Nothing More Debilitating

You may have seen a post or two from Abraham on this BLOG. Finally one that speaks to Alzheimer's (although the subject is adult children) "Nothing more debilitating that to care about something you can't do anything about."

But in some ways you can do something about your loved one with Alzheimer's Disease. You can love them all the more, you can be there for them, you can continue to respect them as a person, you can support them, you can help keep them safe, you can provide them with an appropriate environment, you can augment those skills they loose.

You can live in their world although when first reading this it will make no sense until you experience it yourself and when the person you love is so far in the progression of the disease that living in their world makes sense, is obvious to you, and is really the only thing you have left to do. It took me most of ten years to learn how to live in Gregory's world.

There is really a lot you can do! You just can't change the insidious nature of the disease.

http://www.abraham-hicks.com/lawofattractionsource/index.php

To Breathe, To See, To Live

The Gregory we know and love only exists in our memories now. He is still handsome although seems older. He is still playful although on a simpler level. He responds and replies but at a lower level.

His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.

He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.

He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.

He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.

Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.

I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears,  to live for the loss.

The following is an e-mail to Gregory's new companion. We are excited about his joining us and are hopeful that it will work well. In the beginning, the key to success is lots of communication between me (the employer) and the companion about what to expect as well as how things go when with Gregory (the client.)

A

Enjoyed dinner with you last night. 

In the beginning you and I will be communicating a lot about how to work with Gregory. As I mentioned it is important not to talk or whisper behind his back. I mentioned that in the beginning after each time you are with Gregory, I'll walk you to the elevator "to get the mail" and we can check in about how the day went. You should feel free to ask questions and I will fee free to inform and comment. Also feel free to e-mail me afterwards. 

You can text me when with Gregory and if I do not respond within a reasonable amount of time please follow up with a call. Sometimes I do not hear the text "ding." 

Not knowing how to handle a situation isn't as important as discussing how it might have gone. 

Primary is Gregory's safety followed closely at hand by his happiness/contentedness and all done with respect. I know you understand that but want to mention it again.

Things you can do include:

going for a walk in the neighborhood, on campus, to the lake. You need to keep an eye on how he is holding up, especially in hot weather, as he is not able to monitor that for himself. There are small metal water containers in the refrigeragtor with a belt hook. Please make sure he takes one when you go for a walk (and also that he doesn't put it down accidentally on a bench and leave it behind. Those buggers are expensive.

browsing Barnes and Nobel.

5:00 coffee and cookies are a must. (I'll show you how to use the coffee machine.)

going to Starbucks for his 5:00 coffee.

swimming downstair as LA fitness. (I'll walk you through this.)

working together on a LEGO building or on a jig saw puzzle.

looking through books/magazines (by himself or sharing them with you.)

listening to music. (I'll teach you i-tunes)

sitting on the balcony or going down to the roof top garden.

whatever he wants to do by himself. 

take a nap (you can also!)

watch TV or a DVD

any other ideas you may have (be spontaneous or check with me.)

NOT OUT OF THE NEIGHBORHOOD

You do not have to occupy his every moment and should feel free to work on your own stuff now and then. I'll give you the wifi password so you can get online. Just quiet time together can be wonderful.

Ask now and then "Do you have to use the bathroom?" especially when you are about to go out for a walk.

When you look through books or discuss buildings you probably know by now that he is not too good with language. The ideas and knowledge are all there in his head but he cannot get the words and/or associations out for proper communication. 

One idea is that you can comment on what you see and he can confirm. Be careful asking too many questions because he cannot process or communicate and that may lead to frustration. I find that our best days are ones that are somewhat zen, just being one with our environment and place. I'll comment and tell my stories AS WELL AS his.

I'll let you know when we are ready for a cooking adventure with you and G shopping and preparing dinner. First I'll "walk you around" the kitchen and show you where things are.

Not sure if you'll encounter this but if he becomes concerned about something you might say something like, "We'll talk to Michael about this later." or "I'll check with Michael." or "I am sure it will all work out." I have found that white lies, distraction, and redirection also help.

