Sunday, June 22, 2008

Get Strong Today!

Do not wait as long as I did!!! Find 45 minutes a day and get to Curves® if you are a woman or the YMCA if you are a man. There are lots of things you can do at home, but it is my opinion that you need a program, the equipment and the coaching to give you muscle strength quickly. Both Curves and the Y fit the bill. If your PALS is still reasonably self-sufficient (they can manage by themselves for 45 -60 minutes) get signed up and get going - every day. If necessary, get someone to stay with them for an hour. Whatever it will absolutely, positively need muscle strength to manage your PALS as they lose muscle capability. When you say "I've got you....don't worry"...make sure you've got a muscle (or three) to back it up!

Ask for help / receive offers for help graciously.

We are not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!

Now is the time to turn to friends and family – you have to let them in - to share the load. If you can figure this out, the road will be a lot less bumpy and considerably more meaningful for you and your circle of loved ones.

I personally believe it is particularly critical while your PALS is still mobile to get people to take him/her out, for a period of time so that your PALS is safe and entertained. They get a change of scenery, you get some time to yourself, even if it's to take care of chores and (bonus!) you have something different to talk about besides ALS! This will get harder as your PALS loses mobility, but it's not impossible. You may have to do some negotiating as the disease advances. It helps to have friends who have been caregivers!

I always had a backpack stocked (think diaper bag!) and several friends learned how to feed and water him so that he could remain independent and interesting. Bill was really great about going out for up to 3 hours, which was about the maximum capacity of his bladder. He didn't want anyone to help him transfer in the bathroom but me. Again...I totally realize now how fortunate I was that he was willing to let people be that intimate with him!

Here are some less intimate options for when someone says “I want to help, what can I do?”

  • Ask them to cook a meal and make enough for left-overs.
  • Have them talk to you as they unload your dishwasher so that you can sit still for 5 minutes and watch them do it.
  • Have them arrange for a neighborhood rotation to rake leaves, mow the lawn, trim the roses, etc. Have your PALS supervise the effort.
  • Help you (organize a weekly blitz to) change the beds, vacuum, mop, clean the toilets, etc.
  • Hand them a shopping list (be specific about brands you prefer!) and your debit card and ask them to go to the grocery store. Even better, take your PALS with them so he/she can help with brand decisions! If your PALS is not in a motorized wheelchair, they can use the motorized carts in the store. They don't have to hurry!!!! Use the time to get a shower, meditate or read.
  • Sit still in a chair, on your hands if necessary, and coach them on where things go in the pantry when they get back with the groceries.
    Hand them your bag of dry cleaning and ask them to take care of it the next time they run their errands.
  • Ask them to pick up a box of haircolor and a bottle of wine. Set your PALS up with a 90 minute movie and ask them to help you color your hair!
  • If you go to the grocery store, and the courtesy clerk asks "would you like help", the only answer is "yes please"!!!!
  • Ask the kids in the neighborhood to help decorate your porch for the holidays. It may not be perfect, but it will get done, they'll have a ball and who might like it better. I often had Bill "supervise" these projects. The kids loved it!
  • Consider doing you holiday shopping online and then having friends help you wrap everything. Again...send your PALS shopping with friends and a list.

There are millions of little opportunities! Be creative and allow your friends the ultimate gift of helping you. You aren't a burden! Please consider would be sorely offended if you offered help and they turned you down, if the circumstances were reversed.

Family...a new definition

Family isn’t just about biology. Family and friends come in all sizes, shapes, colors, skill sets, dispositions, geographical locations, and more. To list my “family”, would require a very long list! I thank my lucky stars for all of the everyday angels God has sent my way….you all know who you are!!! Please know that you have my humblest thanks for all that you have done for Bill and me, and continue to do for many others…every day. I would like to publicy thank the ALS clinic and the Memory & Aging teams at UCSF for their friendship, skill and their (collective!) outstanding bedside manner. The Kaiser Permanente angels include Will North, David Fields, Carolyn & Fran, Danijela, Jolene, Anita and Emmy.

It pays to get your legal/financial house in order and the peace of mind is worth every dime you invest. Thank you Steven & Joelle, and Henry & Jean.

Some days it’s an effort to get out of bed, put one foot in front of the other and just get on with the business of “getting on”. Terri, Janey, Phil, Chris, Teri, Tom, Patti, Sherri, Diane, Howard, Flo, Michelle, Tom, Nancy, Matt, and Julia are just a few of the angels who daily came to lift us up and carry us through the day.

If you’re lucky, you have friends who just seem to know what you need, when you need it and aren’t afraid to step in when it’s not so easy to do just that. I have been truly blessed by your friendship, humor and grace.