March 04, 2011

Caring for Segev

On Sunday a representative of an employment agency for chronic care will come with a prospective 'helper'. This first of its kind meeting might result in having up to nine hours of help a week in caring for Segev.  It was made clear to me that authorization for this help was given the go ahead as an extraordinary exception due to the, well, extraordinary circumstances of Segev's care requirements.

On the phone the representative asked me if I hadn't thought about hiring a fulltime caregiver who would live with us in the house, as is not uncommon in this country for physically and mentally compromised children and quite common for the elderly.  What could I answer to this women after having just given a brief explanation of the severe nature of Segev's condition, which has been ongoing for thirteen years? No, this is a new idea for me, thank you for informing me of this option? 

Yes, I answered, and as soon as I have money to apply such a solution, I will. Oh.

You have to understand that in this country I am not eligible to receive in home assistance from the government insurance department until he is eighteen years old. The infallible logic being that , since he is a child it is only natural that I as a parent take care of him.
Who needs to work? The government insurance will pay me a monthly stipend if I don't work, which should cover my expenses if I decide to live "in a van, down by the river", eating crickets and chewing gum. 

My private health insurance is exempt from providing chronic care for Segev since there is a clause supported by the health ministry that if a child is born in need of chronic care, or suffers a permanent condition requiring chronic care in their first year of life, they aren't eligible for chronic care. *shoots self in foot* 

The health ministry is responsible for medications and some equipment only, and within those confines they have provided what they are required to.

The fact that I have been brought to this point, where I can no longer do absolutely everything by myself, have had to involve my elder children more and more in Segev's care, limiting somewhat their normal teenage lives has caused me to rethink how I organize the various steps and conditions of Segev's care.  

My oldest is going off to the army this summer, for three years at least and so will not be around to help. My daughter's life is fast filling up with responsibilities as a guide in the scouts,  tutoring and the regular teenage activities of friends, gatherings, babysitting. I've planned to ask help from volunteers at a local college where a 'special education' program is taught but haven't gotten around to it yet.

Segev's *thirteenth* birthday is coming up March 8!

Hopefully my expectations for Sunday are realistic, especially considering the person is not medically trained, but the bottom line is that I need someone who can fill at least part of the function that my children do on a daily basis. It is often a question of seconds or a minute at most, of Segev being on the couch and me needing a break to go to the bathroom or checking on the stove and the food that's being cooked. Other things like gathering equipment up and bringing it along as I transfer Segev to another room, or to his bath. Double checking to see if I have given all the medications, not forgotten a scheduled treatment, an ingredient in his ketogenic meal. Clearing the way which always seems to be necessary and putting all of Segev's portable things and medicine case into the car, then coming along for the ride to his mother's house. All things I do alone normally, running repeatedly up and down the stairs, two at a time, to as quickly as possible fill up the car while Segev waits in his wheelchair upstairs, alone. The many times I've run back up the stairs to find him seizing, not breathing, hopefully will be a thing of the past.

I haven't gotten my hopes up, but I'm just glad I've realized I need to take this step, before some mistake on my part, from physical weakness or lack of concentration turns to tragedy. 


  1. Well done Eric. I hope you find a good match quickly.

  2. This is such an important post -- it's mind-boggling -- the constraints under which you -- we -- us have to operate.

    On a more cheerful note, though: my Sophie is turning sixteen on the same day as Segev!

  3. I hope it works out well. ((()))

  4. We have had help from caregivers for 12 years with Adam. It is so very hard to find someone to's like you have a break but not a real one because your mind is never relaxed. In most cases the care given is more for compensation than an act of love. I hope it is the right person for you!

  5. I wish you luck as well, but even if you are sitting watching them do the work, you are getting some respite. It's hard to let go and let someone else fill your shoes especially when you know you do it best and Segev of course deserves the best. I suggest a nanny cam, I had one and having it is piece of mind well worth the money spent.

  6. I hope this will be prove to be the right person for you to teach, come to know and be able to trust. I can almost feel your exhaustion---partly because I'm struggling with my own---and I know from experience that even a few hours a week of real help can be amazingly restorative. Good luck!