What to Do, What to Do?

Susan, in her blog, describes: On Christmas Eve 2011, shortly after I began caring for Mom full time in her own home, we had a scary fight. We were in her big red brick house on the hill, eight miles from the nearest town. She thought she was in a hotel, and she wanted to go home. It was 3 a.m., the dead of Canadian winter and -16 C outside. We argued for several hours.In the end, she hit me with a large flashlight and then tried to break a window when I blocked her from getting out the door.

Susan then poses 20 questions asking you how YOU would react if someone was trying to do to you what we often do to people with dementia, even if in the name of protecting them.

Click here if you want to see Susan's post. Opens in a new window.

This is my reply to Susan:
The answer to most of those questions, if it was me in mom'e shoes, would be to REVOLT, probably fight back, try to escape, and maybe become violent (like mom did.)

My guess is that the situation was NOT your fault. You probably had no control over the situation and I am not sure what I would have done in your place. Discussion doesn't always work. Rationalizing doesn't always work. Lying doesn't always work (while sometimes that is a good thing to try.) Distraction doesn't always work.

Her reply to me:
You are right it was not my fault in the sense that I was doing the best I could with the knowledge I had under extraordinarily difficult circumstances. But my behavior added fuel to the fire. Not intentionally of course. So it is with many caregivers natural and professional who are not trained in skills, tools, techniques that help rather than hurt the situation. That's what I mean by my fault. I mean it not to blame, but in the sense of one thing caused another...Thanks for helping clarify :-)

My reply back to Susan:
To be honest, I am not sure most caregivers (professional or other) are trained in skills, tools, techniques, etc. Since each situation is different one must "go inside oneself" to tap what they know about the person they love and try to discover what might work.

I might add the FORGIVENESS of self is always a good step. I learned by doing, I learned along the way, I learned what NOT to do. I am not proud of some of the things I did but I have forgiven myself now. I know Gregory has forgiven me and even in the heat of a bad situation, after I apologized, he would tell me it was OK. Once he said, "Michael, I do not expect you to change, just be here for me!" How is that for forgiveness?

Now there are several techniques I use when Gregory gets upset, although he gets upset in a vague, nondescript way. I cannot tell what he is upset about. One thing I do is try to comfort, hug, pet, kiss. Offering him a cookie or pretzel and popping it into his mouth help distract. Another thing I do is agree and nod or utter things like "Ah. Hummmm. Huh." 

If he is still upset, I tell him "I have taken care of it. You do not have to worry." He will look at me strangely and I will repeat, "I have taken care of it. Everything is arranged. You have nothing to worry about. Everything is good. Everything is wonderful. (Accentuating the positive.) He will finally look me square in the eye and say, "Really?" I will assure him to the affirmative. He will sigh, release a breath, and say something like, "Oh good." And the crisis passes. 

Sometimes just waiting quietly and letting him rant helps. Sometimes a shout, like "Gregory now stop that" snaps him out of his anger. And finally: lie, lying is a blessing in disguise.

With your mom, if I was in that situation and discussion, rationalization didn't work I would try: passage of time, food, distraction, postpone "going home" until after dinner, help her pack and then talk about leaving tomorrow.

Perhaps I would stand outside with her in the cold (making sure she did not run) and we would "realize together" that it is too cold to act right now. If she was verbal I would ask questions like why do you want to go home, what is the matter with this lovely hotel?

Gregory has been non-verbal for a long time so I am aware that words do not work with him. As I do with Gregory, I would always be aware of possible violence and try to avert it. Stay out of hitting range. Secure blunt objects at all times? Not let him grab my hands, arms, or body. 

What I would not do with Gregory or mom is argue, get angry, threaten, tell her the consequences of the cold, continue to convince if I was not winning, try to rationalize because that is not what the person with dementia needs.

Enough rambling?

BLIND

This advice from Pema Chodron holds for dealing with Alzheimer's Disease. With Alzheimer's things change so fast and we have the tendency to hold on to the way things used to be (BLIND.) We get used to the way things are so we do not see the signs of the needed change in our care giving (BLIND.) When the changes do happen, we are surprised, wrecked, depressed, down (BLIND.) If we are able to be ALIVE and AWAKE, we will see that even then there is so much for which to be joyful, grateful, balanced in all things.

