"Who Am I"?

I must say, it's good to be back blogging about something other than myself. As most of you may know, I was diagnosed with breast cancer in late May of this year and have been fighting my own battle of survival. Presently, I am in radiation. The 16th treatment out of 35 has already been offered up this morning and I am looking forward to what lies ahead for me in the coming months. I am a Christian and have faith in a God that can conquer breast cancer, dementia or anything else He chooses, the grave just happens to be a specialty of His! Due to my situation, I haven't been unable to visit mother at the home as much as I would like. Recently though, I have been trying to get back on schedule as much as my physical body allows. Today, my daughter Hannah and I went up for a visit. As I meandered down the hall, in search of a tiny little silver haired "mother" I could feel the excitement mounting over my eyes meeting her eyes and hearing the words, "There's my Jean!" The reality of it all, was that I would find a mother who had no idea of the person in the black cap, walking her way, who had been her daughter for some 60 years now. As I grab hold of her wheelchair and turn her around, she questions as to who I am. Several weeks prior, I had stopped in for a quick visit and discovered mother talking with another resident. As I interrupted their conversation, I could clearly see that mother had no clue as to who I was. I said, "mother, do you know who I am"? She replied..."are you 'I am'? The lady who had been talking to her informed her that "I am" was not a name and that she should know better. We have finally arrived in the front sitting room of the home, which has always been a favorite of mine ever since mother came to reside here. I am anxious to "park" her chair and began a conversation. My first question is always..."Do you know my name"? I'm not sure of the need here, but it is an ever present one that I can't seem to eliminate from this nightmare of dementia. I suppose it is a well known fact that each of us as children, whether young or old, yearn to be loved and known intimately by our mother. She looks at me with bewilderment and says, "Did you know that I've quit school"? A little surprised at the change of subject, my daughter and I break out into laughter and play along with her. It has always bothered mother that she never finished high school, when the twelfth grade was being offered the year she quit and got married. She continues on with, "And do you know that daddy and my stepmother, didn't say a word one"! With plenty of laughter to fill the room, I can plainly see that mother will never realize today, who I am and that I have brought her youngest granddaughter Hannah for a visit. There are many things that one must come to terms with when a loved one is in a state of dementia. The probability that they will eventually forget who their children and grandchildren are, is a given. Today, I realize that the time has come sooner than I wanted it to.

"The Good Times"

I suppose some of you who have faithfully followed this blog, and the shenanigans I experience with my mother, have been wondering why I haven't written in a while. For several months now, I have been dealing with a "monster" of my own, not dementia, but breast cancer. I have had no desire to write about the terrors of dementia, while I am living my own terror. I know to some, this may sound selfish of me, but thinking back to the years passed that I have given all that I had to give of myself to my wonderful mother, for now, it has to be about "me." My mother is as happy as she can possibly be now, spending her days in the home, rolling up and down the halls, supplying everyone she sees with a good laugh. I have been in chemotherapy for several months now, and only visit mother when someone can be with me to go in and bring her outside for a visit, for fear of getting sick. To say I miss her, is putting it mildly. Reading some of my blogs about the "times" she and I experienced has brought me to tears. I will never forget the days I shared with her, nor will I ever regret them. As I have written many times, this woman was my hero, my confidant, my best friend. I will always cherish our memories together. I would just like to encourage each of you who has a loved one with dementia. Please, don't tell yourself that there's no use in visiting them because they won't remember. I have learned that the visits aren't so much for them, but for us. Try to remember the good times that you've shared and know that they aren't responsible for their words or actions. If all goes well with my treatments, I should be back to spending time with mother as before. I will try to continue writing and sharing if you want to check in around the first of the year. God bless each of you who give of your time and energy, but most of all, "yourself" as a caregiver.

