Dear Jimmy and everyone,
Jimmy the whole group here has been worried about you and your quietness lately. It appears that they were right to worry...and I have to add a couple of things to what Oldbat said.
I invite Xenia to also add her comments as she has recently been walking in your shoes
You must know that as a caregiver our energies are not endless.
From your note, Jimmy, I sense the fatigue and the end of your energy to keep on doing this for Sarah 24 hrs a day.
You want to do it, you are devoted, you are caring for your beloved one...but I must say that you are experiencing Caregiver Burnout.
I would like to know what if any hours you get away from the home...I doubt you seldom leave. It is something for you to consider however...as if you fall ill or can no longer keep on in this role, someone has to give some extra help and support for you both.
I have walked in your shoes, even when just doing 8 hrs at a time and going home. Even the 8 hrs a day in a nursing home was exhausting both physically and emotionally.
Your love and devotion will not dissipate - your caring will not go away, but your body has physical need for rest and renewal.
I do hope you will find some way to lessen your load at home. You cannot go without sleep and keep up to your wife every minute. But having said that...you are a wonderful, exceptional man, husband. Everyone here will I am sure agree with that.
Your kindness to us all, your word windows that let us into your life, your home, your memories have all helped us cope. Now its time for us to help you cope too.
Can you reach out tomorrow to your community and your family or your doctor and get some ideas? It is time...and I send you hugs with all of these words....hugs to support you and hugs to help you deal with the guilt that you will suffer...as I have suffered...for not being strong enough to do it all.
I must also address your other topic...the genetic condition that your granddaughter suffers. You see Jimmie, I also can identify with what you are saying.
Almost 20 years ago my first grandchild was born to my daughter. The happy and excited pregnancy turned into a devastating birth that required my granddaughter to be flown to a major city to be given intensive care in a NICU. I think she was there for 3 months.
Finally the diagnosis came...a rare genetic disorder....un named, unknown, no details for her parents about life expectancy, care, signs to watch for, what complications would develop, what care would she need, would she die young, would she live long, would she require total care?
Yes, to most of the questions....lots of problems, lots of unknown issues that her parents and we as a family learned to deal with.
Frankly, I never have gotten over the fact that I (due to blood tests after my granddaughters birth) am a balanced carrier of her genetic disorder. I felt so much guilt, I still do. If only I could have known, if only we could have been aware, if only we could have saved this little girl from a life of frustration, limits, seizure activity, anger outbursts, non-vocal, needing total care for her entire life. If only I could have saved my daughter and her husband, and my grandddaughter this heavy load.
It is a heavy load. No matter how smiley you can be about coping, about support, about forms of therapy and strengthening exercises...there is no way to block out the fact that this 20 yr old eternal child will never know the joy of running, laughing, playing with others, growing up, meeting milestones that everyone else takes for granted...and never will have a normal life, a family, a husband, children, a career, enjoy things we all take for granted in our daily life...even just going for a walk.
So, Jimmie, I know your pain. I maybe can help you meet it midway. There is no way to do it over, there is no way to change it...all we can do is move forward.
I have been a caregiver for my grandchild as well as many many others. I have learned that it is about Her quality of life, Her smiles, Her happiness...and whatever it takes to give her that...I do! I know you understand what I am saying. I just wanted you to know that I am with you in spirit. I know how you feel...and your family members.
hang in there Jimmie....life is tough but you are tougher...plus you have a way about you with words, with actions...and you will be an important person for your grandchild...each and every day.
My granddaughters disorder is now named, there is much more information than there was when she was born, and my daughter raised awareness and brough families together from many countries of the world...all dealing with this same issue. We are not alone. Together we are stronger...its all the stuff we hear...and disregard, but seriously as a group we are stronger.
I hope that in some way my words help you today. We are all here for each other...I just felt I had to pour this all out...
be strong my friend,
Sincerely,
NatR