I have had my own issues with death; that’s what landed me in therapy.  Well at least that was one reason.  But I have recently been through an experience that has allowed me to see another perspective of death and anxiety.  I have a very close friend, actually she is like family, and her mother suffered from dementia with lewy bodies.  Now for everyone not familiar with that it is like dementia and Parkensons put together-not good.  I got to know ‘Grammy’ first when she lived with my friend and then by visiting her at the assisted living facility.  Grammy was quite the character, she was feisty, independent and no matter how frustrating she could make you smile.  She was known for what I called circular conversations-she would have a limited number of questions that she would ask over and over and over again .  But everything changed almost overnight, she suddenly couldn’t walk and she wouldn’t even eat her cookies (the only thing she would eat).  We spent three days with Grammy as she took her final journey.  I have always understood the anxiety felt by the survivors, but this time I had the opportunity to watch the other side.  We watched Grammy’s anxiety, her struggle, her pain, and yet with all that we also watched her acknowledge her son on the phone and manage to find words to tell him she was his mother and she loved him.  That image I will carry with me as it was amazing and beautiful to witness.  On day three the anxiety was gone for Grammy and after showing her strength to the end, she passed.  On that day there was peace for her, both before her passing and in the quiet moment of her passing.  But for those left behind there was still plenty of anxiety and pain.  I have always said death is usually a blessing for the one going, but it sucks for the rest of us.

As I sat there on that last day with my two ‘sisters’ we shared stories about Grammy and ourselves and I believe that Grammy knew we were there with her and hopefully that gave her peace. In the short time since Grammy passed I have been facing my own anxiety with death.  As I have written before my son Robby has many chronic health problems and they are getting worse very rapidly.  This is not unexpected, but still very painful.  He is lucky (I know that sounds strange) he doesn’t know what anxiety is-it’s beyond his comprehension. I on the other hand have enough anxiety for both of us.  Something I have to try not to show around him, he does pick up on my emotions.  I am heartbroken about the journey he is starting and not knowing what his journey will be like.  But the one thing that eases some of my pain is that I know in my heart that his father is waiting for him and once again they can be together. On that last day with Grammy we all thought of the things she would do when she would be reunited with her loved ones that have passed before her.

Robby and Grammy have somethings in common, they have people who will always love and miss them and both of them at the end of their journey will be free from all the suffering and limitations they had in this life.

It’s seems lately that most of what I write involves stress, increasing stress and, of course, anxiety.  But this week was so overwhelming stressful that I spent most of the time either feeling like I couldn’t breathe or like I could vomit.  Robby’s Uncle Patrick and his partner David came down to So Cal because we had to go to court for Robby’s conservatorship.  That might not have been so bad except there is an agency that seems to feel the Robby is not receiving good care….seriously!?!?  But this same agency has the ability to interfere with the court.  Long story short we survived court and Robby is still protected and even more importantly still at home!!!

There was a bright spot in the week when we were able to have a really nice, and stress free, visit with Patrick and David.  It is so interesting to watch Robby with his Uncle Patrick, Robby just looks and looks at him, it’s like he senses a connection.  Obviously Robby doesn’t understand that there is a connection and that’s what makes it so special!!!

I have often referred to myself as the plate spinner at the circus and my belief that if I can keep all the plates spinning then everything would be OK.  Well, not to long ago I realized that the plates were falling around me…..now I have reached a point where duck and cover seems the smart thing to do!  I have tried everything I know to keep the plates spinning; I used nervous energy, my obsessive/compulsive tedencies, sleep deprivation, multi-tasking (not something I have mastered yet) and even my anxiety.  But still the plates keep falling down, I even tried asking for help-a last resort for me, but still no success.  I think it’s time to call in the big guns-I need the professional plate spinner from the circus!  Now, if only the circus were in town!!!

 

 

Lately I have been feeling stressed and overwhelmed and once again my old friend anxiety seems to be close at hand.  At times it feels like there is no air and taking a deep breath is impossible.  I have been juggling even more than the usual-house repairs, bills, money, legal issues, doctor appointments and tests for both Robby and myself and an endless line of grown up decisions.  I have also found myself having to defend my decisions regarding Robert’s health care.  And sleep, well that’s something that has not been close at hand.  I feel like I am just running and running and running and my fear is that if I stop I will fall face down. 

You see in addition to all the ‘normal’ stress in my life, my son Robby’s health is declining.  His underlying condition is degenerative and changes are not unexpected, but that doesn’t make them any easier.  I have felt blessed over the past few years, Robby was only expected to live to 16 years of age and this year he turned 29.  I see all those years are a gift, every year on his birthday I am thankful for another year with him.  

But now as I said things are changing and I feel helpless because I can’t stop it or fix it.  But a lot of the time I feel overwhelmed by the stress of making the right decisions for him.  It is a fine line between treatments that can help or at least make him comfortable and treatments that will be too hard on him or even cause him pain.  I wish his father was here with us, but in a way he his, when Robby’s problems were diagnosed we sat down and discussed what we wanted and didn’t want for our son.  We decided that we wanted three things for him; one was to be as pain free as possible, to be happy wherever he is at mentally and to be at home-his home.  Those decisions still feel right to me today, so what I am trying to remember is that I am not making all these decisions alone, Robert and I made them together and that does give me some comfort and even at times a little peace of mind.

 

Lately I feel my life closely resembles the famous quote from Allen Saunders “Life is what happens to you while you’re busy making other plans”.  I keep trying to find some order and a tiny bit of peace in my life-I am not looking for perfection or even control; I gave that search up a long time ago.  But every time I get close to a small piece of ‘normal’  it seems like something else comes along.  Now, don’t get me wrong, I understand that life just keeps happening no matter what.  There are times like this past 10 days where life is just too much, too big and too overwhelming.

Over the past 10 days my son, Robby, starting having some medical problems.  He was in pain; he was agitated, restless, sleepless, had high pulse and blood pressure.  I took him to an ER after talking to his doctor.  They did a chest xray, some basic blood test and told everything looked good and I should bring him back when he could localize his pain.  Now this was an interesting idea, you see Robby doesn’t talk.  There were 4 more ER visits before a diagnosis was found.  They found a compression fracture in his spine-ouch!!  He is also having additional trouble with some pre-exisiting medical problems.  Even on pain medication he is still in pain and miserable.

As his Mom I feel helpless, there is nothing I can do to fix this for him.  The only thing I can do is arrange doctor appointments, try to make him as comfortable as possible and worry.  This has flared my anxiety and I keep trying to force it back down, there is no time for it right now.  That I find is more successful sometimes than others.  Right now my focus has to be on Robby and helping him, there will be time (hopefully) to deal with the anxiety and tears later!!!