This post at DailyOM is a well written look at the gift of being able to care as a guardian for someone.
http://www.dailyom.com/articles/2015/49850.html

September 27, 2015
Acting as a Guardian
Just Being There
by Madisyn Taylor

To act as a guardian to somebody during a difficult time is a most beautiful gift of support.

One of the greatest gifts we can give another human being is to act as their guardian. Whether this gift is related to a specific situation or is representative of an ongoing commitment, we each benefit from the association. To protect someone is to walk with them in challenging times and see them through safely to the other side. In doing this, we grow with them. And those under our guardianship derive confidence from our support and assistance, enabling them to persevere through almost any conditions. 

There are many reasons we feel inspired to serve as guardians to those we care for. Sometimes just holding the space for somebody allows them to do what is necessary to grow or heal. We may simply want to see that our friend or loved one is taken care of and equipped to prevail over difficult circumstances. We may also sense that we are in possession of knowledge our loved ones are lacking yet need in their current stage of development. Our offer to serve as a guardian may also be both unsolicited and unrelated to any one situation. Instead of helping someone we care about cope with a specific challenge, we may find ourselves providing them with a more general form of emotional sustenance that prepares and strengthens them for challenges yet to come. 

Our ability to empathize with those under our guardianship is our greatest asset because our comprehension of their needs allows us to determine how we can best serve them. Even when this comprehension is limited, however, the loving intentions with which we enter into our role as guardian ensure that our care and protection help others grow as individuals while living their lives with grace. 

Training the Trainers

Thanks again to Kate Swaffer http://www.kateswaffer.com for sharing Damien's post.

Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers. 

I am reprinting part of it here, you can click through to the entire post using the link below.

Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer's) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.

Seeing Demien's suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I "did" to Gregory with or without realizing. It also showed me those things I was careful NOT to "do to" him.

While my first thought was "it was done with love" (which made me feel better) and my next thought was  "it is only human nature" (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved. 

Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.

They might answer the question you're about to answer.

They might talk over you

They might point out your mistakes

They might correct you

They might talk about to others when you’re there.

They might speak too quickly for you

They might interrupt you in full flow

They might dismiss what you say as untrue or false.

They may patronise you.

They may frequently undermine you

They may expose you to failure just to show others they’re right.

They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.

They may control you

They may disempower you.

They may blame you for your dementia

They may tell you off

They may treat you as ‘full blown’ from the moment of diagnosis.

They may hide things from you.

They may contradict you

They may try to rip you off or deceive you

They may ignore you.

They may take away your independence.

They will frequently test you

They may exclude you

They may shout scream or cry.

They may humiliate you or make you feel a burden, when offloading about how stressed they are.

Read the full article by clicking here.

Goings and Comings

Yesterday Ivanka, our housekeeper of 8+ years who is returning home to Bulgaria, and I visited Gregory so she could give him her love one last time. In many ways it was painful because he just stared at her, with what I interpreted as a frightened face as in "Am I supposed to know this woman?"

Often when Gregory gets a visitor he is more engaged and often will comment something like, "Oh you!" or "Wow." With Ivanka, nothing. Just stared at her then looked away then stared again and again looked away.

I could tell that Ivanka was sad, more at who Gregory is now days since she watched his decline through almost the entire period since his diagnosis. She has become family to us and over time we helped her through the loss of her husband, her brother, her nephew, and finally her mother.

I too was sad at her leaving but tried to stay cheerful and up. As we were leaving the condo to go to Gregory's, she proceeded me out the door and in a gesture which I had not seen before she crossed herself. I could feel her blessing fill the condo and her entreaty to her God to protect both Gregory and me. This is a very good woman and I will miss her very much.

Today Halina, our housekeeper from some 20+ years ago, with a 10+/- year hiatus due to her being stuck as a pedestrian by a car causing her to not be able to work for us, visited Gregory with me.

She will be back as my housekeeper now that Ivanka has left and she will also be a caregiver to Gregory for 2 or 3 days a week in addition to Manny who needs some time off because this type of work his not easy! I feel very blessed to have her back in our life and the timing couldn't be more perfect.

