I wanted to throat punch anyone who compares the caregiving of my parents to caring for a baby. End of life caregiving is just that, end of life, there is no joy as they struggle to walk, no choo-choo or airplane as you try and get them to eat.

These are a few of my pet peeves of as caregiver and a few suggestions for anyone who has a caregiver in their life. Please add your own and suggestions in the comment section. My hope is to make this page a good resource for those who care about a caregiver. As this grows I will repost it occasionally.

A caregivers life is hard enough, don’t make it harder:

Don’t stop inviting me to things just because you know I have to decline, I still want to be included. Even if I could get someone to take over caregiving duties, I am too tired, depressed, emotional… fill in the blank…to go. I can’t do small talk anymore, I’m not just out of practice, I don’t want to. My priorities have changed and my idea of a good time is now different from yours. I am afraid to leave them, as much as I want some down time, my stomach is in knots when I am not overseeing their care.

Don’t tell me you understand unless you’ve gone through this yourself. It’s ok that you don’t understand, I don’t expect you too, I didn’t until I lived it. I hope you never have to go through this, but if you do, I will be there for you if you stick with me through this.

My day can change at the drop of a hat, that means I might have to cancel plans at the last minute. You might find it annoying but having to cancel might be devastating for me, for whatever happened that made me cancel and for missing out on something I had been looking forward too, I don’t have a lot of things to look forward too.

Do not ask me “how can I help” or “what can I do for you”, I don’t have time to make you a list. I don’t want to suggest something only for you to make excuses why that doesn’t work for you, can I think of something else. Just put yourself in my place as best you can and come up with your own list and do something, anything.

Most people will not come up with their own list, so I thought now that I have some time I’d make one. Feel free to edit it for your own use and hand to your friends and family when they ask “how can I help” or direct them to this post, who knows maybe they might just help.

Here is how you help, what you can do:

Sibling(s):

One of us needs to be the one in charge of the day to day, but we need to make decisions together. Telling me “whatever you think is best”, does not help unless you follow up with “but have you thought of…”. I need your input, please don’t leave everything on my shoulders just because I am local or have a flexible schedule or because I was the one to step up. We need to be a team, I need to be able to vent to you without worrying I am make you feel guilty. Make an effort to visit as often as you can if you are not local. If you are local we should be tag teaming this, step up. I understand that you are busy, but so am I. Your busy is living your life as you normally do, my busy is walking away from my life to care for our parent. Make our parent’s (Grandparents, Aunts, Uncles…) care and my sanity one of your priorities.

Other Family:

Work as a team, contact one another and work out a schedule. Check with me to see if there are any food restrictions if you are bring food. Don’t all come at once, unless all is a maximum of 4 or so. Too many people at once can overwhelm our loved one. Create a group text if one does not already exist, so I can update everyone at once or designate one person that I call with updates who informs everyone else.

If we are going through a long hospital stay or rehab after hospital stay, visit there. Offer to take over the watch, but understand I might need your visit more then I need a break.

Don’t tell us you are going to visit more often, then don’t, we feel forgotten about and we have enough heartbreak to deal with, don’t heap more on us.

Close Friends - Near and Far

If I can’t go out, bring the party to me. By party I mean visit and make me laugh or call and keep me company.

Check in ask how everyone is doing. Do some research on what my loved one is dealing with so we can have informed conversations. You educating yourself on our situations shows me how much you care more then care packages, although I love care packages.

If my loved one is in the hospital, drop off or send a hospital care package for me. Tissues, power bars, magazines or a good book you think I’d like, you know me, you know what to put in a care package.

I know I’ve canceled on you, but if I tell you I’ll be free on a certain time to hang out with you, please make time for me.

Organize the rest of our friends, brain storm ideas to make my life a little easier.

If you’ve been through this yourself, you don’t need a list.

AFTER - Baby Steps or Leap?

Today I agreed to celebrate Thanksgiving with friends and made plans to celebrate Christmas with my Sister. I had tossed around the idea of going to the movies on Thanksgiving, I almost ordered a ticket for Knives Out and I could have used that as an excuse to avoid the holiday, but I didn’t, and I feel good about that. I can’t tell you the last time I celebrated a holiday. Last year I just wanted to be by myself, and before that I just went through the motions for my Dad. I don’t remember the last time I enjoyed a holiday. I even gave a thought to getting a tree this afternoon, but I think that is too much, baby steps.

I did work on my schedule over the weekend and although I am finishing up this blog post after 8 pm I did start it earlier today. I was able to get to a project that I have been wanting to start because I managed my time better. Let’s see if I can stick to this for a week, short week being a holiday and all, less pressure.

Speaking of pressure, Black Friday scares me, the crowds not the sales. The last time I was in a crowd, an outdoor concert that was jammed packed, I had an panic attack. I am thinking of going to one store and see how I do, sort of test the waters. I know it’s illogical, however, my panic was that I could not get to my Dad while in that crowded venue. I know he is gone, he no longer needs me, but that is what started racing through my head. This is not taking baby steps, this would be a leap.