I am sure there will be more later 😄

m

A Miracle of Choreography of Heart Space

Reproduced from a post by close friend Jan who in turn pointed people to my blog. So if you find you are going in circles, STOP :-)

We were out tonight with long time friends (35+ years?), eight of us in all. GM (I have written about him before), one of the eight, was diagnosed with early onset of Altzheimers about 10 years ago and has progressively lost his words as well as a reduced ability to perform simple tasks including getting dresssed and eating. Some gifts were exchanged before we all walked to the local Chinese restaurant for dinner. GM’s partner asked him to take the paper and plastic to the recycle at the end of the hall near the elevators. GM looked confused and I said I would walk with him. In the hallway I asked him how he was feeling. He stopped and said, “I feel so…………” and then there was a long pause which is not unusual in his speech as he tries to locate words, “…………..happy.”

And then his eyes filled with tears and of course, then my eyes did too. I rubbed his back and said, “It sounds like you are more blissed out than happy.” He smiled. “Not many people are so lucky.” He nodded. We continued to the end of the hall to the recycling and worked our way back to the apartment.

Later in the evening I shared this little interlude with his partner, MH. He said, “I guess I’m doing a really great job.” Then his eyes filled with tears.

A caretaker’s love is often in tension and stressed. For GM, life can be a kind of nirvana though there is often frustration for him too. Balancing all this for the well being of both the caretaker and the one being cared for, is a miracle of the selfless choreography and capacity of heart space. While the unraveling relentlessly advances, I continually marvel at MH’s ability to create a safe and rich space for GM, even though it may come at some or great sacrifice on MH’s part. I am humbled by the depth of relationship and complex intricacies of the dance they share.

MH has maintained a blog about GM and the progressive manifestations of his Altzheimers. You ought to check it out. It is raw, genuine, and incredibly inspiring.

There Are Good Days

Try as I might to post about the good days, it is most often the bad ones that send me to my computer to contemplate, to process, to poeticize.

So when you see a string of posts, you can probably guess that the marry-go-round is spinning wildly out of control.

When you see a string of NO-posts, you can probably assume that for the most part things are mostly under control and I am coping.

Under any of these scenarios you may assume that Gregory feels content, happy, and safe.

As he signs off each evening, reading aloud the words I printed on a Post-It from a poem called "The Enlightened Heart:"

SIMPLICITY, PATIENCE, and COMPASSION." 

These are his guidelines and my aspirations.

A Recurring Theme

If you have been following this BLOG, or the events in Gregory and my life, you may have noticed that there seems to be a recurring theme: Expect Less, Love More.

As the disease continues to play havoc with Gregory's brain (I can actually picture the cells being destroyed one by one and the brain connections being snuffed out one by one) my learning curve and the progress of Gregory's Alzheimer's continues to present new, and different, and unexpected, and unfathomable experiences for me.

My goals are to do the best I can to keep him content, healthy, and safe. A sub-goal is to help his life be meaningful for him, to help him keep his dignity, to help keep him useful so he knows he is needed.

My goals might also include the same for me, especially keeping my mind and body healthy. I have to admit that while I know the importance of these personal goals about me, and while I do work at them, they do suffer.

As the changes continue to take place, sometimes at an accelerated rate, new levels difficulty in accomplishing my goals for him seem to come into play. For example last night there were several instances in which he was unable to follow very simple, one step directions.

They were based on easy to do (at least in my mind,) basic, up until now successful skills for him. One was to put cup cake papers in the cup cake tin. Another was to fill the dinner water glasses again for use at bedtime. A third was to pick up the cat's food for the evening.

Another example just happened as I was writing this BLOG. While he still seems able to us the computer to read his e-mail, see the day's news, and play an online game with Ken ... the computer and its use entails such a complex set of skills that he usually get confused and comes to me for help.

This time he was looking at the TRASH list of his e-mail, not today's e-mails. He was asking for my help but I didn't know how to help. The possibilities of why he needed help were so numerous that I didn't know where to begin. I didn't know how he ended up being in the TRASH. Explaining what was going on would only serve to confuse him. Asking questions to try to figure out how he got himself "cornered" only serves to confuse him more. Asking what he did just before he asked for the help is no longer part of his memory.

