A Small Glimmer

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/

Dumb Shit

Today during my visit with Gregory I attempted to give him a kiss. As I moved towards him, he said, "No!" So I backed off and then attempted again. This time he swatted me with his hand breaking my glasses.

"You dumb shit," I yelled, "Now look at what you did. I can't believe you were so careless and now my glasses are broken. What are you, some kind of retard? Fool?"

He just looked at me.

"Now I have to take these fucking glasses to be fixed and live without them for a week until I get them back," my anger elevating, "that was so inconsiderate of you and quite thoughtless. You really piss me off, all I wanted was a kiss and now look at what you have done!"

He just looked at me.

No, I didn't really say or think any of the above. The fact that he struck out and inadvertently broke my glasses was just a fact of life. Wasn't his fault. Maybe was my fault. I really wanted a kiss but sometimes his "No" means "Yes" so I tried again. Next time I will be more careful about getting in his range without protecting my glasses.

We just continued our visit as I taped my glasses together, laughing to myself at the image of a nine year old Michael who used to have to tape his glasses together more often than not, and laughing together about something else as I offered him a Tootsie Roll and popped one into his mouth.

Before I left for the day, I asked for a kiss, he leaned in and gave me one and I kissed back. It worked this time.

I also got to thinking about what I would have said if Gregory had broken them for me some 15 or 20 years ago. I probably would have been angry and read him the riot act. Or maybe not. But it makes me feel bad to think that we have had to get to this point for me to so calm about things, not to blame, to take things in stride. What really matters in life and in love is respect, understanding, compassion, and a few other descriptors.

I sure do love that man, even if I have to see him through my broken glasses.

Love and Commitment

Taken from: http://www.dailyom.com 
Emphasis is mine.

February 16, 2015
The Journey of Commitment
Entering into Commitment

by Madisyn Taylor

Loving and committing to another person is a spiritual process whether it involves a wedding or any other type of commitment ceremony. Often when we enter into a relationship, we allow our emotions to lead us forward without thinking more deeply about what true commitment involves. 

If we can understand that sharing our lives with another person is not just based on love but also on the hard work of being able to compromise and enter into a dialogue with them, then we are much more likely to find the key to having a successful relationship with our partners. 

So many people have not experienced a loving relationship between their own parents and therefore have no role model of what love should feel like or look like.

Many of us have been exposed to the idea that love should be romantic and sweep us off our feet. While this is a natural part of any relationship, the true test of our love comes from our willingness to explore this world with another person; to not only share in the delights that we encounter but also to negotiate the bumps in the road together. 

Generally this often takes the form of a mutual exchange of ideas, but because any relationship is based on the needs and experiences of two people, we might also face a certain amount of misunderstanding. Learning to be open and receptive to our partners and to treat their wants and ideas with respect can help us navigate even the most difficult situations. 

One way to do this is to take a deep breath, holding our partner in a space of love, and allow ourselves to listen fully with our hearts to what they have to say. Should this become difficult to do, we can also turn toward people whose relationships we admire for advice or guidance. Knowing that there are resources out there to help us and being up for exploring them with our partner will only serve to deepen and strengthen our relationship.

Entering into a committed relationship is in fact a spiritual journey that we undertake with another person. By being able to love and care for someone else with an open heart, we will find that we can reach a greater level of personal transformation, evolving along our path and learning powerful lessons about ourselves that we might not otherwise be able to do on our own.

Respect

Hannah made an interesting comment the other day about my involvement with the residents on Gregory's floor. "You recognize them as people and treat them like they matter." They are and they do. It is often easy to forget this when faced with the effects of Alzheimer's and time.

Sometimes Even One Acknowledgement

This note was sent to me by Gregory's niece Renee, as written and given to her by Gregory's brother Mark.

It is even more meaningful to me considering Senior, as he is known, has had his own bundle of difficulties for two or three years now including the inability to talk due to a Tracheotomy after a major heart attack. 

His wife Diane has done a wonderful job in supporting and honoring him, so I give back the sentiment! I love you Maire family! 

You have never doubted me, my love for Gregory, or our relationship for over 40 years which began in an era that did not understand or respect "Gay." I value that!

In many ways you have been more family to me than family (not wanting to diminish my own family, whom I love dearly.)

