Old 11-05-2018, 08:27 AM #1 (permalink)
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Question Feeling lost

Hello all,
Iím new at this, hopefully Iím getting it right lol. June of this year my father was diagnosed with ALS. I was in the room with him when he received the news. Those words haunt me ď1-3years, I recommend you go home and get your affairs in orderĒ.

It started with a heavy feeling in his left arm and six months later..... no control of left arm, left leg barely hanging in there, right arm is starting to go, canít speak, drooling, choking, constipated........

I am soo soo afraid. Iím not ready to lose my dad and not to the f*cked up disease. Iím angry! Iím scared. Iím worried. Iím drained. Iím tired. Iím frustrated. I have never felt more alone in all my life and the worst part is I feel so bad for complianing about how I feel. I look at him and see how badly he is struggling and I want to cry and scream and I canít. I Feel like anyone I try to talk to about this just doesnít get it.

I started seeing. Therapist, ironically she has a family member also with ALS. She basically told me to stay off the internet, stop looking for help, itís a terminal illness and I have to accept that. F*ck her! I want my dad comfortable.

Iím super emotional right now and starting to ramble. I am just so empty.......so lost.
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Old 11-05-2018, 02:19 PM #2 (permalink)
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Default Re: Feeling lost

Firstly I'm so sorry your dad has received this diagnosis.
All your feelings are totally valid, and we all feel every one of them too.

I think your therapist may have meant to stay off searching for miracle cures on the internet. I'm not sure, check with her on that so you know her meaning as that's important. This often happens - people are so shocked they feel there 'must be something' and let me tell you there are a lot of scammers out there boasting of cures and they will happily empty every one of your bank accounts to give you their snake oil.

So I'm glad you have come here because we all know there is no cure, yet. But we have a huge range of experience between many members, and have found many ways to address quality of life, symptom relief, emotional support and practical tips. These experiences apply to helping your dad and to helping you cope. It won't be easy, we don't sugar coat things either.
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Old 11-05-2018, 03:30 PM #3 (permalink)
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Default Re: Feeling lost

I'm sorry to hear about your dad. It sounds like his progression may be fairly rapid and so I would especially make sure you are staying ahead of the game in terms of equipment. Let us know if you need help.

Tillie is right -- I'm sure the therapist did not mean to avoid finding out ways to keep your dad comfortable for as long as possible. You can and should keep up with the options, and that will help you feel more in control as well. There are definitely things you can buy/kludge/do for him that will help him feel better.

Cry and scream all you want -- in the shower or car. You don't have to be super-strong all the time. You just need to stay you, for him and you both.

Often, your city may have a [ALS and/or other serious/terminal illnesses] caregiver group or nationally there are teleconference/Webinar options where you can talk with your peers.

We will support you however we can.

Best,
Laurie
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Old 11-05-2018, 05:18 PM #4 (permalink)
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Default Re: Feeling lost

Hi
Yes all your feelings make sense I agree that the therapist you are seeing probably means “ stay off doc google and quacks “ but this forum is different. How good you found it ! May be you can discuss it with them or with your dad later when the sea is calmer. This is all like sailing rough sea without a compass.
Here you have met people on the same boat.
Your love for Hollis your greatest weapon
Hugs
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Old 11-05-2018, 05:19 PM #5 (permalink)
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Default Re: Feeling lost

I meant your love for him
Sorry
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Old 11-08-2018, 02:44 PM #6 (permalink)
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Default Re: Feeling lost

Of course no one understands. It’s unfathomable and hideous. This group understands and really cares about your experience. Ask anything and everything.

If you haven’t reached out, do find your nearest ALS chapter. The help and resources are invaluable. If your dad is a vet get the VA on board and since you live in CA start to get info on what your county offers in the way of assistance. You didn’t give your dad’s age, but if he is a senior there are programs in place. A social worker will be required to visit. They are helpful in assessing what you may need regarding equipment and assistance.

I’m really sorry you’re here, but welcome.

Jennifer
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