Christmas Sadness

Today was to be the day for decorating the condo for Christmas but.. ..A
How can one find the love, joy, and magic in things Christmas.............L
When the only feeling available to me is sadness knowing....................Z
That the prospect for the sadness to change doesn't...............................H
Seem to exist any more as his abilities...................................................E
Continue to slowly disintegrate into.......................................................I
Confusion, frustration and finally...........................................................M
As we welcome death as.........................................................................E
A way back to peace................................................................................R
And quiet and.......................................................................................... '
Rest..........................................................................................................S

After a difficult morning,
Gregory asked,
"When will you be able to have a little time to yourself?"
Michael replied,
"Never again, to be honest."

GONE:
•Unable to identify when he needs to go to the bathroom.
•Unable to identify verbally whether he urinated, defecated, both, or neither.
•Unable to clean up after defecating or messing self.
•Unable to shower by himself.
•Setting up tooth brush with tooth paste.
•Unable to navigate a plate of food.
•Unable to automatically identify and use a knife, fork, and/or spoon.
•Ability to pick out clothes.
•Ability to zip up jacket.
•Ability to answer a phone.
•Ability to help make bed.
•Ability to understand the mechanics of reading a book.
•Helping with any household tasks.
•Being by himself outside of the condo.
•Being by himself inside the condo.
...and more

ALMOST GONE:
•Comprehension of all types: TV show, musical, theater, book, verbal exchange.
•Use of fork to scoop, spear, or cut.
•Correct orientation of shirt and pants when getting dressed.
•Putting on belt and hitting all loops.
•Following simple directions of any type.
•Turning on light switch.
•Remembering to put on face cream and deodorant.
•Showering self.
•Follow through when understanding what to do without instant forgetting.
•Folding laundry. No longer can do underpants and nightshirts. Sometimes not undershirts.
•Taking garbage and/or recycle to the room at the end of the common hall.
...and more

STILL PRESENT:
•Saying "I love you."
•Sleeping through the night.
•Brushing teeth when tooth paste is applied to brush for him.
•Doesn't mess pants too often.
•Laughs.
•Enjoys being with friends.
•Seems to enjoy movies, TV, theater, etc.
•Swimming.
•Long walks.
•Socially appropriate behavior.
•Calm and content.
...and more

Thoughts on a life.

Thoughts on a Life

Perhaps my success is that I have been able to create for Gregory, a life in which he can truly live in the moment, in which his now and his world are all that matter. 

I have organized our life fully and carefully. This gives Gregory a certain sense of consistency  and control and allows me to make sure that what needs to be done gets done, especially because I am the one who has to do it ... all. It allows him to enjoy his life day to day without having to worry about any details.

The purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment. How often have you stopped to think about all the things you do to run your life and that of your loved ones? These thoughts on what it takes for us are mine, shared.

Gregory wakes up, cleans up, and puts on his morning "Sweats" which I laid out the night before. He has breakfast, which I assemble and put on a tray, including cereal with bran buds, fruit, and soy milk; a glass of orange juice; yogurt; a mug of tea; a few prunes, apricots, and dates; a handful of assorted raw nuts; and on alternating days - sausage, Canadian bacon, or tinned fish on crackers. On the days he can, he cleans up after breakfast but usually leaves several things on the counter, not knowing where they go. On the days he cannot, I take over.

Then Gregory sits at his desk spending several hours with the New York Times, which I have arranged to be delivered every day. My idea to do this was successfully based on the fact that Gregory still reads, likes his news, but is no longer able to navigate his computer (we used to get the newspaper on-line.) I kidding call this concept "using a brand new technology" since we have never had a newspaper delivered to our door before this."

Some days Gregory can select what he wants to wear, other days I have to help. He is not easily able to relate a temperature number to the season to what kind of clothing to put on. Sometimes I have to notice that his underwear is on backwards. Sometimes he attempts to put on two pair of jeans so I help him through. Often he forgets his belt which confuses him about where to hook his cell phone and keys.