Nothing More Debilitating

You may have seen a post or two from Abraham on this BLOG. Finally one that speaks to Alzheimer's (although the subject is adult children) "Nothing more debilitating that to care about something you can't do anything about."

But in some ways you can do something about your loved one with Alzheimer's Disease. You can love them all the more, you can be there for them, you can continue to respect them as a person, you can support them, you can help keep them safe, you can provide them with an appropriate environment, you can augment those skills they loose.

You can live in their world although when first reading this it will make no sense until you experience it yourself and when the person you love is so far in the progression of the disease that living in their world makes sense, is obvious to you, and is really the only thing you have left to do. It took me most of ten years to learn how to live in Gregory's world.

There is really a lot you can do! You just can't change the insidious nature of the disease.

http://www.abraham-hicks.com/lawofattractionsource/index.php

A Visit With Gertrude

While I was observing Gregory in Physical Therapy, I had a chat with Gertrude who was waiting to use the bicycle petals after Gregory. Turns out she is 100 years old, which was confirmed when I looked at the PT associate bemusedly for confirmation.

Margaret was at least as alert as you and I, well groomed, friendly and chatty. He husband had died some twelve years previously with an added, "I miss him but what can you do when you continue to wake up every morning."

She commented on what a handsome gentleman Gregory is and while empathetic did not feel the need to go on about how young to have Alzheimer's. "So sorry for both of you. It is what it is, I guess," she said warmly.

I told her we have been "partners" for over 39 years (still searching for the best descriptor since I am uncomfortable with "husband" because it implies sex types and roles. We are not husband and wife.)

She lit up and shared that she had her husband for some 75 years. We commiserated how difficult it is loosing the one you love (her's quickly, mine over the last ten years.)

Maybe it is because I came out Gay during the 1950's, and have lived a large part of my life through a time when being Gay was wrong, a sin, looked down on, punished, shunned, minimally - not recognized, etc; that I am still amazed when being Gay and having a life mate is taken as a mute issue.

The love of 39 years is what is recognized. My sacrifices is what is recognized. Our love for each other is what is recognized. My role in making all medical and health and life decisions for Gregory, as his husband - mate - lover - life partner - wife - soul mate - etc, is what is recognized and respected by family, friends, and everyone we have come in contact with at The Lieberman Center.

It was so refreshing and wonderful and life reaffirming to chat with Gertrude.

Parenthesis

parenthesis |pəˈrenTHəsis|noun ( pl. parentheses |-ˌsēz| ) a word, clause, or sentence inserted as an explanation or afterthought into a passage that is grammatically complete without it, in writing usually marked off by curved brackets, dashes, or commas. 

Gregory has become a parenthesis.

Several years ago, when Aaron (a doctoral candidate to whom we were introduced by our massage therapist Sarah, and whose research we became part of) got to know us, he commented that he was impressed that we still functioned as a "couple." That we were in a relationship that still functioned even though Gregory's Alzheimer's was slowly changing the face of that relationship. 

More accurately, I guess that I would say we functioned with RESPECT for each other. Even though I was "in charge," handled all of our finances, made all of our decisions, took care of all the details, etc; I tried to make sure that Gregory was part of and informed of all the things I was doing. Gregory in turn deferred to me and accepted, with faith in me, my new role.

Slowly, however, he needs to be less part of the decision making process. For example in the beginning he would decide what to order from the menu when we ate out. When he couldn't decide what to order, I began to offer suggestions off the menu. Eventually I narrowed it down to: "Do you want beef or chicken?" Now I just order for him. He is always pleased with my selections and often will reply with, "Oh goodie. This looks really good."

At this point in our relationship, I make all of the decisions in our life. I let Gregory know about activities the day before and again on the day of, but usually do not go into much detail or give too much advance notice because he only forgets or gets agitated about not being able to remember what I told him. This leads to a usually failed guessing game on my part.

I often do not ask his advice because even if he has some, he is unable to communicate it. Now-a-days it sounds more like this. Instead of "What color do you think we should paint the hall?" it is "I was thinking of paining the hall the same shade of white." He will agree. Instead of "When do you want to go visit your family?" it comes out "I think we will go to Michigan to visit your family soon." He will agree. Instead of "Do you want to go to the movies?" it is "We are going to see Batman." 