M-O-T-H-E-R

With only two weeks away from Mother's Day...I know that I will find myself unusually busy and sit down to type a few words that would give my mother justice for the occasion. My youngest daughter will be graduating next week with a Master's in English. Many sacrifices have been made in order to afford her the needed tuition and then some. My mind goes back to all the financial sacrifices my mother and daddy must have made for me and my siblings as we were growing up. Not wanting to go to the store and buy a ton of groceries this morning, I take inventory of items I have to prepare an OK lunch for my husband and I. I see that I can easily make some egg salad sandwiches with chips on the side. As I stand peeling the eggs, I think about all the egg salad and grilled cheese sandwiches my mother made for all of us through the years and wondered if it was because of the convenience or the need. I remembered back to all the groceries, clothing, gas money, gifts that she made sure my family and others had plenty of. I recall a day when she fist married my stepfather Yates. They had come to pick me up at my house for a trip up to my sister's who lived in another town. I had just received my bank statement in the mail and was attempting to balance my account. Our son had just entered college and things were a little tight around the household. Frustrated at an error I had found in my statement and leaving me with a little less than I had originally thought, I jumped into the car feeling anxious. As most mothers do, she took one look at my face and asked "what's wrong?" I told her the details and before I could finish she said, "Wait a minute!" Don't you know that I have plenty, and if you have a need all you have to do is ask?" So many times, she has been there for me. Even though she is alive; she breathes, sees, talks, laughs, and moves, the part that once was my mother is becoming further and further away and I miss her; I long for her. I will never forget my mother for the giant of a person she was and attempted to raise each of her children to be. The following poem was given out in my church by a dear sweet lady, years ago. I've kept it in my Bible and would love to share:... "Your Mother"... Your mother is always with you... She's the whisper of the leaves as you walk down the street;...she's the smell of bleach in your fresh laundered socks;... She's the cool hand on your brow when you're not well... Your mother lives inside your laughter, and she's crystallized in every teardrop... She's the place you came from,... your first home;... And she's the map you follow with every step you take... She's your first heartbreak... and nothing on earth can separate you...Not time...Not space...Not death!

"Just What I Thought!"

Note: I chose to write this post in the first person...based on things my siblings and I experience at each visit with with mother, along with info that friends and workers at the home have shared with us. I open my eyes this morning and see the sun coming in the window. I know that my stepmother Normar will soon call me for breakfast. I wait, but she never calls. I guess daddy is already up and in the field. It seems like a long time since I've seen either of them, but maybe they'll come see me today. A strange woman comes to my bed and calls me by my name "Margie" and asks me if I'm ready to get up. I notice that someone is sleeping just below the foot of my bed, but I can't make out who it might be. The woman helps me sit up in bed, changes my clothes and tells me that breakfast will soon be served, I don't think she's Normar. It's been a long time since any of my people have come to see me. I wish I could go home. I think I'll wheel on up the hall and see if I can find my husband, Yates. Some of these old people here get on my nerves, but the Bible says that we'll all be old one day and to be patient with them. I know what year I was born, but I'm not sure of my age. I can't be over 40 years old though! I do remember having children, their names are Doris, Jay, Sue and Jean. I hardly ever see them anymore, I guess they don't know where I live now. Somebody was telling me just the other day that they come and see me often, but I sure don't remember them being here! My left groin area has been hurting me for a long time now; it gets better, then it hurts again. I'm going to steer pass this old woman, I believe her name's Edna. She's always telling me I'm crazy, but she's the one that has to walk with a walker and I get to ride in a chair, I think she's the one that's 'crazy!' There sure are a lot of people that live in this place, most of them just come and go, don't care to knock when entering. I don't know what to think about people just sailing right through your front door and not even speaking to you. They ask me if I want to play bingo, shucks, I used to go to Myrtle Beach with Bryson and my children and play Bingo all the time. I could probably play Bingo circles around most of them! I'll just roll in there and watch for awhile, then I can leave when I want to. Nobody is the boss of me here. I believe I spot Yates over there, I think I'll go see why he's not over here with me! "Yates honey, what are you doing?" He pushed me away and told me to leave him along, why Yates has never talked to me like that! I sure hope daddy comes today, he might be sick or something, or maybe he's just working and will be here later. There's somebody walking up the hall that looks familiar but I can't see her too good. It looks like my daughter Jean, I better roll on up there and investigate. Yes, it is! "Well, who are you?" I say, she says she's 'Santa Claus!' maybe she'll take me to pee. Instead,she's taking me up the hall, I might get to go home with her. "Jean, let me ask you something, have you seen daddy?" She told me that she had just talked to him and for her to tell me that he loved me and he'd be up to see me soon. That sure never sounded like anything John Williams would say, if he ever told me he loved me, I sure don't remember it! It looks like she's leaving now, I wish I could go with her. Maybe I can out wheel her in my chair. No, she just walked out, foot fire, I'm too late. I guess I'll just roll on up here and sit at the door, maybe daddy will be here in a little while... I have created you and cared for you since you were born. I will be your God through all your lifetime, Yes, even when your hair is white with age. I made you and I will care for you. Isaiah 46:3-4

"Move Over George!"

