How can family members be helpful?

[galynn]

I am new here. I am a psychologist who has been working for awhile now with a family affected by ALS. The person who has ALS is in the final days, and extended family members are struggling with how to be helpful to the immediate family and the ALS patient. Sometimes I feel at a loss about how to be helpful, so I can only imagine how the family and extended family members feel. Would any of you be willing to share with me what you have found to be most helpful as you coped with ALS? Thank you so much.

 

[j5rj5r]

As a caregiver I can tell you what helps me the most. My sister took a calender and put what times she could come and help for a month. One of my daughters schedules for a week in advance. The rest are unable to comit to a schedule. The more people you have that can schedule a time they can help the better. You know what to expect with a schedule. Otherwise you wind up w/ too many people at one time or no help at all.

 

[hopingforthebest]

Any form of help is a blessing!

I have to work 3 full days a week and leave my husband. My sister-in-law came (75 mile drive) last week. Brought lunch, fed George, cleaned my kitchen, folded my laundry and filled my frig with fresh veggies and fruits and on my door step was the most beautiful potted plant to greet me when I came home from work. I cried with joy!

Anything you can do "without" having to ask us is wonderful! A blessing and we are so grateful beyond words.

Hope this helped.


Patty

 

[kelly]

Oh my gosh...this is a good one!
I totally agree about, not having to ask for things to be done. My girlfriends came over one day and cleaned my house while we were at a Doctors appointment. I can't even tell you what a treat that was. Also, a group of friends filled our freezer with healthy ready to cook meals.....so appreciated. My mom just moved near and takes my children over night once a week. Anytime people offer to help with the kiddos, it is appreciated. I want them to have a "normal" and fun summer. Ok..the list goes on. People have offered to stay with my husband while I take time to myself (yeah right)! My husband is not ready for that and I have to respect his feelings on this matter. Oh yeah...my neighbors pitched in and hired a lawn service for the summer. In the winter the neighbors took turns shoveling and plowing our walks. As I write all these things, it reminds me how blessed we are in a very difficult situation. Hope some of these ideas help. KR

 

[galynn]

All of these ideas are wonderful. I hope this thead continues. It may be helpful to more people than just me. Thank you SO much!

 

[brooksea]

I don't know if the family of the PALS you work with has any children, but if they do, making arrangements to take them somewhere special would be great.

The things "normal" people take for granted become mountainous tasks for PALS and their families. Having someone do chores or run errands, as others have mentioned would be welcomed I'm sure.

Something special for the caregiver (husband, wife, sister, etc...) to pamper themselves and give them a break at the same time would also provide a little "me" time for that person.

 

[sharonca]

I agree with CJ - offering to pick up or take a child somewhere is very helpful. If the PALS need attention and the CALS cannot leave - having someone to do a pick up from school or a sporting event is invaluable.

Sharonca

 

[CindyM]

We ran a thread like this awhile back and someone said it would be great if folks dropped off homemade meals. Especially, growing families need a decent meal now and then.

Someone else said it would be nice if people would drop by to visit with the PAL. Just having someone to read to the PAL, or sit by peacefully, is very helpful, I heard.

 

[gimpydad'slady]

I agree with Cindy on the visits. Visits are so important to my hubby. The more limited mobility our pals have, the less they get out. I know for my hubby, it makes his day when people come around and visit.