I still work hard at treating Gregory with respect but the face of it has changed. Here is something I just recently noticed. In the past, I would sign a letter, or birthday card, or e-mail: Love, Gregory and Michael. Based on social convention, the person doing the writing always puts their name last.

Then I began to sign them: Michael and Gregory. Now I have begun to sign some of them: Michael (and Gregory.) I guess I have moved to this format to show that it is a communication from me, not necessary discussed with or part of a decision with Gregory. If I know that Gregory would also send love or a greeting if he could, I leave out the parenthesis: Michael and Gregory.

Interesting. It seems that Gregory has become a parenthesis, inserted as an explanation or afterthought into a passage that is grammatically complete without it. A somewhat fitting description of what our relationship has become.

Joyful Heart

Noticed that recently I have been in a good place. Not sure if Gregory has plateaued for the time being or if I have. I have been calm, patient, understanding, respectful. I have felt peaceful at a 9.5 out of 10 level. It feels good to feel good. Few if any apologies necessary, little if any guilt, lots if even abundant amounts of love.

Why? On one hand don't question or analyze the feelings just enjoy them. On the other hand look, learn, and grow.

Maybe things feel good because of how well our "Nobel Experiment" is working with Ken, Gregory's companion, living with us and while not needed all the time, being available 24/7.

Maybe Gregory is at a new plateau and we have learned how to deal with and accept the new challenges.

Maybe I have grown and continue to do so with the progress of my meditation and yoga classes with Corinne.

Maybe it is SPRING and the warmer weather and smell of tulips and hyacinths in the flower market air.

Maybe it is because of the renewed flow of creativity with my new endeavor at The Galleria, belonging to an artist collective, having a space in which to sell the results of my creativity, having fun with marketing and signage and display.

Whatever the reason, it feels good.

A Technique

These ideas are taken from The Diamond Cutter: The Buddha on Managing your Business and Your Life by Geshe Michael Roach and Lama Christie McNally. Yes another "self help" book. But the concepts discussed within have made sense and have been working for me. The book was recommended by my nephew Mark and I appreciate him for it.

One meditative activity the book talks about is called "Setting the Day with Silent Time." This is my version of setting the day. It actually starts the night before as you are going to sleep by thinking about the best three things you did or said or thought during that day. Then think of the three worst things and forgive yourself. Think ahead to your first waking thoughts and remind yourself to "set the day."

After you have woken up and taken care of your bodily needs, washed your face, etc, go to a quiet place in your home, sit comfortably and concentrate on your breathing. In. Out. In. Out. Deep breaths. Try to count ten of them without allowing yourself to be distracted. If you get distracted try concentrating on the next ten without distraction. It will get easier. If you would like, then try thinking about NOTHING. I continue to concentrate on my breathing but with less focus. Next think about one of the problems you are facing and think about how you might approach it differently then you have in the past. Picture the problem dissolving as you take this different approach.

For me, I have been working on being supportive and loving while in the midst the "CRAZINESS" of Gregory and my interactions which are usually informed and interpreted by his Alzheimer's. My remaining calm, clear, and helpful with a loving supportive voice that is respectful but also helpful and that does not treat him like a child or like less of a person is quite a feat and one that I am not as good at as I would like to be. PATIENCE! in other words.

So I have started "Setting the Day" with a brief meditation and then picturing how I want to behave in the above described situations. I picture myself being calm, helpful, loving, respectful, even voiced. And guess what. Today after a week or so, I began seeing results. It feels good and I am able to stay out of the "bad interaction, anger, guilt, apology" cycle and around and around. Now I will meditate and picture my being able to be automatic MOST of the time as well as forgiving myself when I am not SOME of the time.

Does any of this make sense to you? Try it. Buy the book. Read it.

Conversations

Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.

This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.

I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.

But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.

Its the little things...

It is the little things that do matter in helping to keep Gregory active, involved, respected, and loved. Letting him help as often as possible, even in little ways, helps give him purpose and the sense of sharing our daily life. It helps him to depend on me more when he knows I continue to depend on him. Always acknowledging my appreciation and saying "Thank You" even though I am thanking him about the same things each day and sometimes several times a day, gives feelings of love. Keeping an eye on what he still can do ... at least do today, and letting him do it, allows him to keep his self respect. Not correcting but rather "walking behind and fixing" is also helpful. Telling him "I love you" many times a day, touching his face or back, planting a kiss, all tell him that I am here and will be here to support him.

