Tuesday, July 28, 2009

Jekyll and Hyde

The years that my father spent taking care of Mom all by himself were truly gut wrenching for him and for those around him. I will mince no words here, it was hell. He transformed into a crazed, irrational and vicious being; a Mr. Hyde. How ironic this was because he was truly trying to do what was right, but in the process, he was so wrong. I don't really want to go into detail because I am not sure what could possibly be gained from this. I do know that I will always honor my Dad no matter what, but what I struggled with the most was loving him during the process. Can there be honor without love? I have posed this question many times and now in retrospect I realize that the answer is no. This is not what is important now. What is important is that my Dad has come back to us. He has been reborn, so to speak. We all had missed him terribly.

Once we were able to get Mom settled and adjusted into her new life in the nursing home, my Dad slowly returned to us and he slowly returned to life. At first, I was too stunned and wounded to actually notice his transformation. This is so unusual for me since I tend to rebound quickly from stress but somehow this was different from anything else that I had experienced. Something I hope to never experience again. Dad was finally getting uninterrupted sleep. I remember too well the many sleepless nights of wandering the hallways tending to babies, toddlers, and a husband simultaneously while I was ill myself with some awful virus or nasty flu. How did we manage to get sick all at once? What a cruel joke that was. These seemingly long days, nights and sometimes weeks of illness were short compared to the years my Dad had suffered. Lack of sleep can change a person into an unrecognizable form. With the much needed sleep, my Dad's entire mental well being returned. His bursts of irrational temper flare ups were becoming less and less and there seemed to be a calm that was settling in him. His impatience with Mom was dissipating and he slowly began to release his control over her. I liken this to motherhood again and again because I understand how powerful a mother's care taking control can be. It is so hard to just let go and let someone else take over this powerful instinct yet it is so necessary to relinquish that so-called right.

I am happy to say that Dad has completely returned to us. He has new friends, a new and smaller home and most importantly a better outlook on this phase of his life. He truly has embraced the much improved and manageable role as caretaker. Although the financial burden is incomprehensible (one of the many reasons why he fixes things with duct tape!), I know that he and Mom will still be able to live comfortably for the remainder of their lives. If and when the money runs out, Mom will still be able to live at Barclay ( In order to live at Barclay, you must enter at a status called 'private-pay' but once you can no longer pay privately "out-of-pocket", Barclay allows Medicaid to pay for the rest. Making sense of Medicaid and Medicare has become a complete thorn in my side. I suggest that you read up on this and know your stuff, it will serve you well!). What will happen if Dad needs to enter a home? Ah well, you can only plan so much. We will cross that bridge when we come to it.

Welcome back Dad. You were sorely missed. We will always love you.....no matter what.

Thursday, July 23, 2009

Old People

I used to be afraid of old people. I think this is because of two events that happened to me when I was younger. One such event was my first time attendance to an open casket funeral for an elderly friend of my parents. I had no warning as to what to expect so when I saw this very dead, very old person lying in a casket, it scared the living daylights out of me. I thought for sure that she was going jump up out of her satin box and get me. Thanks for that one Mom and Dad. The other event was even more traumatic. I was in Brownies and my troop leader decided that it would be nice to sing carols at the local nursing home. Everything was going smoothly and I was singing my heart out to all of these sweet, smelly, old people when all of a sudden it was time to go. Somehow I managed to fall behind the gang of girls and suddenly I was attacked by a toothless old man who was wheelchair bound. To me he appeared to not have any eyes, hair, arms or legs but then I realized that if he was holding me he had to have arms. I was only 7 and I was being held by some unknown old man so it is fair game to let my imagination go wild, don't you think? He grabbed me and would not let me go. I was terrified and when I looked around, my lousy troop and my lousy troop leader were no where to be found. Thanks a lot troop 23 and Mrs. Tomlinson. He finally let me go after years and years of captivity and I went on to go to school and get married. What can I say, I was scarred forever by old people, or so I thought.

So now, as I enter The Barclay, I am happy to say that I have a new found love for old people. They are funny, full of life, cantankerous, intelligent and just amazing. Each and every one has a story to tell. They have all lived the most incredible and wonderful lives. The only trouble is, you have to be willing to spend time with them. You also have to be willing to touch them and to get down on their wheelchair level to speak to them. I assure you that once you get out of your comfort zone and behave like a compassionate human being, you will be well awarded. What I find especially interesting is the fact that humans need to be physically touched by other humans. No matter how old. No matter how young. It can be deceiving at first when you encounter a geriatric in a nursing home because they have a way of not making eye contact. I think they are so used to their elderly loneliness that they have forgotten how to do this. I find this especially true for the wheelchair bound. Most of the ones that I encounter are women (actually, women out number men all around in nursing homes) who are able to scoot themselves around by using their feet to take itty, bitty rolling steps. They look like hermit crabs with this large shell on their backs scurrying around to who knows where. The look of determination on their faces is wonderful and because I am easily entertained, I think it's very funny-in a nice way, though. Once they stop to catch a breather, I am able to greet them. This is where the transformation takes place. It's kind of like those ridiculous blow up Christmas decorations that people have on their front lawns. They lie in a heap of some unrecognizable shape and then you plug it in and they come to life before your eyes. Greeting and touching becomes a geriatric's electrical current. It is amazing to see this transformation and I can't help but smile at them. I usually get a huge smile in return and the conversation that follows is always pleasant.

