The reality of what I and others like me are going through with our parents (dementia or not) is far different from what a lot of the information, blogs, articles on caregiving, and support groups (ugh - no) are putting out there. I would never say it’s all negative and I would never say that what’s floating around out there is a bunch of guilt-inducing, anxiety increasing crap. However, for me, a lot of it is just flat out unrealistic.
I’ve learned a few things from some solid resources I’ve found. I’ve learned how to make mom comfortable and how to communicate with her. I’ve also learned how to answer the repeated questions in ways that don’t make her anxious. I’ve learned that the odd behaviors that seem to come out of nowhere and serve no purpose are not worth questioning; I just pick up the pieces and move on.
That’s all fine and good as far as how she feels, but what about me? What about the caregiver side of the fence?
We work so hard to keep our parents happy so, in my mind, I imagine their side of the fence is lovely; freshly painted white pickets, a well-manicured bright green lawn, and carefully tended flower beds. Everything is neat and in its place and if something needs to be fixed, it’s done right away.
Our side of the fence is a little different. The paint is peeling on some parts - other parts need to be replaced but, if it can hold out a few more days (weeks), we’ll get around to it. The lawn has a few brown patches and a few weeds; however, the weeds look like grass from the curb so good enough. Thank goodness for automatic sprinkler systems or the whole thing may as well be rocks and cactus.
I’ve struggled with putting this part of my life out there because, frankly, I don’t want to come across as frustrated or unhappy because I’m not. Not all the time. But, if I withhold the ugly parts and only share my more benign struggles, then what’s the point in all this? And, if someone puts a not so nice label on me - well, that’s their perception and there’s not much I can do about it. I certainly wouldn’t get into a sparring match to defend myself; I’m not here to change someone’s mind about what’s right and what’s wrong in this endeavor. But, if I’m honest about what I’m going through and it helps someone feel a little better about themselves and their thoughts, I’ve done what I wanted to do. We need to know we aren’t all alone.
I visit mom throughout the week and every Sunday, at 3 pm, I go to her place to gather up her laundry, change her sheets, straighten up her room, and make sure she takes a shower. I dread Sundays. I would much rather be spending time with my family, reading a book, paying bills, cleaning the house, or picking up dog poop. Really.
I’ll spare you the full description but I never imagined I’d have to give explicit instructions on every little step of taking a shower; from taking off her clothes to how to use a washcloth to helping her get dressed again. It is a running commentary that lasts at least thirty minutes and is interjected with her comments about the water being too hot or too cold and how cold it is when she is drying off. I do my best to keep the room warm and the door closed enough so that it holds some of the heat because I don’t want her to be uncomfortable. I also do all this because, only in my head, some of my responses to her statements are not very nice.
Fun fact: outside frustration doesn’t remain contained in its particular situation. It spills over into everything, no matter how hard I try to keep everything in its place.
I had one of my not so stellar moments this morning. My dog Amy is dying. She’s thirteen and has been having seizures and all the horrible things that go with that. She’s little so it’s easy to hold her when she needs me which is starting to be all the time. I asked my son to take care of her while I did some things around the house - at the rate I was going all my time was going to be spent on the floor and I have some things I need to get done. Anyhow, I walked by his room and he let me know that Amy had vomited. I jumped to the not unprecedented conclusion that he expected me to clean it up and I got pissed. Are you kidding me? I’ve got my mom and now Amy and I ask you to take care of her for thirty minutes and I still have to stop what I’m doing? I felt tears starting (my oh-so-adult reaction to being frustrated) and he looked at me and said, “No, I just wanted to let you know. I've got it, I’m cleaning it up”. I didn’t even say I was sorry right away. This isn't how I want to be.
There’s also the constant worry about money. I’m thankful mom has the means to live in assisted living but how long is that going to last? Her living expenses are just over $50,000 a year and that’s on the low end since other than dementia she’s healthy. Medical costs are barely a drop in the bucket. Maybe we’ll get lucky and her health will remain decent. Or not. If only I had a crystal ball - but, then again, maybe there are things I don't want to see.
Now that I’ve mentioned cost, as a side note, let’s talk about having to take a crash course in Medicare - namely Part D. Medicare Part D is for prescription drug coverage and, if you get coverage, you need to sign up for it during the open enrollment period which is the three months before your 65th birthday or the three months after your 65th birthday. If you don’t, then you’ll be the proud recipient of permanent financial penalties.
Guess how I know?
Mom did not sign up for Medicare Part D during her enrollment period. Maybe because she had Tricare, which is insurance through the military, and didn’t think it was necessary? It was too confusing and she didn't take any maintenance medications so what’s the point? I’ll never know. However, I’ll tell you what I do know: for every month she went without coverage she incurred a penalty. And she went without coverage until I signed her up for it when she was 75. That’s 120 months, folks. Each month without coverage adds around 1% of the premium cost to the monthly premium. Good thing I was sitting down when the nice Medicare person told me what mom was going to have to pay for the rest of her life. Because she didn’t sign up when she was supposed to she would be paying, in addition to her premium, an extra $40.80 per month, which comes out to $489.60 per year, for the rest of her life. For a more in-depth, but still easy to read explanation about Part D penalties, go to AARP's Medicare Resource Center .
After I finally got her signed up I really wanted to call and ask her just what in the hell was she thinking by letting this slip? Her friends were all signing up and I’m sure she received all kinds of reminders in the mail. I could have asked her but she wouldn’t have been able to tell me so it would just be me letting off steam and making her feel bad in the process. There are no winners in that scenario.
There are a lot of little everyday moments that stop me in my tracks. Lots of opportunities for me to be angry. If I acted out every time I felt some snarky comment bubbling up or said what I really thought at the moment, who would be the miserable one? Being gentle and kind isn't easy sometimes and giving up what you thought was free time really sucks. There's a balance in there somewhere and I'll keep trying to find it.
Will I miss her when she dies? I’ve asked myself that question hundreds of times and the answer is always the same. I’ll miss the idea of her. I’ll miss having a living parent. But, will I miss the existence that we have now? That answer is no. Of course I’ll cry, or at least I think I will. Maybe I’ve already mourned my mom and I don’t have any tears left. And really, who are the tears for? If I cry, it will probably be for me. For what I’ve lost and for what I’ve gone through. It’s tough to admit but it’s the truth.
*“Remember when the days were long and rolled beneath a deep blue sky. Didn’t have a care in the world with mommy and daddy standin’ by. But “happily ever after” fails and we’ve been poisoned by these fairy tales…”
*Henley, Don. “The End of the Innocence.” The End of the Innocence.