Faith III: Fear

I have posted here before about the concept of "Faith." I have found my views reflected and strengthened and improved by the book: Faith: Trusting Your Own Deepest Experience, by Sharon Salzburg.

This is my paraphrasing of what Sharon went through when someone she cared deeply for was dying. It reflects what I slowly learned during the twelve years Gregory and I walked the Dementia// Alzheimer's path. It reflects what I finally knew to be true and held my faith in during the four days during which Gregory was preparing to die.

• • •

If we absolutely insist that things work out only as we want them to, our  hopes become strategies to avoid facing what is, then we have nothing on which to base either effective action or real peace of mind. We're in the hope/fear dilemma.

What one really wants is that the person dying not feel alone, that he feel sheltered and held, that benevolence surrounds him, that he feel loved. This has nothing to do with demanding a specific outcome.

The person is going into the unknown, into a realm none of us can control. That is hard to accept. We cannot go there with him and we cannot really find out what that realm is all about. We feel fear for the person and we feel fear for ourselves.

When one sits side by side with fear and acknowledges it, one can befriend oneself despite the fear and one's heart begins to open.

One is able to meet the unknown without a plan for controlling something that is not within one's power to control. With fear no longer dominating the mind, love can rise freely.

The power of love doesn't shatter in the face of change or disintigrate in the face of ones's own terror of lack of control. One is able to enter into the mystery.

One can hold onto one's faith in oneself, and faith in the person leaving. Faith allows one to relax into the vast space of not knowing.

One feels sorrow but one remembers that life is bigger than its constantly, sometimes drastically, changing circumstances. This is the power of letting go in the face of unexpected changes and doing so with love and peace of mind.

Faith enables us, despite our fear, to get as close as possible to the truth of the present moment, so that we can offer our hearts fully to it, with integrity.

We might hope and plan and arrange and try, but faith enables us to be fully engaged while also realizing that we are not in control, and that no strategy can ever put us in control, of the unfolding of events.

Faith gives us a willingness to engage life, which means the unknown, and not to shrink back from it.

To have courage, just as to have faith, is to be full of heart. With courage we openly acknowledge what we can't control, make wise choices about what we can affect, and move forward into the uncultivated terrain of the next moment.

Experiencing Gregory's death with faith instead of fear meant experiencing him fully as he was and as he continued to change and when he finally left me. It meant that even though there was little I could do, I could continue loving him and to stay connected to him.

For many years I continued to love him in ways not based on language skills, mobility, or even his staying alive. The closeness, the understanding, the devotion of love did not diminish in my letting go of expectations.

By revealing the grace of connection with qualifications, no matter what is happening, love releases us from our efforts to control life and strengthens our ability to just love and to be loved.

Release

Gregory is released. He would always say of someone who died, "They have found their way out. We are still looking for ours." I am released as well in some ways but will begin looking again, hopefully for several more years, for my way out. May I be as comfortable and gracious as Gregory was in finding his.

Last night I gave in to my emotions. Took about fifteen minutes of trying to hold it back until I finally let it rip. My God-Son Isaac came to my bedroom door and gently knocked. We held each other and cried. I carried on for maybe thirty minutes more.

Crying serves no purpose other than to make you feel better! What I mean is that I could settle down again and carry on but Gregory is still dead. When my mom and dad passed, I used to tease my sister by asking, "Is mom still dead?" "Is dad still dead?" The teasing helped lighten the time and we were able to respond to the word "Dead." It is so final!!!

I washed my face, went back to bed, and although the sad cloud that follows me and sometimes makes my eyes rain was there with me, Gregory as my umbrella helped me to have a good night sleep.

Today is Ash Friday. I mean that today I pick up Gregory's ashes from the Cremation Society of Illinois. Brook, our funeral director, has been so helpful and calming and supportive. If one has to go through this, and one does, she made it bearable.

But I am a little afraid of the reality and finality of having "Gregory in a Box" with me again. It will certainly slap (or hug) me with the reality that I will never see him again except in photographs and in my memory. I will never be able to hold his hand, hug him, kiss his lips.

The reality and finality of it makes me feel empty instead of full (which is what I want to be feeling considering what a wonderful full live we had together,) sad instead of the "happy" (which I have been extolling since his death,) and lost instead of ready to find my next chapter.

