What Does It Mean?

This paragraph was taken from our friend Jan's BLOG,  Shards, Scraps, and Snippets. It so eloquently asks about what it must feel like to loose one's ability with language. Thank you Jan.


What does it mean to not have words, especially when one still has intelligence and clarity inside? How hard it must be to lose them. Can we still think without words? Or perhaps, how does our thinking change without them? Our words define us, create us, demonstrate ourselves to the world. They are manifestations of our personalities, of our dreams. Without them, we are without specifics and nuance; without them we can only respond in broad strokes and simplifications. But maybe that is the point. Maybe lacking words forces us to pull from deeper places inside, from those places that have no words to explain them anyway.


I would add that perhaps lacking words forces us to slowly pull away from life as we face that place where we will have no need for words. Is that not nirvana? Is that not enlightenment? Is that not peace? Is that not death?


Click here for Jan's Blog

Happy Thanksgiving

I Choose Joy

"I am an avid reader of "The Daily Word" from Unity Temple, a positive approach to spiritual living. You can find out more at this link: Daily Word, Unity

Most often, the day's reading is exactly what I needed. I have to be honest, I am not sure that I believe in GOD in the religious sense of the concept but think there may be some form of a Spiritual God and therefore Unity has always "spoken" to me. When reading a day's passage I am apt to skim over the references to Jesus, God, etc but the strong message always comes through. See for yourself!

Today is Monday, November 22, 2010. The reading in Daily Word is called: "I choose joy." I have recreated it here with a few changes (mainly omitting references to God.) It was meaningful to me this morning especially after a series of extremely difficult exchanges with Gregory right before bedtime. My loss of patience affected me so that I could not apologize, ignore, or sleep well. I just had to get through the night, which I did. This morning I am back to "normal" or as I like to call it "even" since "normal" will probably never be part of my life again!

"The greatest joy of an abundant life may simply be the ability to choose my responses and create a life of fullness regardless of any outward appearance or situation. In the midst of any circumstance, I can choose to be happy and joyful even as I respond to the needs of the moment.


"I choose to rejoice in the good in my life, giving thanks for a world of plenty. Looking beyond seeming lack and limitation, I recognize the spiritual abundance that is present.


"I choose to express generosity and gratitude towards others, and life becomes more precious and abundant. I choose the joy of living in the fullness of good right now.

Blessings

God bless Mr. Hot Water!

God bless Mr. Shower!

I usually bless the bliss of taking a hot shower. After a hard day, and sometimes not, stepping into the shower feels so good. Hot water, almost unbearably hot, streaming over one's head and down ones back feels sooooooo good. The large shower stall with its sliding glass doors, ample water pouring out of the shower head never going cold, the smell of the soap and shampoo, the thick clean towel waiting just outside on its hook, what a lot to be grateful for.

When you take the time to notice the wonderful things around you that make up your every day life, and when you are grateful for them, the difficult things seem less difficult. Laughingly, "It could be worse."

Sometimes...

"CAUSE/EFFECT" and "EITHER/OR" abilities do not always work for Gregory OR sometimes they do but I am not sure what CAUSES this thinking to work OR not. Is that clear?

If you do this THEN that will happen.
"CAUSE/EFFECT."

Make a choice of EITHER this, OR that.
"EITHER/OR."

If you push this button it will CAUSE the microwave will run for 1 minute.

You can cook the leftovers for EITHER one OR two minutes.

If you click the mouse, it will CAUSE the e-mail will be sent.

After you read the e-mail, you can EITHER save it OR delete it.

When it is cold outside it CAUSES you to wear a heavier coat.

You can wear EITHER the leather coat OR the down coat.


I always wonder if it is easier for me to make the decision OR to try to CAUSE him to understand what needs to be done. But I do not want to CAUSE him to feel bad OR be upset. Go figure.

Home for the Holidays

The holidays have always been an important part of our life. Thanksgiving, Christmas, and New Year's Eve are the big ones. July 4th is important not only to our nation but it also is Gregory's birthday. He will be 63 next July. We try to celebrate all holidays with family and friends. Gregory still enjoys being with people and doesn't seem to mind crowds, so we "entertain big." 

Naturally I have taken over all of the responsibility for planning, shopping, preparing, and serving any meals or appetizers. We just recently had our housekeeper help at a large party, it worked well and helped me a lot. Gregory helps when possible with some of the prep, for example: peeling the potatoes, washing the vegetables, any easy repetitive activity. Also he will join me in the kitchen as I prepare, sitting on the stool at the counter and watching the process as we talk and share. 

During the parties I keep an eye on him to make sure he does not become overwhelmed by the activity or noise. If he does get upset, we go off to the bedroom for a while until he calms down. I'll ask him how he is doing and if he is having any difficulty I am able to suggest alternatives that might make it easier for him. We have never gotten into a situation where his behavior becomes inappropriate.

