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Janus

Even without the two faces of Janus, AD caregivers often see their tomorrows filled with the repetition of their yesterdays.

It’s January again and at times I want to ask, “Didn’t we just do January?” The answer coming back would be, “No.  That was last year and 11 months have transpired in between.”  I really know that, but there was something about that first day of 2012 which brings about thoughts of Janus the Roman God of New Beginnings after whom the month was named.  Being who he was it is said that he had two faces: one looking forward and the other looking back.  While Janus probably didn’t have my caregiving assignment, or if he did he never mentioned it, I see a disheartening sameness in my life while looking in either direction.

Being able to look back is a good thing, and in that respect we are much like the mystical god, but better because we who are mentally healthy can look back without needing a second face.  We have memory and can learn from history – especially our own.  We learn from making mistakes, taking wrong turns in the road, and what works and what doesn’t.  Furthermore, we can look ahead making daily plans, and plan for the future. My problem is constantly seeing more of the same thing coming in my tomorrows as filled my yesterdays.

Suppose that by looking back and ahead we see only repetition.  I guess that’s where I was as this New Year began; living in “Groundhog Day” – the movie – without the romance.  Bill Murray’s character Phil, an angry, arrogant, conceited jerk, had to keep repeating February 2, until his attitude changed, or until he got it right.  Andie Macdowell’s Rita, the love interest, eventually helped him through his maze of repetition producing a new, reformed and lovable Phil; a delightfully funny movie which Ken and I enjoyed together long before his Alzheimer’s was even suspected.

Remembering the movie, though, I found I was identifying with Phil’s frustration of constant repetition – without the laughs.  It’s true that I’m not tied to a stockade then released to perform certain duties, but it is the repetition of those twice-daily duties from which there is no escape: getting Ken up, cleaned and ready for breakfast each morning, and getting him cleaned and ready for bed in the evening.  (It is much more complicated and emotionally wrenching than it appears in my simple sentence, but long ago I promised myself to always be discreet in my writings about my husband.)

My caregivers, wonderful though they are, cannot do these chores alone.  I am their assistant, and I know I am blessed beyond measure to have them.  I also know that having Ken home is so much better for him, and me, than placing him in a care facility. Yet, the schedule inhibits my planning a totally free day.  No matter what I’m doing I must stop at designated times and with my cell phone in a pocket I’m always on call for undesignated times, which can put a damper on my project regardless if it’s at a crucial point or not, and help the caregivers.  That’s when I feel as if I’m living in “Groundhog Day” – the movie.

Admitting to me that I dread the routine I also recognize that the dread causes a buildup of resistance in planning my day.  Recognition is a first step.  While I understand that the day will be interrupted, it’s the accepting of the interruption that is difficult – and I ask myself – why?  After all, once involved in any project we can be interrupted in anything we do; altering our focus by a phone call, a visitor, a question, or a problem with the project itself.  Then I realized those interruptions are, not only easily accepted, but often welcomed as a mini-break because they were never built into the day’s plan as a constant, as is my husband’s clean-up time.

When Ken retired we became very spontaneous, often ditching less-important, flexible plans for some fun times spent together.  I suppose that loss of spontaneity is rather debilitating adding to the lack-luster feeling of sameness.  Actually, it can be rather hellish when time offers us no opportunity for change in our life; little variety,  few surprises, no rewards, no excitement and not much in the way of looking forward.

With that in mind, and as a caregiver who has been putting break time on hold during the past Holidays, I need to move headlong into the tomorrows and make positive plans for this coming year, and I’m the only one who can do it.  Not resolutions, just plans, even sketchy plans including projects and fun, but in the doing I’ll still need to schedule those time periods to accommodate my daily duties as assistant to Ben and Crizaldo which is a must, and learn to conquer my feelings of dread and resistance.  A recent email message offered a really great motivational shove: “Life has no remote.  Get up and change it yourself.”

It is essential for my own well-being to get out more with my movie group, my lunch group, and with Madalyn where we meet at Wendy’s for a baked potato with extra sour cream, butter and no salt because periodically we deserve a two-hour, carefree lunch.  I might even plan on painting the living room.

I know I don’t have all the answers to lighten up the tedious work of caregiving and the reality of losing my husband to this cruel disease.  What I do know is that I don’t want to live my life in the sameness of “Groundhog Day” – the movie – no matter how funny it was — because even never-ending funny without any hope for change can be hellish.

Photo courtesy of http://www.flickr.com/photos/forresto/4258770494/

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hammock

Being unavailable to my caregiving responsibilities was like going on vacation.

I recently took some time off to have my gall bladder removed.  Golly, but body-part removal sounds ghoulish — even neglectful or careless although I know that isn’t true – things just happen. Furthermore, Dr. Frankenstein is not my surgeon. Replacements and repairs sound all right – like putting a new engine in a car – a pacemaker, new hip or knee replacement.  That sounds like good maintenance.  It’s the removal word that sounds menacing, discarding – like we’re throw-a-ways — like taking the car to a junk yard.