November 26, 2014 HOLDING ON TO OUR BELIEFS In Taoism there’s a famous saying that goes, “The Tao that can be spoken is not the ultimate Tao.” Another way you could say that, although I’ve never seen it translated this way, is, “As soon as you begin to believe in something, then you can no longer see anything else.” The truth you believe in and cling to makes you unavailable to hear anything new. Holding on to beliefs limits our experience of life. That doesn’t mean that beliefs or ideas or thinking is a problem; the stubborn attitude of having to have things be a particular way, grasping on to our beliefs and thoughts, all these cause the problems. To put it simply, using your belief system this way creates a situation in which you choose to be blind instead of being able to see, to be deaf instead of being able to hear, to be dead rather than alive, asleep rather than awake.

Care Conferences

So far there have been three "Care Conferences" and countless small interactions with the Fifth Floor Lieberman staff to discuss particulars for Gregory's care. Predicate this post by saying the I know that "I AM THE ONLY ONE WHO CAN REALLY BEST TAKE CARE OF GREGORY." then add that I also know that while this is true, it doesn't matter and there are many people who are already taking good care of him.

This actually was something I dealt with long before he went into Lieberman and it gave me a lot of grief. Now that we are in the heat of it, I am OK with being part of the Secondary Caregiver Team and giving Lieberman the primary position!

Being aware of the finer details of Gregory's needs has been an interesting exercise. I was amazed at having to think through the "details" of my caregiving. Some things I left out (but since mentioned to the team) like his sitting to pee, his being on a Glaucoma watch (not major but a very very slight increase in the eye pressure,) and his need for prunes to keep regular.

I know that I this may be too personal for some of you, but the need for documenting our continued Alzheimer's experiences with the hope of not only documenting but also the possibility that the words might support someone who needs to hear them, I need to be honest and upfront if not detailed. (I do hold back a little:-)

FYI: Here are the notes so far. I keep a running list of notes to aid my memory and to allow for followup. At the meeting I hand each participant a copy. So far these meetings have included the social worker, social worker supervisor, head nurse, nutritionist, activity director, and volunteer coordinator. Impressed? I was and continue to be!

You do not need to read through all of these details but I wanted to "paint" a picture of the kinds of things I have been having to share with the staff so they can better provide for Gregory.

Saturday:     01/11/14 

Intake meeting. No notes

Monday:     01/14/14

Didn’t eat much for lunch and dinner. Did he receive support?
After dinner ended up in his room behind ½ closed door and peed self. Embarassed.
I changed him.

Needs help and encouragement eating
One item at a time helps
Sometimes uses fork
Can use spoon more easily
Uses fingers to assist 

Who does nails? hair? deodorant? body cream? face cream?
When is shower? 

To bed by midnight up by ten 
Likes to take naps
Used to have coffee & cookies every day at 5
Music (classical)
Art (painting with oil sticks)
Reading out loud
TV Big Bang Theory
Looking at picture books
Likes body massage
Avid swimmer

Move armoire out 
Hang pictures and clock

Cost of Aricept and Namenda by me vs by Lieberman?
Cost of laundry?

Physical therapy? Check out swallowing & biting food?

Raspberry Jam helps with pills

Liquid vitamins and Liquid minerals easiest (I will buy)

Wednesday: 1/22/14

Bed call button broken
Higher toilet support rails?
TV list?
Do you need visitor list?

Liquid Vitamins & Minerals
Glaucoma watch
Prostrate cancer watch
HIV test results?
Tushie rash/fungus medicine
Ear dryness medicine
Wet wipes
Butt pain/spasms at times
Constipation
Pee/Poop records?
Likes dried fruit: prune, apricot
Prune juice needed
Reading glasses

Haircut schedule?
Massage schedule?
Other visit schedules?
Art Therapy/supplies?
Activity schedule?
Kinds of activities?
Volunteer activities?
Shower schedule?
Shower shoes?

Eating better.
More meal support?
Likes unsalted, raw nuts

Bedtime clothes vs Daytime clothes

Circular Thinking

I live my life in circles. Especially with so much time taken up by being responsible for two lives, my own and Gregory's.

