A Letter To A Friend

S,

I appreciate your comments. I have never entertained the possibility that we get fewer invites. We always enjoy seeing you and being with you (and your and M's making it easier to see B.) As we discussed gearing down G's yearly birthday July 4th party, I certainly understand "little time and less money and energy." 

Our life has become more narrow. We do enjoy our opera, legitimate theater, musicals, NETFLIX, and the movies. I enjoy cooking and experimenting in the kitchen. Having people in now and then is still fun but getting harder. Being with people becomes a little more difficult partly because of Gregory, partly because of the extra energy I have to spend to monitor and provide for G, tell my stories and his, etc.

I am definitely feeling a little older and a little more tired but not to the point that I am "in trouble." Also, when he has had a difficult day and/or I am feeling down it is hard to be with people and keep up the positive front and the running commentary. Being home and alone and quiet works well. We depend on listening to music a lot to disguise the fact that we no longer can have two sided conversations but also because we enjoy the music. It has a calming effect on both of us.

Current changes, for which I am still trying to figure out how to compensate, is his not knowing how a book works, so no bed time reading; increased difficulty dealing with too many items on his dinner plate; perseveration in some minor annoying behaviors; continued loss of even more common word associations;  needing more of my attention as his "Bowel Coach." I'll not go into detail about the later.

Yesterday I fixed G his five o'clock coffee and cookies, placing both on the counter and showing him. He took the cookies to his desk, ate them. Later when I was preparing dinner I saw that he left the coffee behind on the counter, not even realizing there was no coffee with his coffee and cookies. 

Your offer to "be there" and in effect your "being there" is generous and gracious and in itself makes my life nicer/easier. Right now that is about all you can do and should consider it well received. 

I do like the idea of Gregory and I picking you up and driving downtown to a hot dog and movie show with B. The new companion should make it easier so I can get away and have some time to myself and allow me to run errands without having to bring Gregory along all the time. 

Soon. Love to M.

m

Changing Changes

The "Pocket Drawer" which was a wonderful invention on my part when we moved into the condo has seen its sunset. The concept no longer works. That makes me sad and I have fought its demise for a month or more but yesterday, finally, I let the Pocket Drawer Credenza take its last breath.

The credenza, which sits by the front door of our condo, is a beautiful piece made of black bamboo. has a long shelf just below the top of the piece and below, three drawers.

The top is for a fast, temporary drop off of cell phone and/or keys, and for holding incoming and outgoing mail. In the center there is our Buddhist Shrine with three singing bowls, Angel cards with motivating words, pewter coins with more words on which to meditate; plates with incense, water, earth, fire (candle,) and food. There are also two gray/green miniature pottery pieces made by our God Son Isaac while he was in Japan. Finally there a Japanese bell that has a sweet ring that sounds for quite a while during which time we pause to meditate on the words selected for the day. Every time we enter or leave the condo we pause at the shrine.

The shelf holds books that have overflowed our other bookshelves and also books that need to be returned to friends. You don't want to see the accumulation of dust on the shelf and books but since it is a narrow shelf, you cannot experience the build up unless you are kneeling on the floor.

The left drawer is Gregory's, the right drawer is mine, and the middle drawer holds our emergency information, a crank-up weather alert radio, several flash lights, and a power bar which receives the plugs of the charging cords that begin in Gregory and my drawers.

In our personal drawers we keep what I call our "Pockets" for overnight storage and charging. They hold our wallet, keys, cell phone, loose change, Chapstick, cough drops, medical alert necklaces, etc. Ironically (or not) my drawer reflects my personality and is chock filled with STUFF. Gregory's is spare and only contains the essentials.

The demise of the "Pocket Table" is taking place in the drawer area. As his Alzheimer's progresses he continues to loose word associations. So when I would say before getting ready to leave the condo, "Fill your pockets" or when getting ready for bed I would say, "Empty your pockets" he used to be able to follow through. No more.

Slowly he lost the "Pockets" associations. He would start, get distracted, and leave most of the items behind. At times he didn't know what I meant by "Pockets." Sometimes I would ask him to put something on the "Pocket Table" and the odds became better that he would not be able to follow through.

I began keeping an eye on his "Filling" and his "Emptying" and would point out when he overlooked a part. Then I started checking and finishing the process for him with or without pointing out the overlooked items. Sometimes when in a hurry, I would just fill or empty his pockets for him.

Recently he has been putting his wallet in the center drawer or in my drawer. He puts the cell phone on the top next to the singing bowls. After realizing that every morning and every evening was a battle, we discussed ways to make it easier. Since he no longer really needs to carry keys because I always have mine, we discontinued that.

