Tuesday, December 15, 2009

A Glimpse Into The World Of A Primary Caregiver

Well, that’s probably a weird title. I can’t think of anything else. If you are the friends or family of a caregiver, I’m going to give you a few tips of ways you can help your loved one who is the primary caregiver. I am writing this with little sleep and too much coffee in my system, which, by the way, makes me feel like I‘m wide-awake-exhausted. So, let’s just jump right in:

* Visits ~ First and very, very foremost. Do not ever, ever visit the caregiver’s home unannounced. Unless you have a million dollar check in your hand, telling them they’re the big winner, please give them a good day or two notice before you visit them. There’s nothing worse for a caregiver than to be in your pajamas, wearing no makeup and your hair looks like two squirrels have been fighting in it when you suddenly hear a knock on the door. What’s worse than that? When the caregiver fits the description above, and they’re right in the middle of changing a diaper. Not a cute little baby’s diaper mind you, but the diaper of someone whose BM weight is far more than their birth weight when they were born. Sorry for the visual, but sometimes it needs to be said. Imagine the terror of that situation if you were in the caregiver’s shoes.

* Phone Calls ~ If you call the caregiver and they don’t return your call, don’t be offended. It’s not that we don’t like you or don’t want to talk to you, it’s just difficult to talk and feed someone at the same time or talk and change a diaper at the same time, or talk and give someone a bath at the same time. I know this, because I’ve talked on the phone and done those things at the same time. It takes skill and practice, but I don’t enjoy having to balance it -- At all. And usually, when the caregiver finally has a moment to rest, we don’t want to spend that moment on the phone, especially on the phone listening to a friend or family member complain about a trivial matter when we are in a deep, dark hole and would love to have your problems. Put yourself in their shoes before you complain about missing your manicure appointment because you had to take your child to football practice or band practice. You will not get the sympathy you’re seeking.

* Parties ~ Do not be offended if your caregiver friend never attends the parties you invite them to. Again, it isn’t that we don’t like you or don’t want to see you. Most of us are “primary” caregivers, meaning, we are in charge of caring for our disabled loved one. Most of us do not get “time off” … ever. Finding a decent respite provider is like finding a pot of gold at the end of the rainbow. On the rare occasion we do get a break, many of us want to be alone or alone with our spouse. I do, anyway. Put yourself in their shoes. Imagine never, ever leaving the house unless it’s to a doctor’s appointment or something equally as stressful. Sometimes, you’d just want to be in a quiet, peaceful place … alone to gather your thoughts. If your caregiver friend doesn’t have a respite provider, you might suggest they bring the person they care for, if that person isn’t confined to the bed. That’s a nice gesture, but you should imagine how stressful that would be on the caregiver. I have taken Stephen to parties, but only when we know every person there. That’s just us - this may vary per situation. Stephen does well when meeting strangers, we’re fortunate that he’s sociable (we’re extra protective, too). But even so, it’s difficult for me if he has an “accident” and we have to ask the hostess where we can go for privacy to change him. It’s also stressful even using a bathroom he isn’t used to. I can’t explain why that is - it’s just stressful. If Stephen attends a party with us, my care giving responsibility goes with us - there is no partying involved. Even though we’re at a party, my husband and I never have a relaxing, good time because we’re taking care of Stephen and watching him while everyone else is eating, talking and having a good time. My husband and I have to take turns feeding Stephen so the other one can eat. We never get to eat at the same time when he’s at a party with us, and Stephen is unable to balance a plate of food in his lap if a chair is unavailable at the table. I’m not trying to sound selfish, but it really is easier to just stay home. We feel that it’s good to let Stephen socialize, so we do it anyway, most times. It’s good for him and it’s good to allow him to minister to others in his God-given ways. We’re often told, “you don’t have to watch every move he makes! Let him wander around - stop stressing, he’s fine!” Um, yeah, he’s fine until he swipes your priceless crystal you inherited from your great-grandmother off the table and it smashes into a million pieces. We are doing you, the host/hostess a favor by watching him closely. In our case, we have to watch our almost 17 year old like a two year old. He’s gotten much better as he’s grown up, but not to the point we feel comfortable “letting him go” yet.

