Need Advice

[lakelover]

I need advice. I understand the aspect of denial when you have been given a fatal disease diagnosis. What I need to know is how long does this denial last. My husband’s first diagnosis was Aug 15, 2011 and the confirmation from Duke was Oct 25, 2011. My husband will not talk about the disease nor has he told anyone in his family. He also asked that I not say anything to anyone. I shared the news with my family and our son. I was so distraught and having an extremely hard time holding things together without breaking down in front of my husband and my family realized something was wrong with me. Of course he was very angry with me for saying something and other than my family, my boss and the people on this forum I have not said anything to anyone. He owns a business and has not said anything to any of the 70 employees who work for him. Ralph has always had this approach concerning any health issues related to him or his family. He looks at sickness as a weakness. His whole family sticks their head in the sand and acts like there is nothing going on and although I hate to admit, it seems to work for them. In 1990 his mother was diagnosed with Rectum Cancer with a 35% chance of survival of 2 years. She is still alive 21 years later at 83 years old. His brother was diagnosed with stage 3B lung cancer and he just celebrated 3 years cancer free. His father passed away in February 2011 at age 88 from frontal temporal disease. Of course the doctor at Duke picked up on the frontal temporal disease. He has already set us up for March to test for FTD. I do not see any signs with the exception of words. He has a problem remembering certain words when he is talking. I have not seen anything work related which would question his ability to make a decision. My mother has dementia and he is not showing any of these symptoms. His hands, arms and shoulders are about gone but he refuses to use a straw or any utensils to help with his eating (he owns a restaurant so he eats in the dining room). He argues with me about this because he does not want anyone to know there is anything wrong. You would have to be blind as a bat not to see there is something wrong. He is starting to have lower back pain and neck problems. Again he will not let me check anything out which could help him. He will take Rilutek and vitamins but if it is a handicap device he will have not have any part of it. I am aggressively trying to get him into the Cytokentics Drug Trial which he does want to participate in because he wants to get his strength back and does not want to get any worse (like I said denial)! I cannot make any plans to prepare for what is coming in the future. My daughter in law’s mother, who owned a handicap van, passed away last month. I purchased this van but am having to hide the vehicle from him. He stills works 10 – 12 hours a day and will not take any time off to do anything else. When I try to talk to him about what is happening his response is always the same, I am going to fight this with everything I have, my mother and brother has beaten cancer and I’m going to beat this. How I wish that could happen. Do I just keep going along with things and not push him? Do I continue to deal with things as they arise and prepare the best I can? For 39 ½ years we have always talked about things and I have never kept anything from him. I feel like I'm lying each time I make a decision concerning him without him being aware of it. What do I do?

Wanda

 

[caro]

Dear Wanda: I am sorry for your struggles and want you to know how much we all care about you and your family! My dearest friend, whom I help care for, also had deep denial and would not tell anyone, she still won't. I pray constantly when I am with her to do and say the right thing. In her case she eventually had to admit to needing help due to muscle loss and so we found a way. I guess that denial is part of the grieving process. I just reread Elizabeth Kubler~Ross's book about the stages that is connon when being confronted with a diagnosis. I hope you find support for yourself as well. I talk to God and ask for help all the time too~it has helped me and my friend too~tremendously! Sending you my love and support. Jayne

 

[10starr]

I would suggest that you go ahead with your plans.. you are doing the right thing. He will eventually come around and have to accept that he is facing the struggles of the disease. I would go ahead and show him the vehicle and tell him you are trying to help. Later on he will really appreciate your efforts, especially when he becomes much less independent. I think his response right now is very normal and human. Also if he does have the FTD, that makes it even more difficult for your loved one to cooperate. He may not be able to think rationally or appropriately. And it does becomes challenging when others know something is not quite right about him. I say go with your gut and tell them as little or as much as you feel is needed at this point.
It may just take more time before he comes around. At least that is what happened in my mother's case.
Best wishes!

 

[HelenL]

Wanda, as the person with ALS, I too didn't to tell anyone outside of my family... though I DID tell them, it was through a long email that I sent to all of them, I wouldn't have survived it otherwise. I went through a long period of time testing for everything else as I didn't have that many tests before my first diagnosis, and really thought that it was something like Lyme disease.

Honestly we can all tell he is in denial, but you can't afford to be. So keep making whatever plans you need to do, tell him about it sort of in passing ("oh, by the way I picked up a handicap van for when you need it, just thought you'd want to know..."), wait for the explosion, and continue on. That is not a battle he's going to win... about the eating in the dining room, tell him he either needs to tell people what's going on, or eat privately.

Honestly I'm relieved that everyone seems to know about it now. My biggest fear was that my children would find out by accident, and I didn't want them to know right away. People will either disappear or come out of the woodwork for him... I've been lucky, I've had lots of help already, and I'm pretty functional still (using the scooter for most stuff, walker occasionally).

Sending you a good hug,

Helen

 

[hjlindley]

This is a though one. He can deny it with all his might, but as my Mom used to say, "If you want to make God laugh, make plans!" This process will teach him humility and acceptance, and I am so sorry you are going through all this.