Grace

In response to yesterday's post, Lynn commented: "Sometimes the greatest victory is getting through your day with some level of grace, regardless of what is actually accomplished."


Yes Lynn, I agree that one always needs to keep an eye on "Grace." However, sometimes the problem is not a question of "getting things accomplished" but rather "getting through the craziness that is Alzheimer's." 


Metaphorically, the person with Alzheimer's is not "running on all cylinders" so they don't notice how they are running. The caregiver is running on all cylinders and sometimes therefore, the emotions kick in before the intellect. This causes interactions in which love, respect, kindness, patience, understanding, etc suffer.


Then Grace takes the form of apology. I believe the key, as you say Lynn, is "SOME LEVEL" of grace. One cannot always be perfect, even though we try : •)

Why is it?

Why is it that I still have expectatons? Why is it that I still think he can learn? Why is it that I am surprised when he doesn't make connections? Why is it that I still ask him to do things to help me? Why is it that I still reason with him. Why is it that I still discuss things with him? Why is it that I still get angry and frustrated with him?

I guess because it is a measure of my respect for the person he was and is. Should I treat him like an idiot? Should I treat him like a child? Should I treat him as though he doesn't exist, or matter, or have emotions? I don't think I could do that.

So I just have to remind myself that when he doesn't meet my expectations, when he can't learn, when he can't make connections, when he can't help, when he can't be reasoned with ... I need to not get angry or frustrated ... just be patient and compassionate. The choice is mine.

Write Don't Talk! Or At Least Speak Plainly and Simply

These are a few wonderful tips from an article in the Blue Cross Blue Shield newsletter. We rely on speech so strongly that when a person with Alzheimer's is unable to use language times get rough. A suggestions for people with advanced dementia is to write a simple, brief note using large letters to communicate. Have the person read the note and see the response.

Also creating a "Memory Book" with pictures of family helps to unlock stored memories that a person with Alzheimer's just can't get out in a chat. It's not that the person has forgotten, they just need help with remembering. Creating a book with commonly needed objects or activities is another way to communicate.

Neither of these techniques are necessary yet with us but they are good to keep in mind. With Gregory, I have found that simple sentences, spoken slowly (but not insultingly,) after I have Gregory's attention usually do the job. One or two ideas at a time is the most he can handle when I ask him to do something.

I have made signs to help him remember including: 1) by the table near the front door where we keep our pocket stuff - FOR YOUR POCKET - wallet, keys, cell phone, Chapstick, etc. 2) On a shelf in the closet by the front door is a list: COAT, SCARF, GLOVES, EARMUFFS? 3) On the inside of one of the kitchen cabinets is a sign with a column for each day of the week and pictures of what to have for breakfast on each day. This helps Gregory alternate cereals, sausage or fish, toast or muffin. Sometimes I will write a simple note on a POST-IT and hang it on his bathroom mirror, paste it to this bedside table, or stick it to his breakfast tray.

Today these techniques work, tomorrow they may not so we will develop new ones. One day at a time!!!

The Hats I Wear: Part 1

When we visit the doctor, I wear all of the hats that are needed. Gregory and I have always been open with each other (Gregory now a days as much as his language allows him to be.) While I have told a few white lies or selectively forgotten to inform him of something, we always discuss everything about our situation and I include him in all decisions if only to tell him "I have decided..." 

I keep anecdotal notes and print them out when we go to the doctor. I do most of the talking and let Gregory join in when he attempts to do so. Our doctors treat him with respect and always begin by addressing their questions directly to Gregory knowing I will "chime in" as necessary. When I am having to talk to the doctor about difficult issues (dealing with Gregory Alzheimer's and its progression) I will often appologize to Gregory for talking about him as if he wasn't there. At the point when I need to talk about issues that I do not want Gregory to know about, to help preserve his happy bliss, I will call the doctor ahead of time and discuss the issues privately. 

Gregory continues to accept my support graciously and to trust himself and his care to me. In fact he trusts me unconditionally (may it last forever) with his life.