Family Health Issues

I havent been updating my blog, and things feel as though they are falling in a heap.

I dont know if I have shared this in the past but my Dad has a rare form of Fredericks Ataxia which is a disease that slowly kills the part of the brain that controls the central nervous system. Basically it is killing off his motor functions, balance, speech and reflexes. He has been confined to a wheel chair for many years now, but... the disease has started to progress more rapidly and my family and I are having to make some huge adjustments so that we can help him and my mother in any way we can.

He has gotten to the stage that he is even starting to lose the use of his muscles in his throat making it hard for him to digest food without choking and it being of course being entirely unpleasant for him.. He sneezes and falls out of his wheel chair or cracks his head on the table and his speech if you were to meet him would be very much sounding like he was greatly intoxicated. He is getting very frustrated because his mind is sound, but unfortunately the nature of the disease is slowly shutting down his communications with us.

The last six months has been the worst with him physically detoriating very fast. We can only cross our fingers and hope. My mother is not coping either, and even though she acts strong and at times portrays an upbeat attitude I very much believe she is on the cusp of having a nervous breakdown like she did a couple of years back. My husband and myself have asked them to move in with us so that I can help my Mom physically (the lifting, dressing etc) with my Dad, whilst being able to let them have some normalcy in their lives as well (Im positive having the grandkids around them makes them feel really good.) and I get to help Mom more and offer a shoulder both physically and emotionally when its needed.

Its been hard to admit even to myself that my Dad is getting worse. For over half my life he has fought a huge battle in trying to slow the progression of this disease, and I suppose all of us have become complacent about it. We know he has disabilities, but because they have been there for a long time, you dont really take a great deal of notice of them. However, since they have been living with us (from Christmas time) - its really been an eye opener.

My Dad's Dr's have told us that what will happen is that he will most likely get a cold and his organs will start shutting down. We have been greatly concerned, as in the middle of last year, he had a heart scare and now we have only recently found out that his liver is not working as it should either, along with numerous other problems making themselves known.. In the past he was very upbeat and was keen to try anything experimental to try and slow this process, (he's even had botox injected into nerve endings around his liver) but in more recent months seems to have taken on a defeatist attitude (ie: doesnt want to go to physio therapy or such) which of course makes it alot harder to keep him positive.

Its definitely made it very hard for all of us around him, to see him become this way, as hes always been the biggest warrior. My stitching and own personal committments to others hasnt been as it should, and to be honest I dont know whether I am Arthur or Martha right now. My blogging is basically non existant, and I know I am not contributing to exchanges as I should either. I have asked Becky to let me stay on board at SBEBB until I hear word that my exchanges have been received, and then I will be taking a hiatus from participating as my family and I try to do whats best for my dad.

So for now, thats it.

Comments

[Mandy]

Hi Veronica, this is Mandy from the low bmi thread, I was really sorry to read your posting today. My husbands father had a long battle with multiple sclerosis which sounds a bit similar so I have a little understanding of how things are. It must be very hard for you supporting your family whilst coping emotionally yourself, you was so upbeat and positive after the banding. All I can say is try and take care of yourself as you are obviously very needed right now. Take care, love Mandy

[Erica (aka Lapbandgirl)]

Veronica... that is so so sad. I am sending you big hugs. Don't forget to give yourself some time out so you don't get too overwhelmed with the situation. I really hope that this time with your dad is special and I hope that the rest of his days are peaceful and surrounded by his loving and devoted family. We'll be here when you get back *hugs*

Erika xx