Nursing Care

I do not want to admit it but I think we have moved closer to the "Nursing Care" phase. Not so much medical needs but more daily, detailed support. Since associations continue to disappear, words loose meaning, even one direction at a time doesn't work so I have to "do it for him." Sometimes that means "Do it to him."

Laying out his clothes has become necessary and even then the pile of suggested clothes does not work and he goes off in another direction. I have had to help him on with his shirts, make sure he remembered his underwear, and comb his hair for him. Often he will be full dressed but his pants and wonder what's next. Sometimes he will attempt to put on two pair of pants when he was really in the closet looking for a pair of shoes.

I have been more alert to his personal hygiene needs like suggesting he shower, making sure he remembers how to shower, putting lotion on his face for him, making sure he wipes (-: Too much information :-) Today I will trim his toe nails and groom his feet. He comes to me with "dry patches" and asks what to do. When he is in pain, he is no longer able to describe it so I enter into a guessing game, sometimes guessing with him and sometimes playing by myself.

Recently he seems to have disassociated from "place." He complained about a pain in his knee (at least I think so because while he wasn't able to use words I relied on body gestures) and when I asked him to describe it, his hand hovered in the air some six or eight inches away from his knee, "Here," he said. I touched his knee and said, "Touch where it hurts." He continued hovering.

When I asked him after shaving if his face was irritated, he pointed to the lamp on his desk and said, "This always takes care of it." What I think he was doing was pointing in the direction of the medicine cabinet where the lotion is kept as if he was standing in front of the cabinet and not sitting at his desk. I replied, "Oh, OK."

A while back at meal times I started adding the condiments, salting and peppering his steak, buttering his veggies. I continue to point to his fork or knife when he hesitates and out of frustration he is using his fingers more and more. Now and then I have found that I need to cut up his food. Try doing that and helping him keep his dignity!

When we go out into the cold I make sure he has his gloves, scarf, ear muffs, and the right coat. When we arrive somewhere I put his gloves in his coat pocket as that is not a skill he still has. If I say "Put your gloves in your pocket," he will attempt to put them in his pants pocket or just look confused. When we leave I must be on the alert to make sure he has gathered all of his belongings. You can imagine that as I spend so much attention keeping him together I have begun to leave my things behind.

I am afraid to let him go to the bathroom by himself in a public place so I go along. I try to be unobtrusive (especially when others are in the bathroom) but sometimes I have to help him with his pants. Once or twice had to explain how to use a urinal as he was about to pee through his underwear. Sometimes I'll just go into a booth with him, onlookers be damned.

And, as I have often ended these rants, some days he has no troubles with any of these skills so when I intervene it then confuses him or he waves me away. "Roles and rules are subject to change on a moment's notice and sometimes not even that." M.Horvich 2012.

Write Don't Talk! Or At Least Speak Plainly and Simply

These are a few wonderful tips from an article in the Blue Cross Blue Shield newsletter. We rely on speech so strongly that when a person with Alzheimer's is unable to use language times get rough. A suggestions for people with advanced dementia is to write a simple, brief note using large letters to communicate. Have the person read the note and see the response.

Also creating a "Memory Book" with pictures of family helps to unlock stored memories that a person with Alzheimer's just can't get out in a chat. It's not that the person has forgotten, they just need help with remembering. Creating a book with commonly needed objects or activities is another way to communicate.

Neither of these techniques are necessary yet with us but they are good to keep in mind. With Gregory, I have found that simple sentences, spoken slowly (but not insultingly,) after I have Gregory's attention usually do the job. One or two ideas at a time is the most he can handle when I ask him to do something.

I have made signs to help him remember including: 1) by the table near the front door where we keep our pocket stuff - FOR YOUR POCKET - wallet, keys, cell phone, Chapstick, etc. 2) On a shelf in the closet by the front door is a list: COAT, SCARF, GLOVES, EARMUFFS? 3) On the inside of one of the kitchen cabinets is a sign with a column for each day of the week and pictures of what to have for breakfast on each day. This helps Gregory alternate cereals, sausage or fish, toast or muffin. Sometimes I will write a simple note on a POST-IT and hang it on his bathroom mirror, paste it to this bedside table, or stick it to his breakfast tray.

Today these techniques work, tomorrow they may not so we will develop new ones. One day at a time!!!

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.)

Work

Some people get up every morning and go to WORK. This may seem over simplistic to you, but bare with me.

WORK is part of their life and they get paid for it. After WORK, they go home and get on with living their life. The money they earn at WORK is what helps them pay for what they need to live; food, shelter, clothing, health care, entertainment, etc.

(A caveat here: Some people WORK several jobs. Some people not only WORK several jobs but also have a family to raise. Therefore some do not have a lot of time to enjoy life let alone have  enough money to provide the things their family needs.)

