My response to a post by Kate: http://kateswaffer.com/2015/12/20/is-brain-plasticity-the-key-to-healing/ (opens in a new window)

I also believe in belief! I believe that Gregory was able to continue to do so well for as long as he did because we both were able to support his brain’s ability to change and heal itself. We read, we traveled, we talked, we went to opera and musicals, we entertained, we engaged family and friends, we enjoyed our pets, we planned, we walked, we communed with nature, we kept out expectations high, we enjoyed life to its fullest.

In the end we all must die. We have known this from when we were first born. Perhaps facing this also helps the brain do its best until it is ready to go back home.

"Letting Go" By: Kate Swaffer

I am reproducing my fellow blogger Kate Swaffer's post her in its entirety because it is such a significant piece. Do, however, please visit her site for her many wonderful posts.

http://kateswaffer.com (Opens in a new window)

Letting go

Kate Swaffer / 19 hours ago 

One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.

I am not talking about physical functioning, as I was and am very used to that happening. Needing reading glasses was the first major step towards that, and possibly giving up playing squash the second!

I’m okay about my hair going grey, I’m okay with my wrinkles that mean I have lived and loved, I’m even reasonably okay living with the ongoing chronic pain of severe arthritis and other chronic conditions.

Accepting that I can no longer manage medication, nor sometimes work out how to get dressed or make a cup of coffee is emotionally debilitating. My maths ability has been impaired for some time, but now, it is so impaired others have talked about it, and suggested to my husband perhaps it is time I let go of doing more things.  Of course, we have had to go through the pain together this weekend, as it had to be brought up…

I find this to be part of the process of letting go of the many things you lose with dementia, but in contrast to when you are letting go of someone you have loved, you still have your functioning and abilities in tact. When you let go of someone who has died, you still have your functioning and abilities in tact. When you lose a job, you still have your functioning and abilities in tact. When you lose friends (except when this happens after a diagnosis of dementia), you still have your functioning and abilities in tact.

If you have ever wondered why people with dementia act in ways that are hard for others to live with, manage, accept, then please think about what it is like for us, the people diagnosed with dementia, who are losing our functioning and abilities. We are changing in ways that you are not, yes, but we are also losing so much of our identity, who we once were, perhaps even who we wanted to become.The future looks grim, and our past, sometimes even this morning or yesterday, is fading, perhaps not even to become a distant memory for some of us.

Letting go is hard to do, especially when you have nothing else to hold onto… or look forward to, which is why it is so very  important to completely ignore Prescribed Disengagement™® , and Live beyond dementia™, for as long as humanly possible.

My Reply: My heart and head cry out loud for you and all others who have gone or are going or will go through this experience. Oh that I could make it all go away, be OK or be better for you, dear friend, like I tried so hard to do for Gregory. There is no way to pet you and say it is OK. It isn't! But know that LOVE does the best it can to replace those losses. LOVE by you and for you. For and from your husband, family, friends, BLOG readers, and so many others whose lives you have affected and influenced and made better!

Kate, my friend in Australia who is a great advocate for people diagnosed with Dementia/ Alzheimer's and who herself has that diagnosis, in a recent blog discusses care homes. In previous posts she talks about the unfairness of how so many people in care for Dementia are treated, especially without regard for their desires, rights, etc. And I agree with her very much. She posted the following to soften her "attack" on caregiver's and also describes the wonderful "Group Homes" she visited in Australia. Here are my comments to her post:

Kate, Your description of "Group Homes" sounds wonderful. I know that there is a movement afoot to move from a "Hospital/Medical Model" of care for Dementia Residents to a "Home/Family Model" and I truly embrace that move.

I also appreciated your "apology" to support facilities and caregivers who certainly are trying their best to provide loving, empathetic care for their spouses and family members, although not always under the best of circumstances.