The biggest trick here is not to wear myself out with all the work involved in giving a party. I will try to do the food purchase and prep a day at a time to be ready by the end of the week when the party takes place. I plan a good but easy meal, let COSTCO or Trader Joe's do most of the work. At some point I might turn to a catering service.

When we do spend time at friends' or family's' homes, I am able to stay close in case he becomes disoriented or in need. Our family and friends are all very supportive of Gregory and his situation. I go out of my way to keep them informed of his "progress" and they do well in their communication, interactions, and expectations for Gregory. If necessary I am able to gently intervene and help him save face.

The good part of Christmas is that I have always purchased gifts for Gregory he has always alowed me to purchase gifts for myself FROM Gregory. So I know that I will still be getting some very great gifts, the ones that I ask Santa for.

A Beautiful Day

For me a good day is when the expectations and interactions of the day are such that no major or few confrontations take place. Even with my lowered expectations for Gregory I get frustrated and/or angry. Angry at ALZ, but none the less the emotion that shows is anger. 


He is so often "normal" that when the ALZ "flairs up" I forget and respond as I "normally" would based on the expectations of pre-ALZ days.  Or I misinterpret the situation and react inappropriately and with frustration. Then I feel bad at making him feel bad. One of my major goals is to allow him to feel whole as much as possible and during these difficult episodes I am not at my best. 


On the days he is successful in most of what he attempts, most of what I request him to do, and most of our interactions, I feel like it has been a "good day." On a "bad day" I try not to beat myself up too much but rather work harder at being patient and supportive and aware of his needs and his "state of the moment."

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.

Shopping for Clothes

Not an easy task. At least not as easy as it used to be. Gregory and I were on a walk and when we saw the 45% off sale at our local GAP, spontaneously decided to go in to see about a few pair of jeans and some shirts for him. G couldn't remember what jeans he had at home, if he needed more, which style he might want, which color blue or black, classic, boot, tight, loose? Too many decisions.


So I decided that you can never have enough jeans and we would buy a few pair. Meanwhile I was in charge of remembering what size G wears in waist and length. He remembered that he prefers solid jeans and not the washed out/faded type. He tried a pair on, good in length but too baggy in waist. The clerk offered to get a size smaller.


The store didn't have a size smaller so she brought jeans that were two sizes smaller. While it seemed to fit, two sizes smaller made me nervous so I had to make an executive call and say "NO." Hard to tell from looking if the pants fit, if he understood my questioning, or if he will let me know in a few weeks that the pants are uncomfortable. He sat, twisted, and put his hands in the pocket but was not able to convince me that the pants were a good fit. So no jeans.


We did buy three flannel shirts, I was convinced that they fit well because they were not too loose and not too tight and his arms didn't poke out like sticks (he is tall remember.) He didn't have to make any decisions but did confirm that he liked the colors.


As we were leaving the store, paid goods in a shopping bag in hand, I realized he didn't have his coat. We checked the dressing room and it was no where to be found. The clerks helped us search and found the coat on a pile of "return clothes" behind the counter where he had left it while I was paying the bill. Relief. The clerks in the store know our situation so we are comfortable in acting overtly gay, overtly lovers, and overtly "mother and child."


Next stop, new shoes. Oy!

This BLOG is Especially for You!

A little late for a Halloween type threat but I KNOW YOU ARE OUT THERE. I know that you are viewing my BLOG because the number counter keeps going up. BUT, I don't know who you are and that is making me nuts. PLEASE, PLEASE comment. It's easy.

Under the entry is the word "comment." Click it, and leave your comment. You can "Sign in" from the list offered or just sign in as "Anonymous." You do not have to leave your full name if you choose not to. Just leave your initials so I know it is you. Would love to hear from you.

Don't forget I KNOW WHERE YOU LIVE.

Bon Voyage Party: Revisited

I am posting this on my "Alzheimer's BLOG" as well as my "Writer's BLOG" and adding this preface. Throwing parties becomes more and more difficult as Gregory's Alzheimer's progresses. I end up doing all of the work. Last holiday season, I did MOST of the work but by now I am doing ALL of the work. Today I asked him to help peel the yams and he could not figure out how to use the potato peeler. With a little instruction he did finally figure it out but the process of peeling a dozen yams took what seemed like forever.

I am not complaining about how much work it takes on my part to entertain. But I do want to share with you why I do it. Gregory still gets such joy out of having people around him. Our friends are a chatty group and he can be a good listener. The loud volume and speed of conversation (even thought he is on the periphery) invigorates him. Everyone in the group is aware of his situation and they are good at being patient when he is trying to add to the conversation. 