For some people WORK is living other people's lives. Nurses, doctors, home health care workers, rehab personnel, assisted living center staff, personal secretaries of the wealthy, Barak Obama's aids, etc. They get up every morning (or pm or night shift) and go to WORK. They spend their time at WORK making sure other people are safe, clean, comfortable, fed, entertained, etc. Then they go home and live their own life.

You get my point here. This morning after yet another "glitch" in Gregory's memory, I began thinking about the fact that my life has become the WORK of making sure Gregory is safe, clean, comfortable, fed, entertained, etc. While I do not get paid for my services (which are provided out of love) and while my WORK is 24/7, I still try to find some time to take care of myself and live my own life. Not easy.

As Gregory's personal, cognitive, emotional, and physical skills ebb and flow, as the "rules of the game" continue to change or at times do not exist, my WORK gets more difficult. And while I cannot imagine my life without him, I cannot begin to imagine how I will be able to continue to provide for his needs as they become not only more and more demanding, but as they become more and more cloud like. By this I mean undefinable, unidentifiable, non understandable. I know that I have options but meanwhile I have to get on with the day to day activities that support our life and try to deal with the emotions that overwhelm when the vail parts and I see the future.

At the same time I must mention that Gregory commented last night as we were drifting of to sleep, "I love my live." And while it is 18 degrees outside our condo is warm, our pantry is stocked, our bills are paid, our friends and family are supportive, our health is good, our life is good.

Coming Faster

This morning's conversation so far (48 minutes and counting.)

I asked G to bring his computer into my office so I could clean the screen. He did so. As I sprayed the screen and proceeded to wipe it clean, I explained that I had laid the screen flat so the cleaning solution wouldn't run into the computer.
G: "Could you do that for me?"
I look at him inquiringly.
G: "Oh, you are."

He came into the room and asked "What is today about?"
"Did you check the calendar on your computer to see?" I asked.
"No but I will." he replied.
A few minutes later I asked him what he had found out about today.
He thought for a few minutes and replied, "There was a long line of items but nothing I could tell."
We went to look at his computer together. He had been looking at his e-mail.
I showed him how to get to the calendar (again) and we saw together that there is nothing on the schedule for today.

He was pondering the medicine chest.
"Toothbrush?" I answered unasked.
Right. More pondering.
"Toothpaste?" I answered unasked.
Right. Brushing began.

He just tore a page off his "Day-At-A-Glance" calendar and as he was tossing the old page into the garbage commented with amazement, "It's still January?"

"It's 17 out. How should I dress?"

(Yesterday on commenting on the cold and asking a neighbor on the elevator what it was like outside, she answered, "Actually it's great. Sun is shining and its 80 degrees. I wish.

"Wow," G commented, "It has gotten warmer.")

The Semblance of a Tape Measure

I don't know how to measure this. Let it suffice to say, "He is getting worse." But that does not begin to measure the change. Lets just say, "He is getting worse. Has has been getting worse. He will continue to get worse."


When you live with a person who has a Dementia, you slowly acclimate as they slowly deteriorate. This makes it even harder to measure. The changes are slow, moderate, and sometimes fast. Sometimes the changes will work in reverse but it is more like they "pop up" here and there, now and then, but never consistantly. 


This causes difficulty measuring the progress of the Dementia.


Language continues to fail. Most of the time he will begin to say something but after the set up he cannot continue. More and more, if he can't get it and if it isn't obvious to me, we just let it go and don't even try to figure it out. 


This causes not only are difficulty measuring the progress but also difficulty predicting the progress.


Cognition continues to fail. He gets confused over simple operations like buttering his toast or deciding where to put the butter in the first place. He emptied the sink strainer then threw it away with the garbage. He was about to go for a walk and I discovered that he did not have his keys. Then I checked and while he had his cell phone holster on his belt, it was empty. His wallet was still in the drawer. Yet his coat, scarf, gloves, and hat were on and he was ready to leave.


I could not even discuss the messed up situation with him because he could not follow and said something like, "I was going to do that next." However, he didn't really know that he did not have his keys on or his cell phone in. 


Often now, when I ask if he has his cell phone, he does not know where to look for it. He will search one pocket then the other not remembering that the cell phone should be in the holster on his belt. The look on his face tells me that without seeing the object, he may not even understand what the words "CELL PHONE" mean.


This causes not only  difficulty measuring progress but also difficulty predicting the progress and finally difficulty even understanding what form the progress is taking.


Semblance is the word that comes to mind. There is a semblance of order in our life, a semblance of routine, a semblance of a semblance of a life. 


semblance |ˈsembləns|. noun. the outward appearance or apparent form of something, esp. when the reality is different : she tried to force her thoughts back into some semblance of order.

