To Wander

When I think of wandering it is Wordsworth’s “I wandered lonely as a cloud…A host of golden daffodils”.

There is a happy aimlessness, a feeling of discovering something new, exciting and surprising.  I think pleasant thoughts when I think of wandering.   I think of freedom, to just be.

As a caregiver ‘to wander’ takes on a whole different meaning.   To the wanderer, your loved one with dementia it is a different kettle of fish.   To your care team wandering is a huge red flag that signals a myriad of issues.

All the nuances of the meaning were brought home to me recently.  I must confess that my definition did not undergo a sea change; rather it just expanded in meaning to incorporate the alternate reality in which I now live.

So what happened?

My Bert asked me to look at his belt.  He thought it was twisted.  It was not.   “Good,” he said then told me he would go and sit in his chair for a while.  That usually means he is going to take a nap.

I went to the computer, replied to three messages and began to read a news editorial.  I was perhaps one third of the way through when I heard a slight commotion at the front door and my Bert saying ‘”Thank you.”

Nothing to worry about I thought as I know my Bert loves to answer the door and my wonderful neighbours do come with offerings of goodies on a regular basis.  I got up in no particular hurry intending to see which one had brought an offering and to add my thanks.

Surprise!   It was a neighbour, but instead of cookies or muffins, she was bringing my Bert back from the end of the hallway while telling him: “See, you are home.  Here is Paula.”

My Bert was ecstatic.  He kept saying thanks and how it was a good thing she knew where he lived.  He hugged me, kissed me and blurted: “I was lost.  She brought me back.” Then he got teary eyed.

My brain went into overdrive.  Wandering has begun so I need to secure our home.  I need something on both front and balcony doors to deter or prevent easy exit.

The sucker punch of my Bert not recognizing me was nowhere to be seen or felt.  It was pure analytical thinking with a heavy dose of organizational skill that was foremost.   Problem solving mode kicked in.

Whenever there is major change or activity developing in your loved one you must report it to your professional team.  There are four people to whom I report.  Each one expressed a deep concern at this new behaviour.  The seriousness of it was unmistakeable in voice, concern expressed, mannerisms and instructions meted out.  All remarked on how ‘dangerous’ this behaviour is.  I was a little amused.

Sure, wandering is very serious.  There are a number of pamphlets about it.  It is a major concern.  I know that, but coming after my Bert not recognizing me deflated its significance.  Also, I could do something concrete about this.  I had some control and a plan going forward.  This was relatively speaking a piece of cake.  

My perspective and that of the professionals were quite different even though we all started from the same place:  When a person with dementia begins to wander it is perhaps the most sombre indication of major decline in our loved one.

What is the difference?   My professional care team is wonderful, caring, and observant and works with me to give my Bert the best quality of life possible.   I am grateful for their help, advice and guidance.  I know I can depend on them.  However, they are not deeply, emotionally, intrinsically involved with my Bert.   They do not share hearts with my Bert.  They deserve high praise for the great job they do.  I know they are in our corner.   That is more than enough.

I have proof that emotional stress is far worse than physical stress.  I am physically bone weary, but I can hope for relief.  I have proof that the deeper the love, the deeper the hurt.  There is no relief for that. Love’s open door is not for escape but to draw in and enfold.   I do not need any lock or alarm on love’s door.  That remains always open and endures the kicks, the punches, the heartaches.  It is the physical door that needs to be secured.

The Meander:  Our home is now secure.   It is such a simple gadget a toddler can open it.   I am the one deficient in know-how.   The first time we are leaving I was about to swear in frustration (no!) when the door would not budge.   Then the penny dropped.  I had not slid the tiny lever on the gadget as I should have done.  No, really, believe me, a three year old would have no trouble!

4 thoughts on “To Wander”

  1. Wow!!! you certainly have gone through some major changes as a caregiver. Very significant adjustments that you’ve had to make lately. You know as well as I do, just how rapidly this disease changes & causes changes in our loved ones. Dementia/Alzeimhers is the MOST unpredictable disease out there. We never know, what it’s going to do to our loved one , when or how fast it’s going to affect them. As caregivers, we are constantly adjusting ourselves to the needs of our loved one. For me, it’s the most difficult, shocking and painful thing to see happen. Especially when it happens, so suddenly; when were not prepared for it. Even though I am much younger than you & our circumstances are different(your a spouse caregiver; I’m a daughter caregiver) ; I understand completely just what your going through and how you feel.

    Having Bert wandering now, must be very frightening for you. I can only imagine how scary that would be. Thank goodness you have great neighbours, friends around your building; people you can trust. At least you know your in a safe area; that Bert is in a safe area. Now, with this new development, you simply must secure your apartment. Be more aware of where Bert is and what he’s doing. Plus as you mentioned, let your support team(PSW) know this change, so that they can keep an eye on him as well.
    So, many knew adjustments for you; I’m so sorry Paula. My heart aches for you. I understand, so much better now, about your recent “dark days” , that you mentioned previously.
    Just know you have my support and friendship anytime, whenever you need it. We caregivers must stick together; because we need each other more than we sometimes realize. I know I certainly do.

    You hit the nail on the head perfectly. Your care team is NOT emotionally, mentally or deeply invested in Bert or his care. YOU are. Your the only one whose feelings matter most. You know Bert better than anyone; you know best what he needs; what he feels. Always remember that. PSW’s are a great help, necessary and needed but there feelings dont really count; only yours do. He’s your family member, your love; not just another patient(as seen in the eyes of PSW’s). At least some of them anyway. Your the one in control, you make the decisions; dont let anyone take that away from you.
    Your in my thoughts and prayers always; stay strong. I will try to as well.

    1. Thank you, Stephanie. Truly a comment from one who knows. Much appreciated and I do know I can count on your help and care as needed. These few weeks have been a trial. It has been a sudden and heavy deterioration and pretty fast too. It seems I am losing part of my Bert each and every day.

  2. It’s interesting to consider that what to me seems positive – to be able to wander at leisure – has such a different meaning in this context. But you seem to have greeted this new challenge with acceptance and pragmatism Paula.

    1. Pragmatism, yes but acceptance is doubtful. This wandering coupled with the non-recognition is making this part of the journey difficult. I feel I am in quicksand.

      I am holding on to my definition of wandering. The fact that it is spring and despite the bad weather the daffodils and tulips are waving colourful heads in the breeze helps. I want to dance with them. Thanks, Andrea.

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