Petrie Dish Part II

Manny, Gregory's day care aide, was ill Monday through Wednesday. He is rarely off from work so I can imagine that he must have been feeling really poorly. I covered lunch and dinner on the first day, did lunch and asked Isaac to cover dinner on the second day, and then I got sick on the third day.

101.7 fever. Nauseous. Runs. Slept all day.

Susan, dear old neighborhood neighbor and friend covered lunch and Pat, dear new friend and Gregory aficionado covered dinner. Susan's comment was, "I just love when he reaches out and holds my hand." Pat's comment was, "I have not made such a mess since the boys were in high chairs. Too much round food!

I share this with you for several reasons. First I am grateful to my family of friends for their being available to support Gregory when I am not able to.

Also, for those of you who are caring for a loved one, do not be afraid or embarrassed to ask family and friends for help. You will find that if they can spare the time, do not have to work at that time, or do not have previous unchangeable plans; they will be at you side to support you and your loved one!

Petrie Dish

A Petri dish (sometimes spelled "Petrie dish" and alternatively known as a Petri plate or cell-culture dish), named after the German bacteriologist Julius Richard Petri, is a shallow cylindrical glass or plastic lidded dish that biologists use to culturecells – such as bacteria – or small mosses.

I have noticed that this year I have been getting ill more often. Upper respiratory, flue,colds, just not feeling up to par.

My niece Colleen, noting that visiting Lieberman Center is kind of like living in a Petrie Dish, suggested I start using Kiefer, a pro-biotic beverage. Probiotics are live bacteria and yeasts that are good for your health, especially your digestive system.

We usually think of bacteria as something that causes diseases.  But your body is full of bacteria, both good and bad. Probiotics are often called "good" or "helpful" bacteria because they help keep your gut healthy.

In some ways she may have had an important insight. When at Lieberman I am with a population of residents who are easily prone to getting ill due to their age and their stage of dementia related diseases.

I am very hands on with my "new family" as I greet them, help them at meal time, push a wheel chair around the corner to the TV room, smother Gregory with kisses . I try to sanitize when I leave but what about all that time I am there?

I remember that when I began teaching, I was ill most of the first year because of the "petrie dish" that is a classroom filled with 25+ children.

THANKS COLLEEN. You are appreciated!

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.

A Guidance System

Emotions are your guidance system, not the cause your problems. Emotions are the response to what is happening in your life. They are an indication of what you are experiencing. Like a thermometer tells you the temperature in a room, your emotions tell you about the state of your life. Therefore, emotions are a good thing that can guide you to making your life what you want it to be.

Usually one hears about guidance systems when referring to airplanes or missiles. With airplanes, the guidance system helps make sure you will safely reach your vacation destination. In shooting a missile, the guidance system helps make sure the missile hits its destination doing the desired damage.

With emotions, the guidance system tells you whether what you are experiencing is making you happy or sad, is right or wrong, is good or bad. So if you are angry or depressed or sad, that is not the problem. That is the measure of your problem. 

To make changes, you must dig deeper than your emotions (or maybe you already have) to find the cause of your anger, your depression, your sadness. It is easy to say, "I am depressed" and to leave it there, being depressed. It is as if labeling the emotion is enough. However, when used as a guidance system, your emotions help you to be armed with a better understanding of the current state of affairs of your life and you can begin to deal with the cause, to correct it if you can. 

As you make these changes, you will feel your emotional barometer change. Most situations can be changed, if not by yourself then with the help of a family member, a friend, or a trained professional. In those situations that cannot be changed, your thinking can be. While it may seem difficult to impossible, one does have that choice and that ability. 

I believe that each one of us is creating for ourselves a life that reflects how we think about things, how we see things, whether we are optimistic or pessimistic. We must remember that our emotions are only the measure your life not the cause. 

If your emotions are telling you that you are happy and that your life is good, keep up the good work. If your emotions are telling you that you are sad, unhappy, lonely, frightened, depressed, etc, then think about how to begin the process of change.

On a day to day basis, you can alter your emotions by how you think about things. If the person in line at the grocery store in front of you is giving the checker a hard time and holding up the line, it is not necessarily about you and your anger at having to wait or your disgust with the woman's rudeness.