Both Gregory and I "try to force our thoughts back into some semblance of order" all the time. Some days we do well, most days we do not.

It Matters

Today Gregory asked if he could have oatmeal for breakfast. Happy to oblige. Based on previous experience, I suggested he get everything else ready on his breakfast tray before I make the oatmeal. A few minutes later, I am writing at my computer and he is standing in the door. I stop and ask, "What do you need?"

"I'm not sure what to do."

"What if you prepare your protein, fruit, and tea and then I'll do the oatmeal."

"Protein?"

At that point I realized that I will have to make his breakfast for him today. Just the change in the type of cereal he is going to have caused him to become totally disoriented and forget how to do what he usually does to make his own breakfast every morning.

Awkward for me to have to take over, awkward for him being so confused. I wasn't angry, didn't raise my voice or sigh under my breath. I am getting much better. I just made his breakfast. But the mere fact that I had to do and he couldn't do was difficult for both of us.

Do any of these little, passing interactions, experiences really matter? In the big picture of life, does one confused bowl of oatmeal really matter? As long as he can't but I can, does it really matter?

I am reminded of one of the pieces of a live performance we saw by Lily Tomlin, "The Search for Intelligent Life." Her character is a goth, displaced, disenfranchised young girl named Agnus Angst. The piece ends with the girl, while holding her hand over a candle flame, lamenting "Life is nothing. Pain is nothing. It doesn't matter. (Long pause) It matters, it matters, it matters." CURTAIN

Hangers

Several alternate titles:
   The Trouble with Hangers
   Hangers Scare Me
   There's More to Hangers Than You Think
   Mommy Dearest

A day or two ago we had our guest/TV room, bedroom, and closet carpeting cleaned professionally. I'm way to old to rent a machine at Jewel and do it myself. I deserve to have clean carpets. Especially since Mariah, our cat, has gastrointestinal problems (she likes to vomit - hurl - give up the cookies when it comes to hair balls.)

While putting the closet (a huge walk in room, those of you who have seen it will understand) back in order, I took the occasion to make sure Gregory's clothes were in order. There were still a few summer shirts and slacks so I covered them in cleaner bags and hung them at the back. Then I "repaired" several of Gregory's "hanger faux pas."

We use three types of hangers, all white plastic. The light weight (LW) one is for shirts. Two of the light weight (2LW) ones are needed to hang the pants which are a little heavier than the shirts. The one with shoulder pads (SP) is for soft, stretchy shirts. The third is a heavy weight (HW) one for coats, winter bathrobes, etc. You can see that we have this all thought out.

My guess is that you just grab a hanger and hang things up without much thought. Chances are you grab the correct hanger for the job. It is always an interesting activity for me when I itemize the steps of the various activities in our daily life. Try it sometime. You'll be amazed.

Back to the hangers. Using one of the three types (and the doubling of one) should be easy for most people. Not for Gregory. He uses LW instead of 2LW for slacks and it breaks due to the weight. He uses LW instead of HW for heavy coats and they break too. Quantity wise, we have fewer SP and HW than LW. He uses SP to hang pants so we run out of them. He uses HW for shirts so we run out of them pretty quickly too.

For a while we had a system, invented by Gregory, which was to hang the hanger backwards on the rack as a signal that that piece of clothing had been previously worn. It was a hint that after a few wearings, the item should head to the laundry or cleaners.

This was very helpful because Gregory used to be so fastidiously careful about his clothing. For example, when he used to cook and wore an apron to protect his clothes, even the apron didn't get dirty! He has long forgotten that technique so periodically I go through his clothes and if the knees are baggy or the shirts stained or smelly, I send them on their way.

So this morning, as I was putting the closet in order after the carpet cleaning, I reorganized Gregory's use of hangers, checked to see what needed to be cleaned, and worried about the future.

As I have said before, I try not to worry too much about the future. Why waste good time while we have it. And things can (and do) always get worse, so why not enjoy today while you have it. But every now and then I allow myself a few minutes of worry and fear.

What will it be like when I have to lay out his clothes instead of just helping him choose one shirt over another? What will it be like when I have check after he has dressed himself that he remembered his underwear and sox? What will it be like when I have to dress him, button his buttons, and zip his fly? What will it be like when he will not have to get dressed because he will be in bed all day? What will it be like when I have to wipe his ass?

But enough. Today looks pretty good. Rearranging his hangers is no big deal. He made his own breakfast this morning (with a little help remembering what day it was.) It is snowing and we will decorate the condo for Christmas. Maybe we'll go out for a walk and then come home for some hot chocolate and cookies. These will be Happy Holidays for us. And hopefully for you as well.

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!