Decisions Are Hard to Make

Dad celebrated his 72nd birthday this year.  I took him to lunch at a local diner and he had his BLT.  The waitress put a candle in his sandwich.  He got a kick out of that, as you can tell with the smile that's on his face.

The place he lives had a Tea Party that same afternoon so Dad attended and had a great time visiting with neighbors and, of course, eating snack food.  Here he is being the ladies-man!  He sure does attract the ladies where he lives.  Dad reports that he doesn't really get involved in all the activities of the place but I know better.  The ladies make sure I know exactly what Dad has been up to every day I walk through the front door.  In fact, if no one is in the front lobby or community room to give me my 'dad update', I feel like I'm suddenly missing out on something.

The wrist button.

The receiver - we tested it
and you can even hear
Dad if he's in the bathroom
with the fan and
water running,
and the door closed!

Today we got Dad set up with the "I've fallen and I can't get up" button.  It is an emergency call button he wears on his wrist.  If he has an emergency he presses it and within 45 seconds an operator comes on over a large receiver on his counter and asks him if he is OK   If he is not, or they hear no response, they will call 911 and me.  I feel a lot safer knowing he has that but he's not sure.  He called me a few times already asking me questions about the button.  I hope he wears it at night like he's supposed to but something tells me this may be an issue.

Napoleon Bonaparte once said that, "nothing is more difficult, and therefore more precious, than to be able to decide".  Decisions are tough and when we are faced with having to make difficult ones we often avoid making them.  In my case I just wish someone would make it for me.  But then I'll probably fight them on it and nothing will ever get resolved.  When I am tempted to wait for people to make the decision for me I am reminded of an ancient Chinese proverb that says, "a wise man makes his own decisions, an ignorant man follows public opinion".  When it comes time for us, as children, to make important decisions for our parents, it is especially tough and no one knows what it feels like until they are in that position.  Proverbs reminds us that when making decisions, to "...stay away from fools".  But there's always the question, "Am I the fool?"

There are two fears associated with decision-making.

1)  Afraid we will make the wrong decision and

2) Afraid of backlash from people who may fail to support you


It is becoming more and more apparent to me that Dad should not be living alone.  Although he has the fellowship of neighbors,  once the door to his apartment is closed, he is alone.  He has very little concept of space and time.  He can not remember what he was just doing a few moments ago and I'm afraid that anyone could knock on his door and take advantage of him.  Again, the building is very secured and he keeps his door locked at all times but this is still a scenario that plays out in my head often.  In fact, there are scenarios playing out in my head a lot of times that aren't good.  After the revelation recently that I need to be present when Dad is showering, it seems the decision is, indeed, being made for me.

The assisted living facilities I have located are not taking new residents at this time. There is a waiting list and currently the wait list is about 6 months long.  There is a two-bedroom unit opening up next month in Dad's building and a new tenant would prefer a one-bedroom.  Again, perhaps this decision is being made for me.

The loss of independence is tough on the elderly.  It's tough on any of us and as a caregiver/son, it seems I am surrendering more and more of my independence to care for my father.  It won't be forever and I need to remember that.  At tops it would mean 6-8 months until I can get him in to an assisted living facility.

One last quote.  Perhaps you have this in a frame or under a magnet on your refrigerator door.  But there is much truth to this saying:  The Will of God will never lead you, where His Grace cannot keep you.   I am trusting that God is moving things around and positioning them to allow me to make the important decisions with clarity of mind and sight.

Changes

When I stepped into dads apartment my nose immediately told me something was not right.  Dad was in his chair and I told him to just stay seated.  I put my medical bag down, took of my jacket and scarf and looked at the stove.  Nothing was on the stove. Oven was off.  I peeked inside the microwave disguising my investigating with, "how do you like the microwave oven?"  He said it does the job.  The microwave was clean.  Then my brain started thumbing through the thousands of smells stored in my memory banks.  It was urine.  My heart skipped a beat.  I went to his room, saying, "going I to your room to say hi to mom" (the urn is in there with a photo Robb created for her memorial service card).  I pulled back the blankets...clean. Checked the pillow...clean.  Checked his dirty laundry...nothing soiled.  Then I walked into the bathroom and it hit me as my shoe suddenly made that just-walked-in-something-sticky noise.  It was then that I realized I had been holding my breath. I took a breath in...the floor was covered in urine.  I cleaned it up.

