ALS Emotions

[KenG]

My father was diagnosed with ALS about 1 year ago. He is currently transitioning into the state of requiring an electric wheelchair full time. I'll try to keep this post brief. The news was obviously devastating for all of us; and my dad was put indebted soon and anxiety medication. This is all to be expected given the circumstances.

This may be too personal or intrusive to ask; but I'd appreciate any feedback, especially from other PALS: I worry about my dad; and it really hurts me to see him struggle with something, or even worse, to see him get emotional because of the situation. I don't know if I should be openly expressing sympathy, let the emotions pass, or what. I feel so bad for him and sometimes feel guilty if I feel like I'm not doing everything I can, find myself not really thinking about his situation when I'm away, or if I express any frustration to him about the situation.

I want him to find peace of mind and not suffer mentally. I guess I am asking for stories from your own experience with your emotions; like how you felt about yourself, how you wanted others to feel about you; and how/when/if you finally found peace of mind.

Thank you all so much for any input.

Ken

 

[KenG]

If there is a way to edit the post I haven't found it. My phone autocorrected: indebted soon = on depression

 

[dalvin]

Ken, first be aware that most of us suffer with what is known as Emotional Lability. Basically our emotions go haywire. We may feel a little sad but cry our eyes out or be a little amused and laugh our butts off.
That being said, it is quite normal to feel depressed or even angry on being diagnosed. Our life plans have just been torn apart and it does take time to adjust.
For editing. When you make a post, in the lower right corner of your post there are some blue circles that say - post, quote. For a short period of time there should also be one that says edit.

 

[skipper66]

When my mom had terminal cancer I kind of let her take the lead when talking about it. We had some really good conversations and I carefully listened when she talked about her wishes when she would pass away. She had cancer for 5 years before she died. But, I remembered everything she wanted from our first conversation. My mom and I cried together, prayed together, and laughed together. Your dad has been dealt a horrible blow. But, you still have time left for some good times. Just take it one day at a time and cherish every moment.

 

[Atsugi]

Ken, you’re right that it’s normal for you and your father to have depression and anxiety. It’s normal to be devastated. It’s not too intrusive to ask.

We’re very honest on this board about everything.

Your relationship with your father is unique, so only the two of you know what works.

My wife was my PALS. She broke into tears at the moment of diagnosis, perhaps because she was a doctor and truly understood ALS and the manner of living, the manner of death. I was simply confused. After meeting with many doctors and doing a lot of research, I decided I would give her whatever she needed or wanted. So I simply stayed physically close at all times, and listened closely to her and gave her everything needed or wanted. When she cried or yelled or complained (and there was very little of any of that), I stayed quietly by.

She didn’t want to be a burden on anyone. I suspect your dad feels the same. Remember only recently what he wanted for you—to be independent of him. That hasn’t changed.

I recognized that ALS takes away all choices. You don’t get to choose how or when to eat or shit, live or die. So I decided never to argue, just give her whatever she wanted.

Here’s a start: I doubt that the two of you want to spend his remaining days crying, being super-sensitive, or complaining about the bad luck. Also, on the other hand, I’m sure you don’t want to make your dad think you don’t care by expressing no emotions.

Don’t feel guilty about not doing everything you can. Just do what you can. Remember, he’s a full-fledged adult; if he wants something, it’s up to him to ask for it. In a similar vein, you should recognize he’s an individual with a totally good brain, cognition and emotions and let him be in charge of his own care.

Don’t feel guilty if you find yourself not really thinking about his situation. It’s not really your problem. You just have the opportunity to help. I suspect you’ll do a good job at helping.

 

[krnNdug]

Great questions.

When I was diagnosed we had a ton of emotional reactions. We still do from time to time, but we have chosen to enjoy every day we have left, however long that is. I would have a hard time if my wife and kids didn't hurt from time to time, or if I didn't get down once in a while. We are human and have emotions.

No one can tell you what or how to feel.

We faced it head on and accept what it is - a part of our lives. It affects every one of my family. It is not only me that has ALS, my wife, kids, grandkids, friends etc all are affected and "have it".

You will find a lot of support here. I would strongly encourage you to find a local ALSA support group. They are great. We were nervous going to our 1st one, but now it is something we look forward to each month. People there have been around this and know what people are feeling.

