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1Concerned Daughter

New member
Joined
Feb 15, 2009
Messages
2
Reason
Loved one DX
Diagnosis
02/2006
Country
US
State
Virginia
City
Chesterfield
Hello everyone. I am new to the forum and have a few questions. My father was diagnosed with bulbar onset ALS about three years ago. For a long time he seemed to be holding his own and fighting the disease. He lost speech about 2 years ago (and I really miss his voice). Although he is not wheelchair bound, his muscle control is very poor. He had his drivers license taken away several months ago, which means that he relies on others to take him out. When I went to see him this weekend, he would not even let me take him out. He sleeps sitting up in a chair with his head on the table due to the fluid build up in his lungs. He is taking morphine sulfate as needed, and several other drugs. He is very quiet about what is going on and really doesn't want to talk about how he feels. My basic question revolves around the unknown. I am not sure what he is going through and how much more he can take. He told us that he is tired of fighting. What can we do to help make him more comfortable? I hate to see my father, who was a very active outdoorsman, suffering like this and just want to make sure we are doing all we can for him.
 
I am very sorry to hear this about your dad. This disease can be really tough on anyone, let alone someone who was so active.

The only thing I can suggest is keep him as comfortable as possible and do what you can to keep his mind occupied and away from the disease. Maybe someone has some ideas on how to do that.

Please don't give up on trying to commuicate with him. He may not want to touch the subject of ALS but there are plenty of other things he may want to communicate to you.

Zaphoon
 
keep the fight

Hi kevin here from Calagary i toohave bulbar onset diagnosed about two years ago ,cannot talk and am alot weaker in the hands ande upper body but i still do the things i always did ,not as well like hockey.I am 49 by the way have two teenagers.yes this disease is no walk in the park ,but i feel blessed that it has not progressed like it can.I am sure i have had alot of the same feelings your dad has had and still do.But one cannot give up .Try and encourage your dad to fight.Tell him the disease is not just affecting him but your whole family and that you still need him and that it would be just cheating himself if he does not.Not sure if this is any help if you want you can email me at my home email [email protected] good luck and ill be an ear for you as we are all in the same boat,cheers kevin
 
Concerned Daughter, you are doing a fine job already, obviously. We are so sorry to learn you are going through this time of trouble. You are right to try to take him out places, but be gentle in your persuasions if he really doesn't want to go. He is likely depressed from the way things are going. You might even want to get a medication for him for depression.

Maybe you can plan some visits from special people, or activities to do with him to uplift his spirits.. like bringing music or a video or a good book or something like that. Read to him, talk about the good times, tell him what a great dad he is still. Encourage him to communicate his wishes to you somehow, and show him great affection and caring.

Know that we here on the forum, care for you too, and want to help if we can. In times like these (I was hired as caregiver for 6 people in their deaths) I always think of wanting not to have any regrets for myself as caregiver. No matter how difficult things get, you can hang in there for the season. I have always taken it on myself to try to keep my client smiling and comforted. It is damned for sure, not a happy time. Your sweet presence can make his world better, each time you can be expected to visit.

I don't think I've helped you, but hope I've encouraged. God bless.
 
it's bad for him since he obviously is having a physically and emotionally time.
perhaps ask your doctor if there is anything they can do to ease the fluid on his lungs? i am sure if he could breath a little better he maybe he would have more energy and then feel even a little better.

perhaps put your arm around him and take him a little walk in the garden or the local park. seeing the birds fluttering around and feeling a gentle breeze can be a wonderful reminder of being alive, something that might not be so easy to find just sat in the living room. it sounds like he definitely needs to get on a BiPap or some sort of ventilator at least to help him sleep at night. never underestimate the wonderfully restorative power of a decent nights rest.

i think the idea of a good book is great... or better yet, perhaps you could get him a little player and have some audiobooks or nice music put on there.

i wish you luck and god bless.
 
I am so sorry to hear about your father. I know how difficult this is for you. Please know that we are always here for you.

I will say a prayer for you to give you strength during this time.
 
Thank you for the support and prayers

I just wanted to let everyone know that I really appreciated all of the suggestions, thoughts and support from this forum. My father lost his batte with ALS in Feb. I will continue to keep everyone in my thoughts and prayers and may God bless you all.
 
Very sorry to hear of your fathers passing 1Concerned Daughter. I am sorry we were not able to give you more help and support.

AL.
 
I am very very sorry for your loss. Please accept my sincerest condolences. May you find comfort in your memories of him. He lives on through you.
Warmest regards.
 
I am so sorry to read that you have lost your Dad. I too wish we could have helped you in some way. God Bless you and your family.
Laurel
 
I'm very sorry you lost your father. May he rest in peace...
 
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