This too shall pass. And I will continue to ache but it will slowly be replaced with renewed love and loving memories. And I will search for and begin and enjoy the next chapter of my life. And I will cry and I will laugh. And I will find my way out in time.

Kate

Extremely moving post by friend Kate:

http://kateswaffer.com/2015/09/06/women-families-and-dementia-dam2015-day-6/#respond

Here is my reply:

Kate,

Often people will say, "I know exactly what you mean!" and it rings so false and so placating. However, again with tears blurring my view, I know so well almost everything you have discussed in this post. In some ways nothing I can say will lessen the impact and intense sadness you discuss.

Changes in relationships, socialization,  sex, movies, TV etc are the easy ones to overcome. Being the one who could still change while the other can no longer, is somewhat less easy but still OK. The slow disappearance of the person you love most in the world is the painful one.

For a long time I softened the concept of "carer" by calling Gregory and me a "Caregiving Team." I used to say to others (not expressing but feeling anger) I WASN'T a caregiver; I was a partner, a friend, a soul-mate, a lover, a spouse - and caring is what you do when you love someone.

While sometimes it was hard to separate the anger from its cause, I always knew it wasn't with Gregory that I was angry.

Fear? Yes. Worry? Yes. My own frustration and confusion? Yes.

Eventually I did become the care giver and now with the Lieberman Center Memory Care Facility in the picture I have become the secondary caregiver but I have won back quality, wonderful time together with Gregory.

It has been a difficult journey but I chose freely to walk beside Gregory on his path and somehow the love wins out, gives extra strength, helps us find the way, stifles the fear and worry, and keeps us going for those we love. It has for Gregory and I as it will for you and BUB and your family.

Fondly,
Michael

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

Manifesto For Radical Inclusion

There is a growing awareness and increased discussion about the inclusion and treatment and stigmatizing of people with Dementia/Alzheimer's. I agree with the move in general but think I have a way to go to fully understand its parameters and/or to embrace it fully. But I am working on it! I am working on it.

As an elementary school teacher I was always sensitive to establishing reading groups according to ability. In fact I adopted an approach which used popular children's literature as the vehicle for teaching reading (instead of the "Basal Reader") and let the students select which book group they wanted to be in based on story content/topic.

If the reading level was way beyond their skills, I would advise the student as well as the parents of the disparity but if all parties, me included, were willing to take the risk and to work extra hard, the student could have the chance to read a "too difficult" book as long as they were able to keep up with the group assignments (which could be tailored) and discussions. The program was successful in most cases. Sometimes a student would request a different book after trying and would feel successful for having tried, not feel a failure for having to change groups.

When I taught, identifying student needs by name was constantly changing. It was a standing joke, "I wonder what they'll call it this year?" For example: on the teacher side it moved, not necessarily in this order, from Speech Therapist, to Speech Teacher, to Speech Pathologist, to Speech Impaired Instructor, and more.

In New York City, I worked with "Retarded Children" at an organization called AHRC, Association for the Help of Retarded Children. Many years later, a new neighbor put me in my place at her dinner table when I replied, "Retarded Children," after being asked, "What level of students did you work with?" 

She explained her crusade, having a child diagnosed with Downs Syndrome, to get people used to "Child First" language. So drop the "Retarded" put "Child First" then use a more agreeable, less stigmatized name like "Developmentally Disabled." So now I can do it easily but in the beginning I had to think about, and stumble over changing from "I taught Retarded Children." to "I taught Children with Developmental Disabilities."

I hope that by now AHRC has changed its name!

But this concept of full inclusion for people diagnosed with Dementia/Alzheimer's has been upsetting my thinking. I am working on trying to understand how that might be possible. And I am glad that my thinking is upset as that means I am pushing past my comfort zone. But I am not sure where I will end up or what I might've to say in the end about "Full Inclusion."

In the beginning, after the diagnosis, we continued living our life as "normal." But the definition of normalcy started changing and before I knew it, and as he advanced with the effects and changes in his brain, thinking, processing, cognition, language etc I realized that my "normal" was very different from his "normal."

I was very happy to live with his "normal" when I could understood it (not always easy) and when it was not moving so fast that I could keep track of it. But often his "normal" was not safe, not healthy for him, not in his best interests, not possible and often he did not even know what "normal" was and wasn't able to express it for himself.