Sometimes, one must settle for the lesser evils! However, I believe that even in a "Hospital Model" facility, the care can be much more "Home Model" like. Also, the details of what might go on at any facility is often dictated by the stage of care that the residents might be at but that doesn't mean they should have to "settle for less" than humane, best practices! 

I know that at Gregory's facility, many if not most of the residents on his floor are not able to be as active and "family" oriented as we would hope, but the care and the ambience of the place certainly can be better. The health care, medical services are amazingly excellent, especially with residents who can not share their needs, discomforts, pains, and illness symptoms. The social/emotional environment, however can bemuch better.

My continuing quest is to share my observations, having been with Gregory almost every day, with the administration, managers, doctors, and department heads, etc. I am excited and pleased that they are eager to hear my feedback and we have scheduled a lunch meeting (I'll bring the food) in which I can share my observations and suggestions with everyone at one time and then open it to Q and A.

Instead of giving compliments, observations, blames, suggestions for improvement, etc ... I plan on creating a "fantasy story" of what the ideal Memory Care Unit could look like based on the Lieberman Center's physical plant parameters and based on their target population of residents. Wish me luck. I will be sharing the story on my BLOG in the not too distant future.

Thank you Kate, for helping me to continue to educate myself in the areas of: 1) care-giving, 2) appropriate language use when discussing Dementia/ Alzheimer's, 3) seeking feedback from people diagnosed with Dementia on how they would like to cared for, 4) appropriate (if any) use of psychotropic drugs, 5) living beyond the diagnosis and living well with the diagnosis of Dementia/ Alzheimer's, 6) and I am sure etc, etc etc!


http://kateswaffer.com/2015/11/01/safety-vs-autonomy-in-residential-care/

http://kateswaffer.com/2015/11/02/open-letter-to-group-homes-australia/

Kate Swaffer

This morning as Gregory continues putting together his "escape plan" (always room for humor,) I was going through my mail and following my list of blogs when I came across this from friend Kate Swaffer whose name you have seen before in my posts:

"Sit With Me A While Longer" Michael A. Horvich

Discrimination Two Ways

Through my friend Kate's blog http://kateswaffer.com, I discovered the Dementia Alliance International website. Good idea and I believe that it is so important for people with Dementia to have a place to go for support and advocacy.

From Kate's readings, I have come to understand that too soon and sometimes inappropriately, people with Dementia loose their rights as others make decisions for and about them. This includes not only families but also government, hospitals, organizations, conferences, workshops, and other educational experiences which pro-port to support them.

I have had to make Gregory's decisions for a number of years now and it is a very difficult thing to do. He and I have discussed many of the issues while he was still able and I use those as a baseline for decisions I now have to make on his behalf.

At a certain point, the ability to make decisions for oneself must be turned over to a person who will make them for you, hopefully with love, respect, understanding, compassion, etc. If a person is not there for you, health management advocates are available. While the later might not know the person the advocate for, the are bound by fiduciary responsibility.

Never-the-less, this turning point of decision making, balances on a fine line between the "Ws:" when, why, and how, where, and under what circumstances. Questions raise to the top in my mind: When is the right time? Can we do this jointly? What if you protest? Am I sure it is for the best? Does it really matter? etc Can I decide for now but then give it back to you to decide if able? What is the best way to go about this? How will I decide?

I do have one problem with DAI, however. Members can only be people diagnosed with Dementia. I feel like the tables are turned and I am the being discriminated against. I believe that I am one of the "good guys." Don't lock me out! Honestly, I feel resentful.

There is another wave of attention towards women with dementia and women care givers. Even though the prevalence of women needing this support exists at a higher level for women than it does for men,  again I feel left out, ignored, and resentful. 

So I will advocate for Dementia/ Alzheimer's where ever and when ever I can but still am uncomfortable with this male/ female discrimination. Honestly while I have expressed my feelings on these issues, I do know know for sure if I am on target or have all the intellectual date to support my feelings.

