Sixteen months ago, in January of 2014, I published an essay, Maturing Into Alzheimer’s Caregiving… a journey from innocence toward freedom …. While it was based on my experience as an Alzheimer’s caregiver it really was about the maturation process and mental health of long-term caregivers in general.  It addressed the traumas and trials caregivers face in the early years while coming to grips with their new role—a role they never wanted and one that could only be learned on the job.  While there’s a lot of generic help available, the bottom line is the individual caregiver is in his or her unique circumstance and has to figure out their actions for themselves.  The turning point comes when they realize that dealing with the disease has no productive end.  In fact, continuing to deal with and focus on the disease is a very toxic activity.  Heroic efforts to deal with the specific disease—meaning total focus on mitigating or reversing the disease—usually lead to misery, disappointment and frustration.  There is nothing anyone can do about stopping or slowing Alzheimer’s—it is a death sentence.  For other long-term diseases, the person’s survivability is at high risk.  Caregivers usually reach a point of awareness on their caregiving path where they know that there’s really no hope for their loved one’s survival.  At that point, some, for whatever reason, can see only despair and depression for a situation that has no way out.  However there is an alternative—the “mature” alternative.  This alternative lets go of dealing with the disease and chooses only to provide compassionate care for the person.  This can be a very difficult decision as we are socially conditioned to do everything possible for an ailing loved one.  I chose the “mature” path several years ago and this essay addresses my journey since that time.  Remember that my experience is with an Alzheimer’s care receiver, but the comments that follow apply to a broad spectrum of caregiving situations.

When I chose to let go of dealing with my wife’s Alzheimer’s, I set my three priorities as: 1) her safety, 2) her general health, and 3) her general wellbeing.  There would be no heroic efforts.  That posture has greatly relieved me of the very stressful efforts to control her disease.  However, even with that relief, the list of new and unresolved issues seems to be infinite at times.

So you’re mature, so what?

So now, sixteen months later, I’d love to say my “mature” stance has brought about a significant improvement in my life.  Alas, if only I could say that.  An old saying, credited to several sources in the early 1900s says, “If you’re so damn smart, why ain’t you rich?”  The analog for the Alzheimer’s caregiver is, “… if I’m such a ‘mature’ caregiver, why does it still hurt?”  Why does it stress me?  Why does it have me sobbing with my head in my hands at the slightest emotional trigger?  Why does it bring up so many insecurities?  I like to describe myself as a recovering Type A personality and a well-integrated Enneagram 8.[1]  I’m not supposed to have insecurities!  The essential message is that even with a different attitude, life really hasn’t changed that much.  This is much like the story in Chop Wood, Carry Water.[2]  In that story, a monk leads a dull, regimented, routine life in his remote shack.  All he seems to do is chop wood and carry water.  He leaves his shack and travels the world to gain enlightenment and eventually does so.  He returns to his shack and, of course, even though enlightened finds he still chops wood and carries water.

While I don’t live a dull life, I certainly live a very routine, highly structured life.  My wife, Pat, and I get up, have coffee, shower, eat breakfast, and I take her to day care.  During the day I do the laundry, dish washing, house cleaning, home maintenance, build the week’s menu, and shop for groceries.  I also take care of the finances and try to squeeze in writing, woodworking, and having coffee or lunch with friends.  This we do four days a week.  On the other week day, I take Pat to doctor’s appointments and other errands.  She always has to come with me as she requires 24/7 supervision for her safety.  On the weekends I generate activities to keep her engaged, whether it’s yard work, washing the car, going to church, or going for short walks with the dog, or whatever.  My major challenge is keeping her engaged as she cannot stay still for very long.  The stress is that the activities have to be contiguous.  There can be little idle time.

