February 27, 2015

When a parent dies- Fragile x Guardian

I didn't know if she had months or years left on this earth but her health was declining. I had heard it happens frequently after couples who have been together for decades are tragically separated by death.  Her beloved husband of some sixty years had died the previous year. It was decided now was the right time for her to transfer guardianship; a sad but necessary reality for aging parents with disabled children.

She looked into my eyes and said “I know you're going to take care of my baby girl.” After thirty plus years of friendship it was as simple as that. I nodded my head, making my promise to do just that. The details would be ironed out later. 

And so my guardianship began and my relationship with her daughter took on a new dimension. ( I will save my explanation of the actual guardian process, education requirements, attorney involvement, court involvement, background checks, and the paperwork required for another time and post) but i will say now that took roughly four months for the entire process to be completed.

And sadly one of my first tasks as guardian along with (her caretakers) was to began a coordinated effort to prepare her and see her thru the decline leading up to her mothers death. 

Coping with her mothers declining health was frightening for her at times. We needed to be sensitive to her emotional needs and respect her decisions and never force her to visit her mother if she wasn't feeling up to it. She did well however and visited quite regularly though for the next year.

Then the call came; mom had died. I quickly made arrangements for a flight out and coordinated with the house manager on how we would approach telling her that her mom had passed. 

The three of us sat together in close a circle in the office of the group home and I told her that her mother had gone to heaven. She looked down at the floor, my heart was breaking for her. I thought about the sadness we feel when someone we love dies, the anger, the tears and how missing them sometimes makes our insides hurt. Truthfully I was feeling a bit of all of those emotions myself having lost my dear friend. So I told her she may feel those thing herself and it was perfectly ok if she did.

The holding my breath I asked her “would you like to tell me how you feel?” She looked up and me and said as clear as a bell, “happy.” I was stunned! “Can you tell me why you're happy?” She has very limited verbal skills she usually can put three words together in a sentence but rarely more.  Then in a clear voice filled with conviction she said “ mommy and daddy are together, I'm happy

What a beautiful thing!

February 23, 2015

With this ring I remember..

Do you have a special object that evokes special memories of a special person or a wonderful time in your life?

I love stories. If I didn’t love tell stories I wouldn't be a blogger.

Most often the story behind the object is more valuable to me than the object itself.

My grandparents were immigrants living in Brooklyn N.Y, he was a baker she a stay at home mother of five. The 1920’s were not a very prosperous time for them, but they got by. There were not many luxuries in their home; probably the most valuable of their possessions was her wedding ring/engagement set and yet it was very modest by any means.

One day she lost her engagement ring.  

Popa went to the local jeweler and had him make a ring for Nana. I can imagine that the $25.00 he paid for it was a lot of money back then. Nana loved the sentiment, she loved the ring, it was sweet and beautiful with two hearts back to back but it wasn't her ring.

Did you ever dig in the cushions of the couch of change? My Dad did one day when he was about 12 and came up with something a bit more valuable than a few pennies he was looking for; he found my Nana’s engagement ring. 

She slipped that engagement back in its place on her finger and the heart ring on another finger and wore them both. She in fact wore the engagement ring until her death at 95 but the heart ring had a different fate.

Many older folks give treasured items to their loved in order to see them enjoy them as opposed to leaving them in a will.  She was a wonderful Grandmother who lived with us and was a tremendous part of my life. 

Years later Nana gave that heart ring to Daddy and he immediately passed it to me. I received that ring 38 years ago and have worn it every day. Sadly, Popa died when I was six. I know Nana and Daddy saw my joy when I was given that ring. Now that they've all passed I feel like I wear their hearts all the time glistening on my finger.  

There’s a great place I know about to get a ring or watch or piece of art to start a new memory by adding a new treasure to your family. There are some wonderful items there. Have you ever visited Invaluable Auctions?  Why not visit their website and check out their great selection of rings. 

Do you have a special piece of jewelry with that has a story worth telling? I'd love to hear it!

February 19, 2015

learning lessons- Fragile x Guardian

She is a joy!  She is usually smiling, she says" I'm happy" twenty times a day,  she loves music, loves to dance and adores food and eating out. I am a lucky woman to be able to be be her guardian  and her friend.  She lives in a beautiful group home, her roommates are truly her family, her team of caretakers love her to death and God has blessed with good health.

My girl was born with (fragile x) syndrome and she has many, but not all of these symptoms.

  • intellectual disabilities, ranging from mild to severe
  • attention deficit and hyperactivity, particularly in young children
  • anxiety and unstable mood
  • autistic behaviors
  • sensory integration problems, such as hypersensitivity to loud noises or bright lights
  • speech delay, with expressive language more severely affected than receptive language
  • seizures (epilepsy) affect about 25% of people with Fragile X
Recently one of her doctors decided on a course of treatment for which I did not understand or agree. Although I've have a lifetimes worth of opinions I am by no means unwilling to listen to a doctor’s reasons for treatment or medication. So I called and I faxed and I got no response, no explanation. NOTHING!

When I took over her guardianship, she had doctors in place and it never dawned on me to check on their credentials. 

Why would he decide on doing xyz and then refuse to discuss it with me? So me being me, I got suspicious and did background check of the doctor.

This doctor WAS and IS without question a criminal. He has a documented history of personal use/addition to drugs in two states. There is a record of malpractice, a history of prescribing adult psychiatric meds to children, he has been cited numerous times for over medicating venerable foster children in clinical drug trials by the FDA and he’d been arrested for drunk driving and possession of cocaine (and entered into a court diversion program).

It is beyond me how he was allowed to see patients with this record. And you can bet she will never ever enter his office again. 

I am bewildered with how the lenient medical licensing boards are with doctors and it is scary to think how our most vulnerable are at risk if exposed to these horrible doctors.

I needed to do a better job reviewing her health care providers; something I have come to regret. 
Do you check the background of your physicians?

February 16, 2015

sneaky folks

They rolled me into the operating room and the anesthesiologist said to me from behind.

” I’m putting a little something in your IV; you’re going to feel it in a second or two”.

We got into the operating room,  they asked me to scoot over from the gurney to the operating table, feeling no pain from the drugs I happily complied.

“I don’t remember feeling like this since I had a few to many beers at a party at my cousin Colleen’s house and fell up the stairs.” 

This I shared since apparently I become chatty Suzie on drugs.
I adjusted my pillow, my blankets..

“There you are, surgery went well, I was wondering when you were going to wake up.” I’ll get some ice for that foot”.

Those anesthesiologists are sneaky folks.