When taking care of a Loved One who is declining, there sometimes comes a point at which there is a transition from Husband or Wife, Mother or Father, Son or Daughter, to “patient.”  A sort of clinical distance emerges and the tasks are carefully and responsibly and compassionately done with gentle concern.  That clinical distance helps the Caregiver keep from getting lost in the emotions, disabled by his/her own feelings.

Up to the very end, I never ceased to be her husband first and foremost.  There was never any clinical distance.  Mary Ann was never a patient to me.  She was my wife.  The way I kept from being disabled by my feelings was to live in what I have recently described as intentional denial.  There was never any waning of the intimate romantic feelings as she became more disabled.  In fact, if anything, they grew stronger as our battle with the disease got tougher.  Certainly we had all the usual times of irritation and snipping at one another.  That comes with longevity in a marriage.  It means nothing other than that the relationship is secure enough to provide the freedom to be grumpy with one another at times. 

What I will describe next will sound as if it is at odds with what I just said in the previous paragraphs.   What I said above and what I say next are both the truth, even if it seems impossible for that to be so.

After I retired to take care of Mary Ann, I struggled to find a way to feel a sense of accomplishment each day.  When I was working there were all sorts of external signs that I was doing something worth doing, something that had meaning and purpose — a job.  When I retired, everything that had confirmed that I had a job ceased.  One day I had a job as the Senior Pastor of a large congregation with a staff for which I was responsible.  The next day, I was at home with Mary Ann, helping her just as I had been the time I was at home and not at work before I retired.    

There was no tangible evidence that I had worth.  Constant care was needed, so I was working more and harder than when I was actively serving the parish.  There was no paycheck, nor were there people telling me that I was doing a good job.  It took some months and some mental gymnastics (and reflecting on the matter in dozens of posts on this blog site) for me to realize that what I was doing with Mary Ann was not only as important, but more important than what I had been doing when I was working for pay. 

The result of that realization was that the caregiving I was doing became my job.  I came to treat it as an important job, each task needing to be done well, taking all the attention and skill I could muster.  I needed to become expert at it, doing it in a way that reflected back to me a sense of accomplishment. 

Caring for Mary Ann became my job.  When that transition came, I felt as if I was freely chosing the job.  There was no reason for resentment since what I was doing was my profession.

Caring for Mary Ann became my job, but Mary Ann never ceased to be or to feel like my wife.  I was her husband and she was my wife.  I do not deny that what I have just said makes very little sense.  All I can say is that is exactly the way I felt.  For the last two years especially, when I retired to do full time care, Mary Ann was my wife and caring for her was my career. 

I can’t explain to you how it worked, why it worked.  It just did.  I am grateful that it did.  Mary Ann never had to suffer the indignity of being my patient.  I didn’t have to give her up until she died.  I got to have my Beloved Wife with me every minute of our marriage.  The result of doing it that way meant that when she died, it hit very hard.  We did not ease into it.  I did not get accustomed her leaving before she actually left.  It has been excruciatingly painful, but I am not sorry that we did it that way.  Even knowing the depth of the pain, I would do it no differently were we to have to do it again (God Forbid!!!)  Yes, I would try to be kinder more of the time, more understanding, less grumpy, more affectionate, but I would not change the way we approached our relationship. 

I was her Husband and I was her Caregiver.   She was my wife and taking care of her was my job.  While thinking about it that way helped me feel worthwhile, the truth is, caring for her was exactly what it meant to be her husband.  We loved each other romantically, in spirit, in words and in actions.  As devastating as it has been to lose her from here, I feel full of deep joy that we got to experience that kind of love.

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That is a reality that Caregiver’s often simply refuse to accept.  I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix.  My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her. 

When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable.  The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think.  In a group, they are the ones that organize activities, the ones who actually get the work done.  The trouble with that view of the world is that it is an illusion.  None of us controls the world around us, really.  We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world. 

Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough.  If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel.  There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease.  Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again.  I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.”  I, her Caregiver, was “they.” 

The truth is, Caregivers don’t own responsibility for their Loved One’s sickness.  Caregivers cannot fix what they have no power to control.  Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones.  Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care.  Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates.  Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments.  That is just the way it is.  Knowing that can eliminate a lot of wasted energy.  Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers. 

In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her.  If I could have made her better, I would have.  I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia.  She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove.  While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation.  She needed to deny part of her reality to keep from crumbling under the weight of it. 

Her coping mechanisms worked.  She never crumbled, not even close.  Spending 24/7 with someone results in getting to know one another very intimately.  It would be virtually impossible to keep up some sort of false front.  While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered.  She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm.  The times that was not so happened in hospital stays.  It is why we both hated them so.  A sort of psychosis would emerge as the days went by.  In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible. 

While I did not have the power to fix her, I did what I had the power to do.  She remained strong, and when the time came, she left here to find healing and wholeness.  This is one of those times I lament that tears do not easily come.  They lay just behind my eyes.  It is a sadness that I cherish.

As the Parkinson’s took away Mary Ann’s ability to do so many things, she needed my help and that of the Volunteers to do fulfill the basic human needs.  The doors had to be widened for walker and wheelchair (thanks to the KC Crew of friends).  The carpet was replaced with something firm enough to allow the walker and the wheelchair to roll.  We got adjustable beds to help with movement.  The bathroom was remodeled to provide a roll-in shower.  Grab bars were added to the bathrooms, tall toilet stools installed.  There was a shower chair and then a bedside commode as time went by.  A portable ramp was purchased for use when needed.  A rolling Hoyer Lift was purchased for times I might not be able to get her up off the floor. 

We purchased special dinner plates for those with limited dexterity, then had ceramic ones made by a local potter.  We were given a set of large handled silverware, easier to grab hold of.  Bath Aide Zandra was engaged to come and give her showers twice a week.  Debbie from Home Instead came early Sunday morning for the last few years I was still working. 

Volunteers by the dozens (she called them her Angels) came many hours a week to help her with her personal needs, as well as keep her company.  I helped her turn in bed and go to the bathroom or use the bedside commode multiple time a night for many years.  I or the Volunteers helped her get dressed, move around the house.  I fed her sometimes at first and later all the time.  One way or another, I obtained or prepared food for her, sometimes Volunteers provided it. 

Mary Ann needed my help and the help of the Volunteers.  She was never needy.  To put it bluntly, she needed my help, but never needed me.  That sounds like it could be a bad thing.  It was not.  She loved me;  she chose to marry me, I cannot be anything but honored by that.  She did not need me.  She was always a complete person without needing anyone else to complete her.  Given the pain I have felt at her loss, I suspect I was the more needy one.  When I think about it, sometimes when I caught sight of the fact that she didn’t need me, I wondered if she actually loved me as much as I loved her.  It was not that she didn’t love me completely, it was that although she loved me, she didn’t need me. 

Realizing that was sometimes a little scary.  How could I count on someone who didn’t need me to actually love me?  I would be so much more secure if I had some leverage.  If I had something of value that she needed so that she would have to love me, then I could be sure never to lose her.   That thinking is almost like feeling as if I needed to hold her hostage, to have some control on her to make sure she stayed.  How could someone just love me, choose me?  I grew up with the same lack of self-confidence that often comes especially with adolescence. 

I did not actually live in fear that she would leave.  We had chosen one another and made a public declaration that we had done so.  We promised faithfulness to one another.  We kept our promise.  It is nothing out of the ordinary.  At the Hospice Grief Support Group meetings, around the table are folks, some of whom were married for sixty or more years.  The Kansas City crew of friends have all been married way over forty years.  Many of the people to whom I have served over the forty years of ministry have been married for multiple decades.  One couple made over 75 years of marriage.  Since Mary Ann died after we were married for 44.5 years, I have been married the shortest time in our family of five siblings.  Our parents were married 59 years before Dad died. 