Maybe the person can barely afford her groceries, maybe her husband is dying of cancer, maybe she just got a call that her child was in trouble again at school. If you can begin to look at the "maybes," chances are you will not be as angry with this stranger who is holding up the line as you were. Often, a person's problems are invisible, so don't take them for granted.

Even with something as severe as the diagnosis of an incurable disease; a person can change their thinking. He can spend all the time left being depressed, down, and sad or he can make the best of the time left, do those things he has been postponing, make sure he tells those who matter that he loves them, look at those parts of his life for which he should be grateful. He can live life as well as he can, while he can.

While some sayings are trite, like ...  you can change if you want to, it is all in how you think about it, if you change your attitude you can change your life  ...  they are true. Try it, you'll be surprised.

One Word at a Time

My vow of silence lasted one and one half days. It was terminated sooner than I had hoped but did serve the purpose of calming me down. Also, as Gregory regained his health, his daily functioning improved somewhat. Another lesson learned for the future.

Then I got the same flu he had (not a bad) and was forced to take care of myself a little more than taking care of him. I did get him to sit on the toilet every two hours (with success) and prepared his meals. I was forced to "calm down" even more by my being ill.

After the first day of silence, I decided that perhaps a next step would be ONE WORD AT A TIME. Since complex directions, statements, or questions confuse him, maybe one word communications would help. It didn't.

As he was leaving the bathroom and I was in bed not feeling well, I said, "Light." meaning please turn off the bathroom light. He was not able to connect the word "Light" with the room he was in. So I added, "Bathroom." Still no connection. Led to "Bathroom light." Still no connection with asking him to turn off the light as he was leaving the bathroom. So I finally gave up on the "One Word" concept and asked, "Please turn off the bathroom light?" He did.

The one word thing about Alzheimer's? "Insidious" and it always wins no matter how closely you follow or create the rules!

WARNING: Explicit Scatology

Dear J,

Thanks for your thoughts. Things have been so hectic that I haven't even had five minutes alone in which to sit down for our phone chat. Friday night G had some kind of virus (don't think it was food poisoning) had the runs and has given me quite a run since.

Shit himself, shit the bed all night. Luckily I had a package of hospital type bed squares with absorbent on one side and plastic on the other.

Slept most of Saturday in between me having having to clean him up. After some toast, tea, and yogurt he shit on both of us as he stood in the middle of the kitchen saying, "Oh oh, Oh oh." I didn't know where to start to clean up the mess.

I have started having him sit on the pot every hour on the hour. Have caught most of the accidents. His ass is so raw that it hurts to look at and I am applying medicated cream.

Woke him up through the night and again caught most of the accidents. But toilet paper skills were sadly lacking and that paired with communication deficiencies made it an almost impossible situation.

Today is Sunday and he is still messing his pants. We will have another binding banana and oatmeal for breakfast and see what the day brings.

All this with the inability to wipe his own ass let alone communicate his needs or understand my questions. So like a baby flailing in its poop, that is what I am dealing with.

When he is sitting in one place he still looks and feels like Gregory. But at least with this weekend's illness, none of the Gregory I know is here with me.

I know your comment "You are not alone." means you empathize with me and wish you were here to support me but guess what, I am alone. And numb. Beware the IDES of MARCH.

And Emma decided to throw up twice. At least she did it in the middle of the bathroom tile so the grout is safe as is the bedroom rug. A bit of humor.

Michael

My Shoulders Hurt

The Atlas from Greek mythology, carried something very heavy, possibly the weight of the world, on his shoulders. This was a punishment that came down from Zeus, king of the Gods. Atlas' punishment was meant to last forever. It is often said that Atlas carried the world on his shoulders, but it might be more accurate to say he carried the heavens on his shoulder. It presents an interesting, insoluble puzzle to try to figure out where Atlas would have to stand to carry the world on his shoulders.

For the last two weeks, both of my shoulder rotator cuffs have "gone out."  The rotator cuff is made up of the muscles and tendons in your shoulder. These muscles and tendons connect your upper arm bone with your shoulder blade. They also help hold the ball of your upper arm bone firmly in your shoulder socket. The combination results in the greatest range of motion of any joint in your body.

Needless to say the range of motion has been quite limited and the pain encountered when going through daily life activities has increased. Vicodin helps me sleep. Massage and acupuncture will help over time. Exercises and not stressing the cuffs will help. But meanwhile, ouch!

