FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Sunday, June 30, 2013
Saturday, June 29, 2013
He went to the closet where a stick was placed through the handles to keep it closed from the cats.
He was able to take out the stick but that new situation caused him to forget how to open the doors.
With a little help he was able to open the door.
I suggested he put on his softer gray jacket to keep him warm.
He took it out of the closet and put it on but the hanger was still in the coat.
He realized what he had done and took the hanger out but didn't know where to put the hanger.
I suggested that he hang it back up.
While hanging up the hanger, he saw his brown jacket.
He took it off the hanger, put it between his knees, took off the gray jacket, put it on the hanger and hung it up.
I just watched.
He put on the brown jacket backwards pushing out the sleeves when they did not let him put his arms through.
The brown jacket was now on inside out.
He tried to zip the jacket but couldn't after many tries because it was inside out.
I mentioned that the jacket was inside out.
He took it off, turned it right side out and put it on and zipped it up, proud of himself.
While still standing there he took it off and asked me if it was right.
I said yes it was and asked why he took it off.
He put it back on and zipped it up. He took it off again and didn't know what to do with it.
I suggested he hang it up but he couldn't get the closet door open.
He handed me the coat, said "Do something with it," and out of exasperation I tossed it into the garbage can.
Thursday, June 27, 2013
While I have always recognized emotions as a part of being human, I felt that emotions out of control were a bad thing. I never thought of them as an anchor to how I am feeling about myself or my environment.
I wrote about this recently when I realized that when dealing with a difficult interaction between Gregory and myself, my emotions would seemingly inappropriately explode. It turns out the emotions were real and I needed to honor and give them notice. The difficulty was that old expectations in my relationship with Gregory were triggering the emotions and the triggers were no longer true.
For example now and then I would interpret Gregory's behavior as showing his not caring or not trying hard enough to behave in a way that I was used to. Turns out the emotions caused by my interpretation was real but the trigger was no longer true. He does the best he can but the Alzheimer's is what at times scrambles his behavior, not his lack of caring.
I realized that I was still allowing the old triggers to cause my emotions when if effect, the old triggers were no longer true. I needed to look at those triggers and delete them while adding new triggers and new emotions, like feeling nurturing in place of feeling anger when Gregory did something that looked like a lack of caring when in reality it was that he could no longer focus on the issue at hand.
A short while later, I came across this discussion in Ruiz Jr's book which reinforced what I had already begun to understand:
"It is important to keep in mind that our emotions are real and should not be ignored as if they don't exist or stuffed away as if they aren't valid. Emotions create the most authentic anchor we have to ourselves.
"The whole spectrum of emotions--fear love, jealousy, insecurity, anger, joy--is very real. But here's the thins: What triggers those emotions may not be real.
"Our emotions--regardless of the triggers--are expressions of ourselves. These are the important questions to ask: Are we aware of the triggers? Do we know if the trigger is based on reality or if it is based on faulty information? Is the trigger based on an attachment to a certain belief or expectation?
"Uncomfortable emotions are like car alarms: they let us know there is a problem to attend to, a wound for us to wrk on, thus allowing us to see our own truth. Whenever an emotions gets triggered, it is the opportune moment to ask questions such as: What is this about? What agreement is at the heart of this? What attachment does this threaten? Do I really believe this? Is it important? Answering these questions gives us the opportunity to examine our beliefs and choose whether or not to continue to believe.
"We honor our emotions by realizing that they are an expression of how we feel and what we are going through. We look at what has triggered our emotions, while still allowing ourselves to simply feel. We further honor our emotions by having the awareness that they may have been triggered by something not based on truth. Thus we use our emotions as a tool for transformation, because they completely expose whatever agreement has been hiding beneath the surface.
Saturday, June 22, 2013
Friday, June 21, 2013
Thursday, June 20, 2013
- Saw this on Facebook and thought it held a beautiful sentiment.
- There is a tribe in Africa where the birth date of a child is counted not from when they were born, nor from when they are conceived but from the day that the child was a thought in its mother’s mind. And when a woman decides that she will have a child, she goes off and sits under a tree, by herself, and she listens until she can hear the song of the child that wants to come. And after she’s heard the song of this child, she comes back to the man who will be the child’s father, and teaches it to him. And then, when they make love to physically conceive the child, some of that time they sing the song of the child, as a way to invite it.
