Living with Social Distancing, Caregiving and Astrocytoma

I haven't written a blog for a while because life has been busier than usual with Phil's weakened immune system and body.  After radiation, Phil has seemed to become weaker with time.  This is only complicated with what is going on with the Coronavirus. Phil is in a group that needs to be protected from getting it, as am I.  He is requiring more help from me with the loss of function of his left arm.  Seizures have been plaguing him and although the seizures have not been severe themselves, each one weakens his left side a little more.  In general he is very weak, can't use his left arm and has periods of time that he is confused.  I think many of his symptoms have to do with brain swelling after the radiation.  We had doctor appts and an MRI scheduled for this week, all were reset for later dates due to the virus.  The last thing we want to do is go to the hospital at this time while they are being inundated with people sick with Covid19.   The doctors have been in touch and have shown more kindness to us than can be imagined.

As I was writing this, the phone rang it was the social worker from the hospital.  She is the person to help me navigate what comes next.  We discussed everything from home care to hospice.  It is the doctor visits, the calls when I have to verbalize what is going on and the realities that are hard to face.

On the other hand I'm ever so grateful to  have kind doctors, nurses and social workers to help us move through this.  I am worried for all of our medical family and their safety during this crisis.

Phil has been suffering with depression and frustration at not being able to do what he has been doing successfully for the last 3 years.  It is hard to watch and it seems to be compounded by what is going in the world right now.   

I have been trying to handle everything with humor, love and a dose of optimism.  Not that I don't have moments of utter sadness, anger and frustration.  I draw strength from my spirituality, my family, friends and love.  I would tell you that Phil has been the kindest person I have ever come across in my life.  He has given himself to me, my daughters, as a civilian firefighter and in the Air National Guard.  I have watched him help person, after person and I will do everything I can to help him as he continues this journey.

Watching him go through this has been the hardest thing I have ever done.  The pain of the disease, the emotional toll and the thought of losing the best friend I have ever had is beyond painful.

Yet, I would be no place else except by his side.

Phil has said he doesn't want any more treatment, he has filled in all the paperwork that he doesn't want anything done to save his life when the time comes.  Each time we have to go through these decisions and discussions, we cry, we try to accept and then we have to move on, there is no other choice.  Of course decisions change and we are hoping there will be an upcoming treatment that will help with the swelling in the brain so that he can reduce the amt of steroids that he is having to take.  The steroids come with side affects that aren't pleasant, one they cause pain and weakness in his legs.  Our once long walks have become shorter and are a big effort to him.  His strength and courage are to be admired.  There are many people outside walking now trying to get exercise while in isolation. Today was the first day I saw actual social distancing that even people who were running were making sure there was space between us.  Many times I have to watch Phil as people won't move over and almost plow into him while we are walking.  I try to make my 5 foot frame bow up to run guard for my 6 foot husband, so that people don't knock into him.  People assume that he is a healthy person and can move easily out of their way.  It is always best to use kindness and just be polite.  Today that was different, everyone was moving to allow space for the next person.

Living in this period of time has brought on more stress than we are already experiencing in our life.  Social distancing can feel like the help that we need is even further away and yet....

Family and friends step in and help in the ways they can.  There is someone bringing food, groceries, texts, phones calls, cards and support almost everyday.   There is no way to thank the people who continue to help us.  I'm eternally grateful.  I know that I will do the same for others in the future.   Love helps bring courage, hope and the momentum to move forward.  It is important to reach out to others even when we are suppose to keep our distance.  I can't tell you the difference it makes in our life.  Check in on your neighbors and friends.

To all, I say take care of yourselves, we send our love and we continue our journey to our very best, one day at a time.