However, that comparative idiosyncrasy exists only in my imagination.  Actually, I had a good-size stone which produced some severe stabs of pain and some degree of discomfort, but never a continuing 10-on-the-chart pain, which was a good thing.  Nevertheless, a lack of urgency placed the procedure into an elective surgery category.  My surgeon’s advice:  it should be removed.  So I was faced with having a body part taken out – scary.  I mourn a tooth extraction, now I was considering the removal of this important and useful, but expendable storage/distribution organ which has been with me all of my life: a part of me.  It was time to share this news with family and allow for other opinions, and it’s times like this that I feel so alone and really miss Ken.

Years ago having one’s gall bladder removed was a major, lengthy hospital stay, long-recovery operation.  Today, using laparoscopic surgery, it’s an in-and-out ambulatory procedure requiring three small, intentionally placed slits in the upper abdomen and an interesting reconfiguration of the navel. Yet, even with family input, I debated whether I should wait for a No. 10 on the pain chart.  I conferred once again with my p.c. doctor (who believed it was warranted) my dermatologist (with whom I had a chance-same-week appointment) — she advised that I should do it — and finally I shared my hesitations with another doctor during my pre-op appointment.

I knew that it wasn’t going to get better even though many people carry a gall bladder filled with stones and never feel even a twinge. The most compelling reason for me to have it done before I was driven to consent by a siege of No. 10 pain was because I am the prime caregiver for Ken.  Everyone in the family would best be served, including me, if it wasn’t an emergency situation.  As the pre-op doctor and I were talking about my husband having Alzheimer’s one of the nurses overheard and after the doctor left, she suggested that at some time I really should get away for a rest – whether I did the surgery or not – she felt I was ready for a respite: a pause in my care-giving duties.  I assured her I was all right and that I wouldn’t consider traveling more than an hour away in case of him having an emergency.  “Then,” she said, “You should take some time off and be unavailable.”  Continuing, Nurse Nancy explained that she had cared for her mother who was a victim of AD, and her sister came periodically from out of town to relieve her.  “I never went anywhere either,” she said, “but when my sister was with my mom I was ‘unavailable.’  You’ll be surprised how refreshed you will feel.”

Following my pre-op appointment I was mentally ready for the procedure and made arrangements with our daughter, Debbie, to come from Utah to be at home with me and Ken for three weeks.  Although most of our grown children are self-employed, she is the only one who has the flexibility to bring her work with her. 

She arrived as scheduled, helped Ben while our daughter-in-law, Sabina, accompanied me to the hospital and brought me back home to my waiting bed for some R & R.  Debbie continued helping Ben and pampered me when necessary with other family members nearby as backup.  Furthermore, I happily found myself totally unavailable for anything outside of my own personal needs. 

I cannot express what an incredible sense of freedom I felt.  It isn’t that helping the caregivers with Ken is so difficult because it isn’t.  It’s just the responsibility of caregiving is relentless when done every day 365 days of the year.  Scheduling is unbroken and it’s the unbroken part that becomes not only relentless, but stressful which usually goes unnoticed because it’s a silent, consistent buildup of tension.  The wise nurse knew exactly what she was talking about.

Up and about I was back checking my computer the next day.  Opening my email I found that my personal address book had been hacked and the hackers had sent out an ad under my name for weight loss.  Several of my friends sent it back with questions.  Emailing everyone on my list I stated that I had not mailed the ad, and then changed my password.  Hopefully, that will eliminate the problem of further intrusion – till next time.  Coincidentally, the timing couldn’t have been more on target lining up perfectly with my surgery, and I did see a little humor in the entire scenario.  The text read that the recipients should use the product because, as stated in my bogus testimonial, I had lost 29.2 pounds in the last 30 days.  I thought about the troublesome stone which was now gone, “It was like your father’s,” the doctor had explained, “about the size of a small egg.”  Remembering my erroneously reported weight loss, and although shedding a few pounds in never far from my personal goals, I’m sure glad my small egg didn’t weight in at the better part of 30 pounds.

You ask if I am still enjoying my recuperation.  Without a doubt, I am.  However, because I feel so good I must remind myself periodically that I am still recuperating.  Following doctor’s orders I’m not lifting heavy boxes or mowing the lawn.  Debbie and the caregivers haven’t missed a beat in Ken’s care.  Perhaps he too is appreciating a change, and I am comforted that he is well and as happy as a victim of AD can be.  From the comforts of my own home I can watch from afar yet spend time with him as a visitor, all the while making myself very unavailable for any of his needs.  If it weren’t for a few tender spots in my torso I could lose myself in a book and even pretend I was on vacation.

Photo courtsey of:  http://www.flickr.com/photos/chumpolo/511227025/

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