No Apologies Necessary

Kate Swaffer shares some of her thoughts, memories, and fears on being diagnosed with Dementia. The video she created is moving and will help put you in her shoes.
http://kateswaffer.com/2015/09/03/women-and-dementia-3-dam2015-day-3/

This is the reply I wrote to her:

Dear Kate,

I wish I could take all your pain, your fears, your guilt and smooth the edges. I wish I could help you focus only on the strength of your love for those around you and for all of us who have come to know you.

I wish I could help you focus only on your family's and our love for you. I want to say, "We love you as you are and as you will be. You have given us so much with your perspective and your love, let us give some measure of peace of mind back to you in exchange." 

I am barely able to type this for the tears from your video as they help me to begin to understand what Gregory must have gone through but was unable to share with me. His inability to share was due to his loss of language.

Also, I believe that the Dementia/Alzheimer’s blessedly put up a buffer to the reality of what he was going through. In addition, the safe zone in every day living which I was able to create for him gave him peace. 

So I love  him with all my heart, more each day, and say it was and  is my duty to be there for him as he always, even today, has been for me. He is not a failure, he owes no apologies, he is love. He is my life.

I have no control over the details so I will embrace him always as he is, as he will become. I love him More Than Ever (the name we together gave our trust and educational foundation.)

Gregory knows, and I often tell him, how much I love him and I hope he knows that there is nothing in our relationship, in our 40 years together, in the world that he needs to apologize or feel guilty about. 

I also know he has forgiven me my trespasses and I do not feel guilty. There are some things I would have done differently during our journey with Dementia/ Alzheimer's but I did the best I could, and everyday I learned anew, and I did it with love in my heart.

My “Intuitive" described the hole that has been torn out of my chest, around my heart; with its pain and loneliness and tears; as the sacred place where Gregory and I can still be, and always will be. together. I will not try to fill that hole, I welcome it. 

Kate, may you find peace and comfort in your great love of family and of life and may you be reminded that all things are impermanent and this can be the joy of life as you quietly sit with it today and then tomorrow. I don't "know" you Kate, but I continue to come to fall in love you!

Fondly,

Michael

Coffee With A New Friend

Today I had a coffee with a friend who is facing Alzheimer's withF her father. In the beginning, most of us go through this alone until it is time to reach out or until it gets so bad that it feels beyond our comprehension and/or control.

So I was happy to be able to be a good listener and to offer some advice, free for the taking. I think just having someone to talk to is helpful if only to hear yourself admit what you already are thinking, what you already know, what you fear.

A big part of my advice was that in many ways fear has no place in dealing with Alzheimer's. It isn't productive, it doesn't solve any of the problems that will arise, and very often many of the things you could have allowed yourself to fear DO NOT HAPPEN. 

How does one overcome fear? I don't know how I did it, but in some ways having confidence in myself, enlisting the moral support of family and friends, looking at my successes, being grateful for the good stuff still left, trying not to feel perfect and by not feeling too guilty when I wasn't ... and by deep, deep breathing.

I found meditation helpful in letting me "escape from myself and my voices" so I could hear the comforting words of the universe sooth me. I knew a lot about meditation (or thought I did) and just berated myself for not just "locking myself in my darkened closet and doing it!" 

One day my massage therapist introduced me to a woman who she felt would do me some good. I signed up with this woman for meditation classes, previously not having realized that one needs to be taught how to meditate, that in fact part of the practice of meditation requires one to HAVE A TEACHER to support and guide you. What I learned with Corinne, in many ways, has saved my life -  or at least given me a more peaceful one!

Even though each of us on the giving side of Alzheimer's and those on the receiving side of Alzheimer's (read any type of dementia,) go through this insidious disease in a way that is as unique as the individual personalities involved, there are many things which we have in common: dealing with fear, the unknown, disbelief, unwanted and unexpected change, difficult often unilateral decisions, somehow getting through this to the other side - whether it be in this life or the next.

In an e-mail that my friend sent thanking me for my time today, I replied:

You are very welcome! As I said, it will get worse but it will get better. You will run into obstacles you cannot foresee but the solutions will find you. You know in your deepest heart what you want for you dad and you will be able to do it as the time comes.