She really understands where Gregory is at this point in time, feels appropriately sad, but also pleased that she can be of help to us. She had worked for us for approximately 10 years and we continued to pay her weekly for a year when she was unable to work. That is what family does you know! We have kept in touch over the years and seen her now and then as well.

She interacted well with Gregory who kept looking at her on and off, not with any frightened look, and eventually he took her hand in his. I am not sure he remembers her but am sure he will get to know and like her as she spends more time with him and becomes known to him as a safe, loving friend who is there to help him.

When he would mumble to her, she responded appropriately with a nondescript, "Yes." or "Oh I see." She talked gently to him but with respect. My gut feeling is that she will do very well with Gregory and also in her interactions with Manny and the other staff at Lieberman. Being a paid caregiver is a fine line between me as her boss, staff as her fellow workers, and really her being somewhere in-between. Manny has navigated this well. Suffice it to say they are the "Good Cops" and I get to be the "Bad Cop" because I am family and that is more appropriate.

So yet another chapter in our life seems to have been arranged by the Universe. Thanks Universe;-)

Dancing With Dementia

This program from Australia was shared with me by my blogger friend Kate Swaffer. She was one of the participants. The program is an hour long (I skipped around) but well worth the watching. It will give you some perspective on what Dementia/Alzheimer's is like from the person with the diagnosis as well as some expert help and a professional look at the disease.

Meeting and reading Kate's blog has helped me a lot to understand Dementia/Alzheimer's from the other person's point of view. As mentioned in a previous blog, Gregory never was able to share what it was like to be going through what he was going through. I could tell from knowing him in our 40+ relationship, from my day to day observations, and from my background in educations and psychology not to mention life in general.

Thanks Kate:

Teepa Snow on Dementia/Alzheimer's

I have seen one of Teepa’s presentations on video previously. Because of Susan's links I just watched 4 more and will finish the rest tomorrow. I am amazed at how much better I would have done with Gregory if I had seen these 5-10 years ago (if I would have been ready to listen that is. Sometimes hindsight is easy.)

I am amazed at how to the point Teepa is, how practical, how “right on!” While Dementia/Alzheimer’s is never easy, she shows that it doesn’t have to be as hard as we make it for ourselves as caregivers and loved ones of people with Dementia/Alzheimer’s!

Thanks so much Susan, Susan Macaulay, Amazing Susan for sharing this!

http://myalzheimersstory.com/2015/06/09/10-teepa-snow-videos-on-dementia-basics/#respond

My Chance to Be a Partial Full Time Caregiver Again

Manny had been out with a bad cold since Sunday which means that I have been covering lunch and dinner for Gregory. I arrive at Lieberman by 11:00 and leave by 6:00 or 7:00.

The time I spend with him is not strenuous but it is exhausting. I cannot imagine the energy and stamina that the RCAs (Resident Care Associate) have to care for their ten charges while I only have one.

But exhaustion aside, I have enjoyed my extended stays with Gregory. Besides helping him with his meals, I have brushed his teeth, given him shaves, combed his hair, massaged his back, watered his plants, refilled his refrigerator, and reorganized some of his dresser drawers, told him multiple times "I love you," fed him cookies and pretzel rods, helped him with copious glasses of water, watched his South Pacific DVD and several cooking shows (he loves both of these the most,) and more.

At his level of ability, at his level of functioning, at his level of intellect ... I love him and enjoy being with him.

Sunday at Lieberman, a Piano Recital of 20 young pianists

Gregory was moved by several of the young performers

I added some new flowers to the top shelf of Gregory's window sill. Do you think I over did it? The plants on the bottom shelf have been there for several months.

All new green plants on the self next to a picture of Julia Child. Every now and then Gregory catches sight of the picture and gets joyful. I then retell the story of how she and he lived in the same neighborhood in Boston and shopped at the same butcher shop. When they were both at the shop they would exchange nicities, weather talk, and discuss the various cuts of beef and what they were going to do with them. She listened to his menus as closely as he listened to hers!