I sat on the couch as I usually do and I asked the tough question.

Dad, I don't mean to get real personal but I need to ask you if you think you may have some problems when standing up to urinate.

"Not that I know of," he responded.

"I wonder if it would be best for you for now on to sit when you urinate instead of standing. There seems to be a fair amount of urine on the bathroom floor so I'm guessing our aim isn't as good as it was when you were younger"

He agreed. But I know that getting him to do that new habit will be difficult.  I've added daily washing of the toilet and floor instead of weekly, to my growing list of duties.

I always have dads feelings of self-worth in the forefront of my mind when talking with him and making decisions for him.  I don't ever want him to feel like I'm treating him like a child.

I did my usual tasks...checked his feet. The skin issues on his arms and head. Took his blood pressure and blood sugars.  All is well.

I then met briefly with Sue.  Sue is the nurse practitioner now a part of the team that is caring for dad.  We talked for a bit. I re-iterated to her that no one comes to visit dad without going through me or my sister.  The door buzzer does not work to his apartment so he has no way to buzz anyone in.  Also the office staff knows if anyone comes for dads they offer them a seat in the lobby and call me.  She applauded that safety feature and thought it was a great idea.  I was relieved she thought that way. I didn't need her to think, "here we go with an over-controlling caregiver".  The whole team knows that I am a part of the team and if this program is to succeed for dad, it must have boundaries and expectations.  They appreciate that attitude as usually they are left to do it themselves.  They don't always know what's best for the individual.

So far in the team is Dagmar (social worker), Sue and Joan, (nurses), and myself.  We will be adding a new doctor, podiatrist, optometrist, dietitian, and dermatologist in the next two weeks.  This team is a part of what is called Community Care. It's a county program funded through Medicare.  It costs me $160 a month but so far it's worth it.

Sue did an evaluation of dad.  Her vitals matched mine (which is always nice to hear!).  She gave dad a few oral tests. I'll get her written evaluation on Tuesday.  The test support what the rest of the team knows:
...dads short term memory capabilities are pretty much gone
...He's happy and feels good and
...he feels that his memory is as good as anyone else his age
...although he missed mom, he's not in a hurry to be with her

We she asked who in his life he has that he can trust and turn to for problems, he immediately said, "Kurt and Robb and my daughter, Terri, if she's available".

After the nurse left I reviewed a new process we are trying.  Dad needs to be increasing his water consumption.  He drinks coffee but fails to remember that coffee actually dehydrated the body and that it doesn't count as water even though it has water in it.  So I made a two-column list.  One says coffee the other says water.  I have a smiley face stamper next to the list. Every time he has a cup of either, to put a smiley stamp in the correct column.  This way I can track his drinking.  As I have been trying for a few months now to get him to drink more water, I decided on a slight scare tactic.  First don't panic...because I think it worked.  I told dad that if he doesn't drink between 4 and six large cups of water a day that he may get to a point that he needs to be hospitalized and possibly a nursing facility until he can get hydrated.  That seemed to do the trick.

The goal of the team is to keep dad in his home and sometimes we need to remind him that is why we take these steps to get him to make positive steps for his own health.

