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Active member
Nov 18, 2007
Loved one DX
My husband is 60 years old. He has been diagnosed with als on oct2 of this year but his EMG showed he has had it for 2 years. He can't lift his arms and his voice is very weak. He can't drive anymore and he has severe muscle wasting but he doesn't know he is going to die. He thinks he is going to get better. I can't bring myself to tell him. I just tell him they might find a cure any day. The reason I haven't told him is because he has some confusion that I thought might be early onset alshiemers. Does anyoneelse have confusion?
Hi Judy, Welcome to the forum. You are in a really difficult situation to be dealing with the mental confusion issue along with the physical deterioration. Yes, dementia is a factor in some cases of ALS, though I don't know the statistics. I think it makes it much harder on many fronts to have that complication, and I deeply feel for you. I hope you have family and community support for both your husband and yourself. As for the dilemma of telling him about the fatality of the illness, that is a tough one with different ways to look at it, so no wonder you are pondering this. I'm not sure what I would do in your situation. On the one hand, if he has hope and it is helping his general mental state to think there may be a cure possible, maybe that is long as he isn't spending lots of money looking for impossibilities or not taking care of business that needs to be attended to. On the other hand, I think people need to know the truth of the eventual outcome to make decisions about what they want to do with the time they may have left.. the things they want to say to their loved ones before they are gone, and to be involved in realistic decision making regarding end of life decisions or life extending options. However, the dementia factor changes this if he is unable to comprehend the progression of the illness. Yet, he also may just be in the denial phase, and need a little time to accept what is happening, or possibly he is trying to spare you the pain. It is really hard to talk about, I know. One more thought though....I don't think you would want him to hear the bad news from someone else in passing. I don't know if I have been much help with this ramble. You've probably been tossing around many of your own thoughts. Just take your time and be good to yourself.
Hi Judy- Sorry to hear about your husband. Dementia and ALS is a double whammy! My first thought is that maybe you don't need to tell him eveything right away and all at once. Maybe you can give him bits of information as he adjusts. Just a thought...Cindy
Your situation sounds so familiar. My husband diagnosed was in February. He felt that he would be cured and did not want to discuss any possibility of progression. Since that time, he has gone to tube feeding and has lost his speech. He also has signifincant dementia. Looking back the dementia was probably in early stages about the same time that we noticed issues with his speech, which has been over two years ago.
The dementia has progressed along with the ALS symptoms. The dementia may make it easier for him since I do not think he realizes his condition. However, the demetia also makes decisions difficult since he cannot fully understand the deciaions that need to be made or the impact of these decisions.
As difficult as it may be, I would advise to discuss what he would want as far as medical decsions and end of life decsions including services. Something could happen to anyone of us at any time and the best thing we could give our spouse is the knowledge of what we would want should those difficult medical decsions become necessary.
I still give my husband hope and tell him there may be a cure but I also am trying to fnd out what he would want when the decsions become necessary.
I have family all around me to help support me and help my husband. I hope you are as fortunate as I am in having the support of family and friends. Unfortunetly there is limited support on forums such as this for caregivers of PALS with significant dementia.
Stay strong and try to get the informaiton from your husband on end of life decsions without taking away his hope for a cure.
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