- And then, when the mother is pregnant, the mother teaches that child’s song to the midwives and the old women of the village, so that when the child is born, the old women and the people around her sing the child’s song to welcome it. And then, as the child grows up, the other villagers are taught the child’s song. If the child falls, or hurts its knee, someone picks it up and sings its song to it. Or perhaps the child does something wonderful, or goes through the rites of puberty, then as a way of honoring this person, the people of the village sing his or her song.
- In the African tribe there is one other occasion upon which the villagers sing to the child. If at any time during his or her life, the person commits a crime or aberrant social act, the individual is called to the center of the village and the people in the community form a circle around them. Then they sing their song to them
- The tribe recognizes that the correction for antisocial behavior is not punishment; it is love and the remembrance of identity. When you recognize your own song, you have no desire or need to do anything that would hurt another.
- And it goes this way through their life. In marriage, the songs are sung, together. And finally, when this child is lying in bed, ready to die, all the villagers know his or her song, and they sing—for the last time—the song to that person.
- You may not have grown up in an African tribe that sings your song to you at crucial life transitions, but life is always reminding you when you are in tune with yourself and when you are not. When you feel good, what you are doing matches your song, and when you feel awful, it doesn’t. In the end, we shall all recognize our song and sing it well. You may feel a little warbly at the moment, but so have all the great singers. Just keep singing and you’ll find your way home
Wednesday, June 19, 2013
June 19, 2013
OUR RESPONSIBILITY TO OPEN
These days the world really needs people who are willing to let their hearts, their bodhicitta, ripen.
There’s such widespread devastation and suffering: people are being run over by tanks or their houses are being blown up or soldiers are knocking on their doors in the middle of the night and taking them away and torturing them and killing their children and their loved ones. People are starving.
It’s a hard time. We who are living in the lap of luxury with our pitiful little psychological problems have a tremendous responsibility to let our clarity and our heart, our warmth, and our ability ripen, to open up and let go, because it’s so contagious.
Monday, June 17, 2013
June 17, 2013
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.
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:
- 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.
- 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.
- 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.
Thursday, June 13, 2013
finite |ˈfīnīt| adjective
1 having limits or bounds:2 Grammar (of a verb form) having a specific tense, number, and person.Contrasted with nonfinite.finitely adverb ,finiteness noun
INFINITEinfinite |ˈinfənit| adjective1 limitless or endless in space, extent, or size; impossible to measure or calculate:2 Grammar another term for nonfinite.noun ( the infinite )a space or quantity that is infinite.infinitely adverb ,infiniteness noun
NON-FINITEnonfinite |nonfinite änˈfīnīt|adjectivenot finite.• Grammar (of a verb form) not limited by tense, person, or number. Contrasted with finite.NON-FINITE GRIEVING, the best (or worst) way of describing the grieving that goes on every day in the life of someone who loves someone with Alzheimer's Disease! Not only is it limitless or endless in space, extent, or size but it is impossible to measure or calculate and in addition is not limited by tense (past, present, or future,) person (not the person he used to be or whom you loved and now have learned to love in a new way,) or number (the number of ways in which this insidious disease presents itself.)
Wednesday, June 12, 2013
Sunday, June 9, 2013
Wednesday, June 5, 2013
Cleaning up a child's messy butt with moist toilettes and rinsing out a filled diaper is not for the weak at heart.
He came down with a bad cough yesterday and maybe that is why. We were both taking a late morning nap and the bedroom smelled like what a full diaper smells like, if you remember.
While I have never been, am not now, and hope never to be a parent; I do remember from my baby sitting days what that smell is like. It is much more than a fart but and much more than a dump in the appropriate location. And it lingers.
It was not a full load, just a fart's amount gone awry but none the less all the information I needed to inquire and inspect the situation was there.
Since he is not good at communicating, and probably didn't even realize what had happened, I am grateful for my sensitive nose. I used to say that I could smell a batch of cookies in the oven when they were just about ready to be taken out. Sorry for the mixed. chocolate chip cookies metaphor.
I was able to attend to doody or is it duty without making him feel bad and with being able to keep my breakfast down.
Enough said. Or have I said too much already?
