Turning Points in Dementia / Alzheimer's Care

The issue of understanding, dealing with, and providing care for people diagnosed with Dementia/ Alzheimer's, as well as all those included in the Caregiving Partnership/ Team, is a very complex one. 

I have tried to brainstorm some of the issues with which we must grapple. 

1. Understanding the cause of the Dementia
2. Understanding the nature of the Dementia
3. Understanding the expressions of the Dementia
4. Understanding the trajectory and progress of Dementia
5. Understanding the difference between old age changes and Dementia
6. Understanding how to support of the person with the Dementia
7. Understanding how to support the person with the Dementia at the various stages of the disease
8. Understanding how to support the person with Dementia while understanding that slowly they are not able to care for themselves
9. Understanding how to support the person with Dementia while understanding that their skills may come and go, return at the same or lesser ability level, and eventually disappear totally
10. Understanding how to support the person with Dementia while continuing to acknowledge and respect them as a person
11. Understanding how to support the person with Dementia while continuing to respect their rights as a human being
12. Understanding how to support the caregiver in the Dementia team/ partnership as well as the person diagnosed.
13. Understanding how to support the family of the person with Dementia.

1. Realizing the importance of relationships in general 
2. Realizing the importance of respect in relationships
3. Realizing the importance of communication in relationships
4. Realizing that in many ways living a good life with Dementia is the same as LIVING A GOOD LIFE
5. Realizing the importance of partnerships in caring relationships
6. Realizing relationships depend on the nature of the person, their experiences, their personalities
7. Realizing that changes over time will require changes in relationships in general.
8. Realizing that changes over time will require changes in approach to supporting the person with dementia
9. Realizing that the person is still the person and not the disease
10. Realizing there is no easy, one good way, "silver bullet" way to deal with Dementia
11. Realizing that the very nature of having to make decisios for the person with Dementia is in essescence a violation of their human rights and must be done very carefully with love and respect
12. Realizing what the person with the diagnosis of Dementia is experiencing
13. Realizing what the person supporting the person with the diagnosis is experiencing
14. Realizing what the family supporting the person with the diagnosis is experiencing

1. Focusing on how to help medical professionals be better able to support people diagnosed with Dementia as well as their caregivers and families.
2. Focusing less on the medicalization of Dementia
3. Focusing on transition in home, family, relationships
4. Focusing on redefining of home, family, relationships
5. Focusing on supporting Dementia cognitive and physical losses as a physical/ mental disability
6. Focusing on the person, not the disease as much as possible
7. Focusing on human rights and respect for the person who slowly is no longer able to make decisons for themselves
8. Focusing on living a full, meaningful life that will change as the Dementia changes
9. Focusing on alternative skills, activities, experiences that will change as the Dementia changes
10. Focusing on mobilizing community support for caregiver teams
11. Focusing on keeping a balance between meeting the needs of the person diagnosed with Dementia and not assuming the person cannot meet their own needs
12. Focusing on keeping a balance between meeting the needs of the person diagnosed with Dementia, not assuming that they cannot meet their own needs, but stepping in before the person becomes too frustrated.
13. Focuing on keeping a balance between meeting the needs of the person diagnosed with  Dementia, not assuming that they cannot meet their own needs, but stepping in before the person becomes too frustrated, and realizing that this may change often if not day to day or hour to hour. 

1. Research on finding a cure for Dementia
2. Research on best practices for supporting those diagnosed with Dementia
3. Research on best practices for supporting all those involved in caring partnerships
4. Research on living well with Dementia
5. Research on best practices for facilities working with those diagnosed with Dementia
6. Research on design of facilities for those needing protected care

1. Sound Bite: "How to keep life relevant? Useful? Meaningful? Personal?"
2. Sound Bite: "Individualize not institutionalize"
3. Sound Bite: "Individualize not medicalize"
4. Sound Bite: "Live until you die"
5. Sound Bite: "The diagnosis does not have to be a death sentence."
6. Sound Bite: "There is quailty life after diagnosis"
7. Sound Bite: "As in life, so with Dementia, just a little more complicated."
8. Sound Bite: "Not segregated into caring communities but rather communities that know how to care"
9. Sound Bite: "Living a good live with Dementia is living a good life period"
10. Sound Bite: "We are all born with a death sentence!"