Last night was so frustrating that each time  I just asked him to stop helping and I took over. His feelings were hurt but I knew that if I tried to explain what was expected, or how to do what I requested, he would only get more confused and I would get more frustrated (read angry.) So I just gently said, "Never mind honey, I'll do it." But he got his feeling hurt anyway.

It was then that I realized that currently, in many things, my helping him has  become a choice between hurting his feeling less or hurting his feelings more. Let me repeat: hurting his feelings less or hurting his feelings more. Less is the obvious choice but non-the-less it hurts his feelings. So I cried.

Until now I have held the belief that in an effort to help him keep his dignity and sense of usefulness, it was worth the frustration, aggravation, and sometimes anger that I suffered when he could not follow through.

I no longer believe that it is worth my frustration, aggravaiton, and sometimes anger and especially not my emotional and physical health, when he cannot follow through.

So I will need to analyze each request for help more carefully and judge by his chance of success to determine if I even want to ask for help in the first place.

I will need to ask less, expect less, and love more. Him and myself.

He came to me to sooth my upset and said, "You can't always be perfect. Neither can I." So I cried more.

If I haven't already given you an idea...

If I haven't already given you an idea of what it is like to live with someone afflicted by Alzheimer's here is yet another story. (I'm being light with this opening. Don't take offense. It cheers me up and makes me feel like I am "joking" with you.)


After dinner I retired to my computer. Gregory was cleaning up, there wasn't much for him to do as I try to keep up with washing and putting things away as I go along in my cooking. He called me in a short while later saying, "Michael, something is wrong." I stopped what I was doing and went into the kitchen. I have learned not to get too excited or too upset until I know for sure that something IS wrong."

He had finished all the cleanup and was wiping down the sinks. One is a regular sink and the other is a smaller prep sink that houses the garbage disposal. Each drain in both of the sinks is covered with a stainless ringed, rubber holed basket that keeps the garbage from going down the regular drain and from going down the garbage disposal drain until you are ready.

Both sinks were fairly clean, the stainless baskets were on the counter to the left of the sinks. He pointed at the garbage disposal drain opening and said, "Something is wrong with this." I asked what he meant. "I don't know, something is wrong with this." I asked him to try to tell me what he thought the problem was as I didn't see anything wrong. He poked his finger at the disposal hole and said, "This." "This." "This. I am used to it up to here." and he placed his hand at sink level.

I took the stainless basket, put it in place over the drain and asked, "Does this look better."

"Yes, I am home now. Thanks."

So my thinking goes like this: Is this what he really meant? Did I help him figure out what was troubling him or did my inquiries only confuse him more? Is it because he did not see the stainless basket? Is it because the hole in the disposal is dark and he couldn't tell what was going on down there? Is it because he forgot what the stainless baskets are used for? Will he remember not to put his finger or hand into the disposal while it is running? Will he throw the baskets in the garbage like he has done previously? Will he know how to clean up after dinner tomorrow or will I step in to help. Should we do more things like this together so I can keep an eye out for problems? etc etc etc

To be continued... (I am sure.)

Alert 1

Well, I've done it. "I've fallen and I can't get up." Read on...

As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.

Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...

Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.

So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.

When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"

I answered, "Yes I am testing the system."

"Am I speaking to Michael?" (On their records because I am listed as the "primary user."

"Yes."

"Is Gregory alright also?"

"Yes."

"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."

Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.

Well Held in the Arms of an Art Angel

"Gregory's images are amazing. And how well-held he is in this creative and alzheimer colored journey. I love you guys. And Nancy too for being the art angel who has magically entered your lives."


This response, from our friend Jan, so moved me and so sums up Gregory's relationship and interactions with Nancy Rosen, artist and friend, who has inspired and coached Gregory in the use of oil paints as an art form. She truly is an "Art Angel."


And I judge my success at "Well Holding" Gregory by the measure of how happy, content, involved in life, and safe he feels. Life is good.