Dementia Alliance International is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Dementia Alliance International is a US Corporation with 501(c)(3) status which means donations by US citizens are tax deductible.
http://www.dementiaallianceinternational.org

Here for your edification is the World Alzheimer's Report. It opens with comments from my blogger friend Kate Swaffer. Followed by statistics: 47,000,000 people worldwide living with dementia. 10,000,000 newly diagnosed every year. Global cost of over $800,000,000,000 U.S. People diagnosed doubling every 20 years.

The Language of Dementia

A while back, I started to become more aware of the language I used to describe Gregory and my journey with Dementia/ Alzheimer's, making sure I always spoke respectfully, articulately, and in a way that did not inappropriately add to the stigma that is often associated with the disease.

In the beginning I didn't even like referring to myself as a "Caregiver" because when you love someone, you do what you have to do to make your lives OK. No label needed! Next, I stared referring to my relationship with Dementia/ Alzheiemr's and Gregory as being part of a "Care Giving Team" which included both Gregory and me. I often referred to the diagnosis as "Our Diagnosis" in that while it was Gregory's illness, I have chosen to walk the path with him.

At Lieberman I am also aware of language use and will carefully, with a large smile, correct people when they use disrespectful or undermining language. For example we use "Cloth Napkins" NOT "Bibs." We use "Paper Pants" not "Diapers." Little things like this make a difference!

Here is Australia's official guidelines for Alzheimer's use language. I saw it on my friend Kate's blog. Writing as a person with Dementia, she has given me a new look, from her angle, of what a person with Dementia experiences. The blog deals becoming more Dementia/ Alzheimer's friendly. Check it out: http://kateswaffer.com/2015/08/24/first-steps-to-being-dementia-friendly/

Manifesto For Radical Inclusion Continued

In his book x, Dr. Al Power discussed "Radical Inclusion" for people with Dementia/Alzheimer's. I wrote (thought through) the concept in a previous post. http://mhorvichcares.blogspot.com/2015/08/manifesto-for-radical-inclusion.html At the end of the post I link to Dr. Power's book. I have been discussing this topic with fellow blogger Kate Swaffer as well: http://kateswaffer.com.

I wrote a letter to Dr. Power and he replied. Both are included here as well as my follow up letter to his reply:

Dr. Power I fully support your concept but it causes me to have to look at my situation as a caregiver and see how Full Inclusion fits in. My life partner Gregory (together for 40+ years) was never able to share with me what it felt like to deal with his Dementia/Alzheimer’s so I had to base it on my careful observations and knowing him so well. Kate Swaffer first began letting me know what the story would be like from the side of the person affected and now your work continues to do so. Thank you. I wrote a pretty long piece about my thinking. http://mhorvichcares.blogspot.com/2015/08/manifesto-for-radical-inclusion.html

Sincerely,

Michael

• • •

Hi Michael,

I thank you for taking up the challenge, but I think your interpretation focuses much more on abilities than the manifesto intends. People commonly think of those with dementia more along the lines of what they can do, or what they can remember, rather than who they are. I never meant to suggest that a person could DO all the things he used to be able to do, but that he have the ability to be present and engage to the best of his ability when desired, and never be sold short by stigmatized views and lowered expectations that exclude people without even considering if they might benefit.

Kate will tell you of her frustration with most "dementia-friendly" community initiatives that do not even ask the opinions of people living with dementia--something that would be reprehensible with any other group of people.

My book, Dementia Beyond Disease: Enhancing Well-Being is full of stories of people who were successfully engaged and exceeded people's expectations, improving their lives (and often their abilities!) as a result. Another example is the movie Alive Inside, which uses the power of personalized music to reawaken abilities and engagement, and must be seen to be believed. My book even shares the story of a man who could not speak or indicate any understanding or voluntary communication who, through the sensitive attention of his care partners, was able to "decide" to withhold a feeding tube. There is no pill that can do the things I describe; and there are many that can stifle this potential, even in those who do not appear sedated.