So far he can still make a large salad for his lunch. I help when he gets confused and on some days clean up after him. Often we plan a lunch out around our errands. He always goes with me because I cannot leave him home by himself any more but also because we continue to enjoy each other's company. I decide what he will order as well as what I will order for lunch (same for dinner out for that matter.) I used to ask: "Do you feel like having meat, chicken, or fish tonight?" That no longer works so I just decide. Usually he "goes on" about what a good choice I made and that makes me feel good.

Recently I put together a process for "interviewing, letter of applicationing, background checking, and letter of agreementing" a Companion to spend time with Gregory. I created a process for this with which I was comfortable and which insured the Companion's, Gregory's and my "rights and responsibilities." Part of this includes a brief history of Gregory's dealing with Alzheimer's, what the Companion might encounter, and how to deal with it.

I currently have two college students acting as Companion, each of whom spends 4-8 hours a week with Gregory. This enables me to get out for a meeting or appointment when I have to leave Gregory home alone but also gives me some free time away from my 24/7 responsibilities, just to be able to go out and "play" by myself or with friends.

The interesting part about having a Companion is that I feel like a mother with a young child having to add to my "duties" scheduling, planning, thinking ahead, dealing with actual and potential Companion late arrivals, illness, cancellations. But it has been working well and Gregory has been enjoying the company of "young blood" which provides a different environment for him than having me around 24/7. So this seems to be working well for both of us.

I plan and prepare dinners at home, set the table, serve the food, dress and salt and sauce whats needs dressing, salting, and saucing. I turn on the music we always have at dinner, deciding Chopin, Beethoven, or Sting. After dinner I clean up, sometimes Gregory will dry, I put things away, wipe and "daily spray" the granite counter.

He will ask, "Can we have a little something?" referring to watching a saved TV show, or a NETFLIX movie. I decide what we will watch and run the TV/DVD controls. I make the popcorn or cut up some fruit to have during intermission. After watching a DVD, I put it back in its envelope returning it to sender.

I select an assortment of chocolates for him to have at bedtime. He loves his chocolates! I suggest when it is time to take a shower. I put out new towels when needed. I point out toothbrush and toothpaste when he gets confused over their use or location. I remind him to put on body lotion and help with the parts he cannot reach. I apply the cortisone treated tape to a few areas on his hand and leg that have begun to show psoriasis.

We turn down the bed together after I have brought our water glasses in from the TV room and put his nighttime meds in a small bowl on his night table as well as putting tomorrows out on the kitchen counter. I pull down the shades, turn off the lights, check the thermostat, make sure the front door is locked, and set the alarm (to wake me in the event of his wandering in the middle of the night.)

We read for a while and then lights out. Sometimes he can figure out how "on/off" works and other times I have to pop out of my side of the bed to go over and turn off his lights. The nice ending to every night is that we fall asleep together holding hands.

Of a day, bills are received, reviewed, and paid. Mail is collected, sorted, and handled. Same with e-mail. Birthdays are remembered as are important anniversaries of family and friends. Great nieces and nephews and God-Children are gifted on their birthdays, at Christmas, on graduation, at confirmation, when bar (or bat) mitzvahed, and eventually will also be gifted if they choose to marry and have children.

Household equipment is maintained, serviced, repaired. Walls are washed, erased, or touched up with paint. Clocks, thermostats, and timers set. Laundry sorted, washed, dryed, folded (sometimes Gregogry helps with the folding but I have to double check because he mixes up the variously sized underwear and sox.) Our housekeeper is instructed, directed, and at times corrected (we are grateful for her help.)

Refrigerator, pantry, and larder are stocked and a running list created so everything needed is remembered. When one thing is used up, another is in waiting, and when taken off the shelf has its name added to the running shopping list. Meals are planned executed and eaten. Dishes are set, cleared, washed, and stored.

Friends are e-mailed, telephoned, chatted with, entertained, joined for dinners out. Parties are planned, invitations sent, R.S.V.P.s received, menus planned, food purchased and prepared, buffets set, food replenished, drinks poured, dessert served, clean up accomplished. When we get together with friends, I tell my stories and I tell Gregory's stories. He enjoys hearing his stories told since he cannot manipulate the words to tell them himself.