Facing Adversity in Love

I wonder when a love relationship faces adversity in the beginning of its formation and the couple are able to work on the differences, if that in fact doesn't help to make the relationship stronger, more cohesive, more authentic, more true, less problematic.

Many relationships begin in a "pie eyed, head in the stars" manner. Excited feelings not to mention the lust and sexual actvities seem to rule beginning relationships. The emotional impact of love often covers the reality of two people beginning to know each other, to learn about each others likes and dislikes, good bad and ugly points.

Often when the difficulties in relating, in living together, in being oneself as well as part of a partnership finally come to light, it is too late to easily do anything about it or even to recognize the cause of the unhappiness.

The engagement is celebrated, the wedding is planned and then takes place, living arrangements are made, furniture and decoration of the apartment ensues, careers are pursued and/or or educational advancement sought, cars and houses are purchased, having children is discussed and planned, eventually a child (or children) join the relationship.

All the time these above activities have been distractions filling time and not allowing the two people in the original relationship to really enjoy themselves let alone to deal with their difficulties, inability to relate, sexual need differences, inability communicate, and more. This especially does not make for a happy family with children.

Perhaps therapy, individual or couple, takes place and perhaps some or all of the difficulties are successfully dealt with. But after so many years of "shoveling the shit into the attic" the ceiling begins to drip shit and one drip of shit cannot be distinguished from the other let alone the time frame of when it was first shoveled and/or where it was shoveled from and by whom! (Read that again to make sure you follow.)

So many marriages end in divorce, so many spend their years in sorrow, anger, avoidance, and often verbal and physical abuse and violence. '

Back to my original premise, perhaps identifying the adversity in the beginning will help to increase the chances of success of the new love relationship. Perhaps arguing and disagreeing upfront helps. Perhaps therapy from the get go will reveal the causes of the conflict and allow the couple to begin to work on solving or at least understanding their differences and  allowing their love to develop in a healthy, solid way.

Perhaps seeing a couple holding hands in wedded bliss is really looking at them through  a cloud whereas seeing them arguing, separating and then coming back together again, at odds with each other on and off, is a way of seeing a couple actively working their way towards a long lived, successful marriage.

A Question Often Asked

This question, again, was asked of me recently. Good naturedly, with love, and with sincere caring ... but always unexpected. It caused me, in my explanation, to once again have to articulate my feelings and I decided to share them with you here, even though somewhat personal. How is that for a set up?

The question usually runs like this: Have you started dating yet? Are you going to be dating? Are you looking for a partner? And with lower implications: Are you going to get a roommate?

The answer runs like this. "While I do not rule out all possibilities, NO, NO, NO and NO!" With a smile but emphatically. The question always takes me by surprise, if only because it is the last thing I want, desire, or even think about (unless asked.)

I have had the LOVE OF MY LIFE. Gregory, who died approximately 18 months ago, is still a large part of my life, especially after 41 years. Why would I want another partner? life mate? lover? roommate? Just because I am a widow (prefer that word to widower :-) Why would people automatically think I am on the lookout for  the next relationship or a roommate?

Relationships take a lot of work. I often referred to Gregory and my "union" as one based on "The 49/51% Controlling Interest Principal." The give and takes, negotiations, conversations, and arguments that are involved in any relationship are difficult. The ones that are part of a love relationship can at times seem close to impossible.

While the 41 years of our relationship were not always pieces of cake (I especially love Devil's Food with Vanilla Buttercream Frosting,) being on the side of being in a relationship (51%) always won out when compared to spending a life without one (49%.) 

But often the race is a close one and the work involved in maintaining a successful relationship is ongoing and not always easy. Roles should be subject to change on a moment's notice, (another quote Gregory and I often used,) respect (including self-respect) is a key factor, compassion is always the rule, and giving up part of oneself is a necessity ― in any successful love relationship.

For Gregory and me, having stepped outside of societal norms by declaring and accepting our homosexuality, we often times had to set out our own norms, expectations, and milestones along with the accompanying millstones. (Poetic isn't that expression "Milestones and Millstones?"

Up front let me state, YES, I am a gay man and therefore find other men sexually desirable. Like most Gay Men, I guess I am always checking out those around me and would not turn down a sexual advance if the occasion arose. But just because I am a widow does NOT mean I am looking for a new relationship! 

I enjoy my solitude. I love having the condo to myself ... to keep clean or to mess up as I choose. The cats, Emma and Gigi, greeting me when I arrive home, their mad chasing each other at least three times a day, and their warm purring when snuggling in at night will NEVER replace my Gregory, but they provide more than enough "human contact" and a fair amount of responsibility.

