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Tom's Support

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199
Reason
CALS
Diagnosis
08/2000
Country
CA
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ON
Well, Tom finally gave in Sunday afternoon and let me take him to the hospital emergency. On the weekends here our emergency department gets to double as a walk in clinic, so in we go to get some medication for pneumonia.

Now that it is flu season the first order of business is to get a mask on Tom. Well, he couldn't breathe before we got there and now he really can't breathe. The mask was not to be taken off, but they did get him into a room quite quickly and put him on oxygen. His lungs were x-rayed and they confirmed pneumonia in the left lung. It took a LOT of convincing to get Tom to agree to stay, they said a night or two and I said just go for one for the time being to which he agreed.
Poor Tom, he is a wild animal and has just been put into a cage.

I promised him I would be doing everything I could to get OT on board so that we could get whatever equipment etc. we needed to get him home on Monday.

I left the hospital on Monday night assured that he would be staying there another day or two at least but that in due time we would have all we need to get him home.

The good news is that he appears to be somewhat comfortable, he is getting antibiotics and fluids via IV and he isn't too miserable when talking to the staff, whew!

When I go in, however, the misery man starts, I get yelled at for my stupidity when I am trying to do what he wants but can't accomplish it quickly enough, It is my fault that they left the X-ray machine in his room, my fault that I brought him a milkshake that he couldn't eat/drink, bla bla bla -- his doctors are oriental but he has other names for them that even I do not want to repeat.

Funny guy, the doctor asks him "should something go wrong and you need to be resuscitated, do you want us to do it?" He told me his answer was "yes". I said, "funny thing, you just told me that I was going to find you in the bush with a bullet in your head because you don't appreciate the treatment you are getting".......

FTD, it must be the FTD......
Each time I visit he hurts me enough for me to be glad to leave. Then guilt sets in, then I get home and enjoy the peace. I have had two really nice sleeps -- all night -- it is amazing what sleep can do for you.

Poor Katie, she has the flu that got Tom into this mess, so I have to help her get over it so the house can be bug free for Tom to return to.
Ah, the trials of home and hearth.
 

brooksea

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Country
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Although I am glad you have gotten some sleep, I do hope Tom will be able to recover soon, as well as Katie. And try to keep yourself healthy!
 

joni51

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Joined
Sep 8, 2010
Messages
985
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
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Bless your heart, but glad you got some sleep..
 

momap53

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Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
So sorry you're dealing with FTD on top of the Als and the pneumonia. Use this time to rest, rest, rest and refortify youself for the days ahead. Don't feel guilty. Caregivers need a little respite in order to continue taking care of their loved ones. Thoughts and prayers will be with you.
 

Tom's Support

Distinguished member
Joined
Mar 1, 2010
Messages
199
Reason
CALS
Diagnosis
08/2000
Country
CA
State
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Thanks all, looks like my rest is over, Tom has come home today. Wild animal released from prison!
He did agree before we left the hospital to let OT come in for home assessment as well as have the nurse return -- I want to know he needs or doesn't need help with the phlegm in his bronchi and lungs. I am hopeful we will get there.
He is so tricky, he didn't cough at all at the hospital, he has been home 15 minutes and is already coughing continuously.
Ah, well, this was HIS choice.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
My thoughts and prayers are with you. So glad you could get some rest, it makes all the difference in the world. So sorry it is so tuff on you. We are here for you, Big Hugs

Also praying for Katie to get well soon. Hug for Katie also.
 

jwife

Distinguished member
Joined
Jul 10, 2010
Messages
160
Diagnosis
05/2009
Country
US
State
Alabama
Having been in your shoes, I totally understand the conflicting emotions. Been there, done that. Hope that helps you feel a little less guilty. Does sound like FTD to me. My prayers are with you, Tom, and your family. Hang in there!
Janis
 

Tom's Support

Distinguished member
Joined
Mar 1, 2010
Messages
199
Reason
CALS
Diagnosis
08/2000
Country
CA
State
ON
All night we shifted pillows, blankets, coughed, Tom said he should probably go back to the hospital but decided to stay put. Katie was up with the sweats, coughing, fever. I get to go to work for the morning, it will seem like quite a rest. Tom wants Oxygen so I have to ask CCAC to move our visits up to this afternoon rather than Friday. Back and forth, see saw, What A Ride!
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
923
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
I know things are really difficult for you and your family. Thank goodness we did not have to experience dealing with FTD when Bob had ALS. As hard and tiring as this may be for all of you now, try to appreciate at least the good times you have and that your husband is still here. Bob passed away 13 weeks ago, today, and I miss him more and more each day. Sending you strength, calm and peace. Yasmin
 

Tom's Support

Distinguished member
Joined
Mar 1, 2010
Messages
199
Reason
CALS
Diagnosis
08/2000
Country
CA
State
ON
I am so sad for you Yasmin. I know that when Tom is gone I am going to be so empty, alone and extremely grief stricken. Right now I am scared for him because I see the panic in his eyes when he can't get a good breath. I woke them up at Sunnybrook (hospital we go to specifically for ALS) because they have finally said he can have a breathing test when we get there! #%#[email protected]#$ It is about time!

Back at the hospital, Oxygen is only for those who are nearing 84% and Tom is still better than that on his own. No comfort for the dying man. I fought hard and got an inhaler for him that will relax and expand the bronchials as well as turn the sticky goo into a more liquid state. Hoorraayyyyy! I finally got someone to understand the troubles of ALS. Poor Tom was upside down again most of last night, but he refuses to sleep in his lazyboy. He won't use the wedge in the bed so he lays flat, starts to drown, then gets up and does something like a downward dog (yoga pose) to get the liquid to run out on its own. Genius.

He is finally asleep now, so I will go to work for a bit.
 
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