Georgia on My Mind

One of the residents on Gregory's floor is Helen. She is a sweet, friendly, older black woman who is supported on a daily basis by her daughter Shirley and her cousin Georgia.

I try to get to know the relatives who visit often because I am there every day visiting Gregory and this is one way to build community with others in a similar situation.

One thing I have learned from those family members I chat with is that while there are often many brothers, sisters, children and grandchildren available, usually only one or two take on the responsibility of caring for the person with Alzheimer's (dementia.)

I have also seen that those who do take the responsibility see it as "what I do" and discount the absence of the others with a shrug or "What are you going to do?" I do not ever detect resentment or anger, just a continued focus of love for the resident family member.

Georgia and I chat and laugh together a lot. She is now retired but worked at a nursing home for close to 38 years. So she knows the drill and is good at it! Our relationship started when she and I were in the elevator going down to the lobby. "Are you leaving now?" I asked.

"No, I am just going out for a breath of fresh air." replied Georgia. The funny thing, and I tease he for it, is that her "Just going out for a breath of fresh air" meant going out to smoke a cigarette.

During a conversation yesterday about the lack of support from family members, Georgia told me that while Helen has many many children and grand children, only she and Helen's daughter Shirley ever visit.

She summed it up this way, "You never hear from family, but when their ham gets burnt they are at your front door for dinner."

Musings

This Alzheimer's BLOG receives between 50 and 100 hits a day. Out of some 36,000 hits in the four years since its beginning, there have been 265 comments for a .7% reply rate. But you know what, comments are not expected and notoriously absent when anyone who is a blogger is asked about their experience with comments.

As you know, I do not write for the comments. I write to process my grief and my joy, I write to share our situation with friends and family, I write in case my experiences and observations and insights might help others who are grieving.

We all grief when someone we love is experiencing any terminal, incurable illness. But the way Alzheimer's presents itself is more insidious than only a few other illnesses out there and therefore more painful for both the ones ill and the ones loving and caring for those ill.

Periodically I will run into someone who follows this BLOG and they will tell me how much it means to them or what an inspirational role model I am. This happened on Friday when I was at the Lyric Opera of Chicago's costume sale and I ran into one of the women who sings in the chorus. (Thanks CL!) We exchanged no fewer than three meaningful hugs :-)

Again, while I do not write for the celebrity, and while I know I am doing a good job caring for Gregory, it does make me feel good to hear from others who agree. Being a caregiver for someone you love so much is a heavy, lonely occupation and sharing that love with others and hearing their message helps me to feel lighter!

P.S. Over the last 15 or so years, being in 20 or so operas; many of the people at the opera house have become acquaintances, friends, and family at various levels. I appreciate and value them. I keep up with many of them via Facebook. I haven't been able to be in any operas for three or four years as I could not leave Gregory alone but now that he is safely ensconced at The Lieberman Center, I hope to get cast in an opera this season, or maybe next.

Let Other's Help!

When embroiled in the depth of dealing with Alzheimer's Disease, this advice might be hard to hear and hard to put into place, but at least from my perspective, it makes a lot of sense! (Taken from http://www.abraham-hicks.com)

"The Cleaner Floor" A book by I. P. Standing

Men are known to stand while peeing. Women are known to sit while peeing. Leaving the toilet lid up ... or down ... has been debated since the beginning of the flush.

Women also squat, especially in public, filthy bathrooms or in the forest preserve (watch out for the Poison Ivy.) Men have it a little easier in that they can aim the hose and avoid such disgusting situations.

But sometimes, men sit. Yes, you read it here. Gregory and I sit when we pee (at least at home we do.) Why you may ask? And why BLOG about it you may wonder?

First, even though you might think it would be easier for a man to take a fast whizz standing, it is actually just as easy to drop trow and sit to pee. Especially in the cleanliness of one's own bathroom. By sitting you can gain a few moments of meditation time and solitude from a busy day. You can catch up on a magazine article if you choose. On an active day, you can get off your feet for a few moments. And the floor definitely stays cleaner.