So how has life been now that I’m “mature”?  I live life as a mosaic of small images and moments.  Life is taken in small steps.  I have no grand plans for major events during the next few years.  I can’t see clearly that far.  Pat’s contextual frame of reference is minus one minute and plus two minutes when she’s really lucid.  At other times the context is the last four words.  What will happen today and tomorrow?  My, and her attention, is now.  We can’t travel as she might wander in the night from the hotel or campground and become lost.  We can’t go to a movie or watch one on the TV as she cannot follow the story or remember the characters.  I have daily one-way conversations with Pat.  What will we have for dinner?  Isn’t that a beautiful sunrise?  It was great to walk the dog in such fresh, crisp air.  Pikes Peak looks great with all the fresh snow.  Shall I do English muffins with breakfast?  Come on, let’s go to the Pioneer’s Museum and see what they’ve got.  Would you like canned peaches or ice cream for dessert?  Are you ready to brush your teeth and get your pajamas on?  While they usually don’t have much meaning for her, they do sustain a close bond helping her see me as her rock.

During the past sixteen months Pat has slipped dramatically.  In early 2014 she didn’t require very much help with dressing, eating, or bathing.  Today, each of these activities of daily living requires significant assistance from me.  Actually, she cannot dress or shower without my help.  For her long term care insurance, that means she is chronically ill and they will now pay for her time in an assisted living facility—either short-term respite care or fulltime residency.  This one thing has removed a big unknown for me although daily life is still there—I still chop wood and carry water.  The first time I put her into short term respite care, for eight days, I was almost paralyzed with worry about her wellbeing.  I forced myself to let go of my total control of her care.  I had a very hard time even trying to focus on the things I thought I’d be able to do.  Only a few of those items actually got started.  I didn’t go anywhere that long week—I had to be nearby in case the facility called me.  My cell phone was on 24/7.  I felt as if the total responsibility for her care was still mine.  No one can take care of her as well as I can!  Of course they didn’t call because they are trained and set up to take care of any emergency that comes up.  I knew I had to go through the process of letting go no matter how stressful it was.  I was lucky I had a trusted (and experienced) friend willing to drop in several times to check on Pat’s care.  As it turned out, Pat fit in very well and didn’t miss me.  I now have two short term respites planned where I will be out of town each time.  I know I won’t be able to totally let go of my concerns, but it will be a lot easier.  Of course, having the long term care insurance pay for the respite care is a major plus.  At $200 a day the insurance is essential unless you have very deep pockets.

Planning … is this a joke?

I’ve learned a lot about being in the moment.  Through Mindfulness training and necessity, I live close to the now.  I’ve pretty well drummed my Type A behavior out of my way of being.  However, I am a planner and a big-picture person.  So, every once in a while I slip into future planning.  It only lasts a few moments as it becomes quite obvious I have no idea what the future will bring with its new constraints and boundary conditions.  I can see only vague possibilities.  I have no idea how or if my health will change.  I’m very healthy for a 73 year old, but life does intervene.  I have no idea how Pat’s condition will change or when changes will occur.  My gut feeling is that she will be in a fulltime assisted living/memory care facility by the end of 2016.  My gut also tells me that she will only live for another four years.  I shared these feelings with two professionals in the Alzheimer’s field and who are familiar with Pat.  They both agreed with the four year estimate and said 2016 or sooner—meaning the end of this year—for being in a facility.  These estimates are interesting and informative, but not something to make firm plans on.  Moving your loved one into full time memory care—meaning for the rest of their life—will be a decision needing a lot of soul searching.

How do you make the decision to place your loved one in full time residency?  What are the decision factors?  Do I use the personal guide that says you should only do what you are both willing and able to do?  Or do I look at it from Pat’s wellbeing?  Will she have a higher (or equal) quality of life at home or in the facility?  Will it be a mix of these two or are there other considerations?  Do I wait until she doesn’t recognize me in any capacity?  Do I wait until she needs significant mobility help?  Do I wait until she is incontinent?  Can I accept that I and I alone have the authority and responsibility to make this decision?  Can I live with that decision?  Can I really let go of the control?  The more I think about this and share with other caregivers, the more I realize I need to shift my focus from Pat’s care to my care.  What that means is I should look at how I’m doing and for my triggers that say I should put Pat in full time care rather than looking at Pat for those triggers. This is a hard concept to take on as the focus of most training is on how to take care of the Alzheimer’s person.  There’s training on how to take care of you, but its focus is on self-care, not looking for the triggers to put your loved one into full time care and develop your new life.  This is a significant distinction often overlooked in “official” classes.

