Baby Steps

It's a wasteland of waste products and treatment. It's a miasma of mess. It's a folklore wolf land with rotten teeth and constant growling. You know what's way harder than wiping someone's bottom, who doesn't understand simple commands like bend over, like washing all the bed linens...and I mean ALL the linens, duvet, cover, pillows and their covers, comforter, both sheets, and pads every single day? It's doing all those things when you yourself are sick or not feeling well. All the good intentions, the new techniques learned in therapy, most of the kind thoughts are lost in the despair that you will never have a moment to yourself to rest, to recover, to pamper yourself to wellness. Never, that is, until you do have that time, and he is no more, and you are then suffering but also overwhelmingly guilty about those feelings. You know what's even harder than that? When you have had a long day of doing all that, and you yell out to him as he is about to flush his socks down the toilet, and he turns to you with those lost brown eyes and says wistfully, "Do you really hate me that much?" I find myself supremely accident prone lately. A broken foot, a chipped tooth, a cut lip, scratches galore, and bruises everywhere. I am dropping things, breaking things, pinching my fingers and stubbing my toes. Everyone does some of these occasionally. I am a study in constancy of accidents. Is it fatigue? Desperation? Depression? Self loathing? I spoke to a new therapist who was direct and helpful. Somehow in a few sessions with her, I could internalize the truth that we are not good at everything, that "it takes a village" reflects that we need each other. She also short circuited my "yes, but's" related to getting help for his care and I actually have those plans started. A very kind woman has started coming on occasions when I need relief and beginning in September will be coming on a regular basis. I have decided that I can no longer save money for when I can no longer take care of him by myself physically. I am already at the place where I cannot take care of him alone, emotionally. I am going to loosen the purse strings with the hope of relieving the heart strings and finding my husband again. I leap forward to an unknown future where my carefully squirreled away pile of nuts may not last or be enough. But I am alive now and in need now, so I leap in faith.

On the Breath

Something has happened to me. A primal scream ago I was losing my mind to grief. I had wrapped myself in insane levels of anger and was shaken with shame for my behavior toward the sweet soul of my lifelong partner. Somehow, some way, like a crab scuttling over the dark sands of the ocean floor, a small hope came sideways, slipping into the corners of my mind. It might be what is referred to as "acceptance" in this grief arena. An enormous weight has lifted from my heart, just ever so slightly, but in the weight of grief, any amount of relief is magnified in size and power. I am so grateful. Within this past week, I hit some kind of wall. My personal "yawp", as Walt Whitman would say. I was reduced to actual primal screaming. As I visited the various professionals I had made plans to see while home--the dentist, the doctors--a pattern of response came clear to me. They all witnessed our behavior and suffering and said the same thing. It was time to make various plans. Our neurologist said directly that it was time to look into a place for care that wasn't our own home. I was desperately grateful for the straight talk I heard from her and from the other professionals. It's not that I am ready to make plans quite this extreme yet, but it was somehow comforting to hear seasoned, experienced professionals acknowledge the degree of loss. Small, but huge, benefits ensued. Suddenly, though it was still irritating to tend to the chores of complete responsibility for another adult, my rage abated. My heart feels like it is daring to melt just a little, though I am aware that I will be vulnerable to more pain that way. At this point, pain is preferable to the agony of disappointment I have felt in myself, in my own inability to live up to my image of myself as a kind person. One major dilemma for caregivers is just this thing...our judgement of ourselves as we struggle to be more than what we are. This journey started with the drama of new loss, with an almost insincere grief (looking back) which was actually denial I think now. Following that came the growing realization of what we were into, and the full scale mourning and wailing. I got desperately tired of crying. Gradually my defenses came out in anger and in that valley I have been struggling for over a year. I think, and hope and pray, that I am coming out of that valley into acceptance. I know from experience in this journey that nothing is clear or complete in these stages. I will fall into fits of despair and will most certainly experience monumental anger. But I do feel a kind of peace this week that feels like a change, albeit small, but a seismic shift in my own mental well being. His sister called tonight and as I searched for things to tell her that I know she would enjoy hearing and that would make her happy, I told her about our new grandson. I shared with her that whenever I wanted to see Stew smile, all I had to do was show him the latest picture of the baby and he would light up inside and smile his old big smile. She started to cry and told me she was so desperately grateful that he had someone to love him so well and to take such good care of him. A few days ago that would have made me feel terrible as it was in such contrast to my own judgement of my care. But today it made me both surprised as I hadn't thought of that action being a kindness and also happy that I could make two wonderful people happy by my actions!

Requiem

Alzheimer's is killing me. For all I know, it has begun its insidious tortuous path within my own neurological network. Certainly it is taking its exacting toll on my general health in stress, enormous stress in dealing with my patient. I used to call him my husband but that was long before he turned into a very bad acting toddler, with no empathy or awareness of his destructive power. Who requires constant, vigilant care, who is incontinent and has lost any idea of how to clean any part of himself. Who puts nothing in his mouth without my direct involvement...liquid, food, or medicine...who puts on or off no item of clothing without my help. Thus he has become my patient. Strange choice of words as I have NO patience with this patient. I think a stranger would take better care of him emotionally. I am bankrupt emotionally. I actually can't stand this any more and find myself literally pulling out my hair and screaming as loud as I can, no words, no message, just feral screaming with all my lung power. Of course it makes no difference except to make him sad in the moment...but he forgets it quickly. I don't. It is changing me. This journey is killing who I thought I was. I thought myself a kind person, a person who likes to help, a nurturer. I was so wrong. If a worthy goal in life is to learn ourselves, I guess I am becoming successful. But boy is it a shocker to see traits in yourself you would never allow in your conscious thought as part of you. And to find missing what you assumed would be there. Alzheimer's is killing my image of me. My daughter has witnessed a few lesser breakdowns of mine and observed that it was like Jekyll and Hyde. That my behavior was not normal for me. I beg to differ. The behavior she witnessed, the screaming fits are the new real me. We might have to hold a wake and a funeral service in the near future of the death of who I used to pretend I was. Few might come. However, even I wouldn't come to the funeral of the person I am becoming.

