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leegardens

Active member
Joined
Apr 5, 2008
Messages
31
Reason
CALS
Diagnosis
03/2008
Country
US
State
Georgia
City
Atlanta
I have not written for awhile, not since Jay got his PEG on August 22. It has been crazy here since the surgery. Jay cannot handle the volume of Jevity needed to stay alive with the PEG and the dementia has really accelerated. My PALS quit using the bipap not long after the PEG. He goes into anxiety attacks and feels like he is choking and cannot breathe. September 11 we went to the emergency room at Emory when Jay felt like he was choking. He kept on pacing around, banging on doors, asking why someone wasn’t helping him- he was choking. Finally they gave him epinephrine and half a valium. I was told to take him home before he gets sick since Hospice was coming the next morning to do an intake. The next day Weinstein hospice came. They delivered an oxygen machine, hospital bed, toilet chair, suction machine, nebulizer, and a shower chair that afternoon. The nurse and the social worker helped me move our bedroom furniture to make room for the hospital bed. That night Jay got sick with diarrhea, I know he caught it at the hospital. Jay slept in the hospital bed that Friday night. I cried when I saw it set up in our room.

He’ll use the oxygen, in fact he uses it 24-7. The minute we try to get him to use the bipap he has an anxiety attack. I can’t see him spending what time he has left being terrified. He has lost around 45 pounds, 30 of it since the PEG surgery. He used to weigh 190lbs at 6’2”. Now he weighs around 145lbs. Every time he would weigh himself he would just nod his head as if to say “not good’. Then he would shrug his shoulders. I took the battery out of the scale and told him it was broken. He also has anxiety attacks about the nebulizer and the suction machine. We can’t get him to understand how to use the cough assist. He is really confused all the time. I have a hard time understanding him, he can only grunt out one or two words. We are using the dry erase board but I can’t understand what he means when he writes out some of the words. His right arm from the shoulder to the elbow is pretty much shot. It hurts him all the time, but thank goodness he is a lefty. That is where the fasiculations were first noticed on January 3, 2008. He says that his rib must be broken because he has pain there. He says his ribs hurt every day. He has very little respiratory action and breathes in a shallow manner. Now he can’t walk the distance from the bedroom to the kitchen. He has to stop and rest. Soon he will be bedridden. In fact that will probably happen this week.

During the summer we spent a lot of time with our son, who comes home every chance he has. We also spent the summer with our daughter and our grandchildren Jacob, age 3, and Esther, age 7 months. We went to New York in June for Jay's father's 87th birthday so Jay could say goodbye to his 90 year old mother and his father.

We are at a quiet reflective time in our life together and are not having any visitors but our children and grandchildren. We look at slides of our life together, going back to 1973, before our children were born. We were married in 1970 but didn’t use slide film back then. Jay listens to music, spends time with Jacob, age 3, and Esther, 7 months, and enjoys the dogs.

On October 10 we went to a concert in Birmingham, Alabama, about 2 1/2 hours away. We took our two nurses, various medical equipment, medical directives and we went in a stretch limo to go see John Hiatt and Lyle Lovett. I was able to arrange for Jay to meet John Hiatt and Lyle Lovett before the concert. He had a wonderful time. I was terrified the whole time that he wouldn’t survive the trip.

Friends and family have been coming to visit to say goodbye for the last month and they always cry when they leave. I am starting to expect that. I wrote an update on his condition and emailed it out with the picture of him with John Hiatt and Lyle Lovett. My PALS has been getting lots of emails and cards from people telling him or me what a difference he has made in the lives of others and how he has inspired them. I do not know how I will get through this. I know we only have a few weeks now. Hospice is wonderful and he will die in our home. Please pray for him, that Jay will have an easy time. He is only 59 ½ and was diagnosed with ALS on January 3 of this year. He will not live to see the New Year.

My heart is breaking.
Lee
 
Lee, I'm so sorry for your husband's decline. I will pray for him to have an easier time with hospice help.

Take care of yourself, too ...

Beth
 
oops. wrong post
 
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I am sorry that your husband is feeling so bad..........I hope he feels better as well as can be expected.
 
Hang in there!

Lee,

WE CAN'T BEAT ALS, BUT SURE CAN FIGHT IT, is a strong, true atitude. God Bless.
Take care.

Hugs,
Caroliney
 
I Promise You Dear Friend That Many, Many Of Us
Know Exactly What You Are Going Through. I Wish
You Could Convince Your Husband To Use The Bipap As
It Will Add Time To His Life. I Had Rushed My Husband
To The Emergency Room Many Times In The Beginning
After He Was Dx In Jan 07 As He Felt He Was Smothering
And Choking.

Now He Is On A Bipap 24/7 As It 'breathes For You'.
My Husband Does Not Suffer At This Time With Dementa,
But His Voice Is Weak And I Can Barely Understand A
Word He Says.

Many Of Us Are Experiencing These Same Things, And
Our Hearts And Prayers Are With You.

Jackiemax
 
Lee,

I'm - I don't know what I'm doing...Just know I'm thinking of you and your husband!
 
My htoughts are with you and Jay today, Lee. I hope he is able to feel more comfortable soon. Cindy
 
Lee,
My heart aches for you, I pray you find time to rest and that Jay is as comfortable as possible with hospice at your home,
God bless you,
brenda
 
Lee, I read your post and feel you were writing about my mom. I will keep you in my prayers to give you strength. I am a new member on the forum after mom rec'd her diagnosed and now has a peg tube already. The hardest part is her crying constantly. She is on medication but is is not working as well as when she was first diagnosed. I also live in Atlanta but have temporarily moved to Florida to be with mom. I am very blessed that I work from home and was able to come down here.

I wish you well Lee. Cookie
 
Lee,

I am so sorry to hear how Jay is doing. Your choice to have this be a quiet reflective time is beautiful, peaceful.

Take care,

Lydia
 
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