Day-To-Day Stuff

Unless you’re a masochist, Alzheimer’s caregiving is never desired or sought.  Alzheimer’s happens to a loved one and caregiving is thrust upon you unsolicited.  I was unprepared and there was no way to reject it.  The learning curve is vertical because, by definition you start out behind the power curve.  You know nothing, but are required to perform immediately.  While there are many guides for caregivers, none tell you how to deal with your day-to-day minutiae.  They cannot—your situation is unique.

I fancy myself a woodworker.  I enjoy making cabinets and other useful objects.  I have a nice, but compact, workshop with the essential power tools.  I’ve also done free form and relief carving.  Working in my shop is therapy for me.  How much have I been able to do in the last two years?  Very little.  I have the materials, the skill, the plans, and the desire, but there is just not the time, or the energy to focus on actually doing the queued projects.  Starting is one thing, but sustaining the effort is another.  The number one rule of my universe is: life will intervene without consulting my script.  There is always one more thing, one more thing, to get in the way of me being me.  A trick I use to remind myself that I’m alive and moving forward is to walk as straight and tall as I can.  It’s an old military way of being, but the world does look differently standing tall than when slumped over and looking at the ground.

It would really help if I had more hours each day.  But, of course, I’d just want even more.  I can do the things that maintain my equilibrium and control my anger, but it takes a very serious and sustained effort to do that.  The thing that has helped me has been to focus on what I’m doing for Pat, what my compassionate focus is.  How many times have I stood wet and shivering after getting out of a shower with Pat while I dry her off?  How many times has my shower been interrupted when Pat opens the door and wants help getting her shoes tied?  Is it easy to be angry?  Absolutely!  But each time I remind myself that I can choose how to respond.

In the background of this day-to-day stuff is a tiny thought of who I want to be after Pat is no longer in the picture.  This effort is fraught with emotional landmines such as doubting the possibility of a new life, facing all of my many insecurities, and being caught between wanting to plan and knowing I can’t.  Working to maintain my equilibrium and believe in a new life is crazy making at best and depressing at worst.

Enter the wounded healer

I’ve had numerous people argue with me when I say caregivers are damaged or wounded people.  Of course, caregivers are not the only wounded people—anyone who has experienced a major trauma, physical or emotional, has a new life after their so called recovery.  They are wounded from the abrupt change of life course forced upon them; a course change that they cannot reverse.  It is a place where deep pain enters and leaves its mark.[3]  The mark is indelible and always present in the dark corners of the mind.

Caregivers carry the memory and desires of the past, but can only move forward on the new course.  In my case, Pat had the memory of almost 51 years of marriage evaporate in one night three years ago.  Our retirement plans for travel with our 5^th wheel RV, visiting the kids and grandkids, enjoying our social groups, and just enjoying being with each other for birthdays and anniversaries all evaporated.  They will never happen again with Pat.  That’s grief, that’s a deep wound, that’s a realization that will never be gone any more than the present ambiguity of the future.