So yes, I meant to challenge and be provocative. But I consider the segregation and exclusion of people with dementia to be the last bastion of the civil rights struggle. For many more examples and more thorough (and less "in-your-face") explanation of enhancing well-being, check out the book.

Thanks again for your feedback.

Al Power

• • •

Thank you for your speedy reply. Yes, I know “Alive Inside” and it is an amazing testament to what people are able to do if motivated, encouraged, and most of all allowed!

I guess with Gregory I never stigmatized him and never allowed family or friends to either (although most of them didn’t do so without me needing to intervene.) I always held high expectations for what Gregory was able to do until he demonstrated that after an abilities coming and going and finally disappearing or the stress and frustration was too much to keep trying, then I was able to respectfully support him. 

I never lost sight of who Gregory is in the sense of him as a person. He is still my best friend, life partner, lover and the man I have been committed to for over forty years. The soul, the spark is still there, it just shows itself rarely or in different ways. It is up to me to see what he is able to show! 

Instead of communicating we “interact” and that is just as good. Even though his language is minimal we can let each other know that we love each other “more than ever” as started saying from the day we received his diagnosis of Dementia, probably Alzheimer's.

Now, I’ll say, “Gregory, you know what?” 

Sometimes he will answer right away or on the second or third prompt, or sometimes just with eye contact (which also is not easy for him), “What?” he will ask.

“I love you!” I will reply.

Sometimes he'll say, “I know.” Sometimes, “OK.” Sometimes a nod of the head or more eye contact.

Then I say, “You make me very happy!” And most of the time he will get tickled and we both laugh at this.

When I ask for a kiss, I will give him one. Sometimes he leans toward me and gives me one. Sometimes he makes “Mmmmmm” while ending with a loud smack. Once he finished the kiss, backed off, and then said, “More?” leaning in again.

Often we will just bump foreheads and I will say, “Boink!” and he will repeat “Boink!” Other times when his wheel chair hits the door frame, he will say “Boink!” and we will both laugh.

Once in a great, unexpected while, Gregory will out the blue look at me and say, "I love you." or something like, "You are so nice." That usually brings tears and a big hug for both of us.

Gregory is no where near the man he used to be skillwise, but he is still the person I love the most in the world and I never miss the opportunity to let him know this as many times a day as I can.

Thanks for your feedback Dr. Power and your fight for equality, I join you!

Fondly,

Michael

These are my comments to friend Kate Swaffer on her blog which is written from her point of view as a person who has Dementia. Gregory was never able to give me this perspective so I value hearing from and sharing Kate's journey as she so articulately and eloquently writes. http://kateswaffer.com

• • •

As always Kate, thanks for your beautiful view, open, honest view of "life on the other side" which could also be called "the right side" or "the best side" or "the it is what it is side" or "doing what's right with the best side you've got." Or I go on!!!

What an adventure you had. Be sure to allow recouping and reentry by taking a vacation from the vacation. We always took a week or two to rest up and regain ourselves after a hectic, extended trip. Enough advice from me! Done with love.

Gregory and I said from the beginning when we received the diagnosis: "We have a choice. Lie down and die or hunker down and keep going." We hunkered and never regretted the choice.

To quote the article on "The Australian Journal of Dementia Care" on Prescribed Disengagement: "When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’, as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia."

In some ways Gregory and I did both. We Disengaged from everything that was a should or ought or a "have to." We gave up life "as we knew it" after studying it and getting rid of the parts we just didn't want to waste our time on! We "triaged:" DUMP these activities in our life, KEEP these, THINK about these and decide later.

We closed Gregory's architecture firm realizing we could survive well enough without working and that the time spent at the firm was "for others." We wanted our time to be spent "for ourselves."

We traveled the world, we subscribed to theater seasons, and went to the opera. We entertained, we increased dinner out with friends, we made short trips around the area. We sold our rental property, the architecture studio, our home (which was all part of the same property collective) and bought a more efficient, smaller, lovely condo in the heart of downtown Evanston, a small city just 30 minutes outside of Downtown Chicago by METRA.