The real reason I post this is because with Gregory's change in living situation, and during his stay in the hospital, he had urination difficulties. Couldn't pee? No. His caregivers assumed that he stood to pee so would take him to the bathroom and stand him in front of the toilet. With no results.

Eventually he had to be catherized and they found 500 cc of urine in his bladder. Usually when a person gets +/- 250 they begin to feel the need to pee. Gregory was either not able to communicate this, and/or didn't recognize the signals, and/or didn't recognize what he was to do by standing in front of the toilet.

When I found out about his being catheterized,  I realized  I had not mentioned his sitting to pee. I took that minor fact for granted since it is what we have always done for over 38 years! Once it was established, Gregory had no problem with peeing. Problem solved.

Well solved at the hospital but now at the memory care facility, at times Gregory feels stubborn and refuses to sit when asked to. Also, for a while the staff was not taking him to pee every couple of hours so he found a corner in his room and wet his pants. (I found him behind his room door looking very embarrassed and standing in a puddle. Made me cry.) You know I'll be keeping up with staff on this one!

I have found (as I continue to fill in the cross word puzzle that is Gregory's new living situation at a memory care facility) I have to analyze the details of his life so they can provide more accurately for his needs. Especially since he cannot himself instruct the slew of new caregivers (according to the shift, the day of the week, the days off, etc.)

My new role as secondary caregiver continues to develop. At the first Care Conference with the Head Nurse, Dietitian, and Social Worker we focused on medications, eating, toileting, daily routine, personal grooming, etc. At the next one tomorrow, the topics will include a review of how he is settling in; how staff is meeting his needs as discussed as the previous meeting; a closer look at what kind of activities he will be participating in; schedules for shower, haircut, massage, doctors, etc; switching from a large handful of vitamins and minerals (which he has had difficulty swallowing) to a spoonful of liquid supplements; visiting volunteer opportunities for him, and a few others.

He has continued to be calm (without the sedatives needed when he was at the hospital,) happy, and content. He is living in the moment. Not once has he wondered about why he is there or asked about "home at the condo." He doesn't seem to notice the array of patients on his floor: all of them older, most of them with more advanced dementias, many in wheel chairs, many catatonic, many sleeping most of the time, incontinence here and there. In fact when one calls out, Gregory wants to help. As he roams (strolls) the halls, he smiles at them kindly. He has quickly become one of the favorites of the nurses and staff and they comment on what a lovely, kind, gentle man his is.

And since he is content and doesn't notice that being there is like being in a Fellini movie without the background music, I don't mind it either and am able to see the place through Gregory's eyes. Safe, clean, warm, active, happy!

Flow Free

Through the ordeal of Gregory's psychotic episode and hospital stay, I realized again that no matter how much I love him, the path with Alzheimer's is his and I choose to walk along side him. For a while I became so intertwined with being his caregiver, I felt responsible for everything that happened to him and forgot this separation of path. Now I am walking slightly behind him. Lieberman Center is responsible for his life, his health, his safety, he keep. I am there to help make it a little bit better, to hold his hand, and to figure out my new role as secondary caregiver. The following quote, which I just came across after some 20 years, applies:

FLOW FREE

He gulped on the last few words and broke into sobs again; and, as I did not appear to have it in me to soothe his pain, I did nothing. You reach a point at which you cannot control the event, so you stand aside and let the hurt flow free.

How Long Has This Been Going On? Ethan Mordden. Page 590. 1995.

A Visit With Family

As usual we had a wonderful time during your visit. For Gregory, he loves you lots and enjoys your being here. For me, it is nice to have people around the house with whom I can interact. For some strange reason, it also helps when others can see how Gregory is. 

When I am here by myself, on duty 24/7, I feel unappreciated by life. Not that I need people to "fawn" over me, but having others "experience" it with me, helps! Makes me feel less alone. Makes me feel less "crazy" myself.

So thanks for hanging in there. You both did a great job of "pretending" to understand and agree with his "nonsense" conversations. With open face and interested looks.

