Denial

[ryan's wife]

I was wondering if anyone out there had a PALS that has refused to believe that he has ALS? My husband was diagnosed in April of 2010 and has been convinced that it is anything but the ALS diagnosis. It makes me sad and frustrated at the same time. Because of his denial, he hasn't done anything to try to live life to the fullest before he is gone. We have 6 wonderful children and he just sits at the computer and watches television or sleeps. I have tried to talk to him about it, but he just gets angry....there has been ALOT of that ever since the diagnosis as well! He won't consider going to any kind of support group and he hasn't gone to church with us since October. I pray so much for him and for me to be able to give him the love and support that he needs, but sometimes I just want to shake him!

 

[Miss]

I am so sorry for you and your children. My husband is not in denial, but there has certainly been a lot of anger around here! My husband won't go to counceling or support groups either. How is your husband's progression?

 

[pmbenb83]

I wonder if you approached him as if it may not be ALS but you all should take advantage of this time as a wake up call to enjoy every day because none of know when it will be our last whether it be ALS, heart attack, cancer or auto accident. Our motto is to be busy living instead of busy dying.

Good luck to you and your family.

 

[Marjorie R. Wilcox]

Each person has to take time to absorb the diagnosed and learn everything they can about the disease. You'll need to communicate calmly to him
that a united front before the children is needed. How you react to this disease will determine how they react. There is always life to live, and that's the life you have. It takes strength and a plan to put into motion how the rest of your life will proceed. You can wither and whine, or make good memories with no regrets. Try not to wear a sign that says "I have ALS" but one that says "I love life." Yes, you can't
go through each day without knowing ALS is in the forefront, but you can go on doing those things you can and still give to others. I can't
explain myself very well. I just wish you could see how my PALS gives every day. He is exceptionally precious to all who know him. People try to help him, and he gives to them instead. He NEVER complains. My very best to you in your journey.

 

[trfogey]

Maybe he is living his life to the fullest extent he is able to live right now.

Maybe he's depressed. Maybe he is raging inside and he is afraid of letting it out at an inappropriate time. If he was a churchgoer before, maybe he's angry at God. Maybe he just doesn't see much point in going outside that little world he clings to.

Maybe he's simply afraid and doesn't know how to ask for help.

Regardless, he's got to be the one to devise his own way of handling this disease and his own reasons to continue to keep getting up in the morning. You can help him to do it, but you can't force him to do it, no matter how much you want to.

I'll repeat some advice I gave someone in a similar spot a couple of years ago: provide support, not guidance; love, not lectures; a helping hand, not a steering wheel.

Good luck.

 

[ryan's wife]

He started out with a limp and drop foot...he is now using a walker and losing a lot of arm strength. It is getting really hard to help him up when he falls now because he is getting too weak to help me help him....if that makes sense How is your husband doing?

 

[ryan's wife]

Thank you for your thoughts and encouragement. It really helps to be able to talk to others who understand the craziness that goes along with this diagnosis.

 

[Katie C]

It might be time to ask his neurologist for a neuro-psych evaluation. If there is any dementia going on, one of the signs is the PALS can truly believe they do NOT have ALS. It makes compliance with various treatments difficult. It sounds like there are other personality changes also. I would definitly have him evaluated for depression and cognitive changes.

 

[HelenL]

Ryan's Wife, I also was diagnosed in April of last year, with the same issues, and kept thinking that it couldn't possibly be true, it had to X, Y or Z instead. So I went to the ALS specialists, ran all kinds of tests, ruled out a whole lot of X, Y and Z, and those damn initials ALS still are around! Nothing like wishing for a disease like Lyme, and being disappointed.

I don't know how old your kids are, do they know his diagnosis? I haven't told my 2 sons the actual diagnosis name, but only that my legs aren't going to get better, but worse. They used to groan when I started using a cane, but after I chased them around a Target store in the little scooter, oh well, I digress. I'm still dealing with the facts, and feel perfectly fine when I'm sitting down. It's when I stand up and try to walk that it hits me in the face again. Your husband may just be scared of going out, falling, showing weakness in front of his kids and people, who though well-meaning, ask "what happened?..." I just tell people that I have some neurological problems with my legs, and it's gotten worse. But I do have to plan ahead and choose what I'll exhert my energy on during the day.

I don't know about your husband, but I keep telling myself, that "I'm still me" whether or not my legs are going to support me or not... and that I'm on the at least 10-year plan, as I want to see my kids grow up (they're 11, 14 and 17). That's the scariest part for me, leaving my kids, as I've been blessed to still have my highly adored Mom around (she's 85) and in better shape than I am at this point.

Is he still working at all? If not, is there something he can do to keep his mind and body going? If you don't use it, you're going to lose it". If he's on the computer, has he gone on this site at all? I was on this site for more than 8 months before I became a member, just lurking around and reading.

Good luck, he's lucky to have you and your kids... I hope he learns to live the rest of his life!

HelenL

 

[Zaphoon]

Ryan's wife,

Welcome to the forum. Trfogey's response is full of wisdom and insight. I'm sure you've tried putting yourself in your husband's shoes and have often thought of what it would be like to be given such a diabolical diagnosis yourself.

Your husband's reaction is not uncommon as I'm sure you have come to be aware. It just might be the only way he has of coping with it, for now. As time goes on and as the disease progresses, your dear husband will probably come to accept the reality and gravity of his situation (or maybe not).

One thing is for certain, at some point a decision will have to be made regarding a feeding tube, trach/vent and other forms of intervention. Wheelchairs will have to be discussed and purchased and with that, accommodating ramps and doorways. You, too, will need more help with the care-giving as time goes by.

Denial, initially, is part of the process towards ultimately accepting things as they are.

My thoughts are with you.

 

[Bad Balance]

I echo what others are saying. So many times I "forget" or want to plan physical activities that were easy for me in the past. Or; I get ambitious thoughts about things I want to do.

It's hard, but unavoidable to face reality as I try to stand and walk....I think that all of us go through this. I am sure that your husband has some measure of this going on, especially if he enjoyed physical activities.

Be patient with him. This is a terrible disease with no where to hide.

 

[abbas child]

Hi Ryan's wife,

I agree with all the advice you've been given. I wanted to add that since an arm is now weak, give thought to anything requiring his signature in order for you to have the ability to take care of financial, legal or household things. While you can't make him accept the diagnosis, perhaps his loss of strength will make it easier for him to allow you to have the responsibilities now. Get everything in your own name if possible.

Also, have you contacted the ALSA for your area? If he's currently using a walker, he will need a wheelchair, which is best gotten by loan from the ALSA loan closet before it's needed... and as he's falling right now, he should get the power chair asap.

My sympathy goes out to both you and your husband. And, do please consider Katie's advice as well as letting him come to terms with this in his own time.

My prayers are with you,

Ann

 

[babygurl]

Hi Ryan's wife, for one I am sorry that your family is going through this. My finace is going through the same thing. He was recently told that he has als 2 months ago. At first he was in good sprits about it but then as time went on and the affects of als started to take place he went into a dark place. He started avoiding me, not wanting to do anything, wouldn't smile, spend time with the kids or anything. As frustarting as it is, just keep being by his side and reassuring him that your there for him. Your husband is scared, scared of being a burden, scared what lies for the future. If he wont go to the support groups, see if you can get someone to come to him, someone he can relate to. Mine is still being a little stubborn, but he realizes that I love him and I'm there for him no matter what. Ya'll can make it through, keep praying and stay strong