Instead of his asking for me to show him how to put on and take off his "Medical Alert Necklace" we resorted to a bracelet (although less stylish) that he keeps on all the time. His comment (while I expected a fight) was, "Oh that will make it easier." He no longer carries loose change.

He still carries his wallet for ID purposes and his cell phone because he can still answer it if he is with his companion and I call him. He can no longer use the phone to call me. When we leave I hand him his phone and wallet and when we come home I take them and put them into the drawer for him. Automatic on my part not depending of the maybe of his.

While I feel bad that I seem to be taking away what little of his independence is left and while I end up having to spend more energy checking on him and waiting until I see that the action is accomplished, it feels good not to have to spend the energy being angry or frustrated and not needing to yet again explain what he needs to do. I just do it for him. I don't mind and apparently he trusts me enough to not mind either.

See No Evil, Hear No Evil, Speak No Evil

I am pretty sure that I do not need to worry about seeing evil around the condo. Enough said.

I continue to work at being calm, patient, respectful, loving, supportive, etc with Gregory on our Alzheimer's Path, therefore speaking no evil gets easier.

The one I just became aware of having perfected is hearing no evil. That is the subject of this post.

My hearing has become fine tuned to all types of noises around the condo. This has happened in relation to Gregory's increasing need for supervision and in addition, our getting two baby kitties. Gregory's needs have been increasing for ten years now and most recently have become fairly intense.

The kitties (Emma and Gigi) were 4 and 5 months old when we got them and they are now 9 and 10 months old respectively. As you can imagine, new kitties can get into a lot of trouble, especially when there are two of them to egg each other on.

I am tuned into noises during the day, when we have music playing, at night when I am asleep. For the most part, there are three noises as well as their intensity that I am able to distinguish in relation to both Gregory, the cats, the state of the condo, and all of our general well being.

The first noise I can distinguish is OK NOISE. On hearing this type of noise, I can identify what or where it is coming from, know that the noise is safe, and know that I do not have to worry about it or take action. Examples are the washing machine changing cycles, the refrigerator dropping a new supply of ice cubes, the furnace clicking on or off, the kitties chasing a mouse (stuffed,) Gregory going to the bathroom.

The second noise I can distinguish is the NOT-OK-NOISE or NEEDS-MY-ATTENTION NOISE. On hearing this type of noise, I know that I must get up and go see what is happening to cause the noise and why. Did Gregory shatter a wine glass when it was dropped, is a kitty climbing the screen door, did the front door open and close, and who said "Oh shit" and why? If I hear Gregory shaving at 4:00am, I will get up and redirect him back to bed.

The third noise I can distinguish is the UNIDENTIFIED NOISE, which causes me to react as I would to noise number two but perhaps a little more quickly. Once on site with the noise, I can revert to my usual NOISE 1 or NOISE 2 reaction.

Also, I can distinguish the urgency of NOISES 1 and 2 and will react quickly or more slowly, with calmly or pumping blood, OMGing (Oh My God)ing or not. I used to jump up and run to Gregory for a "Oh No!" or "O Fuck!" noise, now I wait to see what happens next.

Actually, as I write this I realize that there are other types of noises in my repetroire. For example, if the buildings emergency alarm klaxon is sounding in my unit and the recorded message is instructing us to evacuate using the nearest stairway, I will gather my cell phone - wallet - keys etc, Gregory, and the cats if they are available and willing.

Then I will feel the front door to see if it is hot, and proceed across the hall to the emergency stairwell. If I can hear the klaxon faintly, I know that it is sounding in a different zone, well above our floor, and be prepared in case of further instruction from the fire department but will not take action and will remain calm.

Sometimes the kitty noises are of the nature that can be labeled playful, worrisome, come feed me, or wrestling with my sister. Different talking, different reactions.

When Gregory calls "Help," which he usually does in a calm quiet tone, I go to his aid no matter what.

When the phone rings, sometimes I answer it and sometimes I let voice mail greet the caller.

All in all, the ability to monitor my life, Greogry's, and the cats is quite beneficial to avoiding or catching problems before they get too advanced. I get a certain amount of peace of mind from this talent.

Optimism

Interesting shifts take place the longer one deals with being an Alzheimer's Caregiver Partner. I realized that while taking care of my partner (keeping him as safe, clean, content, useful, busy, etc) I have forgotten to figure myself into the equation.

Not that I don't take care of myself but the personalities of the Caregiver Partners seem to merge with my own taking second place. All thoughts are shadowed by Gregory and his Alzheimer's.