With your dad's "aggressiveness" you may run into complications but I understand him to not be physically violent. There are drugs to help with this. Most places will want to do an evaluation of your dad before making any commitments. 

Something else I did not mention is that there is no such thing as telling a lie when it comes to Alzheimer's. Any reply, true or false, is meant to pacify the person with dementia ... truth does not matter. Believe me I have learned to "lie" to Gregory. But then again, what is a lie? An embelishment? An exageration? A half truth? An omission? Someone else's point of view? NO ONE IS JUDGING.

A "visiting friend from college" can really be the psychologist who is observing and prescribing. The "car breaking down and not being able to afford a new one" can easily help solve the problem of a person dealing with no longer being able to drive.

When Gregory gets upset or depressed or angry and is unable to explain why, I go into my "Everything is OK. I have taken care of everything. You have nothing to worry about. You just have to be happy. I have lined everything up that needs to happen. It is all taken care of. No need to worry. I love you. You love me." MANTRA. And guess what, Gregory is able to calm down. I had no idea what was bothering him and he doesn't know that but he trusts that I have taken care of everything, and even not knowing what it was, I probably have! That's what comes with loving someone for over 39 years!

Good Advice, Late in Coming & Easier Said ...

I subscribe to a number of memory care facilities e-mail blasts and on line support. (I am in the process of un-subscribing to many of them as they have become irrelevant.)

The following came in today and it did make me feel a little guilty. If I had read this prior to Gregory's psychotic episode would I have acted differently? Was I too demanding of Gregory with expectations for self-help set too high for his abilities? 

But guilt aside, I don't think so if only because most often he would figure out what to do without my help allowing him to maintain a sense of independence. Also, the incidence of his getting overwhelmed and upset and out of touch had increased exponentially over his last few weeks at home. He needed constant care and attention and often refused that care and attention.

However, it does make one think... It also makes it seem easier than it sounds.

Does your loved one ever seem to "lose it" over nothing? Overreactions to otherwise ordinary requests or events -- crying, cursing, pacing, or lashing out physically or verbally -- are called "catastrophic reactions." They can befall anyone with dementia and can be upsetting, even frightening, to a caregiver. One common cause: too many competing stimuli. If a room is noisy and the person is feeling rushed or is dealing with other strong emotions (embarrassment, frustration), and then tension spills into an argument, the result can be assorted behaviors that overwhelm the person and his or her ability to react more typically. Hard as it may be for you to stay calm, it really helps. If you can guess the trigger, remove it: Change the subject, change the activity, turn off the radio. If the person is particularly worked up and it's safe to leave him or her alone for a bit, do so. When things seem slightly calmer, forget it happened and then distract your loved one with a favorite activity or snack.

And then to end of a frightening note, I was talking to the husband of the daughter of my step Aunt Elaine. He is a rabbi and shared that in his congregation, a woman with Alzheimer's stabbed her husband to death with a kitchen knife, thinking he was an intruder in their home. Not to lighten the horror of it, how do you follow that one with a favorite activity or snack.

Horoscopes and Breakdowns

June 17, 2013

1. 
   

Aries (3/21-4/19)

No one -- not even you -- can be selfless and generous all the time! It's okay to mix a few selfish acts in with your good deeds today. Don't do anything too egomaniacal -- just put yourself first a few times when you usually wouldn't. This isn't an excuse to forget your manners -- you should still hold the door for old ladies, and say 'please' and 'thank you' -- but it is a reminder that you need to treat yourself like the star you are a little bit more often.

• • • • •

While it is hard to say this horoscope is meant for me alone (how many people in the world were born between March 21 and April 19?) it does apply.

Last night I cried myself to sleep wondering how I look to the rest of the world. Strong? Together? Even? Supportive? Loving? Giving? While recognizing those adjectives as part of who I am, I was not feeling them. I was sad, lonely, and feeling devastated as I walk along with Gregory and his Alzheimer's - every morning, every day, every night.