The many characters at Barclay provide endless fodder for our entertainment. One wheelchair bound lady parks herself near the nurses' station close to mealtime so that she can shout in her southern voice, "Here comes da fooow-d!" Then there is a man named Dale. He is not too old but has suffered from a stroke and can only respond by saying, "K K K K K K K..." to everything but he says it in a way that is happy and laughing. He knows exactly what is going on and he knows who you are. Then there is haunting Mary, who never says a word. When we see her coming we give warning because she comes upon you very quietly so this can be unsettling unless you are prepared. Our warning is in Spanish, of course, "Aqui viene la mujer loca!" Mary is completely harmless but if you do not know this, she can really seem creepy. She is in her late 50s early 60s and used to be a professor at the local university. I am told she was brilliant but went crazy. Now she wanders around Barclay with her hand down her pants or up her shirt. She looks very disheveled and her eyes have a half wild half I-want-to-say-something-to-you look. She doesn't give me the creeps anymore and I always greet her and ask her how she is doing. Even though I don't get a response, I know she knows what I am saying to her. I also like the little lady who wears a different baseball cap every day. The one I have seen the most is the blue sequined cap. She is a crack up. Jean is the escape artist. She walks around carrying her handbag and looking more like she has just come for a quick visit with her hair done and her make-up as fresh as a daisy. She is suffering from Alzheimer's but has moments of complete sanity. She loves to try to escape and will do this non-stop. It's gotten so bad that my Dad knows how to reset the alarm on the door. Jean also has an uncanny way of seeking Dad out and asking him to help her with her sanitary pad. This just cracks me up. Dad and I have often commented that a sitcom could be written about the people in nursing homes. Hmmmm..not a bad idea.

There are many more characters at Barclay but it is important to realize, that no matter what, they are still human and they still deserve respect and dignity. These people have led such extraordinary lives. If you have not had the chance to read Water for Elephants by Sara Gruen, I highly recommend that you do. It will give you a glimpse of life in a nursing home as seen from the eyes of and older gentlemen who lives there. The story goes back and forth between his past and his present life. I listened to it on disc and found the readers to be excellent especially since they used an old reader and a young reader to represent the different time periods. Yes, you will cry but that's the sign of a good book. Enjoy and visit some one in a nursing home. You won't be disappointed.

Tuesday, July 21, 2009

Just US Girls: A Visit with Mom

I have decided that we are, without of doubt, the loudest family that ever existed. This could easily cause a problem when we are gathered at The Barclay but most of the inmates (Dad's reference) are dead .....I mean, deaf so we seem to never bother anyone plus we have the added benefit of Mom's room being at the end of the hallway. My two older sisters and I have decided to make a 7 pm visit to see Mom. This has become our habit when my older sister flies in from Booneyville, USA. We pick her up from the airport and then head to the nursing home where we turn the place upside down with laughter, hooting and hollering and then we head out to eat somewhere to turn that place upside down with more hooting and hollering. Okay, so we are a little obnoxious.....all right, we are very OBNOXIOUS. This particular visit we just so happened to be accompanied by my one sister's old high school friend. She is used to our loudness and laughter because she spent a lot of her teenage time seeking refuge at our so called normal household. It is touching to know that she always visits my parents when she comes back to the US (she lives in Norway now) for a summer visit.

Upon entering Mom's room, I am struck by the irony that she has been bedded down for the night while it is still daylight. We always tell Mom how we have been seriously marred by the fact that she used to put us in bed while it was still light out and while we could hear the neighborhood children still playing outside. This was shear torture as a kid! Now that I am a mom, I completely get this necessary act of child abuse. It was the only way of maintaining any form of sanity as an exhausted young mother.

