New to forum and could use a little support

[Jenn1204]

Hi, I'm not quite sure how to start this post because I'm not quite sure exactly what I need. I'm going to do my best and hope that some of you can offer me some guidance and support.
My dad was very recently diagnosed with ALS. My dad is my person and this has been the hardest thing I've ever had to process. I currently live two states away from my parents, but plan to move home at the end of the school year (I work in a high school and if I can I'd like to finish the year)
I've read a lot about this disease and I've done my best to educate myself on what to expect. Before my dad's diagnose I hardly new anything at all about ALS, so I have a lot to learn.
What I'm struggling with is how to balance learning all I can, while at the same time trying to get out of my head about what I know is going to happen to him.
I know that I'm new to this and that finding my new normal is going to take time and patience, but I don't want my feelings of sadness and anxiety over what's to come to take over the time I still have with my dad. I love him so much, and the thought of him becoming stuck in his body (I'm not sure how to word that) is palpably overwhelming. I just spent a week with him and I believe his symptoms have already gotten worse since he was diagnosed 6 weeks ago.
I guess I'm really just looking for support and any suggestions you might have on managing such difficult feelings. Thanks so much in advance.

 

[Atsugi]

You're very wise and doing the right thing. Thank you for that.

" the thought of him becoming stuck in his body (I'm not sure how to word that) is palpably overwhelming."
I know exactly what you mean.

This will be a good place for you. Especially when you can't sleep. And I recommend using the blog feature.

 

[affected]

Welcome Jenn. I'm so sorry about your fathers diagnosis. You will find lots of support here.

 

[pittsburghgal]

Jenn,

I am very sorry about your Dad's diagnosis. You are doing the right thing moving to be close to him so you can cherish the remaining time you have together. You will find a great deal of information and support here. I have found it to be a great help to me.

Sharon

 

[lgelb]

Jenn,
Sometimes it helps not to think as much about "what is going to happen" (because everyone, even with ALS, passes on with a slightly different set of abilities, so you really don't know what that will be), as much as what is happening now. I know, you're thinking, "but I know he's going to die!" But we all know that of everyone. With ALS, as with any fatal disease, it's clearer what the cause will be.

You know that he has a (possibly rapidly) progressive disease, but you are right also that living the rest of his life under a cloud of sadness won't help him or you. If it's too hard to plow out of, some people here have used counseling and/or antidepressants. But you say he was "very recently" diagnosed, so give yourself [and him] time to process first, and stop by any time.

Best,
Laurie

 

[Nuts]

Jenn, the shock is awful, but try not to let your fear for your father destroy the time you have left with him. We all have our breakdowns and lousy days and nights, but when you can, focus on helping him live the life he has left.

Becoming educated is a good thing, because you can help your parents prepare, and by that I mean prepare the house and get the right equipment into place. Read here, both the current and older threads, and you will learn a lot. Also check out the stickies if you haven't already--there is a wealth of information for newly diagnosed PALS and CALS in them. Sometimes reading here can be overwhelming, so back off for awhile, or just check in on the humor threads and join people who are continuing with their lives.

Welcome, Jenn. I'm sorry you had to join us, but glad that you found us.

Becky

 

[Loverly]

IMO, there's no escaping the reality, but there will be time to grieve it later. Focus on now and live in the moment.
A new sense of normal will develop, I promise. Laugh at the absurdity of it all as much as you can. He will lose all his privacy. I found that if we joked about things it let us carry on with our business without feeling self conscious.

Good Luck,
Jen

 

[Jenn1204]

Thank you all SO much for taking the time to read my post and to reply with such thoughtful feedback. It's really nice to have a safe space to get and give support as well as to ask questions or answer any questions I can.
I've never been part of an online forum before- this is rather new to me, thank you for telling me about the blog feature as well as the sticky's.
This certainly is going to be a major adjustment to my whole family. I actually think my dad is the one who's most at peace with it. I'm trying my very best to stay in he present so your words were helpful and validating.
....boy is that hard to do
Thanks again for everything,
Jenn

 

[Buckhorn]

Hi Jenn. I am very sorry to hear about your father. You sound like a very dedicated daughter, and he is fortunate to have you in his life. Just the fact that you are willing to "be there" and be supportive and loving to your father will mean more than anything else. I am certain that your father also does not want you to be overwhelmed with sadness. It is natural for you to feel this way, but I think that PALS are often more afraid and saddened by the impact the disease has on their family members and CALS, then the disease itself. You've already gotten some excellent advice above. I struggle daily to "stay in the moment" and many times I have to force myself to BE myself (act goofy, crack jokes, etc.) and be normal aroung my husband. I try to keep my sadness to myself, in my private time. Good luck to you and come back and read all the excellent advice on this forum whenever you have the time.

 

[alligator]

hello. After a few more months, you will experience ALS saturation--meaning you will know all there is to know about the disease. In fact, you might be more knowledgeable than some Hospice nurses who have not had much experience with ALS patients. From my perspective, the key to helping your loved one live as meaningful a life as possible is to prolong the feelings of independence. Let him make as many decisions as possible and assist rather than "do" for as long as you can. I know, it is faster to just do it yourself but the loss of independence tears away at a person's soul.
There is no escape from grief and anxiety--you can only try to mitigate the feelings. No great insights to offer you other than exercise, nutrition and normal entertainment. If you are involved in a serious relationship or married, please do what you can to not let it suffer as a result of the illness. As awful as it might sound, it is ok to compartmentalize your loved one's condition. It can't be the constant topic of conversation with everyone, especially your partner, in your life. The disease has a way of stealing your identity, even as a caretaker or family member.

 

[GilWest]

I know less about ALS and more about comfort care at this point. I feel all I need to know about ALS at this point is that she has it, and it is doing XYZ to her and how to respond to the progression. The facts of the disease is secondary to patient comfort...

 

[Atsugi]

...you might be more knowledgeable than some Hospice nurses who have not had much experience with ALS patients....

It can't be the constant topic of conversation with everyone, especially your partner, in your life....

The disease has a way of stealing your identity, even as a caretaker or family member.

Alligator speaks truth, big time. None of the nurses I met knew anything about ALS, although they all pretended to be knowledgeable at first. So I ended up training every nurse at every shift change.

Fortunately, ALS was rarely a topic of conversation in our household. We were able to keep the conversation light, or about the kids and coaches and school, etc.

You're right that ALS can steal your identity. Unfortunately, families are strained. Some relationships become frustrating as the PALS draw inward and the CALS resents being a caregiver instead of a loved and loving spouse. I was fortunate that never happened to us.

But I think Jenn will be alright.