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Admirer

New member
Joined
Jul 4, 2017
Messages
1
Reason
Friend was DX
Diagnosis
12/2015
Country
US
State
Nj
Hello. Im writing here bc our dear friend is in his 2nd year post bulbar als diagnosis. His condition is deteriorating - does it matter if it is rapid or slow ? Either way is horrific for him and his family. He is physically "able" but has lost his ability to speak and eat. He has a feeding tube. He communicates with a text app and a text to voice app. Fortunatley he has maintained mobility in his hands/fingers. He his wife and their son are the "goodest" people I've ever known. I ventured into this site in the hopes of understanding even a Tiny bit of what they endure every day and how my family can be supportive without being a drain or making them feel as though they need to appreciate or expend energy on us. I know that everyday is a struggle. And yet- he, his wife and son manage to find joy in the tiniest of moments. Anyway - we want them to know that we will be th re to support them all in whatever capacity they need without being over bearing or tiring for them. What can we do and Say in the coming months and years to not only let them know that we care and will support them but also show them? Is dropping meals at their home for her and their son helpful or intrusive? We've offered to have their son spend weekend with us (our sons are friends) but I also realize that they want to have precious time together while he is mobile and physically "able". Is asking to make plans to be with them supportive or a burden? Please let me know any suggestions. I don't want them to feel alone - but I also realize that they must be ultimately - bc who could fathom what they face? They are private people - and we want to find a balance between respecting their privacy and letting them feel just a little bit less alone in this struggle .... thanks in advance for your insights. Wanting to be a true friend.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
I can't answer for everyone. Just us. We had some amazing friends. Friends that visited with us ..laughed with us and even cried with us. Yes. They would bring meals. They plowed our driveway. They did things we wouldn't have thought to ask them to do. They just did it. Anything that helps either the pals or cals is a help. Mostly they loved us. And treated us with such compassion but not pity. It was " we are in this together". It's an attitude ....and it's love.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,547
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
It awesome that you want to be a true friend. My husband was dx'd about the same time as your friend with the same type.

I think dropping meals is awesome. My brother in-law takes care of our lawn which is a huge help. Picking up groceries is also helpful. I have a hard time seeing things in advance and telling someone I need help with it. I told my brother in-law that so he comes every three days and mows or at least checks to see if it needs to be done.

One thing that tends to happen is that friends that are willing to help tend to disappear after a while so you being in for the long haul would be awesome.

I am sure they really appreciate you being a good friend.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
552
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
One of the best things you can do is simply include them. Ask them to join you in activities. My husband's attitude is much better when he is around other people. Don't be offended if they decline sometimes. It just may not work out that particular day. But ask them again next time. It means so much not to be forgotten.

Another thing is to visit. And treat them like the friends they were before diagnosis. One neighbor of ours stops by every weekend. This has been one of the best things for my husband. They never have any real plan. Sometimes they watch TV. Other times, they have a beer and talk. Again, it's just not being forgotten.

It may be hard at first, to see someone you have known decline physically. But he is mentally the same person. People who come around see that. Then things become more comfortable.

My husband often becomes bored, because there are not many things he can do on his own. Just having someone who checks in on him from time to time, no matter what they do has been a true god-send. Reach out - you will find a way to connect with them. God Bless you for being a friend.
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
A caring friend in it for the long haul is a incredible blessing! Dropping by a meal every so often (particularly one that can be frozen if something else is planned) is a great way to help. Also, when you're planning to go shopping, calling them ahead so they can text you a list is something I so wish someone would do for me. Invite their son for time with your own son! That's part of normal childhood, which is so often what PALS and CALS want to maintain for their children. They can always say "no," but ask them if another time works better. That can give you a feel for whether it's a welcomed invitation but just an inconvenient time, and you can go from there.

You said they are private people, but you may want to offer to coordinate volunteers on Lotsahelpinghands for them. They just tell you what they need and when, then friends and family members who have volunteered to help out can sign up to meet that need.

Best wishes to you and your friends. Please stay with it...this disease can get pretty lonely.
 

Dave K

Distinguished member
Joined
Jul 13, 2015
Messages
196
Reason
Other
Country
us
State
.
First of all, friends like you are AWESOME!

Anything you do to help--even the smallest thing--is 100 times more helpful than you can imagine. Making meals, watering plants, walking pets, organizing bills, changing light bulbs, shaking out rugs, dusting shelves, or just holding hands. It is all kindness that is magnified 1,000 times when given to an ALS family.

Regular, planned visits are best. ALS people have regular daily meal, bathing, dressing routines that take a long time, so it gives them comfort to have visits from friends on a planned schedule.

In the end, just being there for them is the most important. Even in the final stages, when you may wonder what you can possibly do to help, and your friend can no longer physically smile, they will absolutely be smiling on the inside when you tell them about your day, your family, and your hopes and dreams. They will be forever grateful to have such a wonderful friend.
 

DigPlantWeed

Member
Joined
Nov 12, 2012
Messages
22
Reason
Friend was DX
Country
US
State
MD
It's wonderful that you want to be a friend to a PALS.

Our PALS friend was 1500 miles away, and we couldn't not visit as much as we wanted. But we learned that all contact -- phone, Facetime, text, Facebook, was appreciated. And when we could visit, we did errands, grocery, shopping, meal prep/carry-out.

Some friends disappear because the don't know what to say or do. Being there any way you can will be a huge comfort. And talking about "regular" stuff and not just the illness is a help also. Sometimes 'How 'bout those Lakers?" is better than "How are you doing?"
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
Groceries and lawn care is huge. If you are close and can do laundry, or assist with showers that is very helpful. Making meals that can go in the freezer and be popped in the oven is a great thing. Those all help the cals.

For the pals, my husband just wanted company. Friends would come from out of town and they would put a ballgame on. This gave time and space to me and my husband really enjoyed it. Can you take him out for a day? A drive in a park, seeing a game in person, a museum....whatever he enjoys.

Lastly, I would suggest being available for the kids, particularly the son that you know. They need a place to vent that is safe. It is very difficult to hear tho
 

KW1234

Distinguished member
Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
Things friends have done for us that we really appreciate:

1. I have a list of people that I call my ride buddies. I send out a monthly schedule of appointments and they volunteer to drive me. I have pt weekly.

2. I have a crew of sewing buddies that are available to mend or alter clothing, or shorten curtains.

3. We have a good friend that is building the rails for our deck.

4. Another good friend came to install three light fixtures.

5. I am tube feeding now but my husband tends to grill proteins and eat premade salads from the local organic grocery. He is losing weight which is not good he is pretty thin, so I am trying to get him to buy more healthy carbs. I used to make cookies, pies and other awesome meals which he is missing. Taking care of the CALS is something PALS appreciate.

6. Helping with deliveries. I tend to do my shopping on amazon and simply helping to get boxes inside, opened and put away is very helpful.

7. Help with mail. I can no longer write but like to send thank you cards to my supporters. Spending some time to do this is very much appreciated. Also just sorting the mail from the junk mail and opening envelopes is helpful.

8. I keep a running blog on caring bridge. When i noted we needed something we were blessed by donations of like a lawn mower and help with un packing.

9. Several times we have had friends come by and prepare dinner and eat with us. It is great to see them.

10. Friends from the company I worked at are doing a fundraiser to cover the cost of a wheelchair accessible van.

Most importantly those of us with ALS want to hear what you are doing. We want to feel connected and aware. We grow weary of talking abour ALS and why it sucks to have this crazy disease.
 
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