Fool's Gold

I am a clown. A certifiable circus freak. A bearded fat lady, wolf boy, fraud. A deceiver, a fool. I hand out wisdom and suggestions like nuggets of gold found in the Colorado streams of my mind. Two young neighbors came to my door, separately today. One was struggling with what she desperately wanted that she saw others getting, and is out of her reach. Another is struggling with newly discovered serious mental health issues. I took them into my home and warmly panhandled my advice. My sage homilies. Not two hours later a recent immigrant came to my door asking for such advice, as she had mined at this profitable stream before. Eureka!! Her pouch was filled with treasures of ideas as well. I prepared meals to take to church for distribution for the homeless. I called an ailing friend to make plans to visit, so she could enjoy looking forward to a little something. (Oh yes, this prospector is righteous as well!) And I am a complete and utter fraud. I know nothing about what to do for myself. Nothing. I find myself shrieking nonsensical things like, "what makes you think you can wear pajamas?!" And, "why are you looking for what isn't lost?" Sometimes I fear I might actually be losing my mind. My old cats continue to decline, reflecting the gradual departure I am living through. My son's girlfriend--whom I love--left him again, as he can't make the kind of commitment that is reassuring enough for her. Another body blow of loss. I can dress the part and wear the hat and talk a good game for others. But I can't deliver. Not for myself. Not for him. I know not how to alleviate this terrible pain and I can't stand the feelings of constant and complete loss.

Roller Coasters

I spent three days in hell. Thoroughly spent. Unable to cope in a healthy way with his total cognitive loss. And I mean the kind of loss that thinks wiping your butt after pooping is accomplished by polishing your knee. But somehow, with lots of reaching for good friends and a therapist, I once again reached a kind of stasis. Now, I have learned through experience that just when you relax your vigilance with this disease, bad stuff happens. Sure enough. After a fairly nice day of not feeling my own raging anger, and after the honeymoon glow of absence of anger, he erupts in huge paranoia , rage, and distrust of his own....over nothing that can be seen by a rational mind. This whipsaw effect of going from my own mind blowing rage stage, to a kind of acceptance and calm, only to be blindsided by his huge rage two days later is unsettling. This time I remained reasonably calm and we had another fairly pleasant day. As we sat on the couch, he remarked, "Oh, do you watch this show too?" I answered yes, and my first thought was that maybe he had already seen it during the day, while I was taping it. But something felt odd. I turned off the TV and asked him who I was. He pondered for a moment, then said he wasn't sure but he thought I was probably a teacher. The rest of the evening we spent with his remembering people we had known briefly and casually thirty some years ago, but his memory of our relationship never returned. He told me he thought I was a wonderful person but that was all he knew. I would like more balance in my life and I can sure do without the ups and downs of the vagaries and vulgarity of Alzheimer's. But the irony and unfairness of memory is awful. He remembers a man we met maybe five times, thirty seven years ago but can't place the woman he has lived with for forty five years. Sigh.....

Of the Feline Persuasion

I have two old cats, both of whom are nearing their end and unwell. One has a thyroid condition; the other kidney failure. Both suffer from a seizure disorder though my kidney cat is much worse (and a few years older). My oldest cat also is deaf and has dementia. She forgets where her litter is and forgets that she has been fed. She still gets pleasure from sleeping in the sunshine all day and sleeping on my head all night. She does not appear to be suffering. Dealing with the nursing and loving duties for these old friends is increasingly hard work involving administering meds and subcutaneous fluids, but nothing I can't handle. More importantly I know what is needed, what to look for when my help just isn't enough...when it's time to give them the ultimate gift of love that we are unable to give to our human companions. But in this medical facility that used to be my home, we are also mired in the miasma of Alzheimer's. Last night he asked me if I had a husband and where I lived. He thought I was a wonderful person but didn't know more about me than that. Guessed that I was maybe a teacher. (He often thinks we are in a school.) My son suggested that maybe he was asking because he was interested and wanted to date or even marry me!) The next morning he wanted to know who all the people were in the house during the night. (There was no one.) He still didn't know who I was. For all my rage, this kind of loss taps into a very deep well of sadness. This is real loss.

Reverie

My mom grew up in a house full of siblings, at least four of them big boys. She often would escape into her beloved books and would find a reclusive spot like the corner of the attic and stay out of everyone's way and commune with her own thoughts. We laugh about how we resist being like our parents, even deny similarities through our teen years. As we mature, we recognize and even sometimes appreciate those traits we find in ourselves that are uncannily like our parents'. It is so with me. Escape is what I yearn for. An attic is what I seek, with a trap door that opens only for me. I am overwhelmed with my anger at our circumstance and the degree of dumbness with which we are now dealing. I scream, but alas there is no attic, no book available. The mess, the pain, the problem is still standing right there, no matter what I say or do, how loud I yell or how compassionate I try and fail to be. There is no one else to fix it.