She wasn’t needy.  She didn’t need me to make her whole.  She loved me, chose me and committed her life to me as I did mine to her.  Yes, she came to need my help, but she was never needy.  It was an honor that she chose me and loved me.  It was an honor that she allowed me to help her.  I could not have asked for a more privileged life with her.  I am so sorry that she had to suffer so many indignities and infirmities.  That is the source of my pain and sadness.   She never lost her strength of character — and she was a character!

It has been exactly four months to the day today.  That dawned on me when I signed in at the Support Group this afternoon and saw that the person who signed in before me had written today’s date.  I no longer have the privilege of caring for her, but my loss is her gain.  She is whole again, no longer in need of my help.  She is completely immersed in the unconditional love of the One who gave, who gives her life – now free to live that life without the limits of the Parkinson’s.

thecalltolive.wordpress.com

http://thecalltolive.wordpress.com

In the last Hospice Grief Support Group meeting, the observation was made that for many, the time of Caregiving is a time of grieving that accomplishes some of that task before the Loved One dies.  As I review the Caregiving role, especially the last couple of years of full time Caregiving, it is clear that we lived in denial.  Mary Ann’s denial was palpable.  She simply put out of her mind any thoughts of end times.  It wasn’t that she didn’ t realize what was happening.  On rare occasions, she revealed that at some level she was fully aware of what was coming in the not too distant future. 

She simply chose to engage each day as a living person rather than a dying person.  I chose denial also.  For us it seemed to be the only way to live fully each day.  Living in denial freed us to squeeze the life out of every moment we had together.  My denial was intentional.  When it came to using every tool available to sustain quality of life (more so than quantity), we did that.  I advocated for the best available treatment for her.  Having done that, found the best tools available and used them, denial as a daily mode of operation worked. 

One negative side effect was that I did not do anything to prepare for what to do when the end came.  While it is possible that the intensity of what I have felt, especially in the first ten weeks, could have been lessened in some way by choosing not to live in denial, I do not regret that choice.  Had I not lived in denial, I could not have given Mary Ann the respect she was due as someone fully alive, a force to be reckoned with.  Had I treated her in a sweet and syrupy way, displaying sympathy, feelings of sorrow for her, it would have stolen from her some of her dignity.  While I could be accused of rationalizing my own unwillingness to face the truth, I am convinced that we needed to be 100% alive while we were both alive. 

As to the negative side effect, I consciously chose denial fully aware that just as we were immersed in life until very close to the end, I would have to immerse myself in the grief and deal with it when it was time.  That is what I have been doing.  I still contend that taking on the grief fullyis the best way to get the intense grief work done so that new life can emerge.  That new life will not be free from pain but will allow that life the freedom to include joy again. 

When I was standing at the most beautiful rest area along a highway I have ever seen, I realized that sometimes beautycan hurt.  The rest area was on the shore of Rend Lake in Southern Illinois.  The sky held cirro-cumulus clouds, puffy and whispy, shaped in ways that stimulated the imagination.  There was a breeze that was warm and cool at the same time.  I realize that makes no sense, but that is how it felt.  The weather was perfect, the view impressive.  There was a huge expanse of well-kept grass that held picnic tables on slabs, some covered with a roof.  Some folks I encountered had a picnic supper there.  They always stopped there on their way from Chicago.  I spent about half an hour there, reading for a while, watching birds with my binoculars, walking around enjoying the view.  The experience was also laced with the pain of not being able to share it with Mary Ann.  I have often noticed that for me there is a longing to share with others any experience of profound beauty.  I have appreciated beauty without the pain at times, as when I stood at the top of that mound in the Flint Hills (see former post). 

I would not suggest that the denial we experienced was the way Caregiving should be done.  I can only say that it worked for us.  Would it have been better in any way had we been more realistic and accepting?  There is no way to know.