Monday, June 3, 2013
While I was paying, I looked up and saw Gregory waiting for me by the front of the store. He signaled across the registers to let me know he was there. I got upset because he not only didn't stay in the car, but left it open, walked across the parking lot into the store, and waited to find me there. I was terrified that the situation I thought in hand was not under control at all. I was overwhelmed by all of the things that could have happened go him.
Maybe I should have just been grateful that he was there and I saw him waiting but like the parent who spanks her child for playing in the street and almost getting hit by a car instead of hugging him and telling him you are so happy he is safe and well, I got angry and balled him out.
After grocery shopping, we arrived home in the parking garage. There were four heavy shopping bags, two for each of us to take up one flight of stairs to our condo. I took two bags out of the trunk and asked Gregory to get the other two.
He first tried to pick up both by holding one handle from each of the heavy bags. I told him to wait, put my bags down on the ground, and separated the bags still in the trunk hoping it would make how to hold them more obvious for him.
He took one bag and held it to his chest and then didn't know what to do with the other. By now, given the day and the previous disconnects, I knew that it would be easier for me to do the work rather than try to explain or instruct him how to carry two shopping bags by the handles each swinging in a different hand.
I was able to be somewhat kind and not vent my full anger and frustration or worse yet give in to my rage, although my emotions were pumping. After my second trip schlepping the groceries from the parking garage to the condo, I made his coffee, unloaded the groceries, made a cup of coffee for me, and attended to some work waiting for me on my computer. I was, however, somewhat distant and silent, which also sends a message to Gregory.
A short while later, I invited him into the computer room to watch a few TED presentations which are always moving. Afterwards he came back into the computer room and carefully began to apologize for his earlier behavior. I was able to help after asking if he was trying to apologize or was angry with me over my behavior.
I sat him down, took his hand, and said, "I appreciate your apology but I have to apologize to you as well. I know that you did not do anything on purpose today, you did not try to make me angry. We both know that at times your brain plays tricks on you through no fault of your own." At this point he began to cry. I squeezed his and and told him that I loved him.
I continued, speaking very slowly, "What happens in these situations is that I speak first out of anger and fear when I should be speaking out of love. I am working so hard at speaking out of love only but I am not too good at it yet." And I began to cry.
I think Gregory understood what I was trying to say. I reinforced that I love him no matter what, that I am here for him, that nothing that happened today was his fault, and that by now I am over it and not at all angry or frightened anymore. He reaffirmed his love and gratitutde for me.
He felt much better and so did I.
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Knowing that she was correct and that by telling myself I am "bad," I bring more "bad" on myself, I wrote back, "Good suggestion. From BAD to I AM GOOD IN THE MORNINGS! Will let you know the results. Tough couple of weeks but not too BAD. OOPS. Tough couple of weeks that were almost GOOD. Love ya too."
When he woke up this morning, I told myself "I am good" and offered Gregory a very simple, "Sleep or Up?" I discovered, however, a new level of Gregory's difficulties getting started in the morning. It dawned on me that he opens his eyes and then doesn't know comes next.
Even that simple "Up or Sleep" didn't work this time. He fumbled with the cover, hemmed and hawed, sat up, lay down. As you can imagine I was frustrated because that meant the end of my sleep but the realization of his state of being was even more frustrating and sad.
I asked myself, "I thought you were good?" I guess I was better, not disrespectful, just banged around a little, didn't say anything negative ... but still felt BAD. I wasn't bad, I felt badly.
Wonder where tomorrow will take us with engines running.
P.S. Learned something interesting for this blog:
Firstly, there is no such word as 'layed'. It doesn't exist.
Secondly, the confusion comes between the verbs 'lie' and 'lay' and their tenses.
'To lie' (not 'tell a fib') means to lie down: "Lie down on the bed if you're tired."
'To lay' means to set something down: "Lay the parcels on the bed, please."
Now, the confusion:
The past tense of 'lie' is 'lay': "I lay on the bed when I was tired."
The past tense of 'lay' is 'laid': "I laid the parcels on the bed."
That's why neither of your sentences are correct (especially 'layed', which doesn't exist).
I LAY DOWN in the middle of the road. (This refers to the one-time action of lying
I LAY in the middle of the road for two hours. (Refers to an extended period of time.)