Now another issue arose today.  This one caught me off guard and I told the nurse about it today.  Everyday I monitor his towels, soaps, the shower and dirty towels to make sure he is showering.  All signs showed that he is accept lately his skin has been excessively dry and body odor has started to be an issue in the last week or so.  Dad said today that he wipes down with a wet cloth daily but has not showered for over a month.  He said he just didn't want to.  We talked about if the shower makes him nervous or if there is anything about it that he doesn't like. He said no.  Tomorrow I will talk with him about it and see if I can get him to agree to shower twice a week if I am in the other room in case he needs help. We will also have the talk about now he feels if he needs help in the shower and how he feels about me doing that for him.  Sometimes that brings a new level of trust and bonding between patient and caregiver.  When they are father and son it can either be devastating to the patient or rewarding.  We will soon find out which one applies to us.

Good news came today that the administration of community care will approve compensation for me for caring for dad.  Caring for dad takes about 25-30 hours a week.  I will get compensated now.  Basically either we would have someone come in and do what I'm doing but only three times a week...or they pay me an hourly wage for doing it.  It's a good deal! It will relieve a lot of financial burden.

What's next? We will keep looking at assisted living facilities and hopefully find one that is well suited for dad and that he likes. Then we will fill out the application and go from there.

Dad is happy and healthy.  He loves cards and recently received two from people he worked with in Florida at the forest service. He walked downstairs and showed a group of ladies playing puzzles.  Want to make a guys day? Send him a card...a funny one...he loves them!

Foot Care Day

Scene outside Dad's window.  He sits in
his chair and this is what he gets to see.

Today was the first big snow fall of the winter.  And wow were the flakes HUGE!  As I walked in to the place Dad lives I was greeted by several of the ladies who talked about how Dad is such a wonderful part of the exercise group! They go upstairs to get him and walk him down to the community room.  Dad puts out the chairs in a circle and does the exercises with them. Then he helps clean up when they are done.

Foot Care day for Dad

We followed up with Dad's foot care today.  Another day of soaking and caring for them.  This time he let me help him cut the nails which is something he didn't want me to do but then he realized he was having difficulty reaching down that far.  He said, "wow - I'm shrinking but my feet keep getting farther and farther away!".  Gotta love his humor.

As the winter closes in I need to be extra diligent in making sure he has a supply of food and toiletries.  I have been pretty good at stock-piling dry goods for him.  There may be days at a time when I'm just not able to get to him.  Interestingly enough there are really only two ways to get to Dad's from here and that's assuming they have plowed our little private road we have to drive down to get out of our place.  Then I have to navigate two really steep hills and some days it just might not be possible.  VERY thankful for the people in his community AND especially the amazing lady who is the manager there - Jill.  Jill if you are reading this - I agree with what that lady said.  Your mom would be very proud of all that you do for others.

Mom's Urn on the same table with
her favorite stuffed animals!

Speaking of Mom, she is never far away in our hearts, that's for sure.  Each morning and night Dad wraps both hands around Mom's urn and tells her how much he loves her and misses her.  He kisses her picture which is next to his bedside every night as well.  Their love has always been an incredible story and continues to be even today.

A "Little" Housework

A visit with Dad today found him once again sitting in his usual chair with the laptop on his lap.  He was playing solitaire.  He enjoys the game and will spend several hours a day playing that and a few others.  Any attempt to teach him new ones is pointless at this time.  He isn't interested in anything else but his games.  That's not a bad thing right now - at least he still remembers how to start and stop the computer and play his games.

We talked for awhile and then I took his vitals. I bring over a red medical kit with me everyday now.  I take his blood pressure and check his blood sugars three times a week.  A routine check of his feet showed excessive drying and some cracking so we spent time soaking his feet and working on them.  Then we covered them in bag-balm and stuck socks on them for awhile.  Tomorrow we'll soak them again and then get in to a daily routine of checking them and making sure we keep a fine line between dry yet moist enough. That can be a battle for most of us.  I'll call the nail clipper person this week and make an appointment for them to stop by Dad's and clip his nails for him.  He can reach them but he doesn't clip them.  I'll let a professional do that although I'm fully capable - some things you just want to leave to the professionals.