It takes us awhile to actually get to Mom because there is an additional mattress on the floor next to her bed to protect her from a possible night time fall. We have to struggle to move it and place it somewhere in the already cluttered room. Then my two idiotic sisters fumble with the bed-raising button to raise the bed from the floor position to a higher position but neither of them can see because one is too stubborn to admit that she needs reading glasses and the other is constantly leaving her reading glasses elsewhere (remember, this is not done very quietly either). So I just stand there and watch the idiocy play out knowing full well that they will finally give up and hand it to me, the much younger sister with the most excellent eyesight ( I will always enjoy the secret weapon of being the youngest). Now we can greet Mom. This is not your typical form of a greeting, though. We turn into clucking hens. "How are you Mom?" cluck cluck "What's that in your eye?" cluck cluck "What is that thing on your neck?" cluck cluck "Who parted your hair that way?" cluck cluck "Let me fix it." cluck cluck cluck CLUUUUCKKKKKKKK. Mom loves the attention as we noisily fuss, pluck, pick and smooth out any unsightly hygiene problems.

We settle in to our usual hooting, hollering, laughing and reminiscing. Our stomachs hurt from all the laughter. Our faces ache from all the smiling and our eyes are red and blurry from all the laughter-tears. We are so loud. Loud enough to wake the dead. Uh oh, someone said "DEAD" and with this, the three sisters suddenly and ever so eerily, as close sisters do, simultaneously remember the DPCs (Dead People's Clothes, in case you forgot). With this, we run to the closet to see what the latest deadly drop off has produced. Oh my! These canary-yellow-double-knit- polyester-size bazillion-pants are ever so lovely. And then, my sister puts them on. My poor mother is laughing so hard that nothing is coming out of her mouth. My sister is 5' 9" and the ever-so attractive pants come up passed her chest to almost her chin. This sends us into wild and uncontrollable hysteria. Not only that but two of us can fit into the canary bloomers together. Fortunately we don't attempt the latter because then we would all need to wear Depends and that would not be an attractive sight. Who in their right minds would wear
that and why does Dad seem to think Mom would wear that????? The best part is when the visiting friend, once she stops laughing at the hideous pants, asks us what in the heck are DPCs? This sends us into a frenzy of loud explanations where we all talk at once and then we all finish each others sentences all while our friend is hanging her mouth open and trying to keep up with the DPC definition. Then she says, "EEEEeeeewwww!" after fully comprehending this ew-ish event.

We kiss Mom and put the room back the way it was and we start our long walk down the hallway. We become somber until my one sister does an imitation of herself as a crotchety old lady talking to her only child who will come (she hopes) to visit her in a home. This sends us into more loud hysteria. Then I claim that by the time I enter a home, I will have a severe case of Tourettes and I do an imitation of the various things that will come out of my mouth (this is easy to do since my husband and children claim that I already suffer from this disease) and my other sister claims she'll be dead. This is not so funny but what the heck, we laugh anyway because everything is just soooooooooooooooo funny. I feel really sorry for the people in the restaurant where we are headed.

By the way, be glad my brother is not in this mix because this would thrust us into a higher level of loud obnoxiousness.

Wednesday, July 15, 2009

Dead People's Clothes ( DPCs)

I happen to be a big fan of OPKs ( Other People's Kids) because they are always much better behaved than my own and if I happen to be in charge of these little monsters, all I have to do is glare at them or look at them sideways and they crumble in a heap of tears and then I have them forever under my control. I also happen to be a huge fan of OPFs ( Other People's Food). This, by far, is my favorite because I don't have to pay anything, I can eat as much as I want and then I can leave. What more could you ask? Oh, and there is OPSs ( Other People's Salads). Why are OPSs so much better than mine? This baffles me but since it also falls under the the OPF category, I am easily unbaffled and happily gorging myself on the OPSs so I stop complaining. Well, I have to say that I am not a fan of DPCs ( Dead People's Clothes). This unnatural phenomenon occurs when a most natural phenomenon occurs; death in the nursing home. It's best to prepare yourself now because death in the nursing home occurs practically on a daily basis and the DPCs issue is a problem.

My oldest sister is about to come home from Booneyville USA (Blakey, GA) for a one week visit. She is a true Southern Bell; charm, beauty ( head turning, in fact), a soft Southern accent, and she is a knock out dresser (remember the latter description for later purposes ). She called me all excited with herself because she is actually only bringing 1 carry-on piece of luggage instead of her usual 20 pieces of luggage for her usual 4 day stay. This is truly amazing because she is actually staying 7 whole days and I am curiously wondering how she will manage wearing the same outfit for 7 days. She goes on to tell me that she had told Dad this same thing and he tells her, "Oh, Deb, don't worry about clothes! There has been another death at the Barclay (that's the nursing home we call it the Barclay for some stupid reason when the actual title is Barclay Friend's and you also have to say it with a slight Thurston Howell III/Main Line accent too. I don't know why either, it's just what we do as a family full of accents) and the family of the deceased has given your mother all of the clothes so you won't have to worry about needing anything!" I nearly wet my pants I'm laughing so hard while I am trying to form a sentence and trying to picture my classy-dressing-sister wearing an 80 year old DEAD WOMEN'S MOOMOO. ( I have recently been reintroduced to the wonderful word MooMoo by my brother who used it as a description of a dress my sister was wearing that he obviously didn't like). Definition of a MooMoo; a large, usually bad floral, long billowy dress that is slightly nicer than a house dress. Now you are remembering what they are, aren't you? I told you that my Dad is a bad dresser. He has no concept whatsoever. I am a full believer that the good Lord above created woman for man in order to dress him! What is Dad thinking????? Now we have to sort through DPCs again before any of them go into my mother's closet and on her body!