When he wants to take people around to show off his oil paintings (which is a newly acquired activity) they are interested and exited for him. He enjoys helping with the few party preparation things he can still do. He knows I enjoy the work of giving the party and he knows that I do it because I love him. He makes sure he lets me know how grateful he is to me for doing all these things to help our life continue to be a vibrant, meaningful, exciting one.

• • • • •

HERE IS THE ORIGINAL POST:

This evening's party was quite a success. It took a lot of energy, shopping, preparation, and planning spread out over the last three days. It will take another two to get all the dishes, glasses, etc back where they belong.

The occasion was to celebrate Regina and Declan's  upcoming wedding that will take place in Italy. Three other friends will be joining them there for the ceremony and then staying on in Italy for two months. One more will join the group over the Christmas and New Year holidays. After some thirty years, the Gay Family will not be together for the major end of the year holidays so it was wonderful to be with everyone before the Italian adventures began.

On arrival white and red wine and soft drinks were served. A tray with two types of salsa and chips as well as one of crackers with two types of cheese were available. The 100" table (that usually serves as Gregory's desk) was set, including flowers and candles, still against the wall where it usually lives, to be moved into the middle of the room when it was time it eat. The end of the counter was set for four more and a table for six was set and waiting in the bedroom closet to be brought into the living room at dinner time. Folding chairs were at the ready.

We did a sit down dinner, served buffet style for twenty people. Arrival was scheduled at 4:00 with dinner served at 5:00. The timing on the food was perfect. The corn pudding was in the crock pot from 1:00 until 5:00. The spiral cut ham was in the oven from 1:00 until 4:00 and then sat until dinner time. The pre-cooked turkey breast was warmed from 4:00 until 5:00. The haricot vert (french green beans) provincial were cooked yesterday and warmed in the oven from 4:00 until 5:00. The yams were peeled earlier today and cooked in brown sugar and orange juice between 4:00 and 5:00, and finished off in the microwave. Bread was warmed in the oven with the other 4:00 - 5:00 items. Roger made a cranberry horseradish moose and combined the Romain, lemon, olive oil, and kosher salt making a Tuscan salad. By 5:15 everyone was seated and enjoying a delicious meal. Gregory and I were so proud!

A milestone at this party is that Ivanca, our housekeeper, was here to help with last minute prep before the party, to take coats and serve drinks, and then to pour water after people were sitting. She joined us for dinner and then worked throughout the rest of the party cleaning up. What a blessing and valued part of our family she is.

Dessert consisted of a chocolate Devil's food sheet cake, double layered with chocolate moose in between, and with chocolate butter cream frosting. Huge pieces of cake were served with vanilla ice cream. People commented on how huge the cake portions were … but ate it all. Only Regina shared her cake with Declan but that is understandable as she said, "I do have to fit into my wedding dress you know." Finally, more wine and coffee and visiting.

Parties like this are not done too often. The labor and energy toll is extensive. The expense wasn't even calculated. But being able to "share the love" with people you care for in the "sanctity of one's home" is such a joyful gift. We are grateful for being able to have done this.

Feedback

This is an e-mail I received from a fellow "Ragdale Alum" in reply to the e-mail I sent after running into her at COSTO. Hearing comments like these in relation to shared journeys with Alzheimer's are so important to me. I hope that I too am able to remember to give love where ever I can. Thank you Angela for your kind words and please know that I am sending positive healing thoughts to your mom, your family, and to you.
Michael


Dear Michael,

It was lovely running into you even briefly. How nice that you were able to go to Susan's launch--Ragdale is such a wellspring for me and even brief visits fill me with calm and joy.  

Your dinner tonight sounds terrific; good luck with all that. Lucky guests!

I was at COSTCO to pick up a few last minute things for my trip to Manila this Wednesday.  I am going home to take care of my Mom for a few weeks.  She is 75 and was recently diagnosed with mixed dementia (a combination of Alzheimer's and vascular dementia). The progression of the disease the last few months has been quite rapid--we were just there last August to celebrate my parents' 50th wedding anniversary, and already she is a vastly different person. My dad, my brother, and his wife are getting caregiver burnout and I hope to offer them a little respite while there.  My dad has medical problems of his own and needs time and energy to care for himself for awhile.

I couldn't help noticing the link to your Alzheimer's blog below your note.  I did not know this about your partner and I was really sorry to learn of it.  But I am amazed at your compassion and steadfastness.  A quick look at your entries tells me there is much I can learn from you in dealing with my mom's condition.  Indeed, running into you was no accident, but rather an incident of grace.

Again, it was very nice seeing you and I do hope to see you at the Bros. K, poems in hand, one day in the near future.

All best,

Angela 

I'm Working on It

I am getting better at not loosing my temper with Gregory when he does not understand a request or how to do something. But I am not (and probably will never be) perfect. My therapist, Dr. Peter Demuth shared this quote with me and it really applies to where I am in dealing with Alzheimer's Disease.