I recall reading an article years ago about Retired Supreme Court Justice Sandra Day O'Conner's husband being stricken with Alzheimer's. The family had placed him in a care facility and while living there, he had found "another love." The article went on to read that this scenario with Alzheimer and Dementia patients was very common. While most Alzheimer patients lose cognitive abilities and experience mood changes, their need for relationships, remain. If there has been one thing consistent with mother since she has been living in the nursing home, it is that she longs for someone to love and care for. I have seen several of these "pursuits" come and go. I am usually informed of mother's "intended" by staff members, while visiting. I have even caught myself being especially polite to a few, as if I was meeting mother's new boyfriend for the first time and having a need to make a good impression. Today, I have come for a visit, and receive news that mother has a new beau. As I roll her down the hall to sit in the front room, I notice her wearing a round pin on her shirt that says "kiss me!" I wonder if every resident is wearing a pin like this, or has my mother earned the honor! As I wheel her into the sitting area, I notice a very tall man, with a not so becoming hat pulled down over his ears, coming near. Mother glances over and says, "come over here honey so I can hold your hand." I whisper to mother to be quiet, that she doesn't even know this man. She looks at me like I'm crazy and says "O yes, I do, I love him. It doesn't take me long until I'm on my feet and wheeling mother back down the hall again. One of the nurses is headed the same way and walks alongside us. The nurses and staff here at the home have become very familiar with mother and her needs. I feel so comfortable with them as they care for her. I begin to share what has just happened with the nurse, she smiles and tells me how mother brightens everybody's day at the home with her funny words and doings. She encouraged me to look at my mother in a different light; she's happy, living, and to try to embrace the joy that she receives from these little relationships. I must say, her words have stuck in my heart and mind. Why is it that I would want mother to roll around the halls all day of a place where she has not chosen to be, but has to be, and deprive her of having the one thing that can make her feel alive, love. When you think about it, I suppose it's like the songwriter said, "Love makes the world go round!" And you never know...one of us could end up in a home with George Clooney some day!

"Wrong Answer!"

It's a Wednesday night church service and I have sat down to the back of the church in my usual seat. I see a friend of mine and fellow church member making her way back to me with a funny look on her face as if she has a story to tell. Her mother is a resident at the same nursing home as my mother, so any time I see that face, I know I'm in for an amusing story about mother. She begins by saying that mother was really confused yesterday when she was up visiting her mother. Apparently, mother had mistaken my friend for my older sister who has been in Heaven now for several years, and her husband for my sister's husband. She continued the story by saying that Mother had rolled into the room and read them the riot act, calling her husband some unwanted names that even I won't repeat. One other thing she mentioned that mother was doing was rolling up to the front door of the home saying she needed to go see her daddy and causing the door alarm to "beep". This can get a little bit annoying if someone continues to do it over and over again. Not wanting mother to be a bother to those working at the home, I was in a rush to drive up the next day to see if there was anything I could do to make mother stop "fixating" about Grandpa! Several months prior, mother had her daddy on her mind and tongue, continuously asking, "Have you seen daddy" and so on. I knew from experience, that mother can't remember anything you tell her within 5 minutes or less, but thinking that she may stop talking about it if I confided in her and told the truth, I pulled her to the side and told her ever so gently "Mother, your daddy passed many years ago." She made a few comments and seemed to be accepting. For the months to come, her inquiries of Grandpa were few, until now! Thinking that since it worked last time, it may work "this time!" I roll mother up the hall and into our favorite sitting room. She begins the usual, "Have you seen daddy lately? I wonder what he thinks about me stuck up here and not coming home!" She went on and on. I said "mother, do you know how old I am?" Her answer was pleasing to me, "twenty-five, I guess" she said. "No mother, I'm 59 years old, and your daddy died when I was 9 months old!" She looked up at me with an angry look and said, "Lord Jean, you don't mean he's dead?" Thinking I just might have done the wrong thing, she begins saying "well, who else is dead? I tell her, "Let's talk about some pleasant things mother!" She continues saying, "I can't believe he's dead!" A worker comes into the room to clock out and mother calls to them, saying "Jean says my daddy is dead!" Suddenly I feel like I have made a worse than huge, mistake. I try every trick I know to get mother's mind off of the "stupid words" I have delivered, but time after time she would go back to "I can't believe he's dead! It's been 3 weeks now since this incident. I have heard reports on every visit that "someone has told your mother that her daddy is dead! Not wanting to get nailed, I say "O my goodness!" I have tried to reverse my mistake on every visit by answering her questions with, "no he's not dead, I just talked to him this morning mother!" As I enter the nursing home today, a long time friend and relative who is a resident at the home as well, but is very about himself, sits in a rocker just outside the front door. I say hello, and he calls me over. "Your mother has about drove me crazy wanting to know where her daddy is, I believe somebody told her he was dead." he says. I give a look of surrender and say, "Yea, somebody told her that, not thinking she'd remember it." With a guilty conscience, I continue on inside. I see mother just ahead in her mode of transportation headed for the front door. I call to her and say "come sit with me for awhile mother." This stops her in her tracks as she rolls over towards the sitting area. It's not long before she begins the usual. "Have you saw daddy lately, I bet he wonders where I am?" I never thought I would be tickled to hear those words, but it was telling me that she had finally forgotten the horrible news I had given her weeks ago. She now thinks Grandpa is alive, at least for now! Excited of the question, I say, "Yes, I just talked to him this morning and he was headed for the field!" Mother looks at me as if I'm lying and says, "Why I don't know what he'd be doing in the field this time of the year!" I said, "I guess plowing!" She said "I wonder what he's planting?" As I sit with her, making it up as I go, I become an accessory to her demented world. Even though it's still hard for me to play this part, I will do and say anything to see that smile on my mother's childlike face when I say, "I called him this morning and he said to tell you he loves you!" God Bless my precious mother and all those who are trapped in their world of dementia.