I don’t expect you to comprehend this life we’ve been forced to lead; however, I do expect and need your understanding. I want to be treated as normally as possible with the knowledge that my life has been turned upside down. The love of my life is dying before my very eyes. Each day he dies a little more. I’m in a continuous state of grief. It is like having a funeral every day of my life. I try to spare you my pain, but it’s there. If our lifestyle appears to be the same to you, I’m doing a good job of camouflage. I do what I do for Gregory, for myself, and for you.  

Michael Horvich (2006)

No one really to turn to in the hopes of making "it" go away. The Alzheimer's? The feelings? The tears? Last night, I just needed to cry, to howl. I needed someone with whom could cry but not someone who would try to comfort me for there is no comforting in dealing with this INSIDIOUS disease.

In some ways, even with loving family and friends, there is no one there for me since the only one who truly matters is Gregory, my life and soul mate of 35+ years, and he is less and less available. To himself? To me?

He seems content, happy, loved. He bumbles along day to day in a good mood, laughing at his inabilities. When I am at my grumpiest, he forgives me or lets me know that my role on the path is a difficult one. He appreciates me, he loves me.

So last night through my tears I heard a voice in my head say, "Tomorrow you die." No not death, but another part of my life gone as I re-evaluate Gregory's needs and try to accommodate them. Accommodate them not in what I consider my recently, once again gruff, impatient, angry way but only with patience and love.

Instead of treating him like an invalid, which I have been avoiding although sometimes without the use of language that is all that is left, I will be there to assist him for what might be or feel like 24/7. 

For example when I tell him at bedtime that it is time to brush his teeth, I usually go about the own business of closing up the house and getting the cats and myself ready for bed. Now I will wait to help him find his toothbrush (if he can't this time) and put the toothpaste on the toothbrush (if he can't this time) and run just a little water on the toothbrush to wet it (if he can't this time) and then make sure he knows how to get it into his mouth to begin brushing (if he can't this time) and when he is completely, and successfully brushing his teeth, I'll look back to my own needs.

And so tomorrow I die.

This process is the same for almost every life skill that Gregory attempts. Recently, at bedtime, he had on his shorts but not T-shirt (which I always put in the bathroom and announce, "Your night clothes are in the bathroom.") Having come into the bedroom without his T-shirt, he no longer knew where it was or even that he needed the shirt ... just that something is wrong. 

Another time, when he was getting his night shorts and shirt on, I come back into the room to find him with his feet through the arm holes of his T-shirt trying to pull the body of the shirt up around his bottom.

After my having taken the time to get his "stuff" and putting it in the bathroom for him and letting him know where the "stuff" is, you can see why I get a little frustrated (angry?) that even with all my help, it isn't working! And not only the anger but also the fear and worry about what the future will bring (although I try so hard not to worry about the future since I really cannot control it.) "Don't worry about those things you can control and don't worry about those things you cannot!" A Buddhist saying.

Having to do EVERYTHING for us, you can see how easily it is to fall into the frustrated, angry, gruff, impatient, fearful mode. 

With Ken, Gregory's companion living with us since April, my life has been a bit easier. But Ken will be leaving at the end of June to go back to Japan and then return to Vanderbilt University to begin his Master's Degree. So last night, I was also grieving not only Gregory but also our loss when we send Ken on his way. We have come to love that man with his gentle, loving, respectful, helpful ways!

So tomorrow I die but know that somehow I will survive. In last night's grief then, I realized that the next step has to be follow through, follow through, follow through. Not on Gregory's part because he is no longer able, but on mine. 

When I hand him his vitamins and medications I will wait there until he knows how to begin taking them. When I tell him to "fill your pockets" with wallet, keys etc, I will wait there until he begins doing so (and I will double check after while that he got everything he needed.) I will no longer ask him to wait in the car when I have to run into the drug store for a quick purchase, I will have him come with me. Recently he got out of the car and came into the store looking for me.

These activities and follow throughs will be difficult for me and I will have to learn how to attend with patience and love but they are a necessary next step. And like other "next steps" once I have mastered the step, I feel better able to cope, am less angry, less frustrated. 