A shopping trip two weeks ago brought him, among other things, a dozen hamburger patties.  He typically eats one a week if we're lucky.  Today they are no where to be found.  He didn't eat them.  They just disappeared.  I'm assuming he didn't know what they were and just tossed them out.  I am now committing to being at Dad's for a meal so I can make sure he's eating more than sandwiches.  The home delivered meals was a complete bust but he'll have a harder time saying no to me when I'm cooking it for him and sitting there eating it with him.

The reality is setting in:  Dad will not be able to live independently much longer.  I am now taking care of two households and that will break me after a while.  Cooking, cleaning, shopping, bill paying, health needs, medications...the list goes on. I feel like a doctor when I go over to his house, checking everything from his feet to the top of his head (but leaving personal areas to the doctor, of course!).  You might recall Dad had some skin cancer removed from his face and back two years ago.  So we need to keep up with that at least weekly.

In an ideal world my father would be living with me right now.  Working out the details to that is actually pretty tricky but we will find a way.

We talked about the horrible tragedy in Newtown, CT today.  He was heart-broken, as we all are.  He just couldn't understand it.  He said, "Well, maybe Mom is part of the welcoming committee up there and helping them to feel welcome".

A Visit to A.L. Facility #1

Dad's official diagnosis of Alzheimer's included a recommendation for assisted living.  Dad does pretty well where he is but here's what haunts me on a daily basis:  there is no warning system that tells me in advance that Dad will suddenly forget where he is, or that he'll fall, or some other issue.  We did receive notice that Dad qualifies for a program called Family Care that will help pay the incredibly high costs of assisted living (typically between 4000 and 8000 a month!).

First things first...I don't want to do this.  I want Dad to stay where he is or come live with me but I'm not sure those are the BEST options for him.  I need to step out of what I want and keep focusing on Dad's needs - his safety, his health, his qualify of life, his sense of belonging and self-worth.  I need to focus on giving Dad as many opportunities to find a place in this world.  Until March 1 of this year Dad was a husband.  Now that identity no longer applies to him.  After 50 years that has to be an amazingly difficult transition to make.  He has been a strong father but in recent years his ability to remain strong for his kids is limited due to this disease.  There are many things about Dad that have not changed and the strongest of those is his heart and his love for his family.  THAT is what I need to focus on while helping Dad to cross the bridge to this next path along his life journey.

Yesterday I had a wonderful visit with Judi from The Lighthouse of Mequon, an assisted living for Alzheimer’s and Dementia patients.  The first thing that impressed me occurred when I walked in the door.  Most of the 16 or so residents were in the community area being social.  The smell of homemade food was in the air and the place was amazingly clean.  The first question that came to my mind was, “did they prepare for my arrival?”

We talked in depth about Dad, sharing his life story with her and another staff member before we toured.  She shared with me the philosophy of the home and I was impressed to say the least.  They focus on making sure each resident maintains a purpose.  That’s the first time I've heard that statement and I liked it. Here is an excerpt from their Foundational Belief Statement:

All seniors deserve attentive, personalized respectful care that enables them to live with purpose and age with dignity.

...we believe all of our residents really want from us:

• To Understand Me

• To Protect Me

• To Include Me

• To Surprise Me

• To Inspire Me

These ideas have, in turn, become our company Values:Hospitality, Integrity, Security, Passion and Fun.

Then we had the tour.  An beautiful open-air atrium, an open-concept home with living, dining and kitchen areas exposed to one another.  It really felt like someone’s home.  A walk down the few corridors and we saw rooms.  Some have a private bath and others do not.  He would have his own room and would not have to share it with anyone.  We can paint the walls whatever we want and bring as much of his own furniture as we can shove in there.  They can provide a single bed, dresser and chair.  The only thing they would have to provide for Dad is a bed and maybe the dresser but it would be up to him.