At the same time, we spent time creating a life that would be easier for Gregory to manage. As he needed, I was able to do more and more for us. I got our financial and legal affairs in order, which was no mean trick being a same-sex couple without any protections under the law. I learned how to take care of me so I could better take care of him as the needs increased. I strengthened our support base with family, friends, doctors, therapists, specialists, caregiver companions, etc. I studied the disease and researched our options. My work allowed Gregory to have wonderful days filled with love and things he wanted to do, not things he had to do!

Basically, with the diagnosis, with the knowledge that it gave us, knowing that time was more important and limited, we reinvented ourselves as we would really like to be: not based on expectations from our earlier selves, or family, or friends, or community, or society.

By both "giving up life as we knew it" and by "creating the new life we wanted to live," we lived "Happily Ever After" and are still doing so even with the progression of Gregory's Dementia/Alzheiemr's and both of our ages:-) We are good! We carry much JOY even though it may be on the shoulders of SORROW.

Grief

Read Kate's articulate, eloquent, profound writing on the grief she is experiencing as she walks her path with Dementia/Alzheimer's. Sad but beautifully written:

Click here to read Kate's post on grief.
Opens in a new window.

My reply:

Kate,
May the outpouring of love in the comments of your blog and mine added patch part of the hole of your grief. You put into words so articulately, so eloquently, so beautifully what I have been trying to write about for the last eleven years with Gregory and my journey through Dementia/Alzheimer's. (http://mhorvichcares.blogspot.com) But your words are from your side of Dementia, not someone looking in and that makes them even more powerful and more profound! I too find that writing helps heal. But your hole of grief is also a sacred one that you are entitled to, no one can or should try to take that away or pretend that it doesn't matter or exist. You and it should be respected, be supported, be loved as you walk through it to the side of acceptance and peace. Acceptance and peace will arrive. You are fast becoming a large part of my life and I send you supportive energies.
Fondly,
Michael

A Dialogue About The "Dementia" Label

Kate Swaffer in her blog "Is ‘diagnosed with dementia’ the new ‘in’ group?"discusses why people would want the label "Dementia" if in effect it was not confirmed.

Click here for Kate's Post 

She says: 

Currently, a diagnosis of any dementia cannot be confirmed until an autopsy. The point being, not enough is known yet about dementia, and further research is required before we can be positive of any dementia diagnosis. However, doctors can be reasonably sure, certainly enough to either confirm, or not confirm a diagnosis even though occasionally they make mistakes. Well, let’s be reasonable, everyone makes mistakes.

THIS WAS MY REPLY TO KATE:

After having had a number of problems, on which we couldn’t quite put an “understanding” finger, we were actually relieved when we received the diagnosis of “dementia most possibly Alzheimer’s.” 

At least we knew what we were dealing with. The doctors had run many tests and ruled out other treatable issues that would cause dementia like symptoms: low oxygen, vitamin B deficiency, small TIAs, etc. 

While the actually roller coaster of the last 11+ years slowly took us by surprise we adjusted, acclimated, compensated, studied, and lived our life on a day by day more fully than ever basis! We put our financial house in order as well las power of attorney over health and property. Not only for Gregory but for me as well in the event I would pre-decease him. 

Having the diagnosis “Alzheimer’s” helped with insurance, private disability insurance, social security disability, and “How do you explain this to family and friends.” In many ways the past 11+ years have not only been a roller coaster but have also given us many gifts as we enjoy our life to the fullest and our loves continues to grow stronger!

Most recently I had a long discussion with our Neurologist, asking him “Who is Gregory today?” It was very helpful as well as disturbing. This is a link to my analysis of where we are today: http://mhorvichcares.blogspot.com/2015/06/between-rock-and-hardplace.html

Thank you Kate for your words of wisdom and for sharing with us life on the other side of the Dementia Door. It gives us caregivers great understanding and the ability to be more giving, caring, and compassionate.

