It has been a little over a month since I have written anything on this blog, so I figured it was time to share our lives once again with our friends and family, near and far. Art is still struggling with the uncontrollable harsh effects of his severe body tremors, with each attack coming almost daily now. Instead of being able to predict the days when an attack would be eminent, as I once could (four good days, followed by three bad ones), now these heinous sneak attacks come nearly daily, unrelenting and seemingly unprovoked at any given time during the day. I am thankful they last for no more than 45 minutes (!) and often only ten to fifteen minutes, usually two to three times a day. But they can still be violent in nature, however short lived they may be. Still, for six weeks now he has been off the medication that could potentially be causing these disturbing, frightening symptoms, and we cling to the hope that this will be the week to have the attacks subside. The medication needs to completely leave his system before we will notice any difference. I know we are not promised a perfect life, but one in which he does not suffer so crushingly would be appreciated.
We do occasionally make plans with some friends still, but with the understanding (thank you trusted friends) that we may not be able to follow through if Art is having an especially bad day. It’s all about making those little adjustments…Trying to maintain any semblance of a social life as a couple is a challenge at best, if in reality becoming painstakingly non-existent, with the exception of our family, whose flexibility and devotion never ceases to amaze me, leaving me feeling well loved and cared for. There is no expectation with family, he can simply be himself, regardless of how he is feeling. The prospect of going to a restaurant and having his body begin shuddering violently is devastatingly embarrassing for this man who always faced life with the of a crack of a joke filled with disarming wit and sarcasm. There is something about dining local and fearing running into friends and acquaintances that serves as a natural deterrent. Better to go where no one knows you…But he is content to hang back at home, and allow me to go forth and enjoy my friends, savoring dinners and breakfasts with warm, caring friends, while joyously laughing with the girls over silly, insignificant things. Those are trueIy carefree moments. I must admit, I do not fear him wandering away while I am out, as walking tends to be more of a challenge these days, and too exhausting to be an option for him. He is still relatively ok to leave at home alone, although the occasional dementia episode can steal his sense of calm and set fear inside his mind. In reality, I know these days of leaving him alone for more than a few hours are drawing nearer to an end. He remains in the house alone while I have gone back to work with an altered work schedule, three days one week, two the next, and so it goes…He occasionally thinks he hears me come home mid day, stomping around the house, and when he comes upstairs and searches for me, calling out my name with no response, only to be greeted by a silent house, it is disheartening for him. He is often angry with me when I return home because he is sure I was playing tricks on him, hiding when he called my name and I did not answer. To quote him, “It’s NOT funny!” No amount of “I was at work” will suffice, because it seems all too real to him. Dementia does that to my husband.
I have been given a gift of love- a much anticipated weekend away with five of the most caring, generous, fun-loving ladies around! I am thankful for my family to afford me the opportunity to escape this weekend to Maine on this blessed excursion! While I am away Art will be lovingly and carefully looked after by our younger son Dave, as I steal his sweet wife away to accompany me on our weekend foray. I know our older son Kevin (and Caitlin) are close by, and will be there in a heart beat if the guys need him (them). I am forever grateful for this special time away with some of my “besties,” and I am thankful to these ladies for wanting to whisk away with me! Our country inn and the British teahouse awaits us….I’ll bring the wine!
Now lest you think I am forgetting all about my guy back at home, and partying wildly with my girls, think again! A refined, historic country inn and a lovely British teahouse are hardly considered wild affairs! Think of it as scoping out my next weekend excursion-one in which I am indeed taking Art. You see, we ladies are staying two towns away from my next three day outing; the next time I go away Art and I will be in New Hampshire’s majestic White Mountains. I have a goal to get Art out each month to a destination for a couple of nights. Simply relieving him of these same four walls will be a welcome change. I hope. He stays in most days, and has not ventured out unless invited by some male buddies, which has not happened often as of late. He is still enjoying oil painting most days, however abstract they are increasingly becoming. Once upon a time we could land at a bed and breakfast and take to the third floor with no problems. As long as a jacuzzi and a fireplace were involved, we were happy! But as this entry today says, it is all about making adjustments. Instead of the standard fireplace and jacuzzi, I seek out first floor rooms, preferably with a private entrance, and a handicapped bathroom ensuite. If he is struggling, no one will be the wiser, as we can enter and exit anonymous. A plus is a wraparound deck, where we can sit idly and enjoy the crisp fall air, sip hot apple cider or coffee, and maybe read a good book. I promise to bring his coveted travel mug if he gets the shakes. God bless the maker of these little gems! Slip a straw inside, and he can enjoy his warm beverage without the worry of spilling on himself, or someone else. The foliage in northern New Hampshire should be spectacular in early October, with the mountains ablaze with vibrant reds, yellows, and oranges. I simply want us to soak it all in.
I look forward to all that New Hampshire’s fall has to offer- pumpkins, maple syrup, apple cider donuts, and smell of freshly fallen leaves in the cool morning air is worth the 3-4 hour ride. I don’t know how long we can continue to traverse away from our home as such, but I am determined to make the most of these times that we spend together. He may not remember that I am going away with the girls this weekend; I tell him daily, but he often looks confused and quizzical when I remind him of my upcoming trip. Too much information, he can’t take the overload of the details of it. To say he is aware of our own impending outing together would be pushing it. He does not. Each time I mention it, it is like he is hearing it for the first time. So, when it is our time to travel we will take it slow, and just relax and absorb the beauty in God’s spectacular canvas before us on our hopefully peaceful weekend away together. Blessings to you and yours as the fading sun sinks down behind the trees as I write this, as I anticipate some much needed time away, both with and without my beloved husband. Life is all about making adjustments, and we are taking it one day at a time.