The Morning Cycle: get up, let the cats out of the bathroom, drink coffee, help G toilet and shave, help G get dressed, start my computer, give G toast or juice to start, drink coffee, sit at my computer writing or maintaining our life, make breakfast for G, have toast myself, begin the day by noon.

The Day's Cycle: turn on the lights, raise the shades, brew the coffee, bring in the New York Times, spend the day, prepare dinner, clean up dinner, watch TV, read aloud, go to sleep.

The Cleaning Cycle: turn on the lights as I pick up old newspaper and put in recycle bin by door as I bring in the current newspaper and put on Gregory's table as I pick up my coffee and add the milk as I take it into the bedroom and place on the computer desk as I turn on the bathroom heat as I pick up the old cat food bowls as I bring them into the kitchen as I pick up the glue from the counter and return it to the TV room as I straighten the couch pillows as I take away last nights soda glass as I return it to the kitchen as I go by the hall closet and get the stick vacuum as I take it to the bedroom to pick up the sock lint on the carpet as I take it into the bathroom to vacuum up spilled (or kicked out) kitty litter as I return it to the closet as I reach into the washer and put the wet clothes into the dryer as I go into the bedroom to get the dirty clothes as I put them into the washer as I add soap to the machine as I go into the kitchen to add "soap" to the grocery list as I look through the coupons as I put them on the pocket table in the front hall as I pick up the mail and bring it into the bedroom as I open the mail and drink coffee as I put the opened envelopes into the garbage pail as i take the pail to the kitchen to empty it into recyle as I pick up the "yuck" garbage and take it into the bathroom to empty the kitty litter filled zip locks as I take the "yuck" and the recycled newspaper down the hall to the garbage room and I continue to cycle through the condo and through my day, picking up one thing, taking it to another place while picking up the next thing and taking it to the next place, and so on and so forth until everything is done and in its place.

Helpless Helping

I must supervise you every time you go to the bathroom. I always tell you to use the bathroom before we go out and I suggest you use it after an hour or two has gone by at home. I visually make sure that you pull down not only your pants but also your underpants. Lately you lower yourself with great uncertainty onto the toilet seat.

I listen for "plots" or "tinkles." When you seem done, I tell you to sit for a while and sure enough you do more. You don't know when you have more to do so the waiting works. I can't ask, "Did you shit?" "Did you pee only?" to tell me what kind of help to give so I either have you "wipe" anyway or ask you to stand up so I can see what in in the toilet bowl.

I verbally go thought the steps with you of taking toilet paper, wiping, tossing into bowl and repeating until clean. I tell you to use a wet wipe next and sometimes have to help you open the box they are stored in. I flush in-between wipes if you are using a lot of paper.  Telling you to "Flush" doesn't register and confuses the process so I do it for you.

You are always amazed and sometimes upset when "something is happening down there" as if moving your bowels or urinating is an amazing, unusual event in your life. I used to say something like "taking a dump is good" but have stopped bothering and just say "It's OK. Good job."

You do not know how to use a kleenex to blow your nose but instead use fingers aiming the blow towards the floor. You did OK once I showed the box of tissue but then you did not know where to throw the used tissue. You did not know how to open the garbage can once I showed it to you.

You do not automatically know how to use the knife and fork any longer, and you use your fingers to eat a lot, which I don't mind at all. But now being able to pick up a piece of food in your fingers and biting off a piece is the next skill you are loosing.

You know you want a glass of water, and sometimes can even identify the glass sitting in front of you, but then you stare at it not knowing the next step.

It's hard enough to get you ready to go outside during the winter but even with help putting on your coat, you get your arms all tangled up in the sleeves, untuck the scarf once I have tucked it, stand at such an angle that I have difficulty zipping the coat closed, take your ear muffs off once I have put them on for you, cannot coordinate your fingers and thumb in the correct orientation, as well as closed position to put on your gloves.

When we arrive at our destination and I am helping you take off your coat I unzip the zipper, I tuck your gloves and earmuffs into the coat pockets, I tell you to take off your coat. This causes you to immediately take the gloves and earmuffs out of your pockets.

Fastening and unfastening your seatbelt in the car takes place correctly about fifty percent of the time. One time you got yourself so wrapped up and knotted up in the straps that I didn't know how to get you out. Finally figured it out but had to put you through some contortions. Often you do not know how to open the car door.