A pair of reading glasses has been located in each room, labeled for ease of redistribution when Gregory inadvertently looses or moves them around, and new bedtime books selected when he needs a new one.

Doctor appointments are made, symptoms checked out, lotions applied, cuts covered, bruises watched. Dentist cleanings, eye examinations, skin doctor, neurologist appointments made, driven to. Information is discussed with doctor, results listened to, actions for the future remembered and taken as needed.

Again, the purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment.

•  •  •  •  •

When he wonders about later today or tomorrow, he asks as well as he can (language difficulties considered,) and I tell him again our plans. He will reply with "Oh Goodie" or the like. Often he asks again or is surprised when the plans take place. This periodic wondering seems to be enough for him when it comes to regarding the future.

The past comes up now and then. It is a little more complicated as usually it causes a guessing game about what he is trying to remember. After thirty five years of living with and knowing him, we usually are successful in remembering. Sometimes, not!

Perhaps my success is that I have been able to create for Gregory a life in which he can truly live in the moment in which his now and his world are all that matter. The problems and confusion of dealing with Alzheimer's Disease/Dementia arise when I ask him to live in my world or our world. Sometimes he tries to live in our world and then stumbles, feels confused, and sometimes gets frustrated when he realizes that he is no longer able to do so. I am continuing to learn how to avoid this but am not always successful. I am continuing to learn how to live in his world but am not always successful.

Things he knew how to do yesterday, he does not necessarily know today, and may or may not remember tomorrow. I never know what to say or not say, to ask or not ask, to wonder or not wonder. I never know if he understands what I mean when I ask him to help me with something. Using words like above, below, in, out, over, under, etc are a crap shoot. As mentioned in a previous post, I do not know which is worse: when he doesn't understand something or when he thinks he understands something. 

Life continues to be a thin, thin line between trying as much as possible to live our life as normally as possible ... or better ...  to help him live his life as it is normal to him. Life continues to be a thin, thin line between treating him like a five year old while at the same time respecting him as the 64 year old adult he is. He senses the difference and when I am able to do so successfully he doesn't mind. When I am a little impatient, he gets a little short with me. Can you blame him?

Every night before he goes to bed, he recites aloud the three words he read in a poem and had me print on a post it to put on the side of his night table drawer: Simplicity, Patience, Compassion. As I hear his repeating his mantra, I recommit myself to being as good of a caregiver partner as I possibly can be.

What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!

Fear of Reaching Out

We had a bedtime tiff again

A loss of the usually known,

There was no energy left to cope,

Not able to process and forgive.

So as I turned off the light,

And turned on the quiet tears,

I hoped he would not notice,

But missed his caring comfort.

I could not reach out as usual

To hold his hand, "Good night."

So afraid that he had also forgotten

How to nightly reach out to me.

Followup: Gregory Trying to Live in My World

Yesterday afternoon, my hand covered in potting soil, I asked Gregory to get me a garbage bag. He didn't know what to do. I got the bag myself. "This is a garbage bag," I said. "Oh, thank you," he said.

Last evening before going to see Camelot, we went out for a sandwich. I put an unwrapped sandwich in front of him and one in from of me. He pointed at his sandwich and asked, "Is this one for me?" "Yes." He thanked me.

Last night at the performance, Gregory forgot how to use the urinal. I tried to show him (in front of three other men at the other urinals and a long line behind us.) I finally took him into a stall, helped him lower his pants, made sure he was aiming correctly, and said, "Go." He thanked me.

Today getting dressed, Gregory forgot how to secure his belt. I showed him. He thanked me.

On our way out of the door to the car Gregory picked up his sunglasses. I explained, "You don't have to take those. You have a pair of sunglasses in the car." "Oh, OK." I turned off the lights and we left. Once in the car I noticed he still had the sunglasses that were in his hand. "We always keep a pair in the car for you," I reminded. He thanked me.

In the car I asked, "Are you hungry?" "Yes, very," was his answer. I handed him an energy bar and he replied, "I don't need that right now." He thanked me for bringing it.

