About to visit sister-in-law with end stage ALS

[Petestwin]

This is my first post here but I have been studying ALS since my twin brother's wife was diagnosed less than 2 years ago. They are on the east coast and I am on the west so last time I visited was last Aug. At that time she was paralyzed in the legs only. Now she is from the neck down and on the breathing machine a lot - still I good spirits, able to talk and eat. I am going to help give my twin some caregiver relief and am looking for any tips from you out there with regard to what to expect , what's the best way for me to "be" with her. I am a massage therapist and am hoping to give her massages, but want to make sure I say/do the right things for her. I recently watched "I'm still breathing"- a beautiful film. Any feedback is greatly appreciated. I leave on July 20.

 

[vickim]

Just be yourself, talk to her like you did before she was diagnosed. I am sure the massages will be appreciated. She is still the same person on the inside. Ask her what she needs and I am sure your brother will give you instructions. Just enjoy your time with them.

 

[cervus]

Respect her as always. Massages are great and if you can offer assistance with Range of Motion exercises, that would be great too! It's wonderful that you're there for your brother and sister-in-law. Your brother might need help around the house too! Enjoy your time together. Yasmin.

 

[designdiva]

Hi Petestwin, I am sure they will both be very appreciative of your help, having an extra set of hands around and fresh conversation makes a world of difference. I agree with what the others have said, just remember that regardless of what she looks like or what equipment she has that she is still the same person on the inside. Try to tell her about things you would have discussed with her before. I'm sure your brother will fill you in on routine quickly enough so you'll get the hang of it. And I couldn't agree more to offer help around the house if possible, even if it is just doing dishes or fixing dinner a time or two, it is such a relief for a caregiver to get a little break from having so much on their shoulders everyday and those little things make a huge difference. Good luck and enjoy your visit! You should check back in and let us know how it goes

 

[Nighthawk]

@cervus:

You beat me to it.
After reading that post I was going to suggest the same as you did but, you read my mind.

 

[Barbie]

Wow, what a wonderful thing to go visit and want to do the "right" thing. Your massages will be so good for her, just ask her what feels good for her. I bet your brother could use one too . he is probably very tired so if you can help around the house with repairs, cleaning, shopping what ever is needed --that is Great.

 

[Petestwin]

Thank you. Just told him I want to cook. He said great - just make it soft foods.

 

[Petestwin]

Thank you everyone for your responses . I will let you know how it goes .
She is not her disease , she is still my funny, loving sister-in-law.

 

[Nikki J]

Hope you can enjoy your time together. When you cook if they have room in their freezer cook double batches so they can have easy meals after you return home. And massage and gentle range of motion will be much appreciated I am sure

Have a safe trip!
Nikki

 

[celticgirl]

I'm sure your sister in law would love massages, just talk to her like you always did, she's still the same person on the inside, a laugh and a joke works wonders as well just you being there will be a boost to them both, offer to run errands, clean or cook, your brother would benefit from a wee break and both will just enjoy you being there, Anne

 

[Petestwin]

Great idea about the double batches !

 

[Petestwin]

Yes thanks. She does have a good sense of humor and we can poke fun at my bro and giggle

 

[skipper66]

What a wonderful sister to be willing to help your brother and sister-in-law. Hope you have a nice visit. People like you are a true blessing. Kim