I never to this day lost my ability to love him, to respect him, to take his feelings into mind but sometimes it did get to the child like: "Because I am the parent and your are the child." I never said this but it did mirror those type of interactions.

With Gregory, as he slowly lost his abilities and needed more and more support, it was not possible to fully include him in all activities. We continued going to the Opera, or theater, or entertained at home or went out to restaurants with friends or traveled in the U.S. or Europe or Mexico. But slowly the inclusions had to change.

Often it would take longer and longer for him to recover from an active party so I would be more understanding and expect less of him. On vacations, sometimes of a month's duration, Gregory would be active, energized, and happily enjoying his time during the vacation but when we came home "reentry to routine" would become more and more difficult and confusing for him as well as for my knowing how to handle his needs.

Gregory was not aware of many of the details of his changes so I had to be the decision maker. I did it with respect, good judgement, keeping him in mind. I always made decisions after talking to him about it, sharing what I thought were the pros and cons, and helping him understand my thinking. But in reality I was the ones making the decisions, not him. Luckily he deferred to me and knew I had his best interests in mind.

A friend of ours noted that even with Gregory's reduced abilities, I always thought of us as a couple: we decided, we will do this, we will do that, what we have decided is...

I had to decide that he could no longer drive the car, I had to decide when we needed to employ a "Companion" to go on walks with him or to spend the day keeping him company when I could not be home. I decided that thriller or violent movies or ones with too much action were not good for him so neither of us watched those types. Eventually I decided what he would order at the restaurant because the choosing was causing him discomfort. I made decisions easily if only because I know him so well.

When, as the result of Dementia/Alzheimer's, a person can no longer take a realistic view of their world, of their abilities, of their perceptions of things ... how can you go for "Full Inclusion?" When he can no longer write, why include him in a writer's group? When he can no longer paint, try easier painting methods, eventually move to finger painting, but when even that doesn't work, I do not think including him in a painting group is a good idea.

Gregory went through the above changes in ability with my being able to support him and be creative about our approach. He is now unable to do most things, especially he cannot initiate things by himself. So instead of "Full Inclusion" I am happy to find a "Reduced Inclusion" type of activity that he can still enjoy, even if I do all the work for him.

With Gregory's language so far gone that he cannot discuss his needs and cannot even process internally his thoughts or needs, I have decided on anti-psychotic drugs to help keep him contented and happy and not fearful of things like getting his feces/urine soiled pants changed, or from fighting even the most loving sponge bath instead of a fearful water shower. 

The use of drugs is frowned on by many people, and I would never have Gregory "drugged into a stupor" just to keep him quiet or to make him easier for staff to handle. But drugs when administered thoughtfully serves a purpose. He needs to get changed and he needs to get cleaned up so why make him fight through it as opposed to numbing the edge of frightening activities that must be accomplished?

He doesn't have to be happy all the time, and frightening activities should not be forced but for Gregory life is frightening, and I will always be there for him and make sure that I do what I can to make his life easier and more friendly, even if I have to make decisions that might "alter" who he is. In some ways with the Dementia/Alzheimer's at this advanced stage, he is no longer who he was and I am the one who can change my expectations about how he spends his days and what makes sense for him. I know he would trust me and if the tables were turned, he would do the same for me in that same loving caring way!

He is content in his wheel chair, is content on "going for a walk" in the chair around the unit or outside in the garden. He likes to listen to music in the room or on his headphones, he enjoys "South Pacific" the musical on DVD. He likes looking at photos of family and having me read aloud to him, even if he doesn't understand all I read. For Gregory, total inclusion, is living a greatly reduced, expectation from others free, safe and happy (even if drug altered) existence and I am OK with that.

More thinking is necessary but so far this is what I think. "Full Inclusion" is not possible when the disease affecting a person is of the brain, requires thinking, problem solving, discrimination, generalization, cognitive skills, etc etc etc, especially when those skills are no longer available to the person. Is it fair to hold high expectants for a person when mentally those expectations cannot be met.

Earlier in Gregory's diagnosis, when we would run into a stumbling block, like his wanting to read a book but not remembering what he read (which actually was OK - who cared if he didn't) but also not remembering to turn a page or mark the page he was on, or remembering how to use his reading glasses, even with my help, and then getting frustrated over those lacks, I would get to frustrated with him and at myself for not being able to solve his problems. Rather than letting him stew over reading his book, I started reading aloud before bed. This helped. But this is reduced inclusion as far as I can tell.