This afternoon at a neighborhood carnival, Gregory forgot how to eat a Corn Dog. I explained, "Pick the dog up by the stick and bite the other end." He proceeded to pull the stick out of the hotdog. I put it back in and demonstrated how to eat a corn dog. He thanked me.

These are just a small percentage of the interactions gone awry over the last two days. There is one thing is am very grateful for. Can you guess? He thanked me.

The Getting Dressed Incident

We now have two companions who spend time with Gregory and that does make it easier for me to have some time to myself and to get away to meetings etc. Companions present their own problems and more work with scheduling, training, solving minor issues via text or phone, having a stranger in your home, trusting someone else to do the job that in your heart you feel only you can do but learning to "get over it."

Living with him continues to be difficult as I continue to try to learn how (after 35 years, can you imagine?)

Yesterday we were getting ready to go to a party and I thought I solved his "Getting Dressed Dilemma" problem by picking out what he would wear and laying it out on the bed (in the order one would put the clothes on.) My fatal mistake was not taking the blue jeans and shirt he was wearing from him when he took them off.

He got "Shirt Confused" and "Pants Frustrated." After taking his current clothes off, he put his new shirt and his black jeans on. Tried to put his blue jeans on over the black ones several times. (I just waited.) Then he took off his shirt. Tried the blue/black combination again bear chested but that didn't help. I finally had to help walk him through the "Clothing Sequence" and then we entered the "Black Sox and Shoes Zone."

I won't go into further detail but we finally did get dressed, left for the party, at which he and I had a great time. This morning he did his own "Thin Thin" (our version of toast) and is now reading the New York Times (a new "Technology" since his computer skills are all but gone," waiting while I have a cup of coffee, do e-mail and begin our "Sunday Oatmeal Ritual."

Gregory: Then and Now

How Strange Is It?

Plates have disappeared! For some reason plates have disappeared from Gregory's lexicon.

Plates used to hold his morning breakfast fish, now he tries to arrange the fish laden crackers directly on his tray.

Plates used to be where a muffin was placed and then put into the microwave for a brief warming. Usually the muffin goes directly into the microwave. This morning he did use a plate but it ended up broken on the counter.

Plates also used to be used to hold breakfast sausage between the two parts of a folded paper towel when cooked in the microwave

Plates used to be for dinner when placed in front of one on a placemat. Now the plate is placed somewhere off to the side without regard for the placemat's positon.

Plates held an assortment of cookies to be had with his early evening coffee. Not the chocolate chip, butter cookie, and biscotti are lined up on a paper towel which drips crumbs as he carries it to his desk.

I am not sure what is going on here. Just saying.  Plates seem to have disappeared.

A New Technology

Slowly Gregory has been loosing his ability to use the computer. Too confusing. Too many  if ... then's to solve. Too many sequential and/or random ways to work through an activity. Over time, since he has been loosing language, he hasn't been sending or receiving many e-mails, I am the hub for our incoming and outgoing information. But he had been able to hold on to a few skills.

When the iPad first came out I thought, "Aha!" Maybe this is the answer. At that time G was just beginning to have difficulties navigating around his Mac. I figured it would be easier with gestures, touch what you want to see, swipe to get rid of something. So we went to the Apple Store to give it a test run. It failed.

Gregory was not able to make associations on figuring out what he wanted to do based on what he saw. Too many one, two, three, and four finger clicks, swipes, wipes. At one point a key board came on the screen and he did not know what to do with it even though he had still been using the keyboard on his Mac. If he touched something in error he could not tell where the iPad sent him or how to get back to where he came from.

The final computer skill to go has been his reading the New York Times every day. He would get an e-mail and be able to go back and forth between the e-mail program and the browser program depending on what he wanted to read and then going back to select the next article.

Today I had a great insight that is so great that it only could have come from our "Sprit Guides." A new technology. At least for Gregory. We are going to try home delivery of the New York Times in paper edition. We may be using up a few more trees and we may be adding to the recycling heap, but perhaps Gregory will once again be able to thumb, literally, through the stories and enjoy his daily dose of news and current events. I'll let you know.

