My blog posts have been colored by what is going on around me. Well, I am still musing, which was the point of this blog when I started it. I wanted to share nuggets of ideas I came across while I mused over all sorts of subjects. Working my way through issues. And it is interesting to see how I have grown and changed, as I have shared my thoughts. Most of what I reflect on is where I stand with God. And where I stand politically. What is on my mind as I go through my days. Of course, recently, I have experienced all the stuff one does when you take on a parent with a disability. Alzheimer’s is probably the worst disability I can think of, because it makes the mind run astray. And every moment is a crap shoot. And to be honest, it colors every aspect of your life. I can feel God, I can see God, but I am not next to God. Instead, I have my mom and all the issues surrounding her health and wellbeing, how she is each day, coloring every, single moment, and every, single aspect of my life. And that is the plight of caregiving. You subsume into the other person, quite often losing your own identity.
Today, on some boards I am on for Alzheimer’s and caregivers, some one posted in very large letters, “I QUIT.” So many of us rushed in, ensuring the poster was okay and not in danger of harming themselves. Suicide among caregivers is so very common. And once we were reassured she was okay, just venting, we all jumped in to give her encouragement. It is nice to be on boards where you can vent and chat and no one judges you. Today I saw a post where a woman said, “Thank you for letting me join this group. I know my sister is not in here, it is private, and I can find some time and space for me. And I can say what I need to say, when I need to say it.” Wow. For some of us, we are hot water kettles on the boil, almost ready to spit out that steaming water. And we find it hard to thank God in those moments; the moments when we need to just explode. And to an outsider, it makes no sense.
We all laugh at the platitudes given to caregivers. “You are such an amazing daughter/son” “You may not get a lot of thanks here, but you will in heaven” “You are such an angel” and on and on. Trust me. None of us are angels and none of us feel like good kids when we have just had shouting matches with our parents, who are having a bad day. We feel like crap. Like the worst kid, ever. And we desperately want someone else to do this. We really do. We want to run away and hide. Some days, we just want to stay in bed and rest. We want to sleep. And, when we are really candid, we want this entire Alzheimer’s journey to be over. And then the guilt sets in, because that means we want our parents to die. We don’t really. We want our parents back the way we knew them. And we want Alzheimer’s to go away.
Some days, I just want quiet solitude. My mom has this annoying habit of inserting herself into everything. She flips through our mail. She reads things left on countertops (I am better about putting things away these days). She inserts herself into conversations. Today she was so nonsensical. Her reactions were so off. She was laughing at things you should cry over. And then we had to repeat every 2 minutes. She looks in my room, and in my closet, ostensibly looking for me. If I am in my master bathroom too long, she calls after me and walks in, wondering where I am. (Usually I am hiding, sneaking in a game of Words with Friends). And she has this especially annoying habit of not wanting to go to bed until I go to bed. Tonight she was literally snoring on the couch. I watched her. She was not watching the program I wanted to see. And when she woke up and I told her she should go to bed, she said she wasn’t tired. I told her she had just woken up from a 10-minute nap, complete with snoring. She harrumphed and ignored me. Finally, I stood up and started my bedtime routine with preparing my vitamins and supplements (I know if I did not religiously take them, I could not do this much longer). She stands up and says she needs to take her pills and go to bed. But then she dilly-dallys, watching me, to be sure she isn’t missing anything. *sigh* I get it; I do. I am her anchor. But I just needed some downtime. Alone. In the night. Watching a show I wanted to see. She harrumphed and complained, but then went to bed, saying how tired she was. And then she grabbed me, hugged me, and said, “I love you. I don’t know what I would do without you. Thank you for taking care of me.” And the guilt came crashing down on my shoulders. Again.
So what I see tonight is that caregivers subsume all their needs and replace them with all the necessities of caregiving itself. And this leads to an emptiness. And extreme exhaustion, emotionally, physically, and mentally. Because when you allow something or someone else to replace your core self, you have nothing. You become empty, in the sense that not much of you is left. It is why most caregivers become chronically ill, chronically sleep deprived, chronically lonely. Because this is really an isolating illness. Family members do not understand. Friends lose interest. Jobs are compromised. Marriages are strained. Your own kids don’t get it – they just see your parent taking over all of their parent. We are the sandwiched generation, and we need help. A lot of it. Because Alzheimer’s is growing. Rapidly. The statistics for our future are alarming. There are going to be so many sandwiched families, and it is going to drastically affect our culture.
I don’t have any answers. I am mulling and musing, pondering, and provoking thought – I hope. And I am thankful for the assistance that is coming our way through some amazing organizations and through the generosity of grants. And I know there will be help and that makes my burn-out less horrific to bear, and easier to bounce back from. My kids are pretty much launched or in the process of launching. My grandkids are still young enough that it is not affecting them too much. I have friends who I know have got my back. Others have walked away or distanced themselves, and that is okay, too. One day, my mom will have completed her Alzheimer’s journey and I will deeply mourn her absence. But I will also, guiltily be relieved. It is no way to age. It is a burden on her, because in her lucid moments (which have become fewer and fewer) she knows what is going on and will slap her head and say she hates her mind and wants to die. And I don’t want that for my mom. I want her to have a beautiful quality of life. I am just not sure how we will make it happen, and so we take the days moment by moment. It is all we can do. I am pretty excited for the calvary to arrive, I have to admit. Respite care allows me to have a break, if we can get mom to accept someone in my place. We are praying it works out for a family member to be my respite provider, but there are others I am going to interview, too. And I am excitedly dreaming of coffee/lunch with friends, and just being free to do what I want to do. Get a haircut. Go to the shooting range with my girlfriends. Grocery shopping alone (how sad is that??? Ha-Ha). My own schedule. Even if it is just me and my hubby, out for dinner alone together. *sigh* And there goes the guilt. It’s a cycle-thing. We just go moment to moment and hang on.