Never thought youre life would end this way Dad.

[Why my Dad]

I'm so sorry to hear about your father Karen. My Dad is 82 and just diagnosed with ALS in Oct/09. Our family doctor had diagnosed him as having a stroke about 5 years ago. Last spring he had to have a permanent cathater inserted and - as his legs were getting weak and he was having trouble talking and swallowing...we requested some in-home care. A speech therapist and physiotherapist came in - as well as a nurse who replaces his cathater once a month. I had been advised to contact the Geriatric Clinic at the hospital to have Dad assessed as well. Thank God for these nurses as they were the ones who told us that they didn't believe Dad had a stroke - they believed he had a neurological problem and advised us to see a neurologist. My Dad has really been depressed since he was given the diagnosis. His legs have become so weak he can no longer walk on his own. I have to help him with all personal care until we are able to get assistance with home care again (there is a waiting list). Dad was choking on his food but I am still learning what he can and can't eat. I have been giving him Ensure twice a day as he has always been one who would only eat at dinnertime. He feels as if he can't clear his throat sometimes...but in the last couple of nights, he has been up off and on all night making noises as if he is trying to clear his throat. It is as if mucous is there and he can't move it. He gets flushed and ends up being short of breath. I have called the casemanager for CCAC (in home care) to see if a nurse can come more often to check his breathing as the nurse who comes once a month only changes his cathater. It is so scary being here with him and not knowing what to do to help him. An Occupational Therapist came today and is going to have some bars installed so that he can help to lift himself better as it is too hard for me to move him. It is the unknown that is so scary for me - and it is for Dad too. It is such a horrible, horrible disease for people to have to live through. I just hope I can stay strong enough to care for him. He has always been the strength of our family. Everyone loves him. I don't know why MY Dad had to get this awful disease. I feel helpless and pretty alone in this. I have just joined this chat group and read this discussion so I can understand how terrible it must have been for you to lose your Dad. Again - I'm so sorry and I can only hope that your pain eases in time.
Dianne

[GlenBrittle]

Hi Diane,

Welcome to the site. As you have already seen , this site is full of helpful caring people , with firsthand knowledge of the issues that we see.

I too, have in home care from the CCAC. I get a nurse every Wednesday. Call your case manager and tell them to increase the nurses visits . Also , if he is having trouble swallowing there is no time like the present to get a PEG put in. HINT: Get the surgeon to order in home care to get the nurses in to check the peg site

Yes , its a devastating disease, and we are here to answers any questions you may have.

Glen

[Why my Dad]

I'm so sorry for your loss Karen. I understand how terribly difficult it must be for you at this time as my Dad is my world...and I can't bear the thought of losing him. I live with my Dad - moved in almost 8 years ago when my Mom was diagnosed with cancer so I could help out. Mom passed away on Oct 25/06 and my mind still won't accept that she is gone. Dad is 82 and just recently diagnosed with Bulbar ALS. He's been having problems with his legs for about 4 years now - then his speech became affected about 2 yrs ago and then swallowing. He had been mis-diagnosed as having a stroke about 5 years ago and it was a casemanager for home care that recognized he had a neurological problem from listening to him talk. It has been devastating news for the whole family and has everyone on edge. Dad is our strength...he is the link that binds us together. He is now unable to walk at all and shows increasing difficulty with swallowing. The neurologist told him that people usually "pass" from pnemonia - and now Dad is worried that he can't cough "right"...that something isn't working. I feel so helpless and even now...I understand how hard it must have been for you to watch your Dad become a different person. I see the change in my Dad already. He no longer makes jokes...he is depressed and sits worrying a lot. Oh how I wish there was something that could be done to end this disease! You are in my prayers Karen - please know that I feel your pain.

Dianne

[brooksea]

Karen,

Very sorry for the loss of your dad.