Recent content by kitkat

I am so sorry for your loss. I wish you peace and love for the days ahead.

My darling husband, Steve, peacefully passed away on August 26th. He was surrounded by our seven grandchildren, our son and his wife, and myself. It was such a peaceful passing! I cried my eyes out no only because he was gone, but also because he was flying free - no more pain, or air hunger...

My husband flies free as of 8/26/19. He was surrounded by our 7 grandchildren, our son and his wife, and myself. He is free!

My husband sleeps on a hospital bed we received from the ALSA loan pool here in Minnesota. It has an air pump for alternating pressure. For his comfort, I purchased a very good 3" Serta mattress topper, which I got on sale for 1/2 price plus 30% coupon:). My PALS loves the topper & is very...

My PALS also has problems with cramping and fasciculations. I have several of those packs that contains seeds or something, that you can put in the microwave. I put them on his legs, or wherever he is having problems. The warmth definitely helps calm things down so he can get some sleep. I...

A sad welcome to you Stacy. You have come to the right place for support and understanding. You are not alone. I have found this forum to be a blessing. So much love and understanding. Our ALS loan pool has been very generous with anything we need for my husband. I have noticed some of the...

Thinking of you both and sending hugs. Kathy

Thank you for all the good, heartfelt advice. His hospital bed is in our room, and that is where he will pass, surrounded by love. A couple of our friends can't understand why I am "letting him" stay home & eventually pass here. Won't it bother me to be in the same room after he is gone?? I...

My PALS finally received his PWC a couple weeks ago. He should have received it almost a year ago, but miscommunications & ball dropping happened. It is set up with a head array so he can drive it, and a joystick in the back so I can drive it. Unfortunately, his neck has gotten so weak, he is...

I would love if his aid would give him a shower, but, Steve does not want that - modesty?? And, he will only poop if I am there to clean him up. Yay. It's enough for him that they help him pee. But I get it, I would probably be reluctant to have an aid get that personal. He has an aid with him...

I am so exhausted. We have home health aids taking care of my PALS on weekdays as I still work full time. He has no use of his arms & legs. I get home about 5:15, just in time to help Steve use his urinal. Then I use the lift to get him out of his hospital bed & transfer him to his wheelchair so...

If he is in a hospital bed, try raising the whole bed before you put on or remove the sling. I have found this helps protect my back, since I don't have to bend over so far to get the sling in place.

Be sure to check ALS Association Greater New York | New Jersey | Long Island | Hudson Valley for a chapter in your area. They have loan pools for equipment. We have received my PAL's hospital bed, Hoyer Lift, shower chair and wheelchair from them at no cost. They also provide monthly support...

We are taking a trip to Ireland, from Minnesota. I've read one of your posts about flying, but still have a couple questions. My PALS has no use of his arms or hands, and his legs are getting very weak. We'll be bringing his collapsible wheelchair on the trip. Once on the plane, he probably...

Steve was diagnosed January 2016. I still work fulltime. We have managed to make things work up until now. I would help him dress and eat before I left for work. If I was not going to be able to go home for lunch, I would leave a cut up sandwich & snacks between paper plates with a small...