About half the time now when you read you forget to put on your glasses and wonder why the reading isn't working. Another half of the time you put on your glasses and wonder why the room is blurry. Sometimes you do OK with your glasses but I have to monitor when they are dirty and clean them for you.

We watch TV together a lot and that is a nice pass time. At times, your responses to my comments make we wonder if  you really understand what you are watching and sometimes the responses make me tip my head and wonder if we are watching the same program.

In our day to day conversation (meaning my talking) I'll point out something through the window of the condo or that we are passing while in the car. I can tell by the focus of your eyes that you are not looking at the same thing I am pointing out. Sometimes I try to directed your gaze and you finally register what I was talking about. Other times it just does't work and the experience has passed. I just say, "Never mind." It sound rude but what can I say. Maybe "Oops we missed it."

So even as I help you, I cannot help you and that makes me sad. And the part that probably makes me the saddest is that we cannot talk about what went wrong or about either of our frustrations. And I am sad that sometimes I do not know how to begin to help or what to do to help. And then there are times I am sad that I am sad and that makes you sad.

I still try to show you, or explain the steps as simply as I can, or demonstrate. I touch, I poke, I push, I suggest physically. Most of the time nothing works. Most of the time I feel so helpless especially as your needs continue to increase and mystify. And most of the time I feel sad.

Body Memory

The fine tuning that becomes necessary to care for a person with Alzheimer's can be tricky but also can be very helpful. At a certain point there is no use in trying to explain, teach, show, demonstrate. But "just doing it for them" doesn't always seem right either. 

The body remembers many things that the conscious mind seems to have forgotten.  These "body memories" can be used to to one's advantage. They can help someone with dementia begin or continue an activity. At meal time, for example, try handing over a fork to begin the eating process if your loved one simply sits and stares at the plate. Instead of asking, "Did you brush your teeth?" give a toothbrush with the paste already on it, while standing in front of a sink with the water running. Sometimes just getting started can be enough to enable him or her to complete the task. Having read these helpful hints got me to thinking about what else I can to to help Gregory's day run smoothly.

Interesting

The other night, as I was drifting off to sleep, I realized that my life has no major concerns! "What do you mean by that?" you may ask. Isn't Gregory's Alzheimer's a major concern? Doesn't it cause me grief, sadness, depression, anxiety, frustration, not to speak of hard work 24/7/365?

Well yes, dealing with Alzheimer's is no easy task but when it comes to life, there are no major concerns. No career path to worry about. No college entrance exams. No papers due. No classroom lesson plans, no parent meetings, no report cards. No aging, ill parents to help. Financially we are doing OK. I have my health as does Gregory. I do not have any large projects that I am NOT looking forward to completing. Very few shoulds our oughts. No one is "on our case!"

Besides the 24/7 "caregiving," my life is fairly easy, simple. Monday's obligations: Metra downtown, lunch out, opera dress rehearsal, dinner, TV.

Tuesday's obligations: Walk the neighbor's dog, pick up lunch, take Gregory to Nancy's studio for an afternoon of painting,  photo document his paintings to this point, dinner, TV.

Wednesday's obligations: Easy day, Shannon visits for coffee and cookies plus the usual.

Thursday: Dr. DeMuth for therapy plus the usual.

Friday: Ivanca cleans, Aaron Brady and Isla (the new baby) visit, Christmas Tree lighting ceremonies downtown Evanston.

Free open weekend, maybe the Botanic Garden.

Monday night: dinner downtown and Parsifal Opera night performance.

Through out the week: Besides the 24/7/365 craziness of Alzheimer's there is grocery shopping, keeping up with e-mails and bills, working on getting my second collection of poetry published, straightening around the house, doing the laundry, thinking about Christmas details, getting ready to visit G's family in Battle Creek for Thanksgiving, surfing the internet, keeping up with Facebook.

When I allow myself, some time is spent with worries like our future, Gregory's progression, the ever present health possibilities, getting hit by a bus. But for the most part I do not worry much. So see what I mean! No major concerns.

E-Mail Communications

In response to the last post our niece asked:
 http://mhorvichcares.blogspot.com/2013/11/e-mail-to-friend.html 

Do you think there is a breaking point?  Is that the point when he doesn’t know you anymore?  Will that make it “easier” to make tough decisions?  Man I feel for you. 

