Gary,

As I have mentioned I am now taking care of Mom and Dad in South India where the costs are far less.

They are doing quite well and I appreciate your newsletter even more than before.   Every issue is a good read.  It is a good feeling to be a part of the online community you have created even in a small way. 

I wish I could attend another of your seminars but this year the commute would be daunting to say the least.

Best regards,
Steve

HI,

I just wanted to tell you that the guilt that is involved in working is very hard.

My husband has Shy-drager/MSA and he still gets around a little bit but therapy would like him to stop, he is stubborn and won't take a bus, I know if I was not working he would let me take him.  The other thing that is rough is the appointments, I have not worked a 40 hour week in probably 6 weeks because of this appointment or that appointment, believe me I am not complaining it is just rough sometimes when I feel like I should be taking better care of him and I have to work.

C. R.

Hello, Gary.

First allow me to thank you for the newsletter you guys work so hard on and publish.  It helps a great deal.

My husband and I live next door to my Dad.  We lost my mother in 1992 – she was 66 years old.  My Dad was 74 years old when she died.  My Dad is a very independent, giving, loving man.  I was glad we lived next door when he became a widower so that we could at least keep an eye on him.  He was a very active man – driving was no problem and visiting was his life.

In 1997 he was diagnosed with Parkinson’s.  However, he did not share this fact until 1999.  It had not really affected him until then.  Of course we went through the routine of trying to take his car keys – at which point he said, “I think you should remember who the Daddy is and who the daughter is”.  He felt that said it all and the discussion was over. 

He drove himself to the doctor, some 12 miles away, on September 16, 2003.  After his doctor’s visit, he took his grandson (Frank) out to lunch.  On his way back home, not far from his grandson’s place of business, he ran into one of those beautiful 200 year old oak trees we have here.  Frank happened to leave his shop and was driving down the very road Daddy had his wreck on.  Frank, of course, abandoned his vehicle and rushed to Daddy’s side, along with the ambulance EMTs and the fire truck that had made it there to use the jaws of life to get Daddy out of his car.  The policeman later told me that there were no skid marks, etc.  And if Daddy was traveling the speed limit, which they believe he was, of 45 mph, with no braking, you double that to 90 mph – the speed equivalent, when he hit the tree head on.   But Frank called me on the cell phone and told me that his Papa had had a wreck, but that he was talking and appeared to be alright, just windshield glass cutting his arm.  Airbags had deployed and help was on the scene and I should just meet them at the hospital.  The ambulance was going to transport him to get checked out.

But things deteriorated.  He did not simply have cut arms, he had broken his neck, all ribs, his left leg, and had punctured his lung.  At 83 years old this is not a good situation.  Add Parkinson’s to that and we’ve got problems.  He was, of course, on a ventilator and they had sedated him so that he would not be in so much pain.  The wreck happened approximately 3:30 pm, I was finally able to see him, in ICU, at 11:00 pm.  The doctors advised that he would probably not make it through the night and that we should not leave.  I was upset but somehow managed a smile.  The doctors looked at me strangely.  I told them they just didn’t know that old man.  He’s tough and, as so many of our friends have said, “God likes him an awful lot”. 

He stayed in a coma for 6 weeks and in the hospital for 6 months.  I brought him home on March 6, 2004.  I went to the hospital everyday for six months.  When he was in ICU I put lotion on him, hugged him, stroked his hair, and talked and talked to a comatose man like he was listening to my every word. I prayed over him and asked for God’s will.  The doctors did not keep him alive artificially.  The only reason for the ventilator was so that the pain would not get too great with all of his injuries, especially the broken ribs.  He was also put on heart medication – the jolt to his chest had made his heart rhythm erratic.  He had a feeding tube and ultimately a trac. 

I had been on my job for over 12 years.  I had plenty of sick time (6 months built up) to use.  I spoke with my boss about working half days and was assured this was alright.  I would go to the hospital from 8:00 am – 12:00 pm.  I worked from 12:30 pm until 5:30 pm.  I even spoke with my co-workers and they were very supportive about my new schedule.  On Friday, January 9th, 4:00 pm, my boss came to my office and stated that I was performing substandard work and he was releasing me.  Never been “released” before, never been “fired” before.  Believe you me, it was devastating.  Of course he said it had nothing to do with my situation of visiting the hospital.  But I knew better.  However, Georgia is a right-to-work state and they can do whatever they like.  I did feel betrayed and at my rope’s end. 

I did not tell him that I lost my job.  I kept my same schedule of visitation and would then go home and look for part time work.  I took in ironing for a while.  I drew unemployment but we all know how far that goes.  As I said, we finally brought him home in March, 2004.  I had a hospital bed put in his living room so that he would not feel isolated.  He came home with a feeding tube and had developed diabetes from the rich supplement we put in his feeding tube.  So I had to have insulin training.  I had never given a shot in my life but I learned quickly.  Of course they sent nurses and CNAs to his home.  He was in diapers and could barely scratch his own nose.  But 6 months is as long as Medicare will pay for the hospital.  The doctors, of course, almost insisted that I put him in a nursing home.  But he and I had made a pact years before that I would keep him at home as long as I could.  He would have died in a nursing home.  He needed almost constant care.  They also told me in the hospital that he would never walk again and I should be happy with transferring.  I was not.  I was determined that he would at least be able to stand and pivot to his wheelchair.  He was too much for me to handle transferring.  He weighed 265 pounds the day of his wreck.  I should mention he is 6’2”.  A very big man – always has been.  I will admit that when he was released to come home, I was scared to death.  I was so afraid I would do something, or fail to do something, that would harm him. 

On February 12, 2005, while cleaning my Dad’s house, I stumbled over a chair and landed on my right hip.  You guessed it – I broke my hip.  No medical insurance.  One step forward, five steps backward.  I had surgery the next week and was released in 1 day.  Due to my financial situation I had asked my doctor to let me go home as quickly as possible.  My instructions were to put absolutely no weight on my right leg for 6 to 8 weeks.  My husband retired and became caretaker for my Dad and me.  He ran between the two houses.  My sister also retired in December, 2004.  I asked if she and her husband, who was retired, could move back to Savannah to help with Dad.  No, that wasn’t possible.  But she came home for 3 weeks while I recovered from hip surgery.  I had asked her to stay two months but she would not.  I told her she could living in Daddy’s house with him (3 bedroom, 2 bath) rent free, utility free, etc.  I needed help!  But after 3 weeks she returned to California. 

My husband and Dad have managed fine now that I’ve been back to work.  We have Hospice coming in – nurse one day a week, and CNA 3 days per week to give him a bath and help him shave.  I get up at 5:00 a.m. (I used to think there was only one 5 o’clock – and that was 5:00 pm).  I get my Dad out of bed and feed him breakfast.  Then I go home and get ready for work.  I leave my house at 7:30 am.  Richard feeds him lunch and looks out for him all day.  When I get home around 5:30 pm I take over.  I take the weekends.  Haven’t had a day off in over 3 years. 

Thanks again for what y’all do.  I have found great comfort in your newsletter.  Thanks for listening.  I realize now that I look back on this email I have rambled on and on.  Don’t think I’ve ever tried to tell anyone the story from start to present (not finished yet…). 

 J.