I would try to explain to friends and family what it was like. Gregory would want me to help him with his reading but he couldn't understand why it wasn't working and couldn't understand my help. "It is," I would explain, "like your son pleading and pleading with you to teach him how to ride a bicycle like the other kids in the neighborhood but not being able to because he was born without arms or legs."

You can pull him in a wagon, you can safely drive him in a seat on your bicycle, you can run along side him on a stylized bicycle of his own ... but you never can really teach him how to ride a bicycle in the way he wants you to!" What can you do but live with your sorrow and try to compensate in other ways. He will never be able to be included fully in a bicycle race with the neighborhood boys no matter how hard you try.

 I'm sure you know I'll be continuing to think about this and sharing my progress here at the BLOG. Come back and visit.

http://changingaging.org/blog/manifesto-for-radical-inclusion/

To Use or Not To Use Drugs

... that seems to be the question recently in a number of readings I have done recently about treating Dementias, like Alzheimer's.

As a noun, a drug is...

(a chemical substance used in the treatment, cure, prevention, or diagnosis of disease or used to otherwise enhance physical or mental well-being) the word does not sound too bad.

As an adjective, drugged is...

(unconscious or in a stupor as a result of taking or being given a drug it sounds horrible) and maybe that is the difference. 

All too often, one hears stories about the overuse of drugs in memory care facilities as a way of "controlling" the residents so they are easier to handle. The stories also talk about the use of these drugs to make the job of Resident Care Associate easier, to prevent situations in which families can sue the facility, and/or to allow for a larger resident to staff ratio and therefore to allow the bottom line of a higher profit for operating expenses.

For the record, I am totally against the use of drugs for any of the above paragraph's reasons. It is inappropriate, inhumane, and disrespectful. This is no way to treat others and I certainly wouldn't want to be treated this way myself.

I agree that there are many other ways to handle Residents "responsive behaviors" by trying to find out and discovering why the Resident is angry, unhappy, resistive etc. 

This usually helps to solve the problem. This is so important in the advanced stages of dementia especially when the Resident has a reduced availability of language use with which to communicate or is no longer able to communicate at all.

But there are times, HERE IT COMES, when the use of drugs is appropriate and takes the best interest of the Resident into consideration. I believe this and have experienced at least four ways in which this is so.

When Gregory was first diagnosed with Alzheimer's some eleven years ago, we started with Aricept. The drug's hope was that it would slow down the disease and in his case I guess it has since he has been able to live an active, involved, quality life for ten years after the diagnosis. A caveat here is that I am accepting the diagnosis (Dementia/Alzheimer's) as all other possible causes of the symptoms we were experiencing were ruled out. 

When the Aricept was begun, a spike in Gregory's abilities was visible and the doctors were surprised and pleased since the drug was supposed to "slow" not "improve." In Gregory's case it "improved" but the improvement were short lived and after three or four months his abilities began to slowly fail. 

At this point we added Namenda to the mix and again there was a spike in Gregory's abilities, surprising the doctors. This time it lasted and only slowly declined for some 9 more years. We say that each individual's experience with Dementia/Alzheimer's is unique and possibly the way Gregory reacted to the drugs was unique to him.

During the eleventh year, Gregory's abilities began to fail dramatically. I took him off both of the Alzheimer's drugs for two reasons. If their purpose is to slow down the disease, what does "slowing" mean at the more advanced stages? Secondly, if we were able to clear the drugs out of Gregory's system and then reintroduce them some months later, would we experience the spike that we had experienced when they were first administered?

I use the term "WE" here because by now Gregory was no longer able to monitor his situation so my observations were pivotal. All of my decisions about Gregory have always been made with love and for his benefit, not for mine or anyone else. For example if a decision was good for Gregory but bad for me, I made the decision anyway knowing that Gregory could no longer change ... but I could!

The reintroduction of Aricept and Namenda did not cause the spike that I had hoped for. I was disappointed as you can imagine. But then things began to get so difficult for me to provide at home that I made the decision to find Gregory a place that could meet his increasing needs.