Then came the finances.  Dad is qualified for county assistance called Family Care.  Basically, Dad would need to pay a rental fee and then all other expenses would be covered.  However, in this particular facility they require two years of private pay first.  That would come to a total of about $124,000.  Yep, 124K  That’s a lot of money and out of the realm of possibility right now.

I liked the place but my heart is heavy about ‘putting’ Dad somewhere.  The ultimate decision is his and right now he says he would probably enjoy something like that.  But when I think of the first couple of nights, walking out the door and he in a single bed after sharing one with Mom for 50 years – and a new place, new sounds, new smells, etc.  I cried a bit last night just thinking about it.

One of the options I’m considering is having Dad move in with me. There is funding available that will help with expenses which would be necessary.  But that would mean I need to either find a large, 3-bedroom home to rent or position myself to buy a home in the next 6 months which is not a possibility.

Very discouraging and I wish like crazy that Mom was here to help with the decision.  She trusted me. She told me before she died that she knew I would never leave Dad and that all my decisions would be in his best interest.  That doesn't make it any easier though.

I was invited to come back at any time, with no advance call.  Dad and I were invited to call ahead one day and let them know we would like to come for lunch or dinner at just $5 a person.  I was also given a short list of things to look for in other facilities and then to let them know my comparisons, whether good or bad.  

My first impression is overall wonderful.  The people, the facility, the energy and spirit in that place seems to suit Dad pretty well.  I would feel confident that he would fit in and find a place and purpose.  It is on the 'if we could afford the first 2 years list' but regretfully, unless I can find other financial resources, it's not going to happen.  All is not lost yet as this company has other properties in this area (just not this county) that accepts Family Care immediately.  I will speak with our county advocate on Monday about this option.

I have my second facility to visit this week.  We will have much to compare and many more notes, I’m sure.

If you would like to visit the website and check out where I went you can find it here: http://www.npseniorliving.com/mequon.php

Inside the Mind of Alzheimer's

I would like to try to take you into the mind of an Alzheimer's patient for just a few moments.  The task is difficult but the first thing you must do is forget all of your basic assumptions and your particular logic.  You must take your steps of logic one at a time.  Typically we run through the logic steps quickly, coming to a conclusion and acting upon that conclusion.  Not necessarily so with memory patients.  To grasp what is happening we must put aside our realty and try to see the world through their eyes.  We take the first logical step and if we do not recall if we acted upon that step, then we act on it without even a notion that perhaps there is another logical step beyond that first one.

Reasoning is the process of consciously making sense of things, for establishing and verifying facts, and changing or justifying practices and beliefs based on new or existing information.  Consider what happens, though, when the information you receive is never new and it never existed before?

As family and loved ones of the patient we must continually be alert to the digressive nature of the disease AND to the basic human instinct of hiding our faults.  An article by the Alzheimer's Organization is very helpful and I strongly recommend reading it.  I have a copy of this online for you to simply read. You can see the link to the article at the end of this blog entry.

Dad does have moderate to severe Alzheimer's.  On the Alzheimer's Association scale he has most of Stage 5 and most of Stage 6 symptoms.  The neuro-psychological world does not prescribe to this scale.  As the Alzheimer's Association says, it is difficult to place someone in a particular stage as they overlap.

What can Dad do and what can he not do?

• reflexes are very slow and therefore he does not drive.
• requires verbal reminders because he ignores written ones
• is not able to balance a checkbook
•  has lost most of his understanding of cost and money. Sometimes unable to tell you if 50 is less than or equal to 100 without some time to figure it out.
• is unable to recall recent events, as recent as two hours ago.
•  cannot count backwards from 100 by 5's or 7's. 
•  is not able to plan, manage or organize complex tasks such as shopping, making a grocery list (for example his last list to me asked for 24 boxes of cereal.  His pantry already contained 12 of them)
• is not able to communicate health concerns to his physician
• is unable to recall his current address, telephone number, location, date, day of the week, etc.
• knows who he is and the names of his children but rarely recalls his grandchildren's names
• personality changes include more tearful moments, ease in expressing emotion but prone to agitation and outbursts of anger
• is closed-off during social settings and is rarely unsure of the time frame or reason for the gathering
• experiences disturbances in normal sleep-waking cycles
• unaware of surroundings other than his one apartment
• cannot tell you where something is in his apartment if asked
• has repetitive behaviors such as scratching his arms, fidgeting to the point of causing damage to clothing materials and arms of chairs, etc