The task is all consuming physically, emotionally, psychologically, and intellectually with little time left for myself. People always say, "Are you taking care of yourself?" While they are well meaning, it tells me that they do not really understand what it takes to be in this position. 

Of course I am taking care of myself as much as possible. I eat well. I continue to sleep well. I can got out on my own when Gregory's Companions are with him. I read, go to the theater, eat candy, enjoy cooking, feel good about the order I am able to create for Gregory and me in our home.

But the emotional side of seeing your loved one continue to disintegrate in front of your eyes on a daily basis, unable to do today what he could do yesterday, who knows about tomorrow, and to try to untangle the messy web of associations he gets himself into cannot be put to rest.

The constant monitoring of his needs, actions, behaviors, thoughts is a job that cannot take a ten minute break, a weekend off, let alone a vacation. It is with you all the time even when I are not with Gregory.

Even while "taking care of yourself" it is very difficult to leave the mental and emotional part behind. It reminds me of people to try to escape from their problems by going on vacation or more extremely running away from their problems only to realize the problems came along with them. You can avoid your problems but that will not help solve them!

But then this shift I first spoke of began to take place. After 35+ years of being part of a loving, respectful, growing relationship and after 10+ years of being the lead caregiver partner, one begins to reestablish his own individuality and his own identity.

Yes I am still Gregory's Life Partner. Yes I am the lead member of his caregiving team. But I am also me and I am separate and I am different and I am unique and I will somehow come out on the other side of this Alzheimer's as a whole me.

This shift began to take place during my Yoga Nidra Mindful Meditation sessions when I realized that all the work done during the meditation was about Gregory instead of about me.

Once I made that shift I found that by making the meditation, the quest, the ability to quiet the noise in my head about me and not him, I was in a better place. I could be better with and for Gregory as well as for myself. 

In other words I began to concentrate on me NOT on him and we all received the benefits. For example, NOT "How can I be better for Gregory" but rather "How can I be a better person." One step further is accepting my desires in the present tense, already present and already functioning. I AM A BETTER PERSON!

This BLOG's writing was sparked by today's horoscope as added below. I realized as I read it and identified with what it had to say, that I was thinking about me and my life and my future and not necessarily Gregory's. This may sound selfish but it is not.

My meditations will change me ... not Gregory. It will help me create a more patient, calm, loving environment for Gregory but he will still have to be the one to live in his world. I will work at understanding his world, but I do not have to live in it!

• • • • •

From: http://www.dailyom.com
March 9, 2013
Lifted by Outlook
Aries Daily Horoscope

Your optimism can spark your determination today, providing you with the motivation you need to reach a new phase of accomplishment. The visions of a more beautiful future that you entertain while working and playing will likely inspire you to double your efforts where your ambitions are concerned. You may feel buoyant and energized as you contemplate the fulfillment of your expectations. And because you are likely approaching your tasks with an attitude of confidence today, you may find that you do not hesitate when presented with auspicious opportunities. If you take pleasure in your quest for accomplishment, you will likely have little trouble looking on the brighter side of life.

The most potent forms of motivation are often those that originate within us, fueled by the joy we feel when we contemplate our positive expectations. When we focus on our dreams and hopes, we need not concern ourselves greatly with the trials we face in the pursuit of our ambitions. Though we must address these issues directly, they do not cause anxious thoughts to blossom in our minds. Rather, we choose to treat tribulation pragmatically by doing all that is within our power to overcome the roadblocks that stand in the way of our eventual success. Our spirits never flag and we can take pride in the fact that we are doing our best to meet our goals, no matter what the outcome of our efforts is. The optimism you carry in your heart today will energize you and ensure that you stay strong in the face of adversity.

Nursing Care

I do not want to admit it but I think we have moved closer to the "Nursing Care" phase. Not so much medical needs but more daily, detailed support. Since associations continue to disappear, words loose meaning, even one direction at a time doesn't work so I have to "do it for him." Sometimes that means "Do it to him."

Laying out his clothes has become necessary and even then the pile of suggested clothes does not work and he goes off in another direction. I have had to help him on with his shirts, make sure he remembered his underwear, and comb his hair for him. Often he will be full dressed but his pants and wonder what's next. Sometimes he will attempt to put on two pair of pants when he was really in the closet looking for a pair of shoes.

I have been more alert to his personal hygiene needs like suggesting he shower, making sure he remembers how to shower, putting lotion on his face for him, making sure he wipes (-: Too much information :-) Today I will trim his toe nails and groom his feet. He comes to me with "dry patches" and asks what to do. When he is in pain, he is no longer able to describe it so I enter into a guessing game, sometimes guessing with him and sometimes playing by myself.

