantly receiving and giving invitations to each other's homes for a “tea”, birthday or any other special event. They were extremely close friends and she was always there for them in times of need or crisis. She was always available as this was her DNA and her friends knew that.

Our family has always been quite united and as parents, always present or participating in our kids' activities while they were growing up. Their mother, religious, was most active in their lives assuring they lived with the highest moral standards. I have always told my kids that their success was due to their mother not their father as I was hardly ever home except for weekends.

As an author I am certainly not an expert or an authority on Alzheimer's. I am definitely not a professional author and didn´t pretend to write an authoritative masterpiece. I never pretended to be any one of those things. I am simply an ordinary "John Doe" 24/7 caregiver, husband, sharing my experiences, inventing therapies while caring for my wife with Alzheimer's. We are a typical family on our own trying to hold on to my wife and avoid her shutdown.

Caregiving for a loved one with Alzheimer's in the home without any outside help is extremely difficult but usually there is no other option. Outside professional help cannot respond “in real time” when radical behavioral changes occur. Only home caregivers can. No one has the exact key as to how to respond to these changes as there are no two profile behavioral changes alike in the same stage of the disease.

Consequently, there isn't a standard therapy to apply as each person reacts differently in each stage. Even the stages of Alzheimer's vary in their characteristics. Only experiences from others can be your guide. What works for me may not work for you. Caregivers, no two alike, are completely on their own.

I began to invent my own therapies. Family caregivers find themselves alone inventing their own therapies to mitigate behavioral changes and needs.

I realize there are other "home caregivers" like me trying to take care of a loved one with Alzheimer's. Like everyone I was learning the hard way by trial and error to mitigate tremendous changes in behavior with my wife. It's not easy as she was in the beginning of the advanced stages.

Hopefully, my books "Preventing Her Shutdown, Losing My Wife To Alzheimer's" and "62 Tips For Caregivers Of Alzheimer's, To Delay Shutdown," become a shortcut to avoid some of the desperation, frustration and sadness on their tortuous caregiving journey.

Ubicación

Santiago Chile

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https://www.amazon.com/dp/B0CVG3FWB5?binding=kindle_edition&ref=dbs_dp_rwt_sb_pc_tkin

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Litsy (@Sval)

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