Now, don't get me wrong, I am as frugal as can be. Okay, I'm cheap, I'll admit it and I'm proud of it but I draw the line at DPCs. There is something extremely creepy about the entire thing and I really don't think they are given to us out of the goodness of the remaining family member's heart. I really think that they are creeped-out as well and they are trying desperately to purge themselves of this haunting outer skin of their beloved mother, grandmother or sister, etc..... Eeeeewww is all I have to say. I am trying to come up with a one-liner response to thwart any future dreaded DPC drop-offs, but I have yet to come up with anything.

Monday, July 13, 2009

Lilies of the Field

"Consider the lilies of the field, how they grow; they neither toil nor spin..." Matt. 6:28-29. My mother taught me this bible verse about lilies. Hemerocallis, the daylily, were my mother's absolute, one hundred percent passion in life. She was a very well known horticulturist in the Chester County area and at the peak of her passion she owned 350 different cultivars (varieties) of hybrid daylilies which she labeled and dutifully kept immaculate records of their habits. She grew, tended to, and lovingly obsessed over these magnificent flowers all while teaching others about her passion for horticulture. This passion ran through her blood since her mother, also named Martha, grew and collected many cultivars of orchids. These stunning flowers grew in their back yard jungle of Panama. Literally, it was a jungle. They did have a backyard with some grass but then the jungle started. Iguanas, black panthers, monkeys, land crabs, boas, poisonous snakes and tropical birds were the norm for their backyard entertainment. My grandmother would gather orchids in the wild jungle and then cultivate them and sell them to local florists. I am told that somewhere else along the line another one of her relatives owned and operated a very successful floriculture business. No wonder I am so obsessed with plants; it runs in my blood.

The magnitude of Mom's love for these hardy plants never fully hit me until I stumbled across a small journal that my mother was keeping. When I say small, I mean there were only 4 entries. These are painfully powerful entries to read because she is writing them just prior to her second and more serious operation for cancer that had metastasized to her brain. She really does not think that she will survive this operation, although she never told us this, and she knows if she does survive it, she will be altered......forever. (She's always so right about such things. How does she do that?). One of the main themes throughout these short entries is concern for her daylily collection. What is most touching is the fact that she knew my horticulture interest was growing and so she gave me the honor of being in charge of what to do with these lilies. Her main request was to make sure that her dear gardening friends each acquire some of the prized bloomers. I really did not have a full appreciation for her lilies plus she had sooooooo many. Mom knew, even before this new diagnosis that something was not right and so she had already started digging up and giving to me some of her collection. Stupidly, I just did not know that she was growing something else; something unwanted. Brain cancer. Now I know why she kept thrusting these plants at me every time I came over to visit. I would say, "Mom! What are you doing? I really don't have room for these! Why are you getting rid of them?" I was not really ready for this in my own novice garden but I put them in a holding bed and slowly incorporated them into my landscape. Now, almost 20 years later, I walk out each morning in my pajamas with my cup of tea and my dog by my side to inspect what is blooming and make mental notes of my own garden. I am usually moved to tears when I gaze at these magnificent flowers. (What is wrong with me? I am always crying or getting choked up over stuff like this. It's just a flower for heaven's sake!) Not just any flower; these are my Mom's flowers. I know, I know, it's incredibly sappy and maybe even corny but I can't help it. Thanks Mom.

Thursday, July 9, 2009


I have yet to see any good that comes from cancer. It is such an awful disease that can sneak up on any unsuspecting victim. My siblings and I are fairly certain that we will be battling this disease at some time in our own lives. How could we not? Both of our parents have had it; Dad had colon cancer and Mom had breast and then brain cancer. Not to mention the nasty history of it on both sides of their families. I am so much like my mother that it scares me and I have the added "jinx" of being her namesake. Her mother, also named Martha, died of cancer too. I am not looking forward to what is ahead of me.