Self-sufficiency lost; you can’t go it alone

One of my most grating realizations is that I can’t do Alzheimer’s caregiving alone.  We’ve all, and I especially, have been raised to be self-sufficient.  I had very little childhood.  I was working on my building contractor father’s construction jobs when I was 11 years old—working 40 hour weeks (summertime) as a laborer with my own set of tools.  I was taught a strong work ethic with an expectation that I should be able to figure things out for myself.  Being in the Alzheimer’s caregiving zone, I now find that self-sufficiency is not enough.  I need people contact.  I need people that may not understand all the issues, but want me to know that they care.  I need to know I’m not alone in my situation.  I need to know I cannot figure it all out by myself because I haven’t lived through the entire cycle.  So, what to do?  I’ve found that going to coffee or lunch with a friend and not focusing on the “Alzheimer’s Situation” is very helpful.  It reminds me I am.  The flip side of that coin is going to Alzheimer’s support groups or meeting with professionals in the field and focusing on my situation.  Denial is not acceptable at this stage.  However, it’s interesting that I’m still in denial about how much I can really do.  I’ve got queued major projects with grandiose expectations for completion in the next 90 days.  I wonder how many of them will still be there a year from now?

I’ve learned a hard lesson (actually many) over the past half dozen years.  Being self-sufficient tends to make you a loner and isolated.  You always project an aura of self-confidence and knowledge.  But, while I have a very strong sense of self and I’m very well grounded, I’ve had to ease my grip on total self-sufficiency and allow myself to be vulnerable.  It sounds counterintuitive, but it takes courage and self-confidence to be vulnerable.  This isn’t bragging; it’s just the way things are.  You have to be able to live with inane and mindless criticism as well as uninformed suggestions of things you should do.  You have to be willing to hear honest and loving criticism and valuable suggestions.  I’ve had to be willing to loosen my grip on who I think I am and what I can do.

Emotional Pain

There have been a number of sources for emotional pain.  Just under the surface of day-to-day stuff is a very strong emotional tension.  It’s like the air in a fully inflated balloon.  I’m on the outside surface and the slightest pin prick will collapse my world.  Some years back when the diagnosis was confirmed and Pat didn’t know me as her husband anymore, I spent a number of times crying with the realization that I really was losing her.  Not too long ago, a friend sent me an internet link to a video clip of Tim McGraw singing Glen Campbell’s song; I’m Not Gonna Miss You.[4]  I watched the video and the next thing I knew my head was in my hands and I sobbed for five minutes saying over and over again, “Pat I love you!”  When the balloon breaks, I cannot contain it.  A short period of feeling down and I’m easily overwhelmed with insecurities and depression.

When Pat is home, on weekends and the non-day care day of the week, it is very easy to become frustrated with her inability to do simple things such as putting the silverware on the dinner table.  I have several physical issues that run my energy very low late in the afternoon—frustration waits eagerly in the wings.  Mindfulness training has taught me to take a step back, breathe, assess the situation, and then mindfully move forward.  What I remind myself of is that Pat is a five year old in capability even though she has a 74 year old body.  If you had a five year old child, wouldn’t you do all you can to take care of them?  Of course, our memories of having a five year old are of all the positive expectations of their mental and physical growth.  With the Alzheimer’s person, the future has only a continuing downhill slide.  There are recurring episodes when she has a need, such as getting her shoes on or helping her put on a top.  There is often a moment, just a moment, of frustration or anger especially with a new need.  Then I gratefully help her.  My gratefulness is my affirmation that caretaking is a ministry of compassionate care.  In the background I have questions hanging there.  Am I doing too much?  Am I creating a dependency where it wasn’t needed?  So far, I’ve felt I’ve only responded when there is a real need, but the questions never go away.  I’ve been able to bounce back after a series of “need” episodes; however it takes time and effort to come back.  There is no pattern as to when an episode will occur or how long it will last.  I’m on an emotional rollercoaster and it will continue for the foreseeable future.  This is not just me as many others I’ve talked to tell a similar story.

Self-Care

The words true grit, come to mind.  I also think at times that I don’t live, I exist.  Will that grit grind me down so I will be gone when Pat passes away?  If I just exist now, will I be able to survive and have a new life?  Real survival is a lot more than just doing a series of activities.  I am reminded of a few words from Garth Brooks’ song, Standing Outside The Fire:[5]