My friends and family fill my time comfortably and are there when I need extra support, for example picking up a few groceries for me if I am ill. They are there to help meet my "nurturing quotient" as I support them. Calls and e-mails are exchanged, meals in and meals out are shared, events are jointly attended, movies and theater are shared. More than enough comfort for me.

I am never lonely, except when my emotions choose to visit, unexpectedly, with their life lessons and my grief for Gregory's having died takes over. But after some tears and some introspection I come out the other side feeling OK again, if not stronger!

I need to add, in relation to relationships: Who would want to look at me, a seventy two year old man who has seen a few? Yes I am vibrant, yes I am well groomed and dress well, yes I am attractive, yes I am experienced and interesting ... but I am no longer (if I am to be honest with myself) fuel for sexual conquest.

When younger, every man passed was a potential sexual partner. Every waiter or clerk was a potential adventure. Every glance, every brush of knees in a movie theater or on the bus, was a possible sign that the other one was interested. Most "signs" didn't pay off, but in those days, that was one of the only ways of "Homosexual Communication." When most things were still underground with very few places to go where you could be your "Gay Young Self," except maybe one of the few then existing gay bars, this is where the potential action was.

Also, I need to add, that I "came out" when I was 18. I was young and was attracted to other young men my age. For me, and I believe for lots of us, that youth culture still holds sway even though one grows older. 

So here I am, now 72 and by force of habit (and fantasy) I still prefer younger men. In looking for a relationship, as an invisible 72-year-old at whom no one glances or is attracted to anymore; what are my chances for finding a relationship?

With Gregory, we were young, with youthful bodies and desires. Over 41 years we grew old together and our love grew stronger together (even though the losses of the Dementia/ Alzheimer's) without having to depend of the excitement and lust of youth. 

Older men do not interest me and younger men do not notice me. For those older men in their 50's, 60's and 70's, I say "No thank you." For those younger men who would like a "daddy" (not necessarily a sugar daddy with money,) I say "No thank you," that turns me off. For those younger men who would charge me for their services, I say "No thank you," that turns me off as well. 

So as for finding a new lover, “NO!” Besides the slim chances, Gregory is resting in peace ... so the 51%-49% issue is resolved in favor of not being in a relationship. The 49% wins out. 

I enjoy my solitude and privacy, I enjoy the condo to myself (in or out of order.) I come and go as I please. I eat when and what I please. I have no major day to day responsibilities to anyone but myself (and my kitties.) I wake up when ready and go to sleep when ready and take a nap when I choose.

I buy what I want to buy and usually can afford to do so. I choose where I want to travel, stay as long as I want, meet new acquaintances or old ones on the way. I do not need a roommate for company or to share the expenses, I am fortunate! 

And finally, as a 72 year old man, (who might still like a sexual trist or two :-) who would have me ... not that I would NOT want to be had!

Moving Away From The Physical

In this meaningful passage, Karla talks about the relationship with the person who has died, as needing to move from a physical relationship to something different. The nature of the relationship changes but the relationship itself and love never dies.

The way we interact with the people and animals and things we love is predominantly physical. Everything we experience in this world we experience with our physical senses.

We see them with our eyes, hear them with our ears, speak to them with our voices knowing they hear us in return, we touch and hold them, we gesture and send messages with our physical bodies, we intimately know their scent, their touch, their presence in our lives in a physical way.

We exchange communication, love, nurturing, and sharing in physical, sensory ways ― touches, hugs, words, song, food, gifts, shared experiences, a sunset, a concert, a road trip, the first time our children say our names, roller coaster rides, intimate dinners, love notes, laughter, and when those ways of being in a relationship are gone, the adjustment is excruciatingly difficult and painful.

Figuring out how to have a relationship with someone who is not physically here, and never will be again, is incredibly difficult, yet we must because to not have the relationship is even more difficult.

While it is the case that death ends a physical life in a physical body, it does not end a relationship and it never ends love.

Taken from Yoga for Grief and Loss by Karla Helbert Pp 21-22

A Facebook Conversation

C J: Sometimes people don't realize the hurt that they can cause by silence.

M H: So true! But sometimes the noise hurts more.

C J: Sometimes. Then at least speak softly with the openness and willingness to see things through to harmony.