When this happened I asked myself, "Why?" I did not injure myself or do any unusual heavy lifting. Maybe I slept wrong? I do believe that a person can bring an illness on himself but I have been doing so well with carrying both the weight of Gregory and my life, that I would like to think that I have not become jealous of Atlas.

Everything I have been doing in the last two weeks takes so much more energy, there is more that I cannot do, the fact that with Gregory's situation I have to "do it all" has become painfully apparent. Literally and figuratively. Atlas can carry the weight of the world (or the heavens) on his shoulders, all I ask for is to carry it for the two of us.

Usual Demented Person vs New Catatonic One

On Friday we went to Battle Creek Michigan to visit Gregory's brother Mark Sr who had a severe stroke about two months ago while we were in Mexico. This is the first time we were able to go for a visit. Sr is healthy and slowly but surely getting back many of his abilities. He still has his "Tracheotomy" because he cannot swallow or breath on his own and with it he cannot talk. He looks healthy and happy. The visit went well and seemed cheerful even. We loved seeing both Mark Sr and Diane, Renee and Lily, and thanks to sMark Jr and Colleen's for letting us stay with them. Colleen cooked wonderful meals for us. It was fun being with all of them.

We left Battle Creek at 1:00 on Sunday and got back by 7:00 ... but when asked how things went on the return trip, I would have to say "eventful" as opposed to "un-eventful" which is what I like to say, for example, after a flight to or from somewhere.

How was the flight? "Un-eventful!" Not this time.

By the time we left Sunday Gregory had developed a major cough and cold and he felt pretty awful. The ride home therefore was difficult for him. He dozed a lot. We did stop, however, and had a good time at Grandpa's Cider Mill for a piece of cherry pie, an apple cider donut, and a cup of hot mulled cider. Then we stopped at "The Chocolate Garden" and purchased the "tasting" and bought some truffles like: Cinnamon Dark Chocolate, Double Double Dark Dark Chocolate, Red Wine Dark Chocolate, and Cayenne Pepper Dark Chocolate. Yumm. 

By the time we got home Gregory was almost catatonic on me. I could tell that he didn't know the lobby, or the elevator, or the fourth floor hall. I paused and he didn't know which direction to go in the hall. 

When we go to the apartment he was able to open the door with his key (with help from my directions) but held the door open only a little way and didn't go in. There we stood with the shopping card full of our suitcases. I literally had to take him into the unit because prompts of "open the door wider" or "go on in" or "step out of the way" didn't help.

He roamed the unit like he had never been here before. I went into my Nurse Nancy mode, took his blood pressure and temperature (normal) and made him some tea and cookies. He didn't know how to sit in his purple chair so I helped. I put the tea mug and plate of cookies on the table and he arranged and rearranged the cookies on the plate like he wasn't sure what to do with them, and didn't know how to hold the mug let alone to drink from it. 

I put on some soft Beethoven in the hopes of helping him calm down but it didn't help so I turned it off. He would pop up and wander around the unit. After a while, I would gently bring him back and this time suggested we sit at the counter. We did so but he still didn't recognize the mug or cookies. I tried to get him to lie down on the bed to rest but he didn't know how, even with my physical guidance, and didn't stay down for long.

He didn't know my name. Thought I was Greg. Wondered why we were playing cards. Etc. As you can imagine I was quite scared as I had never witnessed such a complete and speedy drop of most skills and awareness since his "Trans Globabl Amnesia" which you may remember from 2003 when I thought he had a stroke and rushed him to the emergency room.

Talked with our friend Roger and he helped me cope (he is trained in Geriatric Dementias as a social worker.) Roger thought that perhaps besides the illness and the long drive, dealing with his brother's stroke, Gregory did not having the words to process all of his emotions and that was part of the problem. Makes sense to me.

Finally I helped Gregory get undressed,  got into bed, closed the lights, and he did settle down and slept fairly well. I administered cough and cold meds and drinks of water through out the evening. I held his hand or kept my hand on his shoulder or chest just so he would know I was near. 

By this morning Gregory is much better. Seems like the usual demented person is back rather than the catatonic one. Talk about being grateful for what you have (had.) He has been napping on and off but has had breakfast and lunch and we have been interacting and laughing on and off. He is able to communicate his needs and seems quite comfortable, contented, and aware of his surroundings. The meds are keeping his cough under control.

All (enough) for now :-)

m