The additional energy I have to spend in support of Gregory's daily needs is made up for by the less emotional energy I have to spend on anger, frustration, fear, guilt, etc etc etc. So tomorrow I die, but I am also reborn and continue on the path.

• • • • •

From the New York Daily News, January 1, 2013:

1. Year ahead: This is a year of personal transformation, and a time when you will feel compelled to review, reassess and restructure your life on many levels. At some stage you can feel cut off from the support you have become used to having and forced to be more self-sufficient, particularly on a monetary level. The role other people play in your life will be highlighted with you realizing their contribution to your life and you in theirs. Your home life takes on a greater level of importance, and you will desire to settle down on a more permanent basis and have more stability and security in your life. Personal growth: Over this year, your world view will continue to expand with you letting go of prejudices you once had and replace them with a broader more accepting view of yourself as well as those you come in contact with. Romantic month: Jupiter the planet of expansion enters your solar fourth House of home and family on June 26th, and stays there until July 2014, a period where you can make favorable changes in your personal life. Power month: March, a positive change in your career can move forward and a personal situation gains momentum to move to the next phase. Your annual new Moon is April tenth, which is the commencement of your next solar cycle. Angel advice: The structure of your life, as well as your values and beliefs, will be challenged this year. As you question the meaning of life and how purposeful your life is, it is important to be open to change and see any forced or unexpected changes in your life as the universe’s way of steering you back on the path you are destined to walk.
2. Love, family, friendship: With Jupiter shining its beneficial rays on your personal life from midyear, your focus will be on family and your home environment. The full Moon three months beforehand on March 27th, can provide the energy to be the catalyst to jolt a relationship into reality with a purposeful decision being made, even though plans may not eventuate until later in the year around July or August. There is very much an essence of fate around your love life this year, if it is meant to be there is nothing you can do to stop love from capturing your heart. It can sneak up on you and all of a sudden your life can be different from what it has ever been. Setting up home so you have comfortable surroundings for you and your family will also be high priority this year. You will be conscious of developing healthy bonds with family members and adhere to a schedule of regular contact to stay closely connected with those you love. Friends can suddenly leave your life, for no other reason than you are travelling on different journeys as you seek where you fit within the big picture of life. The first half of the year can present situations you feel impatient about. The second half sees you more relaxed and satisfied as you have a vision of where your life is heading, and although there are compromises to make, you will feel what you give is well worth what you receive in return.
3. Career, money, purpose: It is no longer an option for you to go through the paces at work. Over this very important phase with transformational planet Pluto in your solar tenth House of work and purpose right through to the end of 2024, you will strive to make a positive and substantial contribution to the world through your career and business dealings. You now need your career to be more meaningful and to achieve this, some of you will change your career, and others will put more focus on aligning your work with your overall goal of excelling at what you do. Your ambition will be heightened over this period; however, be careful you aren’t too impulsive about changing your path, as a rash move can cause setbacks. It is advisable to think through all the pros and cons of a new endeavor to ensure it is what you truly want to do on a long-term basis before you put action to your thoughts. Ethics and the way you morally handle your business also come into play and at all times it will be best to take the high road, regardless of the actions of others. At the end of December 2012 a fortunate transit occurred with your professional life that can provide a financial bonus. The ongoing challenging squares between planet of sudden changes Uranus and power planet Pluto affecting your career life continue through to early 2015, with two direct degree hits this year on May 21st and November first. If you have not made a considerable change to live a life of purpose by November, a fateful event is very likely. Destiny will take matters out of your hands and place you where you should be. This is a transformational year on many levels, which promises to be eventful to say the least.

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.

HINT FICTION: Where to Hide?

Hint Fiction is a story of 25 words or fewer that suggests a larger, more complex story. I have been adding this type of writing to my BLOG  michael a. horvich writes for a while. Tonight a Hint Fiction was motivated by a dinner experience with Gregory so it rightfully belongs here. Hint Fiction can go everywhere I guess.



Where to Hide?

Nowhere to hide. It came out in a punishing sort of way. It caused two-sided tears. Instruct the jury to ignore the previous statement. Can't.