MY ACHING BACK!

Once again I took a fall. This time it wasn't minimal. I broke my back. Yep...a compression fracture of L-3. When I do something, I do it really well! Needless to say, we have had to scramble to find help for Jamey.

Since he is now in the next stage of the disease, incontinence, we have had to hire people other than friends or family to help. Though it took a while and I was in a tither the first week after I got home from the hospital, people stepped up royally and we finally have most of our shifts covered. I will likely keep people on after I have healed, because the job has become more difficult for one who will always have back pain.

In order to keep you all from re-inventing the wheel, I'd like to share what I have learned about using a caregiver other than yourself.

MAKE LISTS
Right now, before a crisis, write down everything you do to help your Loved One. Things like lifting him out of bed and toileting. But even list the little things like, showering, shaving, making meals, cleaning up after meals, laundry, etc. Keep in mind your Loved One's ADLS (Activities of Daily Living) that they can or cannot do and be sure to account for those.

On another list, put down all your friend and family members who are able to assist you with even small items. Go down both lists and match up your friends and family members with the chores for which they are gifted or able to do best. For instance, my youngest daughter lives about 3 hours away. Even though she'd like to help with the every day jobs, she isn't able to because of distance. When we needed additional help, We set up an ad to hire caregivers. My daughter was able to take the responses from that ad and ask important questions to narrow down the many resumes. This would have taken me a great deal of time and energy (something I didn't have with my pain level). She was able to give me a much smaller list of candidates, and she was a valuable part of the team. My oldest daughter who lives close by, was happy to hand off that task to the younger daughter!

For the jobs that aren't appropriate for a friend or family member (things like toileting and bathing), move those to a new list for in-home caregivers. Think about when those things are needed. I know that's a difficult thing with PD; it varies from day to day or for that matter, hour to hour. Do your best. In our case toileting is an issue, but so is bedtime. I cannot lift, bend or twist while my back is healing, so getting my husband into bed is impossible without doing one or more of those things. Right off the bat, I knew I was going to need someone to come in between 10PM and 11PM to do that for me.

Other than what a professional caregiver can provide, continue to add to your list as things come up. Keep the list with you. When someone asks you what they can do to help, pull out your list. Don't be afraid or embarrassed. They asked--let them help!

Once your caregiver list is complete you can start asking friends of friends for names of caregivers. In my opinion, word of mouth is the best background check; it's free and dependable. Or you can seek out an organization that provides caregivers. (More about that below).

IN-HOME CAREGIVER RESOURCES
I have a mix of independent caregivers and caregivers who are provided by an organization. Here are some pros and cons of both.
Be sure and ask your Loved One if he/she has a preference in age or gender of his/her caregiver. Remember, they are used to you. It will be a difficult change for them. Try and be supportive. Make it as easy as possible.

Pros for Independents:

• Often able to charge less because they receive all of the money. 
• Often able to work a shorter minimum shift (1 to 2 hours)
• Often able to be more flexible
• They don't need to check into the office when they arrive at your home

Pros for Organizations:

• Receipt for tax purposes
• Background check is done
• Insurance is provided
• If you have a complaint you needn't talk directly to the caregiver
• If someone has to call in sick, they will send another caregiver

Cons for Independents:

• Rarely carry their own insurance (your homeowner's needs to cover)
• Won't write a receipt unless you ask (be careful about paying cash; while it's not your   business whether they claim their income, they need to know you will be writing off     this as a medical expense so they can be audited)
• If you have issues with them, you have to deal with them directly
• If they are sick, you will be without care that day
• Necessary to pay out a 1099 at end of year (have them fill out a W-9 before working)
• If you pay them more than $2000 you will need to take out their taxes for them and keep track of all other legalities.

Cons for Organizations:

• Often a minimum shift of 4 hours
• Pricing is high and caregiver gets less than half of the money
• Often have to wait a long time for them to get back to you when you request a caregiver
• If you cancel less than 24 hours, you still pay (This is actually a good rule, even for an independent. It protects them from losing money when you have a change of circumstance. I always pay my independents if I have to cancel in less than 24 hours. There isn't any way they can find a replacement job in that time).
• You will have to meet, perhaps multiple times, with the Supervisor and each caregiver you hire (depending on how you look at it, this might be a pro)

Some Reputable Organizations:

Home Instead

Visiting Angels

Right at Home

Comfort Keepers

Some Reputable Independent Sources

www.care.com

www.caring.com

Be advised, it is difficult to fill a 1 or 2 hour night shift. My husband has to go to bed an hour early to accommodate the help we have. Our situation is only temporary, however, we might have to do this from now on. In that case, his circadian rhythm may need changing.

Note: Since I am home during the times the caregiver is here, it was not as important to me to have a background check done. The caregiver will not be as able to take advantage or abuse my Loved One. However, if you would feel more comfortable to have a background check done, it is well worth the money for your peace of mind.

KEEP YOUR FREEZER FULL
When someone offers to bring a meal, but you already have one for the night, accept it graciously and put it in the freezer. If your freezer stays full you will have plenty of meals to fall back on when you're having a bad day. And you will have days when you don't have the energy to prepare a meal. Whether or not you eat, you need to feed your loved one a balanced and healthy meal.

USE YOUR CAREGIVERS!
Make up checklists for your caregivers so they have things to keep them busy. Time drags when you don't have something to do. With Parkinson's (and other diseases) you are not always busy constantly. If you have a checklist for Daily things as well as Weekly items, they can do things in between helping with your Loved One. Plan ahead and have meals ready to prepare. I have found that most caregivers love to cook, so give them a recipe and have them prepare your meals, either for that night, or for freezing. Crock pot meals are great because all you have to do is drop the prepared food in, turn it on and you'll have a hot dinner in a couple hours.

Let them do laundry and light housework. I have my Wednesday lady, take the garbage out to the curb for me because I cannot do it the night before (we have wild critters here that shred the bags and make it counter productive). ;) Today, I had one of my caregivers spot clean the carpet because I cannot get down on the floor right now. It looks great and makes me happy! She's happy because she didn't have to sit idle all day long.

SIGNS
Make up signs to hang over the washer, dryer, microwave and oven, telling how to use the machines. This will keep caregivers from making costly mistakes like putting laundry soap into the bleach receptacle (ask me how I know this) haha. Writing up the process for when the garbage should go out, whether you recycle, when groceries need to be purchased (or when they are delivered), etc., can make your job much easier as well. It's like managing an office. You need to train and delegate. If you don't do your job, they can't do theirs.

I'm sure I'll think of something more to add after I post this. But for now, these are the main things I've experienced since I broke my back. I hope this helps you navigate.

I have only one more question...
Which one of you daughters stepped on the crack?!