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StevieSearching

New member
Joined
Feb 23, 2015
Messages
3
Reason
CALS
Diagnosis
01/2015
Country
US
State
ny
City
Brookline
Hello All,

This is my first post on this site, I'm not sure how to properly do this but I'm asking for help from anyone willing to share their experiences with my and my family.

In January my family and i found out that my dad has ALS. He's in his mid 60's and has always been a strong, hyperactive, independent, type-A kind of person. My mom and him had just returned from backpacking "The Way" in Spain back in October, and he noticed a few things "off" about himself physically. Fast-forward a few months of testing, back and forth to this doctor and the next... and were told in January that he has ALS. Obviously this was crushing news, his youngest child had just left for college and his new chapter of travels was finally starting.

Within the last month things have progressed very, very quick health-wise for him. He went from a walking, talking, eating, seemingly normal person... to needing a feeding tube, a concussion, oxygen masks, rapid and frightening weight loss, not being able to talk, confusion and hallucinations caused by the other issues ... its terrifying. Just when i think i'm starting to wrap my head around the new reality and adjust to how things are now, it changes in the blink of an eye for the worst.

He's DNR, and this diagnosis and current situation is everything he never wanted for himself. My family is struggling to find a balance in terms of his care, and we are left with so many questions. Are we smothering him? Does he want us around more? How much is too much? What is he trying to tell us he wants? What does he want us to know? Does he know how much we love him?

It's so hard because he's trying to communicate his needs to us and we can all tell how frustrating it is for him. So my question to anyone willing to help is this: What do you wish your caregiver knew? If you are an ALS patient or have experience with this, what do you wish your loved ones and support system knew about everything. What do you want and need from us?

I know this is a loaded question and its asking a lot from people, but any help you could possibly offer would be very much appreciated. I want to do everything i can to make him as happy possible and give him what he needs from us now and just feel so lost and useless. This man gave me the world, and i feel like I can't do anything for him when he needs me the most.

I know there's folks out there that have it worse than us, so maybe this question can help other families as well.

Thank you.
 
Every day is a new day with ALS. Just when you think you got it covered something changes. It's hard PALS and CALS .
when your world is constantly adapted to new situations. You may find yourselves asking these exact questions. There are no simple answers. But some how you manage to adapt to a new day. Just by being there you are giving him your world.
Patrick
 
I can't speak from a PALS point of view- but will share this. My granddaughter put together a book for hubby with letters from everyone in the family, photos, etc. and I think had it printed on Shutterfly on the Internet. Everyone wrote memories, things that made him special as a dad, grandpa, son-in-law, husband. He carried that book everywhere, and read and reread it countless times, as well as showing it to everyone who came to the house. Those acknowledgements of his contributions to all of us as a person seemed to mean so much as he became less and less able to function physically. It was a constant "I love you" to him in print. Think the best thing you can do is to keep telling him great memories, things you've learned from him, etc. sure you are already doing that. A person can NEVER hear I love yous too many times! So sorry for the pain you are feeling. We've all been there! Hugs to you. Donna
 
I can't speak from a PALS point of view- but will share this. My granddaughter put together a book for hubby with letters from everyone in the family, photos, etc. and I think had it printed on Shutterfly on the Internet. Everyone wrote memories, things that made him special as a dad, grandpa, son-in-law, husband. He carried that book everywhere, and read and reread it countless times, as well as showing it to everyone who came to the house. Those acknowledgements of his contributions to all of us as a person seemed to mean so much as he became less and less able to function physically. It was a constant "I love you" to him in print. Think the best thing you can do is to keep telling him great memories, things you've learned from him, etc. sure you are already doing that. A person can NEVER hear I love yous too many times! So sorry for the pain you are feeling. We've all been there! Hugs to you. Donna

My sister did this for me last year and it is my most treasured belonging. Letters, memories, funny stories and photos from over 50 friends and family.

On a practical side, arranging to give help/respite to primary caregiver.
 
>But some how you manage to adapt to a new day. Just by being there you are giving him your world.

Ditto that!



Max - Monday, February 23, 2015 12:12:37 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
So sorry to hear of your Dad's rapid decline, and the heavy burden this brings on your family. My heart goes out to you. I too was diagnosed in January, and although my progression has not been as fast as your Dad's, let me share with you what I want and need from my CALS (caregiver). I want my husband near to hold my hand and pray with me. I want him to help me with whatever I need . . . physically, emotionally, spiritually. I want him to encourage me by telling me how much he loves me, that he's with me, that we're together on this journey, that he will be there for me no matter what. Your father must be very frightened, and I don't think that you can "smother" him with too much love. Give him as much love as you can! You have probably been in touch with the ALS Society in your area? Have you explored assistive technology to help him communicate? There are many PALS (people with ALS) who can not speak, but are able to communicate through computer technology. I think this would be important for him. Please explore this forum further. There is a lot of information here, and support for you and your family. I'm praying for your Dad and your family at this most challenging time.
 
As a cals, I would say always expect things to change. Don't expect them to stay the same. Get educated and try to anticipate things your dad may need. If he is a vet contact your pva rep and get his benefits going. Contact your local als association chapter. They will offer support, cou seling, stuff...shower chairs,wheelchairs,speech devices, etc free of charge. Make sure a will is done.
 
As a former CALS, I think it's important to distinguish between what you can control and what you can't. If he's consistently hallucinating, that can almost always be improved w/ BiPAP tweaks until the end. Also not sure why he'd be on oxygen, not usually a good thing, again, until the end. As for communication, can he be a switch or blink/board user? So I guess my first question would be to ensure he has the quality of care/support he deserves and that everyone is clear about his wishes. If he is at home, you have the physical ability to support any of his previous statements regarding quality of life, or responses to your questions.

I am sorry for the rapid decline but believe you can resolve your core questions.He is still the person he was "inside" and with thought, that can guide your decisions.
 
Steviesearching, you have some great responses here. I just want to commend you on your love and your willingness to help!. Know that your mother and he are both reeling from this rapid change and your mom needs support too. Every single ALS person is different and some have similarities. It really is one day at a time and please get help for communication devices, your local ALS association can be a great resource for suggestions and loans of equipment.

Sherry
 
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