 

[Lobster]

ALS does not just happen to the person who has it. ALS happens to spouses, partners, children, parents, siblings, neighbors, colleagues, etc.

The people around me are entitled to their emotions and responses. I don't get to control that. I am striving communicate my hopes, needs, and desires now because of the likelihood that my ability to do so will soon be severely compromised.

This must be incredibly difficult for you. Your husband is fortunate that you love and care about him so much. What you have done is out of love and concern.

Your husband may have early signs of FTD, or it could just be that the stress (incredible stress!) of the diagnosis is having an effect on him.

I hope things work out as best as they can. ALS is difficult for everyone. I'm sorry you are going through this.

 

[TedH5]

I would suggest to go ahead and follow through on your plans, it is prudent to do so. Every one copes differently and eventually he will have no choice to deal with it. I know that I did not want to tell people right away because I did not want to be "mourned" while I was still alive. Everyone deals with things differently. In my humble opinion as long as he is not withdrawing and isolating himself then allow him to deal with it on his time table.

 

[Sammantha]

Does your husband see Dr.Bedlack? It sounds like you are taking on the worry and preparation so why should he...Your husbands family sounds like my husband's. My husband wouldn't quit work until he was in a wheelchair, he has arthritis and wont even take an aspirin. This is the best way he knows how to handle but you need help and support..its kinda like aa where the family member goes for support even though the actual person doesn't admit anything is wrong! Get with other caregivers of spouses talk with your family but let him keep his beliefs, one thing i had a hard time with was the loss of control and right now he still has some control, and that is important to some people..especially independent ones...its too much for him to realize he will be dependent on others for everything...you are doing great by preparing and he is white knuckling it until he free's himself.

 

[lakelover]

Thank you for everyone's advice and support. I can understand the stress and emotions living with a loved one facing a fatal disease. I am so there. These feeling cannot compare to the person who is actually living with the disease. If you've never faced a situation then how do you tell someone how they should feel or react. My family is very careful about asking any questions because they understand he did not want them to know anything. They are very supportive and just want to help anyway they can. My only open communication about what is going on is with the people on this forum. I know my laptop will not ask him how he is doing so I don't have to worry about him getting upset. I know everyone on this forum are facing or have faced heartbreaking issues, I am not alone. I cannot thank you guys enough for being there. The way people are so open on this forum sharing their feelings about very difficult situations is amazing. I will continue doing what I can and let him deal with this disease on his own time table.

10Starr and HelenL if you see a NEWS ALERT on TV concerning an explosion in Greensboro, NC it will be my husband when I tell him about the van.

 

[lakelover]

Sammatha, yes my husband is seeing Dr. Bedlack. He has been really great. When Ralph told him he was going to fight this disease, he pull his chair over to him, put his hand on his arm and told him that there was not a case on record of anyone beating this disease. He told him that it could be months, years or decades before the disease would become fatal. He also told him because this disease progresses very differently on each individual there was no way he could predict when that would happen. He said hopefully you will be one of the ones surviving decades. I think that was all my husband heard that day.

You are so right, my husband is very independent. He has worked and supported himself since he was 15. He has always been the go to person in his family. I know my husband and although he has not said anything, I know he has to be very concerned about losing control and having to depend upon someone. I am afraid when the realization hits he will give up. I guess that is the reason I don't want to push him to hard.

 

[lgelb]

Dear Wanda,
As far as I know, my husband hasn't used the word "ALS" with any friends or family. Ever. It's been 2 yrs since his formal diagnosed and he's in a wheelchair. He has two other fatal diseases and doesn't really talk about those, either. It's the habits of a lifetime. Sometimes people have upbringings where it just isn't done.
I finally realized that he was never going to tell his family (all thousands of miles away) re ALS, so I did. Then I told him that I had done so. Similarly, I told him when and how I wanted to work "ALS" into his Facebook posts, so alert readers could be aware. Then I did it.
Your husband will find a way to get help. My husband sometimes tells people, after a while, non-specifically, that he's sick and getting worse. It's more hints than statements. They work out whatever they need to. I don't fill in the blanks unless it's medically necessary.
As you find the words to tell your husband that you want to help him fight and leave out the part where you don't expect him to win, he will ultimately let you help him cope, and you will be there for him when he realizes he is losing.
As for thinking you are "lying," it is not lying if you know that he doesn't want to know certain details yet.
And if he isn't planning on giving up, why should he? When my husband and I married, the average life expectancy for his genetic disorder, way before ALS, was a handful of years into our marriage. We now have a 29-year-old son.
We don't know what the future holds. You will help him get through tomorrow, and the day after, and the day after that.
If he declines faster because he works too hard, he won't be the first. It will be his choice. You can present that basic tradeoff to him as an FYI, as "I couldn't sleep if I weren't sure you knew..." information, coupled with the "I will help you fight / cope/ work however you want to." The rest is up to him.
If you have been together for 39Y, he knows what that choice means. As Sammantha says, you needn't waste time fighting his beliefs. They are an integral part of the man you love.