* Concerning Unsolicited Advice ~ Don’t judge us. Just like if you do not have children, you shouldn’t pass child-rearing instructions to parents who do have children - As most everyone knows, when you have children of your own, you’ll look back and say, “wow, I used to think it would be easier than this to care for and discipline little Johnny! Being a parent is harder than I thought.” Put yourself in the 24/7 caregiver’s shoes - You cannot imagine what it’s like to care for a disabled child for years. Do not offer your advice or your opinion unless you are educated in this particular field or unless we ask for your opinion.

* A Cluttered Life ~ All that said -- it’s the hardest job I’ve ever had, but I swear, I cannot imagine doing anything else and I do love every minute with Stephen. Stephen is no burden, he‘s the truest joy God has given me. Being a caregiver is probably the last thing I would have chosen 20+ years ago, because this girl loved her sleep and her “own little world.” I loved decorating and cleaning my home. I always had a decorating project. My home was spotless and free of clutter. To me, the hardest thing of all is not having my house in order.
One of the kindest things anyone has ever done for me was when my sister-in-law came to my house on her off days and helped me clean and organize my bedroom and bathroom. Those two rooms get less attention than any room in the house because no one goes in there except for the husband and me and I have accepted that I just can’t do it all AND be the primary caregiver. Something must go when you’re caring for someone. For me, I had to give up my job, my dream home and cleaning house the way I want to. Even so, it drives me crazy for my house to be in total disarray. My sister-in-law knows how this makes me crazy, so she pressured me to let her help. I was embarrassed at first, but finally gave in because it was either accept her help or continue looking at the chaos first thing every day till I went insane. If you’re a caregiver reading this, accept the help when it’s offered! Offers like this are too far and few between, so accept the help when you can get it! My best friend has always volunteered to help me with whatever I need help with, but I felt like I was taking advantage of her if I accepted her help, then I finally told myself, “she means it. Let her do it, it’ll make her happy as well as make me happy.”

All of the aforementioned especially applies for the holidays. Here it is only a week and a half before Christmas, and we just put our tree up last night. The husband and I finally went to sleep around two o’clock this morning. This year has been more difficult for me because Stephen has been homebound, plus he had to have surgery. I haven’t had a real break since last May. I’m dealing with it just fine, except, my house is in less order than it’s ever been in and it’s very depressing for me. My family wants me to have Christmas here. ::sigh:: I canceled Christmas last year because my house was out of order and this year it’s even worse than it was last year. Whatever … I’m going to tidy it up as best as I can and just trust that my family loves me enough to overlook my imperfections. The only real homemade treat I intend to make is my cheese ball, which my husband and brother look so forward to. Other than that, it’s pre-cooked food all the way. I will probably get the family to go in together on a big party tray or something and buy store-bought sweets. I just don’t care about the details anymore. Jesus is the reason for the season. My home is only a place to celebrate His birth and our salvation with the people I love. I’m letting go of the burden of perfectionism. That’s my Christmas present to myself. Ahhhh, sweet surrender!


kelly said...

Stephen is blessed to have you as his mom.. it is hard enough raising a child that is so called "normal",A child is a gift from God.. and you have surely done your job in taking care of yours...What you go through in a day.. some people will never go through.. There is a reason God chose you to be a "caregiver", you have a heart of gold and the love you have for your son shines through..This was a beautiful post..

Warren Baldwin said...

What an eye-opening article for those of us who are not care-givers. Thank you for sharing this. I pray God's richest blessings upon your holidays, your son and your family.

Deirdre said...


That was an AWESOME entry! I can TOTALLY relate Sister :-)I only wish I lived closer so that I could be your respite provider, weekly cleaning buddy or helper in the kitchen for the holidays.

You're right, you're doing God's work and there is absolutely nothing that comes before that. You buy those fixins and try to sit back and take a breath!

Love you GF & I hope Stephen is recovering nicely,
Johnboy aka Deirdre

Bridgett said...

I think these are all valid points that many people just don't consider. So I applaud you for making them accessible to the public.

Big hugs to you guys!

Warren Baldwin said...

Just checked in to see if you had a new post, and left the page open so I could listen to the Christmas music while I worked. Thanks!