As we were falling asleep last night, Gregory was already sawing zzzzzzz's. I lie on my side and watched him thinking how he is so far from the man I used to know and love. Sometimes I lie there and relive various parts of our wonderful life together: milestones, business ventures, travel, family, friends, theater, entertaining, Gregory's architecture, Michael's Museum. 

But at the same time, I am alright with the fact that it is what it is and I love him at each new level. Sometimes it is frustrating, sometimes it is incomprehensible, sometimes it is down right shitty (in all implications of the word :-) But again, IT IS WHAT IT IS, and for the most part, I cope. He seems happy and content. What more could I ask?

Love you more, etc.

P.S. While this was written for you two, I will share it on the BLOG because it is part of the continuing story. 

Two Second Forgetting

Every evening I pile Gregory's slippers,

Sweats, and underwear on the bench,

So he can get himself going in the morning,

Hopefully without my help, my assistance.

Every morning he asks anyway, "Are these mine."

Two second forgetting isn't his fault.

For a while I resented having to reply, "Yes!"

After having gone to the extra trouble,

Having laid out his stuff ahead of time.

Now I just say, with understanding, "Yes."

That makes it easier, without resentment.

Two second forgetting isn't his fault.

Sometimes he takes part of the pile

into the bathroom and for some reason

gets distracted and leaves it there.

"Something is wrong." he will say.

"Yes," I will say. "Look in the bathroom. 

Two second forgetting isn't his fault.

After thinking a few seconds or minutes

He returns to see what he left behind.

Sometimes he finds what he is missing

Sometimes he cannot see in front of his eyes.

With understanding I will get up to help.

Two second forgetting isn't his fault.

Sometimes the undershirt is on backwards,

Sometimes the sweat pants are inside out.

Sometimes things are in the wrong order,

And sometimes in the wrong place!

So I smile. I didn't always used to smile.

Good for me. Understanding is easier.

Two second forgetting isn't his fault.

Two second forgetting isn't his fault.

Start Your Engines

We are on the move again. For about two weeks now, Gregory has not been able to smoothly begin his morning routines. As you know, I am not my best in the morning so this has been difficult for me.

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.

In addition ...

In a previous post I discussed an interesting phenomenon in which Gregory is more comfortable at times to go to Ken, his companion, for help than he is to come to me.

In that post I had wanted to, but forgot to mention that it seems very much like when a child goes to one parent with a question, doesn't like the answer, and so goes to the other parent to see if they can get a different answer. That is probably the reason that eventually when the child asks the mother a question, she replies, "Go to your father," and when the child asks the father a question, he replies, "Go to your mother."

Another interesting thing happened when we were discussing my taking Gregory to the swimming pool after Ken leaves us. I have slowly been "dropping pins" about Ken's leaving for Vanderbilt to continue his studies in psychology so that when he finally has left, Gregory will have had a chance to deal with the leaving.

When I dropped the "pin" the other day, Gregory looked concerned, worried, frightened? I asked what was the matter. "You'll take me swimming?" he replied. "Oh."

"Yes. I'll help you begin and then while you swim I'll do the hot tub or something." Gregory's worried face continued. "Do you want me to be there while you swim?"

Both Gregory and Ken agreed that Greg swims alone once in the pool and doesn't need assistance. Finally, Gregory said (or stumbled,) "Well ... then ... you'll have to come and be there. And Ken will help." In other words, Gregory wanted Ken to show me what to do to help Gregory when he goes swimming. Ironic since I "trained" Ken on what to do for Gregory. I gently reminded him of this, said that we all three could go down a few times, and perhaps that would make the transition easier.

Gregory liked this. He did comment, "You did?" in response to my comment about having shown Ken the swimming procedures. Ken was very supportive and added, "Yep, Michael showed me and I'll show him back. I am sure there won't be any problem.


CLICK HERE to see previous post. Opens in a new window.

