Everybody Needs a Little Time Away

I'm happy to report that we survived the week that Dad was on vacation without any major incidences!

I think that this trip was a big eye opener for my brother. He insisted that we didn't need caregivers while he was there; he was working from home on his computer for the week. I told him what we were dealing with, but until you are here to see it firsthand, I don't think you can really understand. I think he mostly just thought he needed to be there to make sure there wasn't a fire or big emergency; much has changed since the last time he was here. Needless to say, I had to call the caregivers back to come in and help for a couple of those days. Natalie and I spent a lot of the day there as well, but it's difficult to keep the kids cooped up in dad's house all day (there isn't much for them to do there), especially when Joe was trying to work, so we had to get them out of the house for at least a little bit each day. All in all, Mom was safe and taken care of and Dad was able to go and have a good time away from the stress and sadness of his daily life. I am really grateful that I had Joe and Natalie here for the week to help out, if for nothing else than for my emotional sanity!

After dad returned, I went home with Joe and Natalie for a week. We started this tradition a few years ago-to spend a week together at each of our houses every summer. It gives the kids time to bond and play and it gives Natalie and me the chance to sew, stay up late watching movies and just hang out! Usually I drive out there for a week and bring her and the kids back with me, and then Joe will drive out to spend a long weekend with us and take his family home. This year it worked differently and most of our time here was watching Mom, so I was really looking forward to our time in Arizona.

It was really refreshing to spend a week away. Although I was still on the phone every day handling some things with caregivers and Mom's doctor/nurse (post to come on that topic), I was able to refresh and spend time with my best friend. This has been a very difficult summer for me. With Mom's disease progression and having to do things I never imagined I'd have to do, having the kids home full-time and fighting with each other, and me deciding a few months earlier to go off of my anti-depressant (probably not the best decision I've made), I have been overwhelmed emotionally. I don't like talking about the fact that I had to go on anti-depressants a couple of years ago, but it is what it is. It's a sad reality for a large number of family caregivers. The truth is, I've been extremely emotional. It seems like everyday I am on the verge of tears and probably once a week I end up with a crying fit. I have felt stressed out, tired, discouraged, angry and lonely...to name just a few emotions. One close friend of mine remarked to me that my countenance has changed over the past few months. Although it's hard for me to hear that, she is right. Many days the despair and grief are almost too much to bear; it's hard to see the sunshine with the dark clouds looming overhead.

All this to say, I've really needed my best friend. My family likes to tease Natalie and me for being so outspoken on our BFF status. We like to have fun with it too (if they're gonna tease us, we're gonna annoy them!) and we've made BFF shirts and bought matching outfits and had photo shoots with it all. We might be a little crazy but that's okay, we have fun together and sometimes I just need to laugh. They can make fun of us all they want, but they don't really understand our relationship. The truth is, I feel like Natalie is the one person who really "gets" me. This isn't to say that my other friends aren't great; truly, I've been blessed in the friend department and I have a lot of great friends in my life who are there for me when I need them. And let's not forget to mention my husband; I'm really lucky he puts up with me. I just feel like Natalie and I get each other; we have a special connection. We've both been through hard losses, some of which we've gone through together, and we understand each other. I don't have to tell her how I'm feeling, she just knows. We both know what each other needs to brighten up the day and know that we are there for one another unconditionally. I don't have to tell her that the reason I am feeling edgy or moody or sad is because I am mourning my mom; she just knows. I know it sounds really corny, but if ever there were such a thing as friend soul-mates, we would be it! She loves me, flaws and all! And I feel the same about her. I am so blessed to have her in my life.

Coming home from Arizona was hard. Don't get me wrong-I was happy to be with my husband again, I missed him while we were gone. But now I miss my bff. In a perfect world, we'd be neighbors and we would see each other everyday. Now that I'm home, it's back to reality. I feel like I'm back to where I was before she came; alone in managing these complicated emotions of caring for my mom. :(

A Little R&R

My brother is on his way into town. My dad is taking a much needed vacation with his sisters and cousin and will be gone for a week. My brother and his family are coming to stay and help out with Mom while he's gone.

Over the past couple of days, in preparation of his arrival, I was reflecting on how much Mom has changed in just 3 months, since Joe last saw her.

The most obvious change is that Mom is now in diapers full time; Joe knows about that. I've related the shower struggles and the ever-increasing loss of words and language.

But then there are the changes that we don't talk about daily. These are the changes that happen so gradually that it's hard to remember precisely when it started.

Mom no longer changes into pajamas at night. In fact, she no longer changes at all. She used to change her clothes if she didn't like my wardrobe selection for her; not anymore. She stays in the same clothes until someone changes her and requires full assistance to get them off and on.

Mom only has 3 names left in her vocabulary: Bud, Cassandra and Ellen. I don't know if she remembers who my sister is or any of the grandkids (I think she knows that they belong to me). But the only names and the only people she ever asks for is my dad, my aunt and myself. I think it's a little strange that she still remembers Ellen but not Claudia (her other sister). Claudia comes over weekly to sit with her; Ellen has been over twice over the past 4 years. I assume it has to do with her obsession to walk to Ellen's house. It is the one ritual that she has left and holds onto.

Mom doesn't put any make-up on anymore, not even blue eyebrows. She tries sometimes, but it's hard to put on lipstick when the lid is still on the tube. Every once in a while she might get a bottle/container open and she'll end up with eyeshadow or lipstick smeared across her whole face. Toothpaste seems to be her favorite choice of moisturizer.

I am with Mom nearly everyday, so the changes aren't as obvious to me. I wonder what it must be like to come and see her after being away for a few months. I am nervous for what lies ahead this week; worried if my brother can handle it all. But also, I'm so relieved that they will be here to help with Mom and to share responsibility with me. At least I know that we are all in this together!

Here's hoping that my dad has a restful, stress-free, fun week away! He sure deserves it! If you're reading this, Dad, don't worry-we've got this! Also, put away your phone and go have fun! ;)