family diagnosed with als

[badger19]

My father has been diagnosed with als as of december 08. He is in his 60's and I am almost 40. After weeks of crying everything stopped inside me. I feel so sad inside but that sadness turns to anger in an instant. I am a lucky person. My father was and still is the father everyone I know wants. He never missed a game or event and was always there for my brother an I. As my wife says, I picked up those amazing traits from him. I want to be the same father for my daughters as my Dad was for me... I don't know what to do with all my anger. My patients is gone. my first reaction to most stressfull situations is anger now... I'm not the type of person who "talks about this stuff" I propable consider myself a person of another generation where needing help or someone to talk to is considered week.... I find myself being short and drawing away from my father. He is frustrated with his progressing symptoms of ALS and every day I check off on the calender I hope for a new treatment. I'm sorry for the rambling in this post. I'm letting a lot out that I never thought I could. If there is anyone that would be willing to chat i'm looking to somehow disipate my anger so it doesn't enter into my everyday life. Again I'm sorry if this post is so off topic as to be weird. Thanks for letting me vent a little. And thank you in advance for any reply's or help.

Paul

 

[GlenBrittle]

Hi Paul,

Welcome to the site. I am sorry that your father , who seems to be an awesome dad , has been tagged with this horrible disease.

It is good to see that you have decided to search for some help , help to control the anger inside. While I , and most other hear are not therapists , writing down your feelings here and communicating with others is actually good therapy.

They are a good bunch here, willing to help by sharing their experiences and thoughts to help people through their journeys.

Please continue to post here. If you find that it is not enough to calm those outbursts , I would suggest talking to a professional person. If you are a man of faith , then maybe a talk with someone from the church might help , or even a chat with a doctor.

I hope that this will help , or at least point you in a direction for getting help.

Glen

 

[ss21]

Hi Paul,
I am sorry about your father. My father also diagnosed in Aug 08 and progression is fast. I completely understand your situation, please control your self and follow the direction given by Glen. This in turn helps your father.

Sri

 

[Gelthling]

Hi Paul,

My mum has been diagnosed with MND (Im in Australia) back in March - and I am only now getting back into my normal activities of studying and sewing after the last few months of tears and breakdowns and anger directed at my poor three kids - not my Mum! She has progressed rapidly since March this year to now having no voice, walker full time and at the moment chest infection possible aspiration.

I too knew I needed help as I was not coping and called my local community centre and go to a councellor regularly just to talk it out with someone who is not emotionally involved - they give me strategies on how to deal with the anger as I am one to bottle everything up - then suddenly explode . And writing on this forum does help as you see you are not the only one with these feelings or going through these trials within your family. I also got told to write a diary every night about my feelings in a way to vent and then close the book on the day and start fresh the next day - that can help too.

Best of luck with your dad.

 

[beverly rees]

Hi Paul,
I am sorry you have to be here but it is a wonderful place to get help. My husband was diagnosed in October and had always lived a healthy lifestyle. I think all of us dealing with this disease experience anger, frustration and despair at times. I decided to go to a therapist once a month to get help dealing with my feelings. I must say it has helped tremendously. I would hate to see you detatching from your dad at this time when this is when family's need each other most.

Also Paul please keep hope alive. There is alot of research going on and hopefully our loved one's will reap the benefits of this. Bev

 

[asantiago]

Paul,
Welcome to the forum, sorry to hear about your dad. I'm trying to find some words of comfort for you but am at a loss, I've been there. When my mom was diagnosed at the age of 50, I was just 31. You have a positive attitude inside you that you have to draw strength from. Keep focusing on all the good things you've gotten from him, all the good times you've had, and how you were very fortunate to have had him for 40 years. It's ok to take time to grieve and feel sorrow and pain, but at some point you have to find a way to go on with life and make every day you and your dad have left count.

It helped me to think of other's who didn't get a mom for 31 years. I have a few friends who grew up without a mom all together. Whenever I felt myself slipping into sadness I thought of all the great things in life that I was blessed with. No matter how bad things seemed I knew someone else out there was having it worse than us.

Your attitude through all this is going to determine everything. Find someone to talk to even if it is coming here to post often and just vent. Or maybe you can find a good friend to confide in. Talk to your wife about how you feel even if it feels uncomfortable at first, I bet you find it gets easier and easier the more you do it. I was never one to talk to my husband about feelings but he forced me to and it really helped me. It is amazing how just saying the words out loud to my husband "I'm sad today" and then his embrace really made me feel better.