I might add that having to move Gregory had nothing to do with my health, or frustrations at providing for him, I would have gone on until I probably died first, as many caregivers do. But Gregory's needs became so great that I literally could not provide for them at home and by myself.

Now Gregory was living at The Lieberman Center, Special Memory Care Unit and we were both very happy with the care he was receiving. We talked about the move and he was accepting. To this day, maybe because of his difficulty with language use but I don't think so, he has never once asked "Why am I here?" or told me "I want to go home." Lieberman is his new home, community, and he seems content to be there.

As needs arrive I can talk with the Social Worker and/or Head Nurse and make decisions about Gregory's care. He can no longer communicate his needs so I have to be responsible for making sure he is being well taken care. The staff at Lieberman was and is wonderful and help me make decisions and when I needed more information or to be "educated" about a particular medical situation they are there for us.

So far we had had two good experiences with drugs, the beginning Aricept and Namenda.  Next the Medicare people decided to change his Aricept to the Exelon Patch. I am not totally sure of the reason but knew that the patch was easier to administer and also through the skin went directly into the blood stream without interference from the stomach architecture and chemistry.

Surprise. Once on the Excelon Patch, Gregory spiked in ability (although not to previous highs but based on his new lower level of functioning.) I was so pleased to see the return of some behaviors and abilities that had been gone and/or lost for a long time.

As the Dementia/Alzheimer's progresses of course the abilities and behaviors change. By now Gregory has NO language for his use so I have to make all decisions based on how he presents himself, what the medical blood tests say, his level of discomfort and/or frustration, his appetite, and other observations, etc.

Next, Gregory became unhappy, started crying a lot, would get into "babbling" and not be able to stop until he had elevated himself into a "tizzy." He was striking out and resistive in his responsive behaviors and that made it very difficult for the RCAs to change and clean him. It sometimes took four people to give him this support when changing a pee/poo and when showering or sponge bathing him.

In a very hard decision on my part, and one that was supported by the nursing staff and carefully explained to me and very carefully administered to Gregory, we began Gregory on a low dose of Risperdal, an antipsychotic drug.

It took him about a month of being sleepy, lethargic, "out of it," until the level of drug could be found and until he could get used to the side effects. Every day I would visit and hold his hand. Sometime he would be awake, other times awake but not present, other times asleep. When he was "with me" I would explain that he was feeling so sleepy because of a new drug he was taking to "make him better." I promised him that it would slowly get better. He seemed to understand or at least trusted me as he closed his eyes and drifted off again.

Short of a month later, Gregory was back with us. Happy, content, cooperative, not resisting, not having any need for responsive behaviors. His life was good again and some of the quality had returned. 

It was a wonderful decision and worked well for Gregory at his advanced stage of Dementia/Alzheimer's. This lasted for about a year but now some of the old difficulties have returned. Perhaps as the disease progresses or perhaps the Risperdal becomes less effective, so we have decided to increase the dose a tiny bit to try to offset some of Gregory's resistive behaviors. 

At this point one cannot look for other ways of dealing with the resistive behaviors short of NOT bathing him, NOT changing his pee/poo pants, NOT getting him dressed in the morning, NOT trying to get him comfortable in his Broda wheelchair as the fear of his grabbing you and hurting you.

Before the Risperhal he did grab a RCAs wrist, twist, and sprain it. He was not being violent just frightened, or confused, or angry. But none the less he hurt someone else. Recently when I was too much in his space, he pushed me away not injuring me but breaking my glasses (which I now am more careful to protect.) 

So the long and short of drug use, in my opinion and experience, and in Gregory's experience as well since I now speak for both of us as he is no longer able to: the careful, studied, loving use of drugs at various stages of Dementia/Alzheimer's can provide helpful, respectful, caring results.

At a certain time in the progress of the disease, one must make tradeoffs to provide a safe, comfortable, content life for the person who needs it. As I mentioned in a previous post, the words of Dr. B sums it up for me:

Several times Dr. B referred to Gregory at "That poor guy..." While that made me sad it did emphasis some of what Gregory is probably still "suffering" because of his level of awareness combined with the level of his dementia. For example, "That poor guy cannot process what he is experiencing because of his lack of language. So if it is other than a very basic, over learned, instinctual experience, the experience probably does not make much sense to him."