It's Only Fair

I am still navigating around having Ken living here with us. While the purpose of his being with us for the next few months is to relieve me of my 24/7 and to provide Gregory with more activity, I still have trouble ASKING for help. So at dinner I asked, "Can you and Gregory go swimming tomorrow?" Sure enough, they are both looking forward to doing so.

Tonight after dinner I announced, "It's only fair ... since I made dinner ... that Ken and Gregory should ..." And they both chimed in, "Wash the dishes." We laughed.

I left the room, did some writing at my computer desk, and enjoyed every moment of overhearing them discuss the process of washing, drying, and putting away the dishes.

The camaraderie between Gregory and Ken is beautiful to watch. And I enjoy having someone to talk to. I only hope I'm not talking his ear off!

Follow Your Heart

Detached Assistance

My horoscope below hits home and reminds me that I am Gregory's caregiver partner because of our love for each other: 1) Not because I need his admiration (or that of others ... but a thank you now and then and recognition by others of the task on my shoulders is nice,) 2) Not because I  need to be needed (although it does make me feel useful and gives me purpose,) 3) Not because I need to nourish my sense of self (although I do need to remind myself now and then that I am doing a good job.)

By helping Gregory, I get a sense of joy and know that he feels more comfortable and safe in his life. I act from my heart as we live each day, am guided by the spirt within, and have pure intentions. Now if I only could separate the EMOTIONAL from the INTELLECTUAL and shorten the reaction time of putting the emotions to rest while behaving in a gentle, respectful, loving way removed from anger, fear, and frustration.

February 25, 2013
Detached Assistance
Aries Daily Horoscope

Assisting others who require your help could make the things you do seem valuable today. It might be that your sense of self-worth is linked directly to the perception of others, particularly as it pertains to the things you do for them. While doing things for others can be positive, you might want to practice separating your feelings of self from the things you do. Should you receive thanks or praise from someone related to something you have completed today, you can take a deep breath and remind yourself that you are the same person you were before receiving the admiration of others. Keeping this in mind could help you detach from needing the approval of the people around you to nourish your sense of self and might make it easier to support others with honest intentions instead of hidden motives of self-gratification.

Learning to help others simply for the joy it brings makes our assistance pure and earnest. Needing to be needed can be a large part of our desire to help people for it makes us feel that without us someone else would have a difficult time getting by in life, which in turn bolsters our confidence in ourselves. When we act from our hearts and with the guidance of our spirits, however, we require nothing in return, since we are accessing the beauty of our souls and using that purity to help, which makes our assistance much more worthwhile. By helping without expecting anything today, you will serve others with the purest of intentions.

Taken from: www.dailyom.com

Some Mornings

Some mornings he wakes up and nothing seems to work.

This morning he ran into problems with shaving. Shaver in hand, he called me into the bathroom trying to tell me something, but never was able to get to it. He pointed at the shaver, and then the mirror and said, "There is a little something."

That is as far as we got after his attempting to communicate several times. I waited patiently, guessed at a few things, and finally told him just to shave, which he did.

A little while later he called me again with the "light bulb" having gone on again, he struggled to tell me what he had realized, and failed again ... another dark communication. We have been up for 30 minutes.

He did OK beginning his shower, I was in the bedroom when I heard him shouting "Help! Help!" I came running to find that he was finished showering and had begun to turn the water off but only did so half way and was standing in the cold stream of water still coming out of the shower head.

I turned the water hot again so he could warm up and then we turned it off together. Actually he did so by himself without any help, just my standing there which made it a little more frustrating and confusing.

Next he struggled to put on his sweatshirt, arm through the head hole and out the sleeve. He kept mumbling, "No that's not right" and continued trying to figure out how to put it on. He sat down on the bed for a while seemingly trying to regroup. I held back and he finally did figure out how to put the shirt on.

We have been up for an hour.

While he was reading the newspaper, I set out the cutting board with his bread and honey and announced, "Your bead and honey are ready." He thanked me and came over to begin preparing his first of the morning food. I returned to the bedroom.

Some five or ten minutes later I went out to see how he was doing. He was standing by the toaster, looking back at the cutting board, and back and forth again and again.

