My father was diagnosed with ALS in March 2009 and may very well have had it for over a year as that is when the symptoms set in. Since his diagnosis he has been emotionally shut down and will not even talk to his own family about his situation (denial or willingness to accept his fate), how he feels and where to turn to. This deeply concerns me as communication is vital in determining the current status of the disease. If he does not communicate we cannot help him as he needs to be and he is hurting us as well, we need to tackle the challenges as a family. We also need to discuss care options and financial status as this disease progresses. Anyone have any ideas how I can get him to open up so we can go down this horrible road prepared in the best possible manner?? Thanks
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ALS in Denial
- By Jeff28
- Posted August 26, 2009 at 11:28 am · 5 replies
- In Newly diagnosed
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- By nancy777
- Posted August 27, 2009 at 7:10 am
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I do not think it is an easy thing to talk about and when you have been told that you have a disease that will slowly take you how can you react. My mom and grandmother both had this disease and we tried to live a normal life as long as possible. Everyone has different types and affects people differently. My opinion is to be there for your Dad. It is not an easy thing for them and by always wanting to talk about it it reminds them of the possible outcome. Is your Mom involved because if she is then that is something you can talk with her about. Is a doctor involved?
- By Jeff28
- Posted August 27, 2009 at 8:33 am
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My father is very private, he will not even let my mother know how he feels, which is scary to me and the rest of the family. From what my mother has been telling me he hasn't stuck to the diet plan they gave him and he hasn't really been going to the doctor. We have an ALS clinic about 45 minutes away. I want to setup and appointment for the whole immediate family to visit, but as you pointed out I don't want to make him dwell on the outcome of the disease but he needs to get things in order for when he can no longer walk etc. We need to be proactive in lining up what healthcare can cover and if not what treatments or equipment will we need and how much will it cost. This is very difficult and do not know what we should do. It is still early but I want the family to be able to help him along as well as not go broke in the process by not being prepared.
- By nannyny
- Posted September 17, 2009 at 9:25 pm
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We are in the same situation. My relative has extremley fast progressing ALS and he refuses to watch the video explaining the disease, chat with anyone with the disease or acknowlege that he really has the disease. I have heard there is dimentia that is related to AlS could this have anything to do with tthe emtional shut down?
- By Jeff28
- Posted September 18, 2009 at 9:30 am
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I haven't read or heard anything about Dementia associated with ALS. However, it seems my father doesn't remember things like he used to even a year ago. Not to sure if their is a correlation between the two, but it makes me wonder. Overall he has never been emotional and is either in denial of the disease or just feels like talking about it is a burden to the family, when it is exactly the opposite. Hopefully sometime soon he will decide to talk about, when the time is right for him. The oddest thing about this whole disease is that now he goes to bed at like 6pm instead of 10pm, I find this oddly intriguing.
- By smfarr
- Posted September 19, 2009 at 9:34 am
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A great resource to try is www.patientslikeme.com
Many PALS are on there and they discuss their feelings openly and honestly. They also discuss the issues of depression, anxiety, and loneliness. This disease devastates the whole family - not just the PALS - but we as caregivers must really try to remember that the PALS is going on a rough road and although we support them and care for them - we can't exactly understand what they are going through.
I enjoy reading the blogs by Sarah Ezekiel and Carla Zilbersmith - both PALS - as they add humor to their situation and go a great distance to articulate what it is like to have ALS.
http://sarahezekiel.com/
http://sarahezekiel.blogspot.com/
http://carlamuses.blogspot.com/
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