XO

I replied:

C

Yes, a definite breaking point will probably arrive. Do not know for sure when that will be. If I were to become ill or incapacitated myself would be one. G's not being aware would be another. G's incontinence will probably figure in there somewhere. My physical inability to lift and care for him would be another, whether his physical needs increase or I get too old to push and pull. 

Steps before the breaking point and needing a memory care facility? My continuing to grow and understand how to work with him. My continuing to love myself. Continuing with my creative outlets. Continuing to take time for myself when G is with his companion. Possibly adding to the hours that a companion is with us. At some point needing a better trained companion. Buying the condo next door and having live-in help.

You know how you didn't want to mention TP so as not to add to my burden (and I chastised you and said I'll let you know when it is too much:-), sometimes I feel like I add to your burden by sending my depressing (and sometimes but seemingly less often uplifting and loving) missives your way so often. You do not always have to read them all and/or comment. I know that both of you are there for us.

That's why You Love Us More,

m

On Nov 13, 2013, at 12:28 PM, Colleen Maire wrote:

Caregiving

Gregory, as reported by his companion, cried a lot the other day. Crying, sobbing, big tears. But seemingly tears of joy. Perhaps remembering our time in Paris while listening in the living room with the companion to the singing of Edith Piaf.

Same night, Gregory and I watching "Send in the Midwifes" a PBS series about post WWI England, poor section of town, lots of children and pregnant mothers as served by four nuns and four midwives.

This episode was heavy, not only with child but also with one of older nuns who has Alzheimer's, one of the pregnant mothers who is black and shunned by her neighbors because of her color, and an older wife who is emotionally abused by her husband.

The episode ends well with the Mother Superior supporting the nun with Alzheimer's who is praying that she be protected from the devils that attack her. "There are no devils here Sister Monica. Only angels. And when you forget things, we will be here to remember for you."

One of the other pregnant white mothers who almost falls down the stairs is caught and helped by the black mother and the barriers of race hatred begin to fade. Later when the black mother is having birthing contractions and cannot contact the midwives, the white mother helps get her to the convent for help.

Finally the abused mother spends a lovely lunch with her grown son who is visiting, for the first time standing up to her abusive husband telling him, maybe for the first time, what she thinks. When she returns the husband has realized how important she is to him and prepares her dinner. A new softness has arrived.

Through Gregory's sobbing at the end of Send in the Midwives he was able to say, "I want to be able to help ... others." We rocked and I assured him he does help others and listed how many and in what ways. It was an impressive list.

Form Follows Funcion

Memory doesn't inform.

Telling doesn't inform.
Pointing doesn't inform.
Touching doesn't inform.
Showing doesn't inform.

Only doing for has for m.

Caregiving E-Mails

A series of e-mails based on a wedding reception Gregory and I attended.

C
Thanks for taking such good care of Gregory. He appreciated you to me on our way home in the car. We BOTH did a good job taking care of him and not crashing into each other too much. I know you can understand that some times I "crash" into other helpers since I am on 24/7/365 and I am mostly on "auto pilot," not that I do not think you can do a good job because I KNOW YOU CAN! It's just difficult for me to go off-line!
m

• • • • •

Mikey,
I feel some uncertainty assisting Greg as I am unsure how much is too much or too little. I also have issues nuturing. I'm not very good at it.  Greg's comprehension has greatly deteriorated since last I saw him. I worry about you and the enormous task you tackle 24/7. I admire you enormously and love Greg dearly. I feel surprised yet happy to have been acknowledged by him.
Love you lots,
C

• • • • •

C,
You are good at nurturing even though you may feel you are not! You are always very good to Gregory and to me. When it comes to assisting him, there are no clear answers. That is what makes it difficult ... for me as well.  One does what needs to be done! He might be able to guide you a little, but otherwise you just have to make educated guess decisions. It is what I do even with our 37 years of togetherness.

From what I can tell you did wonderfully well this afternoon in keeping an eye on him, getting him some food and drink, etc. Luckily you do not have to do this too often, but at parties etc it is good to know that someone is keeping him safe and happy. That is all we really can do.

Your help allowed me to photograph for C and J's party and not worry that Gregory would get lonely, or fearful, or go hungry, or wander off. You did good!
Love you lots also!
m