He was unable to connect the toast needing to go into the toaster and the button needing to be pressed. We worked through the process together.

When the toaster was finished and his toast popped up, he asked, "Does that turn it off?"

I am grateful that he sought my help, that he was able to begin shaving and then to finish, that he was able to take a dump without my help, that he was able to shower for the most part, that he was finally able to figure out how to get dressed, that he kissed my head as he left the bedroom and said, "I love you," that he was able to read the newspaper, that he was able to eat his toast after putting on the honey, and that he was able to go back to his newspaper.

I am grateful that I was able to keep my patience, not jump in to help too quickly, that I didn't get emotionally involved, that I was able to move from one difficulty to the next without anger, and that he kissed me on the head and said, "I love you."

I am frightened that we are getting closer to my having to more closely supervise his shaving and showering, physically helping him get dressed, and not only making his breakfast but also toasting his first up before breakfast snack because when confused verbal instructions do not work.

We have been up for two hours.

Conundrum Continued

Yesterday morning, Gregory and I had a discussion (if you know can call it that) about the closet (if you know what that means,) selecting clothes (if you know the process,) getting dressed (if you are able,) and keeping the cats out of the closet (if you remember to do so,) etc.

The conversation lasted about 15 or 20 minutes (if one can measure time.) The whole time I knew I was using too many words and was not sure how much or what he understood. A brief summary of the event is:

Gregory: "I want to go back."
Michael: "You can't go back."

Gregory's morning sweats and slippers are laid out on the bench for him to use after cleaning up. I put them out the night before so they are waiting for him in the morning when he is ready. For a while he used to get them out of the drawer in the closet but I started doing it for him when most often he stood there naked, chilled, looking to me without words, saying "What do I do next?"

He struggled less this morning then he usually does with getting the sweatshirt on; correct arm in correct hole, shirt correctly oriented. Other times he stands there anyway wondering what to do next.

After his shirt was on, while I was sitting at my computer, he came over and went through the hemming and hawing and hesitating that begins our conversations. I stopped working, checked the expression on my face to make sure it looked pleasant, interested, and patient, and waited.

"I want to go back." That was the essence of what he wanted to say.

"I am not sure what you mean?" I asked. Eventually, because he was not able to tell me what he meant and because I could tell he was getting frustrated, I guessed, "Go back to picking your own clothes out of the closet?" The answer was "Yes."

I only wish you could have been here to see the confusion in him trying to express himself. Once I knew what he wanted, I also knew that we could not really discuss the issue because the associations and understandings do not exist. But I tried. I talked slowly and simply.

In as few words as possible, I talked about the problem with the cats chewing his shoe laces. I talked about his struggling with picking out clothes and then not knowing how to put them on. I talked about my not being able to go through this with him every morning. I talked about the "feel bad now or feel bad later" idea. I talked about the problem with Alzheimer's and how that has changed our life. I talked about not being able to go back. I talked to him about doing the best we can.

Eventually he, with great organizational difficulty, said, "You need ... to do ... what ... you must ... that is best for ... me." He cried and said, "I'm sorry."

I told him not to be sorry. At least not for me, that I am OK and I will do what I have to for him. "I am here for you. I will make good decisions for you."

But maybe we can go back a little bit, if we do it together. Instead of my picking out his clothes, I will go into the closet with him, my keeping the cats at bay, and my helping him decide what he wants to wear.

I'll make sure he has the pants, and the shirt, and the belt, and the sox, and the shoes. We will take everything out of the closet into the bedroom, put them on the bench and then I'll say, "Get dressed." The closet will be velcroed shut so he does not go back in looking for something already on the bench.

While I am sitting here at my computer, I'll make sure he keeps on his underwear while putting on his outerwear. I'll sit here and probably write again about my frustrations, fears, and anger. While he is getting dressed just in case he needs help, I'll surreptitiously monitor his behavior while I am typing.

The challenge of telling him (doesn't work,) showing him (doesn't work,) and doing it for him (which doesn't always work) will continue. Why do I have to be human when I want to be super-human and be the most patient person in the world?