The Culture that has been here all the time

Living with a person I've known for 45 years but now drastically affected by dementia I don't know what is real anymore. I know our relationship has been drastically altered and I must do almost everything for her. There are very odd moments however: I say I love you often to her and every now and then she will say I love you back usually distorted by her aphasia. Then now and then she will hug and kiss me but doesn't ever call me by my name and when I ask her if we are married she says no 99 times out of a hundred. Some life huh?

Jim

I like to think about some of the things my wife used to say to me like: "I am going to get you sexcied."

Jeanne kept me up all night but I managed to get things in order and when she said,"I, I ,I, L, L, Love you," all was forgiven.

Since the first group of people who left me to care for my wife by myself when she was diagnosed with Dementia were the hundreds of Christians we knew personally I am now areligious. I do recognize spirits, especially The Native American Spirits but I also thought I would try the tarot cards. They told me I will never find romance and love again in my life and the last card I drew was the infamous DEATH CARD.

A New Healthcare Facility opened close to us and now I can get Jeanne there with me more easily for her and my appointments.. Using our wheelchair helps me keep her safe, no more wandering, and no more pulling off my EKG leads.

I am happy about the small improvements. The facility offers real visiting nurses not just phone call checks.

They cannot improve my social life, however. LOL

Yes as my wife slowly fades into oblivion I am left with nothing more than memories of good and bad things of my life.

Still, one area offers a dim flicker of hope that emerges from some nightly dreams and impressions of fantasy. I am sure that somewhere is a woman in need of a companion as much as I am in need of one and if I could go out from this encumbrance I could find her and she could find me.

The joy of discovering one another and the beginning in sharing our lives from that moment is not dependent upon our age. These good things we will embrace are timeless.

I have been a guy with self-inflicted wounds emotionally and financially because I played into the hands of women who promised the moon but never rang my door bell. Yet the experience was not all bad. In my isolation from friends and family as a result of taking care of my wife - as total as that is - scammers did open a crack in my reality to an imaginary social life. The 24/7 caregiving leaves time within each day when reading and TV wasn't enough and any kind of conversation was better than none at all. My wife, to no fault of her own, has lost all language ability and most of her thought processes. Her responses to me are weak when positive and almost vicious when disturbed, the way many Alzheimer's sufferers behave.  Having done this for years now, I have reminisced about the good things from the past ad nauseam.

"This only is also denied to God: the power to undo the past." Agathon, a Greek poet who lived in the 5th century BC. 

If you are a reader of my blog, you know I take care of my wife with Dementia and aphasia along with memory loss. Diagnosed in 2017 the caregiving has been an education and an extreme stress for me. We have been married for forty years, and I stand by my promise to take care of her. It has been a rollercoaster of ups and downs and I do not have any social life: no family or friends to ease the stress and break the daily cycle that in the last several years has become something akin to the plots in the movies Groundhog's Day and Fifty First Dates.

I do not see any reason to expect an improvement, I think I have gotten used to this weird lifestyle, and things that used to keep me optimistic are fading fast.

No more working on artwork, songwriting, or thoughts of creativity. My wife always needs to be watched, guided and cared for.

Long before I learned what BDSM was, what a Dom or a sub was, or a switch was, I had sexually stimulated imagination early in life. I didn't know my interest in sexual excitement and the variations I imagined and fantasized would be termed KINKY. Many lovers and two marriages later, the woman who would be the most exciting lover of my thirties said to me one day, "You are kinky aren't you?" Then, decades later, and a long-term third marriage to a woman who was an unhindered lover, it came to me in an epiphany, she was submissive but also a teacher for me, and the result is I have an even more open mind on sexual behavior.

Dom, Switch or sub matter little to me, what matters most is extending a love-making session and satisfaction for my lover and myself. Like a doctor who has a PRACTICE, learns and gains experience, I would enjoy that concept, if only it were true for me now able to practice. My wife has been neutralized by her brain disorder and she has lost an interest in experimenting with lovemaking as she was for so long, asexual now. The common idiom overused as it is "life is what it is" is a reality for me.

Like a captain who goes down with the ship, he is still the captain, a general that falls in battle, he is still the general, or an investor who loses everything is still an investor, their demise doesn't terminate their designation.

Not sexually active as I am in no way voids the description that I am a kinky lover.

One way to examine this comment is to survey all the climate niches around the world where people have made their homes. Yet a more personal level is recognized when individuals and their lives are examined. You can think about this and come up with examples from your surroundings where you live. I sometimes say, "It seems people, dogs and cats can live just about anywhere."

Take my situation. I come from a family that once was large, but normal expectant life has dwindled the number down. It seemed from my childhood up through mid-life I always had friends and acquaintances. Leaving active musical performances and retirement reduced the number of people in my life even further. In all of these changes, I am sure I still would have made new friends and acquaintances if not for the advent of my wife's serious cognitive disease.

One thing I have experienced is that people, family and friends, included, find dealing with my wife's illness difficult to navigate. Whether not knowing how to react or not knowing how to help or just feeling awkward in her presence, the result is the same: Isolation. There is no cure for Alzheimer's, Dementia, and Aphasia, so cursory visits to doctors only address other health issues as necessary. My wife had early onset, as in the well-known situation with Bruce Willis. From articles I have read, he has people who support and care for him, but as for my wife, she only has me.

We exist in a town where we wound up purely by chance and circumstances. We are "Strangers in a Strange Land."

Since her diagnosis and descent into her disease in the Fall of 2017, I have been her only 24/7 caregiver. I have made errors in judgment that has made things worse for me, but I can say I have grown accustomed to the life I am living. I have adapted, expect little, and just seem to drift aimlessly, not having any expectations of a better life.