Recently he seems to have disassociated from "place." He complained about a pain in his knee (at least I think so because while he wasn't able to use words I relied on body gestures) and when I asked him to describe it, his hand hovered in the air some six or eight inches away from his knee, "Here," he said. I touched his knee and said, "Touch where it hurts." He continued hovering.

When I asked him after shaving if his face was irritated, he pointed to the lamp on his desk and said, "This always takes care of it." What I think he was doing was pointing in the direction of the medicine cabinet where the lotion is kept as if he was standing in front of the cabinet and not sitting at his desk. I replied, "Oh, OK."

A while back at meal times I started adding the condiments, salting and peppering his steak, buttering his veggies. I continue to point to his fork or knife when he hesitates and out of frustration he is using his fingers more and more. Now and then I have found that I need to cut up his food. Try doing that and helping him keep his dignity!

When we go out into the cold I make sure he has his gloves, scarf, ear muffs, and the right coat. When we arrive somewhere I put his gloves in his coat pocket as that is not a skill he still has. If I say "Put your gloves in your pocket," he will attempt to put them in his pants pocket or just look confused. When we leave I must be on the alert to make sure he has gathered all of his belongings. You can imagine that as I spend so much attention keeping him together I have begun to leave my things behind.

I am afraid to let him go to the bathroom by himself in a public place so I go along. I try to be unobtrusive (especially when others are in the bathroom) but sometimes I have to help him with his pants. Once or twice had to explain how to use a urinal as he was about to pee through his underwear. Sometimes I'll just go into a booth with him, onlookers be damned.

And, as I have often ended these rants, some days he has no troubles with any of these skills so when I intervene it then confuses him or he waves me away. "Roles and rules are subject to change on a moment's notice and sometimes not even that." M.Horvich 2012.

Silence

Today's Daily Word addresses something I continue to work on in my relationship with Gregory. In an effort to "be his words, be his story, support his actions" I find that I continue to jump in too soon. If given a enough time, if given silence, he often is able to formulate his words or work out an action on his own.

In an effort to protect him, often I jump in too soon and often my help only serves to distract and confuse him. Often it frustrates and angers me. It is painful for me to watch him struggle, especially when I can tell from his face and from his posture that he is indeed struggling. Even more difficult is that when he cannot come up with what he was trying to say or do, he is not able to move to "Can you help me?" Just silence. Painful silence. So often I have to jump in.

Another situation that I continue to work at monitoring is "When do I need to correct him?" The guideline is "Are babies dying?" Translated this means does the fact that he is not doing something correctly matter? Is he in danger? If not, I try to say nothing. Silence. But often I am already giving feedback when I realize to late, "Not necessary." Silence would have been better.

So recently, after I "mess up" I repeat silently to myself, "Say nothing. Do nothing. Say nothing. Do nothing." Besides helping me calm down I am trying to bring my actions to a higher conscious level so I do not react, but rather act ahead of time. Act before I speak.

At the same time I am carrying on an argument with myself because at times I must "Say something. Do something." It is not fair to him or to myself to always say or do nothing. So I have been looking for a better mantra.

With this Daily Word, I have that mantra:  SILENCE. Working at being silent (and repeating the word "Silence" over and over again) will give me time to think, while waiting to see if I have to jump in. This is the answer to how I might handle myself when these occasions arise.

At least for now. At least until the game rules change again. I'll let you know how it works.

(As I usually do when sharing a Daily Word post, I have revised the thoughts to reflect my spirituality.)

About Daily Word | Pray | Affirmations | Articles | Search Archives | Subscribe | Shop | Donate Saturday, December 24, 2011 SILENCE In the Silence, I am strengthened and renewed. Before I begin my day, I rest in the silence of the morning, close my eyes and breathe in deeply. A smile comes to my lips as I feel the loving presence of God life. In silence there is power, depth, beauty and strength. I can never be alone, for God love and life dwell s within me. Silently, my prayers thoughts go forth to bless send love to a dear one, and silently, I meditate upon the joy within. It is in the silence that God strengthens my faith in life and in myself and fills me with courage. In the silence are born new aspirations, new inspirations and renewed faith. In the silence, I walk and commune with the my indwelling Spirituality and rest in God's life's sustaining love. Peace, be still. I am in the presence of the Almighty. In glorious wonderment I travel on holy ground. I experience myself both inward and outward, during calm times and during turbulent times, and know that both are signs that I am alive as I travel life's path and that all is well. Be silent, all people, before the Lord.--Zechariah 2:13