Mom's cancer came out of nowhere. She was a young 58. Seemingly healthy, incredibly energetic, slender and settling into her new roles as an empty-nester and a grandmother. I remember the day that she told me of her diagnosis. We were working in my garden (where else would we be?) and she was acting strangely. She would not meet my eye and there was an uneasiness about her. I couldn't figure it out. I don't really remember what happened next. I don't know if we were inside or outside, sitting or standing when she finally broke the news. I do remember that my life shattered. How could this be? I need my mother! Who is doing this to ME. Yeah, it was all about me. Stupid, young, selfish. I'm sorry for that now. She was so scared. I have never seen her that way and it scared me too. Mothers aren't supposed to be scared, are they? This is not fair. It seemed like we just got through Dad's battle with cancer. Mom had to handle that all on her own. My siblings were all gone, married or working and I was in college when that hit. She was all alone with that battle. She managed. Dad, although it was a horrible ordeal, survived!

They operated and it was not good. They removed one of her breasts along with 30 lymph nodes. 15 were cancerous. They said that it was very aggressive and they were going to treat it aggressively. And they did. The treatment alone nearly killed her. I went with her for all of her treatments. My mother usually only cries over things about which she is passionate. She doesn't cry over things that cause physical pain. She cried every time they put that awful needle in her hand to administer that awful drug that kills that awful cancer. It kills everything else too. Horrible.

She survived! Until it hit again. Good God it's only been 18 months since the last one! This time it was in her brain. By all rights, she should not have survived this one, but my mother is tough and she is a fighter. They operated and pulled out a golf ball sized tumor from the right side of her brain and then they told us that her personality may be altered. It was. They told us that her balance and fine motor skills would not be the same. They weren't. She's in a wheel chair now. Although these alterations were not visible right away, she slowly deteriorated right before our eyes. There are glimpses of the same Mom that I remember every now and then. She knows and understands us and can sometimes speak fluently but she just can't be a mom in the sense that I selfishly want her to be.

Mom always, always was an optimist. So much so that it could be irritating. Trying to be optimistic myself, I say that I am glad that she is alive today because she never would have known her grandchildren. This is so true, but what I really want is for her grandchildren to know her. They never will know her the way she used to be and that saddens me and my siblings terribly. It is up to us to relay those memories of her. We are trying!

Wednesday, July 8, 2009

My Handsome Father

He shuffles now. I'm not really sure when that started happening. I just know that he can't keep up with me anymore when I am walking next to him....or rather in front of him. No matter how hard I try to slow my pace, I seem to always be waaaaay ahead of him. Well, he is almost 80. That is so hard to believe. What's amazing to me about Dad is that he still has a presence about him. He is still a natural leader and people are drawn to him for many reasons one of them being his hysterically wonderful sense of humor. The man can make you laugh! He can work a room full of people like no one else. Maybe this is why his occupation as a sales rep fit him so well. Gregarious, charismatic, incredibly observant, witty and full of puns-this man is just plain fun. Even now, Dad can lapse into any accent imaginable while telling a story, joke or just talking. His repertoire includes: A stuffy Brit, a New York Jew, a non-New York Jew, a Southern gentleman, a Southern black man, a Swede, a Nazi-German, a regular German, Italians from New York, Philly and Italy, any Latino, any Asian, a person from India, an Amish man, and any US President that has an affected way of speaking! I'm sure there is more. I am just so used to it that I almost expect it when we talk. It is because of him, that we all (my siblings and I) tend to lapse into accents when we talk or tell stories but Dad is the king!

You could say that my Dad looks like Paul Newman. He has Paul-Newman-Blue-Eyes and beautiful Paul-Newman-Silver-Hair. He truly is a handsome man even at the almost age of 80! He and his identical twin brother, so I'm told by Mom, were quite a pair of lookers in their younger years. Apparently they had all of Havana (Cuba)in an uproar when the two arrived there to spend their summers studying at the University of Havana. That's how Mom and Dad met (this will be another entry at another time). Fluent in Spanish and a stickler for the proper use of the English language, Dad knows more things then I will ever know in my lifetime. In other words, he is extremely intelligent and has a knack for knowing the most trivial things. This always used to annoy me that I could never possibly know as much as he knows but now I realize why I love to learn so much-it's because of Dad. He is and continues to be intrigued by the world around him, by people and their habits and culture, by world history and local history.

Okay, so he's a bad dresser. This was always his problem but no worries, Mom was always there to pick out, buy and make sure he wore them appropriately. Why he would insist on multi-patterned outfits I will never know. Mom would just about die when he would come downstairs wearing plaid shorts and a striped shirt. She would gasp and say in a high pitched-annoyed voice, " Ken, go back upstairs and put on the shirt I bought to go with those shorts!" And then he would look at her and do his impersonation of a crazed husband cocking a shot-gun, aiming it and shooting it at her and then he'd say in a crazed-husband-who-just-shot-his-wife voice, "Gee Officer, I don't know how I managed to shoot my wife by accident." (this always made us laugh hysterically especially because he could make the cocking-the-gun-sound sound so real) Then he would change his shirt and the day would go on.

