It wasn't until Parkinson's slammed its way into our lives that our story began to shift. At first it was very subtle, hardly noticeable. Then, little by little, in almost unseen increments, I was taking on more of those things Russ had always done. I don't bemoan the necessity, but today's reading made me ponder how people decide when something is too much, when enough is enough. Is it conscious thought? Do people communicate with one another the necessity for change? Do couples naturally find balance?
I am aware that the sum total of who we are and what we have at our disposal to work with is enough. Using just those raw materials we can create a satisfying life, Parkinson's or not and that is reassuring to me. It means we have what we need as we move forward and though it can be a bitter sweet journey, by accepting who we are and our limitations it will work.
I do genuinely need support though. My online wives support group has 500 members in a closed group; ladies from all over the world. You can ask any question (his manners are slipping, shaving ideas, quiet speech, bath chair choices)...you name it, its been asked. I have gotten so many ideas from the group. I am indebted to women I have never met who have made my life better and more manageable. These women show me I am not alone.
Along with all the amazing ideas, birthday wishes, and reminders to seek and share gratitude come the shared feelings of despair. Those of course can be discouraging, but they lift me in an odd backdoor way to know when I feel like I am failing, someone else has had that feeling too and moved past it. Here are a few of the reminders that have come to me from the website support group:
"Maybe this is what we need to know in this time and space, not the clarity and comfort of the either/or, but the difficult acceptance of both/and. The truth that there are no easy answers and that much of our experience is co-mingled - joy and sorrow, laughter and tears, love and hate, hope and despair."
"Yup... it seems like lately I don't even have to wash my face and straighten up .. nobody notices"
"It's our 26th anniversary today. I've already shed my tears for today. Just another day I guess."
"My husband was diagnosed at age 50, now 70. I am worn out! Mostly from his dementia. Have considered placement. Social Worker said he’d never be admitted from home, only hospital. I think if he’s hospitalized I’ll have to seriously consider it. With Adult Day Care closed indefinitely, neither one of us have a life & it is taking a serious toll."
"I survived decades of hubby’s screaming nightmares, but the punding behavior is going to be the death of me. I have one nerve left & he’s on it. The MDS says the punding is frequently the breaking point for caregivers. I can see why!"
(Punding is activities such as counting pebbles, cars, and ceiling tiles.)
"All he does is lie! And about stupid stuff. When I call him on it, he lies more! I'm going crazy. I don't want do this anymore. Everyone thinks he's so great, but I am sick of this behavior."
"I pray for the strength to carry on caregiving my darling (often stubborn, angry, very uncooperative) husband. I’ve spent the entire day (and years!) catering to him. I realize PD is a progressive, debilitating, incurable disease. I have zero support and am alone in all this. He knows he can ask me for help. He is too stubborn to do so!"
"Do you ever just feel so alone?"
"I have no patience today! Ugh!! I don’t like who I am today! He can’t seem to organize his brain enough to do anything. I know it’s the PD, but.... ugh! I keep having to fix what he is “fixing”! I need to do my job, but... ugh!"
...and to end on a sweet note: "I am grateful for each of you who have so openly shared your personal struggles and advice."
Some of those thoughts may distress you the reader, but it is the underbelly of being a caregiver. You have an emotional limit. When I get there, I shut down, find a book and sit on the porch to regroup. I used to go for a drive, but that is no longer an option. What is an option is to realize a meltdown is nothing to be ashamed of, it is life's reality. And within the disappointment I focus on the toll PD takes on a person, how a degenerative disease robs a person, piece by piece of who they were. Their 'enough' changes by the day and it is up to us as a' team' to rearrange our enough.
It is imperative to remember that that one underbelly emotion is just that...ONE piece of your day. There is an old saying that kind of sums up Vermont... "if you don't like the weather, wait a minute, it will change". The same can be said about caregiving or living with a degenerative disease. Take a breathe, regroup, it will change.