Tuesday, March 23, 2010

Tsunami Warning


     There is a Tsunami warning coming.  I can feel it in my gut.  A feeling I don't like causing anxiety to grip my core wanting me to flee.  Higher ground, higher ground!  

     Tsunami:  I looked up some synonyms:  Interesting what applies to me:

             breakup  cataclysm  choppiness  climax  convulsion  disaster  heave  

             paroxysm  popple  quake  rise  roll  scend  spasm  surge   swell   temblor

                             tidal wave   undulation   upheaval   whitecaps

     Oh yes I can feel it coming and I am not prepared emotionally for this.   I am in fear of what is to come even though I know I should do as I said and take it one step at a time.

     Mother.  I have visions of the Tsunami happening.  The earthquake has happened, the facts  have been given, the diagnosis presented.  Like my earth has been rocked even though I knew in my heart what was wrong with her it still resonates all around me.  Accept, acknowledge, pretend you are fine, trust the actions in place.  "Everything is fine" she keeps saying, "I am just fine" she keeps saying, "The doctors say I am alright" she keeps saying.  Over and over I hear this in every phone call to me.  

     And now the water is receding...the information shared, sinking in slowly. Wondering.
How long before the huge wave comes back to drown me?

     I have been told by her doctors she knows what is wrong with herself but she is in denial or does not fully grasp the gravity for her life.   Initially all this was laid out and explained to my brother and I.   I  had to read more to understand and let it sink in.  I didn't see all that I had read about FTD in relation to my mom or as yet to be.  

     FTD:  Frontotemporal Dementia:  A cluster of progressive diseases that affect the regions of the brain that control personality, behavior, language and decision-making.

     Of late I have had talks with multiple physicians, her lawyer, business partners, those who have helped my mom in other areas and I feel so overwhelmed.  I felt my mom had a great safety net around her that she and my dad, while he was alive, put together.  Yet now I feel I am being asked to deal more directly and I am scared.  What care does she need?  Is she fine with the way things have been?  Do we trust everyone?  When do we need to tighten the safety net?

     She has been taken advantage of.  We found that out of recent.  An obscene amount of money to an alteration lady.  Someone I have known from many years ago who even altered my daughters prom dresses.  Someone who smiled and was kind and friendly.  Someone I would not have thought could become untrustworthy.  Or did she just get sucked in by my mom and her generosity, who didn't want to disappoint this client by saying no to the extra cash that came her way?  I want to call her, see her and ask her this.  For now we are doing one step at a time to protect her.  Still wondering how to navigate that ocean.

     I can feel my Calm Forte working, feel my anxiety ebbing slowly.  I may need to take two but I only took one.  I can't let the anxiety eat me.   I have to stop the gripping of my gut that is scratching at my insides.  I can get a breath in without the pain of fear.  Fear is the devil.

      I have to meet with another man who wants donations from my mom.  An act she started over a year ago and of course him being a major fundraiser he is doing his job to woo her for this.  I called him on on my own, without her knowledge to act in her behalf though I am sure with her present state of mind would be angry as a cornered cat if she knew.  I tried to explain to him what my mom has, asked him if he ever heard of it, told him she cannot do what he would like her to do.  Host a party for 30 to 40 people for the purpose of soliciting donations.  Like sharks circling they are waiting, and waiting for the moment to attack.  I am more than happy to meet him, to see him face to face, to hope in the meantime he looks up FTD and understands my concerns.   Of course I will stand firm that he fish for a new location for his gathering.  My mom cannot do this.  Oh she would try because this is what she use to do.  She was the Queen of fundraising!  She could cajole a person so easily and before they knew what had happened.  She could get anyone to do to her bidding.  She was good, that good.

     To be honest...I have always been scared of my mom.  Age has not helped or changed a thing.  I was the one who could not say "yes" or "no" when she asked to go somewhere, do something because I was afraid to speak up for myself.  Yes, many times I did want to do or go with her but a whole heck of a lot of times I didn't.  My whole family would go because of my fear if I said no.  Why oh why did I not stand up to her so long ago?  Now I am quaking in my shoes to have to deal with her life, the web that I don't know how to navigate, the places I have NEVER been allowed into.  My mom a woman of secrets who trusts no one.  I do believe this...for if they went against her then they are GONE from her life.  Dumped, shunned, uninvited.  Done deal.  Being the family well I would be yelled at or made to feel as bad as she could and she did know how to push my buttons.  Really well.  What now though?  Verbally she can't speak like she use to.  The tone will be there.  I need to find that thick skinned suit to put on.  Why am I shaking right now?


  I need another Calm Forte.  I need peace.  I need strength.  I need confidence.  I need a hug from my Love.







Ms. Moon said...

This sounds so dire. And it is. I have been through something similiar with a friend. Not FTD but corticobasal ganglionic degeneration. They all suck. They're all horrible.
And it will have to be one day at at a time. One moment at a time. That is the only way to live and the only way to deal with something like this.
You can't and shouldn't do it all now. One step. One. Then the next.
It's going to be a rough path. Watch your step. Go slowly. Ask for lots of hugs.

Dreamer said...

Dear Ellen, my prayers for you to find the pace, strenght and confidence you need and of course you will have tons of hugs from Tim..........God will guide you thru it all. Love AB

Allegra Smith said...

Dear Ellen,

First of all find yourself a good decent attorney. There are many organizations out there to help protect the interests of the elderly.
You don't have to do this alone. And remember that one way or another you have no reason to fear your Mother any longer.

This is going to sound awful but as someone who has volunteered for years the first step is always to have her declared incompetent to take care of her affairs. If you don't feel capable or don't want to handle them, a trustee can be appointed by the Court. Any good attorney would suggest this to you
and find someone who is not charging a dreamer's salary to take care of her affairs.

If this is to much for the present, put all her accounts into a trust fund to be administered by you and your brother with both signatures required to disburse any funds. This always avoids misunderstandings in the future.

You have to take this day by day as Mary said. There is nothing else you can do. Is she going to live with you? is she going to go into residential care? That is why a good attorney is essential to cover all those questions.

I wish there was something I could do to help you. Just know that I am here and if there is anything at all that I can do, an email is all it would take for me to do it.

Sending you hugs and wishing you the best. Please let me know how you are doing.


Ellen said...

You must know that your words, each of you, mean so much to very much. I know I have a tendency to think I am the only one...I need to ask for help or get the help I need. Luckily my mom does have a wonderful attorney who I am now able to talk with, and she has help at home (when she lets them stay, as she often sends them home). We want her to stay in her home as long as possible and hopefully ease in more care round the clock. That would be the plan. I guess we are just at that spot before the roller coaster goes over the first high part. You know it is coming and you know the drop, the stomach lurches...but the ride will come to an end...and well big breath for me...Thank you ...seems so small of words but I mean them sincerely.

Sara Louise said...

So much for you to deal with Ellen. I wish I had words of wisdom or anything that could bring your comfort.
Be strong, have faith and take as many hugs from your Love as you can get

Caroline of Salsa Pie said...

We went through something very similar with my grandfather. He actually lived with my parents towards the very end of his life. There were many people who took advantage of him and it was so very hard and sad for my mom to have to deal with that. He was also hard to approach about things, and kept his life very guarded which made it even more hard for my Mom to have to try and confront him about things. As well, the dementia made it even MORE hard.

My thoughts and prayers are with you. Just take one day at a time and all will be well.
I'm so glad you have such a great support in your husband, as I know that will be needed.

Erin said...

You are in my prayers. I hope everything goes well.

PS... I love the pictures you posted here! It makes me think the sun will shine lovingly again for you. :)


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