Friday, January 3, 2014

Worries for the Future - Part 4

My regular readers know I have a brother in law, in his 50's, with a developmental disability called autism.  My spouse, who is the oldest of four siblings (including the developmentally disabled brother) is attempting to get legal guardianship of his brother.  This is not an easy process in New York State, where we both live.

Back in December, I updated you as follows:

"As regular readers of this blog know, I have a brother in law, in his 50's, who is developmentally disabled with a condition called autism.

Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential.

For several months, my spouse, his oldest brother, has been trying to gain guardianship of his brother.   I promised you a "to be continued" and here it is.

We had had difficulties, but today, we received the last piece of paperwork needed to start the guardianship petition. Tomorrow, we drop it off to the lawyer.  Then, we'll just have to see what happens next.  It's not necessarily a quick process.  Meanwhile, time ticks away - my mother in law (and we) grow older every day."  (more of the post can be read here).

This is where we are now.

We are still in the midst of giving the lawyer information so she can prepare the petition for guardianship.  Very little has come easy - getting the two required medical signoffs, for example, took a lot longer than expected.  Some of the information New York wants about the proposed guardian and the alternate/standby guardians (the other non-disabled sibs) make us wonder - Why?

Now, however, time is becoming of the essence.

The brother has always lived with his mother, my mother in law.  She is now in her mid 80's, and was recently diagnosed with cancer.  Her cancer was caught early, and her prognosis is good, but first, she will have to undergo some treatment later in January.

Thankfully, she is a strong willed individual and a fighter, and is deeply dedicated to her children.

All the sibs have been plunged (my spouse and I, for the first time) into the bewildering and not so wonderful world of caring for someone with cancer - the doctors, the planning of treatment, the arranging of transportation, the phone calls to give support, the questions, the more questions,  the taking off of work to help care for our loved one, and, (eventually, I expect) the "how is she going to pay for all this?" 

And, in the middle of all this - my brother in law.

How much does he understand? Is he scared? Does he worry about his future? I suspect he knows a lot more than we think, but he can't communicate it.

So, we walk our daily tightrope, trying not to look down, putting one foot in front of the other, and trusting that one day we will reach the other side, and be able to jump off.

Have you been through anything like this?  If so I would love to read your comments.


  1. Alana,
    We helped care for my husband's father a few years ago, when he was dying of cancer. It was a heart-wrenching time, and we didn't have an autistic adult in the mix like you have. Take it one day at a time. Figure out exactly what needs to be done that one day, and then do it. Don't become hamstrung by (this is always my temptation, alas) self-pity or the "whyme?"s. Openly ask for prayers from others. You'll get through it. Blessings and hugs, my friend!

    1. Thank you for your thoughts and support, Amy.

  2. May you obtain the success you desire- and be able to manage once you obtain that new life responsibility you seek.

    1. We hope we can manage, Roy. We will have to learn as we go along - and hope that it works.

  3. Sounds very stressful! Bless you for caring so much.

  4. I hope 2014 is full of positivity for you!

  5. What else can you do but give the best within you? I've never had to care for anyone with a disability. To my regret, the last time I visited my mother from the other side of the world, I didn't recognize the onset of dementia.


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