I wish you the best through this journey and hope when you feel alone or frustrated you will seek the support you need.

 

[mare]

Paul,

First, after your description of your dad, I must say that your wife paid you the ultimate compliment!

Your feelings are quite normal & common, although possibly new & strange for you.
I applaud you for acknowledging them and realizing they are causing you to become impatient & withdrawn. Needing someone to talk to is not being weak; I think it shows strength to admit "I don't like feeling this way- I want to be & do better."

As Bev says, (and you mention) you don't want to detach from your dad now. This is a time where you can actually strengthen your relationship with your dad on a higher level. But, it takes time, understanding and sometimes an outsider to help sort out your feelings. Don't be afraid to seek out help; it will be a gift you give to your dad & your family, as well as yourself!

As a first step, depending where your dad is treated, some clinics offer a counselor to the family for just this type of thing. If you are comfortable with this, maybe you could check to see. They are great offering "coping skills".

From your post, you seem to be an intelligent, loving, caring & insightful man who wants the best for his family. I think you will find that with the right guidance, you will learn to process your feelings in a healthy manner that you may find peace & comfort!

My best to you-
mare

 

[kylisa]

Badger,

Go ahead and vent your anger in an acceptable manner.......go to the gym, go to the woods and scream and beat on a tree, whatever it takes.....cry, pray for the strength to help your father through this disease. I went through all the same emotions early on after my mother was diagnosed in Feb of 2008. After finally realizing the reality, I set out to do all I could to help her get through the journey. It was hell to witness, I am sure it was worse for her to live with. I hope you can get a grip because the time to make good memories are NOW! Do not put off anything he wants to do (within reason). Time waits for no one, ALS is an all encompassing existance. Take what you learned from your wonderful father and incorporate it into helping him get through this. Your life will be on hold to some degree for the next how ever long. Be assured, there will trials and irritations galore. There will be days you think you can't deal with it no more but, you will because your father taught you devotion and perserverance. You will come to except the inevitable and when he is finally free from this monster you will be comforted knowing he is no longer suffering. I am 45 years old. My mother died last month. We are still attempting to acquire a new kind of normal. One thing for sure, we miss her. I am sorry my 4 year old daughter won't remember much about her at all. However, we are thankful she is no longer sufferiing. Take a deep breath and just meet every challenge with all the strength you have. He will need you to be his strength as time goes on.

Wishing you all the strength in the world.
Lisa

 

[handinhand]

Paul, I could just feel your sadness and anger and all the emotions that follow hearing the news about this dreaded disease....It is at first a shock.. a numb feeling for me. Then it really hit me, with such a grief, I can't even tell you how hard it was.. knowing the next step was to tell my Husband, then each of my chrildren and then my good friends. As the days went on the anger came.. . Why me and why now . We have so many places to go and things to see.. Just no way this was going to fit into our active life.... Then the determined scanning on the internet to find that one cure that is out there somewhere? It just has to be? After a few weeks of agony I finally settled down some..... In someways it does get easier with each passing day... The monster keeps showing its self,but through the help of my family ,my HUSBAND, and good friends. I know I can do this.. With out them I could NOT! You can be strong and I know you will. Linda

 

[northerngirl]

Hi Paul, I am so sorry to hear about your father. I am more sorry for how you are feeling. I can relate to the frustration, 60 is hardly old enough to finish all the things you Dad should be doing for you. Like loving you for ever. That’s what Dads do. I would like to point out to you all the wonderful things your dad has done for you and have you focus in that. But what is the point? you are already trying. ALS is a cruel thing. What I can tell you? Your love for your Dad makes you very special, and even though this journey will be hard for everyone. You will look at life different from now on. You will feel so many things, good and bad. But, you will , believe it or not, be stronger, wiser, and a different person for it. I know you would never chose it. But that’s what you will be. I wish I could tell you thing will be OK. But, I know that before they can be, .... and there will. You will go thru some stuff with your heart that will be hard. I really wish I could have sent this in a private message to you, and I really wish I could give you a big hug. You will have good days and bad days, I wish you lots more good days.