Dad is able to care for his personal needs, bathing, etc... or so we assume.   I check his dirty laundry and track towel and clothes usage and so far have not been able to detect any changes or lag in their use.  His toiletries get regular use.  A nurse will be involved in double checking beginning in two weeks.  It will be masked as a weekly physical but they look for areas that may not be getting clean, extra dry areas or damaged skin such as rashes or fungus.

His kitchen is always clean although he does not do deep cleaning and so either my nieces come over to do it or, like I'll do tomorrow, I'll get down on my hands and knees in the bathroom and do some hard-core cleaning.  He will tell me he keeps up with it and I will not show him that he actually is not doing a good job in that department.

So back to the idea of getting in to his mind - you've seen a bit already.  He believes that since he runs the broom over the floor that everything is clean.  In his mind it is simple:  there is no garbage on the floor and no one steps on dirt therefore it is clean.  Let's take this from another viewpoint, though.

Here are a few examples and I'll start with the now-infamous coffee pot disasters of March, September and October 2012.

Coffee pot overflows one day - it is broken - throw it away

Coffee pot is gone - coffee grounds not needed - throw them away

There is meat in the freezer - obviously I eat meat - my diet is fine

I do not recall eating lunch today - I must not have eaten - I'll eat again

I don't recall having a bowl of ice cream today - I will have one

There is no mail to read - I must not have gotten it - I'll go check (up to 4X day)

I don't remember if Kurt was here today - call him to ask when he's coming today
The floor appears clean - therefore I obviously clean the floor 

Today, what would you assume did not get accomplished if you did not remember doing it?  Laundry, breakfast, dishes, teeth, kids' lunch, bills paid, phone calls made, Facebook updated?

Getting the idea?

I have a sour gut - haven't had this in years - call Kurt for medicine

What he doesn't realize is that is the third time that week, and the fifth time that month he has made that call.

I just received a wonderful phone call from XYZ - it's been months since the last time we spoke

Haven't spoken to XYZ in a long time - they must not know that Mom passed away 

I can see HOW it can be easily justified in the minds of family and friends to not visit, call or write an Alzheimer's patient.  They won't remember it so why bother, right?  Frankly that attitude disgusts me.  Those who forget the Alzheimer's patient will be among the first the patient forgets.  Then how will you feel the day you show up and that person has no clue who you are?

Dad loves cards and letters.  He feels loved and remembered and he treasures them for weeks, keeping them next to his chair and sharing them with me every day.  Often he calls to tell me he got a card or letter from so-and-so and you can hear the joy in his voice and smile on his heart.  Does it really matter if he doesn't remember your phone call from yesterday?  What should matter is right now - right here - the present.  Why are so many people so selfish that they ignore the aging to protect their own feelings?  You think that I don't cry each time I leave my Dad?  Of course I do.  It's hard - but how lonely it must be for the patient.

My Dad's cousin has Alzheimer's and is in a nursing home.  His wife calls and visits regularly as does a visiting nurse who spends time with him.  Dad's cousin knows who they are and is often glad to see them. These people, and others, make a point of being involved in his life regardless of the disease.  There is still a person in there - a person who feels, who has emotions, and has emotional needs.

If there is someone you have been purposely ignoring (although quietly justifying it to yourself) I dare you to step up and contact them.  Send a card, a note, a phone call, a visit with a gift of a snack is always a nice start.  Don't plan to stay long as they typically tire easily but take a step for them.  Chances are its a family member or loved one who has taken many steps and sacrificed much for you over the years.  It is time to repay them.