Another example Dr. B gave is that Gregory seems to demonstrate a certain level of anxiety, fear, and discomfort if only because he is not able to analyze an experience using language. "That poor guy does not know whether he can trust an experience or if he needs to fear it." You have heard of the very basic "Fight or Flight" instinct.

With the careful, loving use of drugs, I am content in knowing that Gregory does not have to worry about analyzing an experience for fear or trust. Also, he is better able to communicate, using the basic, primitive abilities he has left, to let me (us) know when he is happy, content, sad, or frustrated. And because his responsive behaviors are more under control, we can adjust ourselves to them and make his day to day life as good as possible for him.

Change

In reading this I say "Easier Said Than Done." But I also know that I can and am doing this. So read and decide if you can, will, or are! Michael DAILY OM Nurturing Mind Body & Spirit March 10, 2015 Make Change Work for You Useful Transformationby Madisyn Taylor When we experience change in our life we can control our response and reaction to the changes that are happening. Transformation is a universal constant that affects our lives from the moment we are born until we leave earthly existence behind. At the root of all growth, we find change. Occasionally, change and the circumstances leading up to it are a source of extraordinary joy, but more often than not they provoke feelings of discomfort, fear, or pain. Though many changes are unavoidable, we should not believe that we are subject to the whims of an unpredictable universe. It is our response to those circumstances that will dictate the nature of our experiences. At the heart of every transformation, no matter how chaotic, there is substance. When we no longer resist change and instead regard it as an opportunity to grow, we find that we are far from helpless in the face of it.  Our role as masters of our own destinies is cemented when we choose to make change work in our favor. Yet before we can truly internalize this power, we must accept that we cannot hide from the changes taking place all around us. Existence as we know it will come to an end at one or more points in our lives, making way for some new and perhaps unexpected mode of being. This transformation will take place whether or not we want it to, and so it is up to us to decide whether we will open our eyes to the blessings hidden amidst disorder or close ourselves off from opportunities hiding behind obstacles. To make change work for you, look constructively at your situation and ask yourself how you can benefit from the transformation that has taken place. As threatening as change can seem, it is often a sign that a new era of your life has begun. If you reevaluate your plans and goals in the days or weeks following a major change, you will discover that you can adapt your ambition to the circumstances before you and even capitalize on these changes. Optimism, enthusiasm, and flexibility will aid you greatly here, as there is nothing to be gained by dwelling on what might have been. Change can hurt in the short term but, if you are willing to embrace it proactively, its lasting impact will nearly always be physically, spiritually, and intellectually transformative.

Today Was One of Those Days

My phone ring at 9 o'clock this morning. It was Manny saying he had hurt his foot and was unable to walk. He would not be able to help Gregory today. So I got dressed, had a quick breakfast sandwich, and went to visit Greg knowing I would be helping him with lunch, spending time, and then also helping him with dinner.

In some ways it felt like my day been ruined, in other ways I was excited about spending the entire day with Greg. When I arrived it Lieberman, Greg was already at the table in the dining room with his the food sitting in front of him. I don't think he was confused that Manny wasn't there and he was patiently waiting. He was very happy to see me, we hugged, and I gave him a kiss.

Gregory ate his lunch uneventfully. Table conversation with Batia and Martha was fun and a bit of crazy as usual. We went back to his room where I shaved him and we visited until it was time for his nap. While he was napping I left to run a few errands.

I arrived back from my errands to find Gregory's wing's "living area" filled with people listening to Sharon play the piano. This activity was not taking place in the usual place because two residents were in the final hours/days of their stay at Lieberman so keeping their wing more quiet and peaceful was in order.

Friend Pat had also just arrived and was in with Gregory when she had to leave so the aides could get Gregory up from his nap and into his wheelchair. I saw the aides beginning their task so I stayed out in the hall. Pat and I had visited for a while when the door to Gregory's room opened and one of the aides poked out to say Gregory was having a difficult time.

Both Pat and I went into the room to find Gregory arguing, screaming, swearing, flailing, and kind of being physical with the female aide. He had gripped her by the arm and kept pushing his teddy bear at her saying take this, take this. (Meaning take the teddy bear.) She was struggling with him, saying "I don't want the teddy bear." and finally loosened his grip on  her arm.