Thanks to Dad, my siblings and I all have this problem; we get ugly when we get mad. It's more like ENRAGED. We all scramble when we see the beginning signs. It starts with the bulging eyes and the popping vein in the neck, then it moves to the unusual skin color metamorphasis (see "Goodbye Garden...." for an example of my rage), but by far the worst is what can come out of his mouth. Let's just say it is not pleasant and I pity the poor wretch who forgot to take cover.

I will be spending time with him today. He visits Mom every day at the nursing home and so I will take them out to lunch at the local Medical office down the street. "Do you know they have a cookout on Wednesdays?", says Dad. That's where we will eat. It's an outing for both of them. It's sad to think that this is what they look forward to for an outing but I guarantee Dad will entertain us in the process. I look forward to this. I love my Dad even if his shirt will not match his pants anymore and even if he wears his slippers in public.

Friday, July 3, 2009

Transferring Mom

If anyone were to actually watch this event they would most likely cringe at the sight of three people stumbling, cursing, grabbing inappropriately, sweating and grunting as we try our best to transfer Mom into the front seat of Dad's van. It really is ridiculous, awful and hysterical all at the same time.
This is how it goes: The players-Marf, Scott, Dad and of course, Mom.
One of us usually wheels her to the passenger side of the car and lines her up at just the right angle so the chair is not parallel to the car nor is it perpendicular to the car-it's just at the correct angle (this will make more sense as I describe it- no it won't but I 'll tell you anyway). That goes extremely well. Unfortunately, it goes downhill from here.

Scott leans his butt against the front-seat-passenger-side-car-door and straddles the chair so that one leg is behind him and one leg is sort of in front of him so that when he hoists Mom into a quasi-standing position, Dad can quickly pull the chair out from behind Mom. This allows Scott to quickly move his back leg forward thus enabling him to not be off balance with the added weight of his victim...I mean Mom. Now, I am in the car, also in a quasi-standing position, but I am hunched over the seat with both hands outstretched ready to grab Mom's left leg and the back of her pants. This is the only time I am thankful that she has on a Depends because the bulk of the diaper prevents me from giving her a humongous wedgie. Okay, this is where it gets ugly. Usually, Scott, because he is off balance, can't really get Mom high enough into the seat so he is spasmodically trying to grab, hoist and prevent Mom from falling. Something about this sends me into hysterics, which is not good because once I start, my Mom starts and then Scott starts but he is holding most of the weight and then of course, he gets weaker from laughing and then Mom starts to slip and then he grabs her inappropriately....he grabs her BOOB. well, he's really holding her under her arm pits but his thumb is smashed against her one remaining breast ( we affectionately call it the uni-boob) Then I say," What are you doing?!!!! Stop grabbing her there!!" And he says," I can't lift my thumb or she'll fall!!!" Then because we are already laughing (Mom is laughing too so don't worry about her) and completely out of control, someone (Ok, it's Mom) farts. Why, oh why does this disgusting and embarrassing bodily function send any of us into childlike hysteria? (this immediately dashes all possibilities of me being an EMT because while my poor patient is clinging to life and I am administering some sort of medicine with a large needle, someone will inadvertently fart and I will begin laughing hysterically and uncontrollably while holding a dangerous weapon only to discover that I have now impaled my victim in the eye with the needle instead of the arm and now we have to go to the Will's Eye Institute!) I realize then, that something is really, really wrong with my family! Okay, I'm going to pause for a moment and tell you what Dad is doing during all of this. After swiftly removing the wheel chair from Scott and Mom, Dad goes to the back of the car and lifts the hatch. I yell to him that I'll do that but being the stubborn Barnett that he is, he folds the chair and lifts it the 3 feet off the ground to throw it in the back. Every time, he lets out a groan and a cry of pain because he has a bad back. After he does this, he walks to the front of the car to examine the condition of the duct tape that is ALL OVER the front bumper. In fact, it is holding the front bumper in place! To my Dad, duct tape is a wonderful invention. He uses it A LOT. Now, back to the idiots holding Mom: I am now sweating profusely because the combination of worry, hysteria and precariousness always makes me do so and to make matters worse, Scott's thumb is still smashed against MY MOTHER'S BOOB! After, tugging, pulling and shifting, Mom is finally on the seat sitting properly. Scott backs up, pants and wipes his brow and I come around to the front and tuck and buckle Mom in. I usually collapse my head on her lap ever so dramatically and tell her I am so sorry that my husband had to cop-a-feel of her breast. We laugh and she tells me that my hair is gray and I tell her hers is too. I kiss her and she thanks me (she's always so polite and sincere) and I shut the door. Dad usually says he needs to change some of the duct tape and thanks me too and backs the car up. Scott and I stand on the driveway and wave to them as they drive off. This entire process takes under one minute. We are amazed at how much duct tape is on the van.