He offered about ten minutes of confused beginning utterances, hemming, hawing, etc none of which was coherent to me or most likely to him.
Finally I offered, "Get up or sleep?" He pushed back the covers and got up. Success!
Next I went with him into the bathroom, directed him to the switch that turns on the heat and he knew what to do. Success!
I pointed to the toilet, and he knew what to do. No details needed here. Success!
Next I opened the medicine cabinet and took out his shaver box (contains shaver, brush, cord.) He knew how to plug it in without too much study and shaved. Success!
When he was finished, he opened the bathroom door. I pointed to the underwear and sweats on the bench just outside the door. He knew what to do. Success!
He had a little trouble getting the sweat shirt on correctly (even though it takes the same understanding that getting his undershirt on does.) I held back, he tried several times, "Oh shit!" "Oh shit!" "Oh shit!" finally getting it on correctly. Success!
So what we have here is a lot of successes in a failing kind of way!
P.S. Last night as we were drifting off to sleep, Gregory asked, "Do you know where you are going?"
"I am not sure what you mean," I questioned.
Tapping my head with his finger he replied, "In here, in here."
Saturday, June 1, 2013
Finally a response from Gregory, "My bathroom."
"Yes, your bathroom." No response or acknowledgement from Gregory. "Your bathroom where Michael is right now." No response. "Here, let me show you."
"Yes, your bathroom, here where Michael is standing and laughing."
Gregory was not offended by my laughing as I commented, "You must be exhausted from your swimming" to which Gregory agreed. Ken took the swim suit from Gregory and hung it over the shower door saying, "See, here. Hang your suit in your bathroom."
Ken, as usual, was very calm and not negatively or emotionally involved with the activity.
The reason I was laughing is multi-fold. First I was able to see from a non-emotionally involved point of view how silly the interaction seemed and how amazing the manifestation of Alzheimer's can be.
Next, I was interested that I could be peripherally involved but not have the frustration that usually comes with these types of interactions. It felt good to be OK with the situation.
Finally, I was pleased (does this make me bad) that someone else could see so explicitly and directly what I go through SO MANY times a day.
From now on, I think we are at the point that I need to "walk" him through the morning activities: take off your sleep clothes, turn on the heat, set up your shaver, shave, clean and put your shaver away, put on your underclothes, put on your sweats, begin your day. By accepting this responsibility (which I really don't want to do and probably resent) I will make his and my life easier. Let me explain the "less than saintly" way I handled it this morning.
This morning when I suggested that it was time to begin the day, he got out of bed and hung around the bed lifting and lowering his sleep shirt with an inquisitive look on his face. "Go in the bathroom and shave," I prompted. I think he wakes up and is disoriented about where he is, who he is, and what he should be doing.
I must have drifted back to sleep, which I sometimes do while he is shaving, because next thing I knew, he came to me for help. He had gotten out of his sleep clothes, had not begun shaving, and was trying to get his sweat shirt on starting with putting his arms into the sleeves from the outside. Can you picture this? I won't bother even trying to describe, just believe me.
I helped him off with the shirt and asked, "Do you NOT know how to begin the day?" Fatal mistake on my part number one, when will I learn? He couldn't answer and became frustrated instead. When will I learn? I think I would do OK if he could say, "No Michael I do not know how to do this today." Then I would help but instead he closes down and I fume. Why was I waiting for an answer and why did I think he would be able to communicate with me?
By now I am just short of raging. But I control myself. So what do I do? Did I mention that I am not good in the morning? I made him get back into his sleep clothes, get back into bed, and we started over from the beginning. I never did say I was perfect! He probably had no idea what I was doing but it kept me under control so it must have been good.
I walked him through the beginning of the morning activities, probably not in the nicest tone of voice, did I say I am not good in the morning?
As we went through each step he behaved as though he knew what he was doing from the beginning leaving me numb and wondering what I had just spent my last half hour doing. For some reason when I trigger the memory he thinks he has always been acting on that memory and for some reason that makes me angrier then having had to help him through it in the first place.
You see I am still normal but he is the new normal and most often I find it hard to live in his crazy world. I use the word crazy loosely if only because Gregory is NOT crazy, but sometimes I think I am when I am trying to operate in his world.