I got involved by announcing that I was there, everything was OK now, calm down, calm down. I hugged him. Held him. And struggled physically with him but only a little bit. I told the aides that I could handle it now and they left.

Gregory was still being verbal, shaking all over, and upset. He had me by the arm and each time I carefully pulled myself loose, he would grab me again. Eventually, smothered with kisses, and hugs, and love he did calm down. He was still shaking but by massaging his neck and back he was able to calm down.

Pat and I stayed with him until dinner and by then all difficulties had passed. Pat said goodbye as I took Gregory into the dining room. Dinner was uneventful and by 6:30 I said my goodbyes leaving him parked in front of the main TV with the other residents.

What caused this melt down? Don't know for sure but can surmise. Manny was absent. Gregory's nap had been earlier than usual and/or too long. The aide had put his pants on only half way up in case he peed and his legs felt constrained. Pat's visit ended abruptly when the aides arrived which upset him. Gregory's assigned aide is newer to him and therefore unfamiliar. Maybe he had a bad dream. Maybe the noise from the music out in the hall was confusing. Maybe he was frightened. Maybe he was inadvertently hurt by the lift. Maybe he wasn't in charge of what was going on and it was just the Alzheimer's. Maybe it was just a bad day.

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!

Change

It is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

At Lieberman Center his needs are being met
Although never as well as I was able to meet them.
I was always there for him when he needed me.
Now he waits, in a wet diaper, for the aide to arrive

I go to visit, to hold his hand, to read aloud
At meals I help him cut his food or manage his fork
I rub his neck and his swollen ankles,
And then an hour or two later, I go home.

He continues to live in the moment there
Seems to be enough, and he is content again.
He has never asked why or when or what or where.
The narrow world that is now his life, his home

The minutes, to me, seem to go so slowly
But his days pass easily and without variation.
The place through my eyes is painful to witness
He doesn't seem to notice the difference.

And then the fall and the eight staples in his head.
And the pain in his back and neck from the fall.
And the Grand Mal Seizure with its hospital stay.
But he doesn't complain, or cry, or need.

And the raised rails on his lowered bed,
And the increased difficulty moving around
And the need for the wheel chair to get around
But he doesn't resent, or anger, or demand.

So, it is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.

Now, with most of my previous emotions put to rest;
Fear, frustration, anger, resentment,
My sadness and grief and despair
Can be more purely felt and therefore more strongly.

All I can do now is wait, patiently wait.
Wait for the end of life to arrive.
His blessed end,
or mine.

A Reply

In response to a letter from a former work mate of Gregory's (http://mhorvichcares.blogspot.com/2014/02/a-letter.html)

Dear Mary Ellen and Bob,

What can I say. I am so sorry that you are going through this. Never easy. Trite comments like "But we have so much for which to be grateful." are true but help little. People over the years have always been very kind with their advice, their "be good to yourselves," their love and affection, their suggestions. But in the end nothing really helps, does it? My "trite" comment for you would be, "Love is all we really have. Cherish it. Hold on to it." That has been my guiding principal.

I know, however, that advice from others doesn't really help until it becomes part of your own experience. I am happy that in some small way my journey with Gregory has been helpful to you both. My fervent wish for you, as it has been for me, is that I wish I could make it all go away! But since I cannot, I'll share Gregory and my motto that helped for many years, "We have a choice, lie down and die or hunker down and keep going the best we can!

Mary Ellen, Gregory always loved working with you and Thresholds was one of the career highlights of his life. He learned so much about people and caring and during that time of his life he met me, worked through leaving his wife after seven years, and eventually returned to his first love Architecture. He truly loved helping the residents at Thresholds; cooking with them, teaching life skills, going on shopping trips. In many ways you, and Jerry Dincin and Thresholds gave him a new identity which he has held on to this day.

Thanks for writing and sharing your thoughts. In many ways they bring tears to my eyes. When I am able to step aside from my grief, my anger, my impatience, often my lack of compassion, my fear, my loneliness, my being less than perfect in my support of Gregory, my selfishness ... I do know that I did a wonderful job helping Gregory cope and manage to live with Alzheimer's for so many years. And even today when he is so much less than he was, and in my role as Secondary Care Giver with Lieberman taking most of the responsibility, he is safe, well taken care of, and loved by many many people.