By the way, did you know they make special vans that are equipped for handicapped people? All of the above could have been done with a simple push of a button. Why would anyone want to make their life easier? Besides, this was more entertaining!

Thursday, July 2, 2009

Visiting Mom

It's bittersweet when I go to see Mom. There is this sense of relief knowing that she is in a safe environment with all of her needs being met for the most part but I have pangs of guilt because I realize that she will live out the last part of her life here. It pains me to realize that I really can't take care of her myself. My Dad couldn't either. Neither could my siblings. Why can't we go back to the way things were when families built additions on to their houses and the aging parents moved in and lived out the remainder of their years watching the flurry of activity as a young family rushes through life raising their children? The Amish manage just fine. What's wrong with us?

I enter her room and she is in bed. I choose to go at night around 7 because that is when I can have her all to myself. My Dad isn't there, the aids have gotten her ready for the night and she is comfortably sleeping in bed. She's never really asleep and she always manages to open her eyes and see me before I even approach the bed. She used to do that when I was a teenager creeping in at night to tell her I'm home safe and sound. She always sensed me there before I even approached the bed and would startle me at how easily she could form her sentences and ask me how my evening was. I used to find it a little creepy, actually but now I find it comforting. Now she always says she's glad to see me and she asks about the kids and how my sweet husband is doing ( she always refers to him that way, she adores him). Thank God she knows me, we haven't had to deal with that yet. We always talk about my kids first and I fill her in on all of my raising-teenager-problems. I need her to offer me advice, but she is not capable of that anymore so I settle for pouring my heart out to her and letting her listen. She listens and she understands. She's just not able to form the right things to say. That's okay, though. We usually talk about Cuba and Panama. These are the places that are dear to her heart. She was born and raised in these countries and I love hearing all the stories about her life there. What is astounding to me is that she has moments of fluency and is able to say long sentences that include great detail. When this happens, I keep her going and manage to lapse into Spanish. She is fluent in Spanish, I am not, but I can carry on limited conversations and short phrases. She is able to understand and answer me in Spanish!? How funny the brain can be. We laugh and talk and joke. Thank God she still has her wonderful sense of humor.

It's time for me to go. I hate this part. I lean over and kiss her head and tell her that I love her. I catch a whiff of urine and old age and wonder when I will be like this. She tells me that she is glad I came and to come back soon. She never lays a guilt trip on me. She doesn't need to, I do it to myself. I walk down the long hallway listening to the faint cries of the confused grandmas and grandpas as they try to settle in for the night. I have yet to leave with dry eyes.

Wednesday, July 1, 2009

The Caregiver

What happens to people when the burden of care giving for a loved one falls completely on their shoulders? To be honest, it's a slow and painful death for the caregiver. Their world closes in on them, they become antisocial, they are constantly sleep deprived, their decision making is confused, anger sets in, people drop out of their life, their personal hygiene gets thrown by the wayside and substance abuse becomes an avid hobby. This is not their fault. It's just what happens. This is what happened to my Dad. He didn't mean for it to happen. He loves his wife and his intentions were so good. He did the noble thing and decided to take care of her all on his own. For better or for worse. In sickness and in health. It did get worse. Why didn't we step in sooner? We should have, but we didn't. We failed my mother and we failed my father.

Dad was from the generation of drinkers that always had a cocktail hour. It's just how it was in those days. When watching old movies with Bogart, Cagney, Stewart and the rest it is funny to see how the plots always center around having a drink. There is always a crystal decanter of sherry handy or a scene at some romantic night club where cocktails were the center of attention. Unfortunately, Dad's cocktail hour crept up to the morning hour and would sweep itself into the day. This was beginning to consume him all while he was caring for his wheelchair bound wife in a 5 bedroom 3 1/2 bath split level home that was NOT equipped for any handicapped person. Shamefully, I used to blame him. Now I don't. He really did what he could to take care of his wife that he loved so much. It was so painful for him and yet he would never ask for help. He was asking for help in a different way and we were unable to really see that until it got very bad. Now I realize that we were unable to fully comprehend many facts. One of them being that our strong father, the one who always planned and always took care of things, the one who never took risks ( "unnecessary exposure" is what he called it), the one who just finished caring for his mother who suffered from Alzheimer's disease, and the one who would never let anything get out of control ("If you want something done right, you have to do it yourself!"), was very sick and needed our help. Worst of all, the reality was hitting us head on: our parents were aging before our very eyes!

What does a family do when faced with this? There are many options: ignore it, deny it, provide help where you can, intervene. Unfortunately, these options were more like phases for us. It's so odd now when I look back on this nightmare because my siblings and I are so strong-willed, so opinionated, so willing to set things right. We are part of a non-existent club called Do-ers. We jump in and take charge and just DO IT no matter the risk-we get it done! It eats at us when we see something that is not right. Why were we unable to do this thing which was to intervene? We now had two sick parents on our hands. Dad was clearly having a mental breakdown and we were allowing it! What was wrong with us?!