You've heard me say this before but it bears repeating:  on my Mom's deathbed, when she was still able to speak; upon seeing the cards, flowers, and presence of so many people around here and the outpouring of love said to me, "why is it that I am so loved this much?"  My response was simple:  because its your turn now to receive that which you spent your whole life giving.

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Lord Grant Me the Grace to Tell Them So

The path of aging is one that none of us can avoid.  We try and one must admit that the typical 50-year old today looks and acts a lot younger than did 50 year olds in 1940.  We have been able to slow the ravages of age on the outside and to some degree on the inside as well.  But in the end, the joke is on us because we will all grow old.  Our hair, if we are lucky enough to keep it, will gray, our teeth will lose their appeal, body functions will dwindle out of our control and our minds will not be as sharp as they once were.  It is a process.  Andy Rooney once said, “It's paradoxical that the idea of living a long life appeals to everyone, but the idea of getting old doesn't appeal to anyone.” 

My parents spoke of their growing years openly and frequently.  My mother fought it with every ounce she had. She took great care of herself from diet to exercise to facial creams and lotions.  Cancer tried having the last laugh but even in her dying Mom remained radiant and beautiful.  I can still see her hands and face moments after her passing; so smooth, so ivory, and glowing.  She was beautiful.  Dad’s rough past and hardworking year’s show but still he looks pretty darn good for being 71 years old.  Alzheimer’s is playing out its cruel hand of punishment on my father from his walking, to his ability to exercise and take in nutrition, and even on his face.  Sometimes I gaze into his eyes and try to find the man of his youth.  That man continues to move farther and farther away but there is still a light that shines out from his beautiful blue eyes.  At times they look at me as if begging for help, curious to know why he is unable to do this or that.  Other times he looks at me with the unfaltering, unconditional love that defines my father and that only a father and son can share.  We embrace every day and the hugs tend to last longer than they used to.  I sense it is his spirit hanging on to every last portion of memory that he is able to, fully knowing that he is being robbed of his precious moments upon every tick of the clock.  There are moments when he seems lost.  His eyes go almost empty and his body appears stressed – unsure of its footing and not sure in which direction to move.  Those are the harsh reminders of age.

My father is falling as graceful as possible in to the abyss that is called Alzheimer’s.  With the love and support we continually shower upon him we can only pray that his winter years are kind and gentle. 

“Prayer of an Anonymous Abbess:

Lord, thou knowest better than myself that I am growing older and will soon be old. Keep me from becoming too talkative, and especially from the unfortunate habit of thinking that I must say something on every subject and at every opportunity.

Release me from the idea that I must straighten out other peoples' affairs. With my immense treasure of experience and wisdom, it seems a pity not to let everybody partake of it. But thou knowest, Lord, that in the end I will need a few friends.

Keep me from the recital of endless details; 

give me wings to get to the point.

Grant me the patience to listen to the complaints of others; help me to endure them with charity. But seal my lips on my own aches and pains -- they increase with the increasing years and my inclination to recount them is also increasing.

I will not ask thee for improved memory, only for a little more humility and less self-assurance when my own memory doesn't agree with that of others. Teach me the glorious lesson that occasionally I may be wrong.

Keep me reasonably gentle. I do not have the ambition to become a saint -- it is so hard to live with some of them -- 

but a harsh old person is one of the devil's masterpieces.

Make me sympathetic without being sentimental, helpful but not bossy. Let me discover merits where I had not expected them, and talents in people whom I had not thought to possess any. 

And, Lord, give me the grace to tell them so.