Michael

Fearlessness

Shambhala Publications

THE FIRST TIP OF FEARLESSNESS

Sadness hits you in your heart, and your body produces a tear. Before you cry, there is a feeling in your chest and then, after that, you produce tears in your eyes. You are about to produce rain or a waterfall in your eyes, and you feel sad and lonely, and perhaps romantic at the same time. That is the first tip of fearlessness…In the Shambhala tradition, discovering fearlessness comes from working with the softness of the human heart.

http://www.shambhala.com/shambhala-4.html

To Read or Not to Read

I am still trying to figure out how I can help Gregory continue to read at bedtime. Perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.

He often closes the book and cannot explain where he left off. When asked "Where did you stop? or finish? or end? (various words tried on various nights) he is unable to tell me. Often he points to where he began!

I think that he still comprehends although may not remember. So each period of time spent with reading is probably an isolated event, without his being able to paint the entire picture of the story, but he still enjoys his reading.

I am afraid that another problem is that Gregory might not any longer understand the mechanics of reading. Top to bottom. Left to right. Front to back. Turn page, begin again.

I show him where to begin reading, I keep an eye on the page he is on, I note where his eyes seem to be, and I mark the place he ended reading. But you can imaging what this means then when "HE" is reading and "I" am in charge!

Last night I dozed off while he was reading, when I woke and began to mark where he had left off, I saw that he was on the same page again. After success for the last week or so, I commented, "I cannot fucking believe that you are still on the same page! Did you loose your place? Do you remember where you ended? How are we going to do this?" Nicely done, don't you think! NOT.

What happens is that with these intermittant behaviors, with the ones that come and go, the ones which are here and unexpectedly evaporate ... I react according my expectations for what is a "normal" behavior not Gregory's ever changing "normal" and I freak. I speak out of anger, out of fear, out of worry for the future, out of defeat of all the work I did to try to help him hang on to the skill a little longer.

I do not respond this way to those skills and behaviors that no longer exist or more consistently come and go or are for the most part on their way out. I have developed lowered expectations for these type of interactions and deal with them as I support him. It is the "slaps in the face" or unexpected disappearances that freak me out.

I am working on it and have gotten better but I still am BELOW satisfactory on dealing with these kinds of occurrences. Most often my reaction is seated in the deep loss and sadness and grief and devastation that I feel for what he must be going through and then I end up treating him poorly.

So perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.

Say nothing and have him begin in the same place the next night. Most likely I am the only one who will remember and I'll just have to swallow my despair which will be better than treating Gregory poorly and making him feel badly.

Bring on the next defeat...

Cultivating Compassion

From Pema Chödrön 

http://blog.shambhala.com

Compassion practice is daring. It involves learning to relax and allowing ourselves to move gently toward what scares us. The trick to doing this is to stay with emotional distress without tightening into aversion; to let fear soften us rather than harden into resistance. We cultivate bravery through making aspirations. We make the wish that all beings, including ourselves and those we dislike, be free of suffering and the root of suffering. 

Overwhelmed Through My Tears

Gregory was quite distraught twice today, "Something is not right." He looked sick but it turned it  he had to go to the bathroom and didn't realize it until I suggested he do so.

Recently he has had trouble navigating his dinner plate when there are too many types of food on it so I have to figure out how to serve dinner differently.

He no longer knows how a book works regarding where one begins, ends and/or how to turn pages when ready so he can no longer read before bedtime. He cannot tell me or even show me even with my help and suggestions in starting his reading and monitoring where he ends. 

I cannot remember when the last time we had a conversation or when he was able to tell me what he needed to tell me short of, "I ....." without my having to guess or give up guessing.

Sometimes I do not know how I can go on like this. I will but I am grieving the current losses. I'll regroup, figure out how to cope, and move on.

Let me say that even with all of our friends, family and the love that surrounds us ... I feel so lonely. So overwhelmed. So frightened. So lonely.

Sorry to unload.

Two poems from a book our friend Roger gave me called "Poems That come to Mind:for those who love someone with dementia" in the haiku or tanka sytle, by Linda E. Austin. 

I reach my hand

into the day

searching its pockets

for a penny

to buy a new beginning

• • •

in the deep, dark well

when the light at the top fades

it is only you

and the god you believe in

and sometimes that's not enough

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.