So we intervened. It's too raw and too ugly to write or even speak about for now. The important thing is that we stuck together as a family, we cried, we leaned on each others strengths and we finally did the right thing for our parents that we love so much. It didn't come without a price. We suffered tremendously in the process. Our father, who was too sick in the head to know what he was saying, said some awful things to us but we were taught about unconditional love-tough love and so we persevered.

Now we are licking our wounds and we are healing. Mom and Dad are doing just fine in their hew homes. Amen!

Goodbye Garden, Yard and Pool

The decision was seemingly sudden and overwhelming but we all knew that it was time to move Dad out of the house that he and Mom have owned for over 40 years. Now that Mom was settled into a Quaker-run nursing facility, it was time to face the monumental task of packing and sorting (and burying-more on that later) the house with all of the memories and the 40 years of belongings.
With a stale bag of chips in my hand, I stood looking out over the yard and watched in horror as a huge bulldozer tore through my mother's beautiful gardens. My Dad's realtor had recommended that it would be much easier to sell the house if the yard/gardens and pool were leveled and buried. WHAT?! Dad agreed. And so it was done. I just so happened to arrive the very day this was happening. I was hoping to salvage something but quickly realized that I was helpless so I impulsively grabbed that really old bag of chips in the kitchen (Mom always kept them in a Charlie's Chip can but now they were hanging from a basket on a shelf) thinking I would find some sort of comfort. There was no comfort to be had. I kind of just stood there and watched and sobbed and ate those horrible chips.
I hated that bulldozer. It ripped and tore and dragged and buried everything. Doesn't it know my Mom worked so hard to create this peaceful landscape? Doesn't it know that we played Marco Polo and skinny dipped at night in that pool? What about the whiffle ball games and the smoked turkey that Dad would make? What is happening? Why is everything being buried? Dear God don't let my mother know that her gardens are destroyed! I will never tell her. Stupid bag of stale chips.
I feel very, very, very sorry for that man who stopped by the job (burial) site to check on the progress of his Bulldozer. I think, I'm not really sure, but I'm pretty positive that my eyes bulged, my veins popped, my skin changed color and awful, awful things came out of my mouth when I saw him. I'm claiming temporary insanity. It was bad. I remember him walking (actually he ran) back to his car and sped off. I did feel immensely better, though until I turned around and everything was gone: pool shed, pool furniture, trees, gardens, bricks, fence, gate, rocks......my childhood. Gone. Buried. What?! I'm so sorry Mom. I'm so sorry Dad. Stupid bag of chips.
I said my goodbye and left. I haven't been back-it's too painful. Memories are a good thing.

Feeding Mom

She sits next to me at the table with a plate of food in front of her and an extra large clothing protector (too many words, let's call it what it really is-a bib) around her neck. I have situated myself so that I can easily feed her while attending to my other guests and while feeding myself too-though somehow I have managed to lose my appetite. She opens her mouth expectantly just like my children used to do when they were so young and in need of my help and I quickly put something in her mouth hoping that she will not choke. I look into her beautiful eyes and wonder how we came to this point in our lives where our roles have been reversed. I try not to get lost in my thoughts but I can't help myself. My mother; this beautiful women who now wears unmatched clothing with food stains on them, whose hair is slicked back and not even parted correctly (who did that to her anyway? Please part her hair correctly!), whose shoes are ones she never would have selected to put on her feet-I could go on but selfishly what I really want to do is remember her the way she was before all of this.

She truly could light up a room. She was a natural beauty with a big, beautiful smile, a quick and opinionated tongue and an amazing sense of humor. She just had a way about her and people were drawn to her. Actually, people adored her. She was down to earth yet worldly and she had an uncanny way of sizing up any situation in a moment and being completely accurate about her assumptions. She was always able to feel exactly what you were feeling and yet comfort and offer just the right amount of advice. Although she never really fussed with her looks, she was always well dressed and usually wore lipstick (the only make-up that she wore, in fact). The one thing she was terrible at doing was disguising her feelings about anything. You always knew exactly where you stood with her and she would never mince her words. People respected her for that even if it got her into trouble on occasion. As her namesake, I too hope I can be like this, although I fall short in so many ways. I adore my mother and I am proud to be her daughter.

I wipe the unending stream of mucous that seems to flow profusely
from her nose the moment she starts to eat and continue helping her. Food on fork, open mouth, put food in, watch her chew, wipe her nose and mouth, give her a drink. She nods and thanks me and says she's glad she is here. I tell her that I am very glad she is here and then I turn and choke back my tears.