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Mando015

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Hi Everyone. My boyfriend's mother has ALS. He has handled well accordingly to the circumstances until recently as her progression has gotten to a scary point. She has a feeding tube, lots of mucus, and she can no longer talk clearly. I feel horrible for him and his family and I often have no idea what to say. My question for you all is did anyone say anything to you that you remember that was helpful or encouraging if that's even possible? Did someone do anything for you that was helpful in the final year? Maybe there is nothing I can do to help, but I'd love advice from people who know what he is going through.

Thank you in advance.
 
Just be there.
 
Certainly being there is most important. But there are a million practical things you can do. Are you able to drive? Errands are constantly needed. Who is in the household? Can you cook for the family? Can you spend time with his mom? Maybe do some girl things for her like nails or putting on lotion? If speaking is an issue does she need help to make phone calls for appointments business etc? My sister always wants help sorting and organizing things.
Are there children in the household? Rides to activities are huge. Also if there is a young girl take her shopping. It depends on the family but at any age there are plenty of things to do to help
 
There is nothing much to say. Avoid false reassurances that thing will be ok. Just be there and provide any practical assistance such as running errands or doing some housework. Ask first but be specific. Not "What can I do to help?" but "Would it be ok if I vacuumed/weeded the garden/washed the windows?" When with his mother be aware that trying to talk and be social is exhausting for her. Don't feel you need to chatter on to fill the silence. Just tell her a little about interesting things you and her son have done and then excuse yourself.
 
Diane & Nikki - so helpful, thank you very much for your responses. These are things I will practice when I am with them next.
 
I agree here - there is nothing you can say to help. There are many things you can do to help however.

Those practical things like go shopping, run errands, some washing, house cleaning or gardening are an amazing help but try and find the thing that is most needed and that will help most, even if it's not your top idea of the way to help.

Caregivers are exhausted and are juggling so many things. So be specific, make firm offers and most importantly - be reliable. Do not arrange to do something and then change plans at the last minute. You wouldn't understand how devastating that can be for her carer.
 
After two of my friends and my Mom, as well as other family, I second Diane's thought about being social taking a lot of energy out of your PALS. One of my friends told me months before he passed that he only had energy to give to his family. His sphere grew quite small towards the end but by his choice. Being aware of that is important even if it doesn't look like you're "doing" much.

"Caregivers are exhausted and are juggling so many things."

What Tillie said reminds me of a couple things. Being there is important and there truly is nothing you can say. And if your relationship with her is not very close and personal it may be hard now with the disease in the way. My wife is caregiving for her Mom right now (94, heart failure plus, hospice) and "just" the two days per week she does she really IS exhausted. My relationship with her Mom is not all that close but I have learned that the best I can do for her Mom is to do my best giving care to my wife. I know, it's different for guys and sons... but helping the carers as well as the PALS can be important.
 
What I've witnessed while staying with my parents the last few weeks is the neighbors all came running out when they saw him riding down the road. Many stop by with little treats or to see if he's up to a visit. I think a lot of people back off in fear especially as PALS deteriorate. It has amazed me that these people care so much and have continued to stay in touch. Even the pharmacist told me tonight she was thinking of him a lot lately.
 
After two of my friends and my Mom, as well as other family, I second Diane's thought about being social taking a lot of energy out of your PALS. One of my friends told me months before he passed that he only had energy to give to his family. His sphere grew quite small towards the end but by his choice. Being aware of that is important even if it doesn't look like you're "doing" much.

"Caregivers are exhausted and are juggling so many things."

.



Totally agree no doubt. I had a very sociable weekend, and I am struggling to speak today.

I have one friend in particular who's visits I really like. I am usually on the back deck outside the house, he walks out and get me a drink and a snack and starts talking. He carries 95% of the conversation. I kick back looking at the view, or sometimes have my eyes close. He knows that even enthusiastic listening is tiring for me. Even just Making contact can be exhausting.
 
"I kick back looking at the view,"

I remember driving over Alabama Hill, with the snow capped mountain in my rear view mirror and the Pacific Ocean in front of me. Beautiful place. I also miss being able to go to Haggan's 24/7. But most of all, I miss sailing in the bay.
--Mike
 
"I kick back looking at the view,"

I remember driving over Alabama Hill, with the snow capped mountain in my rear view mirror and the Pacific Ocean in front of me. Beautiful place. I also miss being able to go to Haggan's 24/7. But most of all, I miss sailing in the bay.
--Mike

Gazing out at the view right now, Mike. We have a guest room with full bath with your name on the reservation list. :)
 
Ha, small world... lived in B'ham for 10 years between '68 and '80, on Alabama for part of it, and ran up that hill more times than I can count. Can't run anymore but I had a dream about running that hill a couple of weeks ago...

T. you are blessed to have a friend close enough to spend that energy with. My experiences have seen PALS withdraw into their families. Different for everyone.
 
Bill, thanks for sharing that. I thought maybe it was me. I have some very dear friends whom I couldn't cope emotionally without, but more often than not I find myself cancelling on them. I like the solitude of my house. I don't really like to entertain them here, because then I feel that I have to do just that...entertain.

I agree with Mike. Just be there. Don't judge, we all handle things differently. My progression is handled so much better by my kids than Wayne. But I don't judge him for that. He's here when I need him, so it's all good.

All the best, and thank you for being concerned enough about your boyfriend to look into it. A testament to your relationship.

God bless, Janelle x
 
Thank you everyone who shared with me your thoughts and ideas. Everything you said makes so much sense although I hadn't thought of it initially so I appreciate it.
 
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