THIS WAS KATE'S REPLY TO ME:

It is for most of us a very long and difficult process to get a diagnosis at all, as you have also expressed. I guess though, if your Gregory or I had been having tests based on various cognitive impairments, to see if we had dementia, and after 10+ or even 5+ years were continually told they were not stemming from a dementia, I can’t imagine why I would want to say I was living with the symptoms o dementia, when in fact, they could and probably after so many years of testing, one could very reasonably expect them to be caused by something else entirely… a lack of a confirmation of a diagnosis, after repeated testings, would indicate to me, it is probably not dementia… what are your thoughts on this? As a woman said on twitter this morning after reading my blog, people are very welcome to have her mums dementia!!!

AND MY REPLY BACK TO KATE:

LOL at the tweet. Neither Gregory nor I would have ordered "dementia" if we had the choice. Also the testing he underwent was to rule out other causes for the changes he was experiencing. 

Something was wrong, very wrong and we had to take a close look. His day to day was suffering; his high end architecture and interior design firm (which I was managing after having retired from teaching) was feeling the effects; employees, friends, and family were noticing subtle changes and either took me into their confidence or said nothing (until later.) 

Besides the tests mentioned above he underwent a complete psychological examination that showed unexpected deficits in a number of areas. So we exhausted all possible reasons to account for the changes in his behavior, cognition, decision making, judgement, etc and did so within a few months. We would have been grateful to find out that there was a "culprit" causing the difficulties that could be treated. But all "arrows" pointed to dementia with a probable Alzheimer's. 

So having exhausted all possibilities, we chose to go with the best we knew based on help from our wonderful medical team. Label or no label things were changing and we had to change with them. I had guessed, based on the symptoms I was observing and on my research, that it was really Frontotemporal Dementia. But the brain is a cooperative organ and eventually symptoms generated by all parts of the brain began to show up over time. 

So in short: It is said that by labeling something can give us a false sense of security because we can "name" it and don't have to do anything about it. The good sense of security is that we can come to grips with it and plan for the eventuality of "it." We must not let the label stop us from looking further for a cause and becoming complacent.

The label did help us get our private disability care, it provided a case for us to win a case against his group disability insurance company, it succeeded in getting U.S. Social Security Disability Insurance approved, and finally it kick started Gregory's ability to receive Medicaid from the government. We are not a wealthy family so these various sources of income have helped us cope with the dementia more successfully and more comfortably.

Finally and least important is that telling family and friends that "Gregory was diagnosed with Young Onset Alzheimer's at age 55," helps frame his needs, my needs, and our situation. 

Call it Dementia, (does one capitalize it?) Alzheimer's Disease, Frontotemporal Dementia, or whatever ... it is what it is and we have been doing a fine job of living with it for 11+ years now. I know that it will become more and more difficult for Gregory (and me) as time continues but I will be there for him and through his losses, our memories and his life spark will be there for me. It all comes down to "Love." Thanks Kate.

Whose Story Is It?

I continue to follow and learn from Kate Swaffer, a professional diagnosed with dementia who lives in Australia. Check out her latest blog, "Who's Story is It?" http://kateswaffer.com/2015/05/19/whos-story-is-it/

These are my comments to her:

For one, I am very excited about two seemingly current movements: 1) Being more careful with "language" when describing people with dementia and recognizing that many of the "Inappropriate Behaviors," "Violence," "Acting Out," etc are more indicators of discomfort, fear, frustration, etc of not being able to communicate using the vary language that we so carelessly use! 2) Hearing from more people who have been diagnosed with dementia is so important to get a REAL picture of what is going on in their lives and on how they are and/or should be treated and cared for. I have to admit that as an educated, knowledgeable, caring person I almost didn't see being a care giver from that angle. In my case, Gregory was unable to communicate his needs but I did know him so well after 40+ years of a wonderful relationship I was able to know (for the most part) and meet his needs in a loving, respectful, honorable way. Thanks Kate for being there!