When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.

 

A Tough One

This is going to be a tough one to write. My life is dramatically changing. Even as we speak I do not know for sure how to proceed. I do have alternatives available to me but all of them involve difficult choices.

Mexico was difficult for both Gregory and me. Gregory because he was disoriented most of the time. Me because I was "on duty" 24/7. Simple things like getting dressed or undressed caused him difficulties. My support often caused more confusion on his part. Did I hear you say HELPLESS? Yes, both of us. He helpless with what to do next. Me helpless with how to help.

While I am not ready to admit it, I think that Mexico might have been our last major trip. I fantasize about Europe (Paris, Italy, The Netherlands, England, Scotland.) I dream about a driving trip through the eastern U.S. to see the sights and to visit family and friends. A river cruse down one of the many great rivers of the world could be exciting. We watch Rick Steves and other travel programs and imagine. But I am not yet ready to admit that these might only be fantasies.

Gregory's re-entry after Mexico has been very slow. Re-entry you would think should be easier since it is back at home and routine and the familiar. But for some reason it usually is worse than when we were away. This time it is taking longer and many of the previous cognitive and self-help skills have not returned.

About a week or so ago, I felt like my life as I know it had changed. Gregory went to return the condo grocery cart to the lobby after we had brought the groceries to our unit. He has been doing this for the last five years since we moved in. Somehow this time he ended up on the 9th floor and didn't think to call me for help. He religiously carries his cell phone but I begin to suspect that he doesn't know how to use to make an outgoing call. He didn't know how to get back on the elevator to go to the lobby. I suspect that he got on the elevator on our floor and by the time he figured out which button to push, the elevator recording began "yelling" at him to select a floor and then the elevator just took off to someone else who was calling for it. He got off when it next stopped.

I called him after I thought he had been gone too long, found out where he was and went to fetch him. I gently asked if he could tell me what happened and of course he couldn't. I didn't press it but I cannot explain the weight I felt on my proverbial shoulders. I felt like our life would never be the same. Yes I can take the cart back but that was one of the last shreds of assistance he was able to give me. And the fact that he "got lost" in the building freaked me. Since then I have been afraid to let him and he hasn't asked to go on his usual long walks. He doesn't go swimming anymore. He sits and stares more and more. He "shadows" me when I am working around the unit or at my computer. He gets bored because he doesn't have anything to do but on the other hand, he can't do much.

I guess I will begin to go on walks with him now that the weather is nice and will take him swimming. But that means my life is on hold. I have begun the process of trying to find him a "companion" who can relieve me some of the time but that takes advance planning, scheduling, money, trusting another person, etc. It is a necessary thing to do but one that I am not ready for!

Since his getting lost, things seemed to be running a little smoother. I was able to get away for an hour to go to my Weight Watchers meeting last week. This week it didn't work. He wanted to sleep in. I made sure he knew where I was going and that I would be back in an hour or so. I left at 9:00 and when I got back at 10:15 or so he was still in bed. He asked, "Why have you been gone so long?" I asked "Why are you still in bed?" He replied, "I was afraid."

I had assumed that he would get up when ready and begin his breakfast. He usually starts off with a piece of toast or a muffin. I left his "placemat aide" (which pictures his breakfast choices) out for Tuesday breakfast. The assumptions I can make continue to be fewer and fewer and change from day to day.

So how can I go to my WW meetings? How can I go to Michael's Museum for a morning? How will I ever be able to be in an Opera again? How can I leave him in bed "being afraid?" I guess I am waiting for the aftershock of these changes to settle down so I can begin to investigate what options are available to me/us. Hopefully I will find the companion to be here but honestly, I am not ready for that level of his being dependent on me. What choice do I have?

Checking It Out

Periodically I find myself checking out my cognitive abilities. I forgot to flush the toilet? I left the cabinet door open? I didn't start the full dishwasher after I put the soap in? I can't remember that guy's name?

No, that's not Alzheimer's or Dementia of any sort. That is just growing older and trying to do it with grace.