Good luck and I wish you & your family well as you progress on this journey.
Doug

 

[KenG]

Thank you all so much for your input. It's so nice to discuss things with people that understand. Too often I feel that those around me have no idea what this journey is like.

I suppose I haven't introduced myself. My name's Ken, I'm a young first-year college grad fresh out of Pitt and I'm having oh so much fun trying to find my way. I've always been a really sensitive person and pretty tough on myself, so I feel like that is part of the emotions I've been going through.

Concerning my dad, I worry that he will never come fully to terms with his situation and go back to just living each day happy with what he has left, you know? I'm wondering how some of you have gone about that and whether or not it was a long and gradual process or just a quick shift in your point of view. I know Father and Son is a unique connection and I'd have to discuss these things with him, but I feel like right now a deep discussion like that would just be too emotional.

I've got no filter right now and I'm just blabbering my concerns so I apologize.

Ken

 

[cheerleader]

Ken, as a CALS who just lost her husband from ALS, can tell you your presence means everything. Just being there is a gift for your dad, and you won't regret it. You will get great information on this forum to help you support dad AND help you deal with the grief of watching someone you love lose so much independence. Donna

 

[nebrhahe53]

>Concerning my dad, I worry that he will never come fully to terms with his situation and go back to just living each day happy with what he has left

gee whats so bad about that? Wish I could do that. Good luck to both of you. My heart goes out to you.

 

[Atsugi]

KEN, I think I can sum up what I've learned from PALS about life:

If you wake up on this side of the dirt, it's a great day. Live it to the fullest.

Just take one day at a time. Don't worry about tomorrow. It's gonna come whether you worry or not, so why worry?

 

[lgelb]

Hear, hear, Neil & Atsugi. My husband didn't introspect about his boatland of illnesses more than once in a blue moon. Carpe diem and when that doesn't work, wait for tomorrow. When that doesn't work, we get into quantity vs. quality of life decisions.

Ken, your dad has to deal in his own way and time. If/when he wants to share or hear your views, just create the space that he can say so. I think of it as when our son was a teenager. You don't dive into conversations; you wait for the right time. Everyone's relationship is different, so I don't think there's a timetable. But if/when you feel called to say big ticket things like "I love you," just say them. If he knows your heart, some connection of the type you seek has already been made.

 

[Nuts]

Ken, we all lose our filters here from time to time, so you're in the right place

You might express to your dad just what you've shared with us. Tell him that you want to know how to support him. Ask him how he feels about sharing emotions and struggles with you. He may be the strong silent type or he may be trying to shield you, while wishing he could open up to someone. You'll know pretty quickly which way to go, and he'll know you're available should he decide to share.

It's been interesting and wonderful to watch our children (about 10 years older than you) and their relationship with their dad as we travel this journey. They all add something different and all of their relationships with him have become closer. It's hard for the patriarch of the family to need help instead of giving it, but somehow we're negotiating that shift in a way that has him acknowledging their strengths and finding comfort in relying on them. Even more suprising to me has been having our youngest son, who is so much like my husband, help me to better understand how to help without smothering. I think only a son could have done that. You are clearly a blessing to your family and I hope you continue to post here.

 

[gooseberry]

Ken, My son is 12. He has provoked some.of the most honest and thoughtful conversations with his dad. In the beginnin no one talked about it. We just kind of were in a fog trying to survive our own emotions. But 7 months post diagnosis, when it comes up, we talk about als and its issues like the weather or which holiday movie to watch.

A couple suggestions for you...try to stay in contact with your dad. Sometimes family stops talking to or seeing the loved one with als. This is so hard on the pals. Secondly, things you may have done with your dad may not be possible. Find new ones you both enjoy...or even if you dont just spend time with him. Your presence will help him feel loved and accepted.

Steph

 

[Atsugi]

The most effective way for a man to say "I love you" is to show up and simply be in the room there with him, maybe watching TV.

As lgelb said. lots of relatives simply disappear when the diagnosis is as rough as ALS. Don't disappear, and it will mean the world to him.

 

[MaxEidswick]

>The most effective way for a man to say "I love you" is to show up and simply be in the room there with him, maybe watching TV.

Ditto that!