Advice for friends and family
 

I was thinking about what advice I would give someone who said to me, "My loved one has a chronic illness...any advice?"

I thought of a couple things so far:

1. Yes, tell me that I can call you anytime if I need something in town because you go three times a week...but ALSO give me a buzz once in a while and say "Need anything at Price Chopper? I'm going right by your house." Even though I know you're sincere about "anytime", I still hate to call and ask.

2. I know you're confused when I say "Don't keep inviting me when you know I can't go" and then I say "Why don't you invite me anymore?" I'm confused, too! A good approach is "Just wanted to let you know you're welcome to come if you're having a good day, but we'll understand if you decline or even cancel at the last minute."

Come sit and watch a movie with me, or stare out the window. We dont always have to do something on the go go go.

Keep me in your prayers. Knowing that others are saying my name in their prayers comforts me.

Pay attention when we talk. Dont assume I am like every other friend who is strong healthy and able. When I say I am so tired of the mess in this house, I would not be offended if 3 of you showed up to give me a house cleaning day or maybe if someone did my nails since I cant see my toes.

Everyone is so different. For me, don't want my nails painted. Never did it my self, don't want anyone else to do it. When DD was little, going to get nails done was a big adventure. I don't want flames on my wheelchair (I am not 5, this is not my tricycle) - line stolen from Mitch). Cookies, cookies are always good!!! (well, not too many)

oh I NEVER paint my nails! folks used to be so upset because my nails grow fast, long and strong, and there I would sit hacking them all off down to the quick. I wore medical gloves most of my adult life and the sharp nails poked right thru the end. So, by "do my nails" I meant clip my toes! Im blind now, cant see um. I also cant reach um! When I go for a pedicure I never get polish then either. They keep recommending clear, and I keep saying NO! just clean up the toes, and let me go.

Scratch my back! better yet offer to put lotion on it! I cant reach it anymore!

walk my dog. scratch my cat. play chase the feather with the cat as it takes too much energy for me some days.

offer to go thru and sort my junk mail from my real mail. I have a HUGE amount of junk coming to this house. L.Ron Hubbard to the WatchTower over flows in this place. occasionally you will find a bill that needs to be handled, but most of its junk that needs to be shredded. Do that for me!

I love that some of my fake friends stopped coming. it was exhausting to sit and think up new things to say. I got tired of keeping up the game.

Let her/him know that you are there for them.

And ask "what do you want me to do for you", not just pushing what you think they should want or need.

Don't ignore them or forget about them, just because they can't swing with you like they used too.

Keep them in your life, include them in your plans. Understand when they say "I can't do it" but keep asking.

It feels good to know that you are loved, missed and needed.

Of course for me it always comes back to the finances. :o

For spouses please consider your role in supporting the family should your partner's ability to work be hindered in the future. Seeing the writing on the wall and making necessary adjustments to line things up in a proactive way before you are forced in a corner is crucial, imo.

For example: it stinks if you have always dreamed of being a stay at home Mom and now your husband has been diagnosed with MS but this is the time to assess your future earning potential. Perhaps start taking classes so you have the ability to become the family breadwinner if needed?

I will never be "financially wealthy" especially now with this miserable disease but I should be able to remain comfortable if I continue to live simply, knock wood. Having MS is bad enough without having to worry about how you are going to pay your bills or hire someone to help you if necessary.