"You Can't Go Home Again"...Or Can You?

As I pull into the parking space at the nursing home, my mind races ahead to visualize just where I will find my mother. Stopping by to find mother in her designated room, is not realistic. She will either be traveling up and down the halls, sitting in on somebody's conversation, or parked in someone else's room. Today, I head down the hall and just as I round the corner, see her turning right to head up another hall. This event reminds me of the old "Pac Man" game, as to where the little men race around the screen, turning corners as fast as they can before being devoured. I finally reach mother and see that she is rolling beside a very tall gentleman who is unfamiliar to me. I take hold of the back of mother's wheelchair, the man looks at me and says..."do we know you?" I reply, "this is my mother." I am perplexed whether mother's new found friend is a resident or just someone visiting there as he is wearing a nice white shirt and slacks. He looks at me again and asks, "do you know me, I need to get on home?" The mystery has been solved, he is a resident indeed. Mother hears our conversation and being that I am behind her, inquires, "is that you Jean?" I tell her that it is and that I am taking her to the front room for a visit. She becomes adamant about the gentleman coming with us, so I agree. I park mother just beside me as the man remains standing in the middle of the room. Mother ignores my boring comments of "whatcha' been doin'?" and "it's really cold out there!" instead, she is watching every move her new found friend is making and calls to him to come over. He states that he needs a coat if he's going to try to walk home in this weather. Mother replies to his words by saying that she has been needing to go home too and see her daddy, but Jean won't take me! In more than one of my blogs, I have told you of mother's different homes, some real and some imaginary. I have a need to know just which home she is referring to, so I ask her to take me there in her mind. She laughs and gives the look as if she's remembering and has arrived there. We begin our journey. "What does it look like mother?" I ask. "Well, you know there's a whole bunch of mailboxes up there and the cemetery's just to the left," she says. I now know, that she is at her childhood home on Skyuka road. She directs me down the drive and to the front of the old Williams' two story white farmhouse which has been demolished for many years now. "OK, we're stepping up onto the front porch, what do you see?" I say. "Well, right there's the swing and some chairs. Let's go in," she smiles. "Tell me what it looks like in here," I say. "Just go on back through to the kitchen, but turn there to the right and you can go into Daddy and Normar's bedroom, right there on the left is the stairs to mine and Ralph's room," she remembers. As a child, my sister and I would visit many times in this old house. Grandpa John died when I was 9 months old and of course grandmother Hannah died when mother was three. As I've told before, the only mother our mother ever knew was her stepmother, Norma Williams, who was very good to her and raised mother as her own. A favorite object for me and my sister, was a musical, dancing ballerina jewelry box, which set on a small vanity belonging to our Grandma Normar, containing a play gold ring adorned with 3 tiny orange carrots on the front supposedly signifying how many "Karats" it was worth. Sister Sue and I would slip and try it on every time we visited. Upstairs was a tiny white box, hidden out of sight that only snooping grandchildren could find. It belonged to my Grandpa and inside, held a fake pile of "poop" just so little girls could giggle by seeing it. As to how he acquired this prize, I have never known. I often wonder of it's whereabouts to this very day. Our "sentimental journey" is suddenly interrupted by the gentleman telling us that he's going to walk on down town! Mother seems annoyed as to the abruptness of the departure from her childhood home, but tells him to "put his coat on,it's cold out there!" It's getting late and I must go to "my home." I guess when Thomas Wolfe wrote that "You Can't Go Home Again" he wasn't talking about my mother!