Amen” 

The Day the Coffee Died...Part Two

It was a crisp, cool fall morning.  The leaves were not yet crunching under foot from the morning moisture and the squirrels seemed busier than ever....OK I can't do this...

so he threw the coffee maker away again...the one we bought for him less than a month ago because he threw out the other coffee maker. Yet, I can't scold him, I can't remind him not to do that, I can't say anything but, "OK, we'll figure something out".  But no more coffee makers.  I believe it may be a good time for Dad to switch to instant coffee, which I'm pretty sure he will not enjoy.  I may be surprised though.  The last time he had instant coffee was about two years ago when Mom was in the hospital.  He hated it.  He took one sip and threw it away.  This time I figured out the issue:  he puts a coffee filter in when the coffee maker has one already.  The water goes in faster than it comes out so you get coffee all over the counter.  I know what your advice is - "you should have thrown away the coffee filters when you bought the new coffee maker"....We did.  Yep.  We did.  And Dad is familiar with these types of machines but one day he woke up and thought, "I need a coffee filter in order to make coffee" and he walked next door to borrow a few filters.  His reality - not mine.

Most people around me will give me their best piece of advice on 'handling' a patient with memory issues.  The advice is golden and each time I hear it it's like I've never heard it before.  It's a revelation and I can't believe that I fail each time I put it in to practice....yeah, I can't do this either...

Notes don't work, people.  It sounds like great advice and it makes sense to all of us but not to a dementia patient.   They don't read them and if you leave them around the house they get thrown away.  Why?  Work with me on this one.

You have no memory issues at all.  Now there's a note taped to the bathroom mirror to remind you to shut the shower faucets off.  But why would you need that note?  You have no memory issue and its common sense to shut the shower faucets off so you throw the note away because, after all, its silly, right?  Are you following me on this one?  You have no memory issue so these notes don't make any sense to remind you of the things that are obvious so why are the notes there?  Throw the notes away after all, you aren't a third grader, right?  Notes.  Silly ideas when you have no memory issue.  His reality - not ours.

The Day the Coffee Died

This morning I awoke to yet another reality call.  It came in the form of a phone call from my Dad.  He sounded upset with the first sound that came from his mouth.  He said the coffee pot was “broken all to hell” and that he wants instant coffee from now on.  I could hear that he basically just had an argument with the coffee maker and it almost won.  In a final act to claim victory he took the machine and smashed it to bits under his foot and threw it in the trash.  To further add injury to his victim he wrapped up the garbage bag and walked down three flights of stairs to the basement and threw the bag in to the dumpster, disposing all evidence that a coffee-crime had been committed.  Upon arriving back home he took all the remaining coffee grounds including the two brand new large containers of coffee, opened them, poured them in to the garbage disposal, and sent it all to a watery grave.

I fought the urge to go a little crazy.  A dear friend had just purchased this coffee maker right after Mom passed away.  Robb and I had purchased two large containers of coffee for him.  So here’s the hard part – remembering the wise words of my second cousin, Jean Clifford (“live in his reality, not yours”), I simply said we’ll take care of it.  I had to fight the urge to say SOMETHING.  I wanted him to realize that none of his actions made sense and then I realize that yes, to him, they made perfectly sound sense.

So here’s the logic path that Alzheimer’s patients follow and you simply cannot and SHOULD not fight it because it is logical.

1.       Coffee pot is not working right

a.      Must be broken

                                                                                                      i.     Throw it out

2.      No coffee maker

a.      coffee grounds not necessary anymore

                                                                                                      i.     Throw them out

I’m upset but there’s nothing I can do about it and all He did was take one logical step after another.  Alzheimer’s does not allow the victim to think through possible outcomes and to problem solve. They no longer have that software.  It’s like asking your computer to open a program with Microsoft Word when you do not have Microsoft Word installed on your computer.  Instead it may open the file as a text file and all formatting will be lost.  It just won’t work because the software is no longer installed.

Today I will go over to Dad’s and we’ll talk about the fact that we have to wait until Thursday, payday, to rectify the coffee issue.  I’ll pray to the heaven’s that the angels guard my tongue and I fight any urge to correct him or instill at least one sense of ‘you were wrong’ in his head.  He’s not wrong.  He’s right…it is his reality, not mine.