As I was pre-arranging burials, I wanted to do something special and unique for Etta. I began thinking of ideas and eventually designed a piece of jewelry. It arrived this week and is perfect. The company I ordered the piece from posted the story behind the design on their website. Kind of cool- check it out!
I have been in Richmond the last 2 of 5 days. In that time, I met with yet another elder law attorney, interviewed former neighbors with the prosecuting attorney in preparation for the criminal trial, and met up with Clutter Cleaners at the house on both occassions. I also handled some issues with my realtor related to preparing the house for sale. An investment company has made an offer on the house that I have accepted. It is now waiting for the final approval of the Commissioner of Accounts.
If you are looking for encouragment, skip this journal, I'm unloading some grief today... :)
As everyone knows, I wear my heart on my sleeve. More so now than ever. I can plug along tending to all of my responsibilities with the highest level of professionalism and efficiency as long as I have to. Unfortunately that energizer bunny in me can't run like that forever. I have noticed my emotional lows can be as predicable as an upcoming eclipse...we know when those are coming based on the placement of the sun, moon, and Earth. Some of my "eclipses" last just a few minutes before I return to my optimistic, sunny self. Others last for hours when the darkness of a days events or even a difficult conversation blocks the light within me. Those are hard times for they seem to last so long that I nearly forget what that light even looks like. Sometimes those dark times seem so dense that I can hardly find my way.
The seemingly mundane tasks that I have been dealing with in Richmond have been difficult. Not while I am there- I can get through almost anything. Sometimes, I process things as I drive back to Charlottesville and I'll cry the entire trip. Other times, I am too distracted by what's on the radio or conversations on my cell to process the days activities...so I fall apart later as was the case last night.
I find myself willing to go to Richmond for the chance to be at the house...one more time. I'm content to just sit on the front porch steps and think....and when raining, to sit in my car at the top of the driveway. I imagine how steep my brother and I once thought this driveway was...I look at an old concrete lion and remember that we said that was a hurdle when we raced across the yard....If I sit in silence long enough, I can almost hear the sound of splashing in the pool...I can almost smell homemade banana pudding...I can almost convinve myself all of this really isn't happening....
While in Richmond these last 2 trips, I saw the house being gutted. While there, I watched workers in and out carrying tubs of debris and with it, tons of memories of what was or what could have been. An offer to buy the house translated into another loss, another good-bye; things will never be the same, there is no turning back, no matter how tight my grip...no matter how much I try to will it differently.
Interviews with neighbors revealed how so many people were either suspicious or knew of the horror behind the walls at 1926. But they, like me and other family members, had their hands tied. They too were reporting their concerns to no avail. It seems many of us, at different times, were pouding on a brick wall for help when it took a ball-n-crane to expose what was really happening. I was touched by the concerns of others and grateful that they hadn't looked the other way...yet frustrated it took a catastrophy in order to make progress.
I found myself explaining what was perceived as my grandparents ill behavior as actually typical of the initial decline with dementia and alzheimer's. I wanted them to understand the disease like I do now. I found myself telling their former neighbors about how they are now- doing well, getting healthy, content, peaceful, happy. They are no longer fearful, defensive, even biligerent...because they are safe and cared for. I wanted so badly to convey who they are now so that perhaps this is how they will be remembered. I have heard countless times that my grandparents refused, quite loudly, any help that was offered to them in the months before their removal from the home.
These reports were initially troublesome to hear. Now, I get it. My grandparents were so unaware of their poor quality of life and the dangers of their environment that when someone offered a solution, they were absolutely insulted! I have even heard my grandmother say, "I have a beautiful house" or "I know how to 'keep house'." To accept help would have meant aknowledging there was a problem. They couldn't see it. The only person who could have helped or bettered the situation is now in jail for refusing to do just that. And though he must face the consequences of his negligence and though I am at times angry for what he didn't do, I am equally saddened for him. I can't imagine carrying the burden of his choices.
As I made my way across town to the realtors office, I thought about growing up in Richmond. I passed by my other grandmothers neighborhood and thought of her. I realized for the first time that I was with both of my grandmothers when they were taken from their homes of 50+ years. Seems unusual. For Etta, it was removing her from a horrific environment. For my other grandmother, I helped carry her frail body out of her room and into a hearse the morning she took her last breathe. This after 4 months of caring for her as she died from cancer. While I take pride in having these intimate relationships with these women, the pain of these losses and other losses still sting especially when I'm in Richmond.
Its a lot to take in. So, when I find myself struggling like I am tody, I can always find a thread of peace in knowing someone will light my way when I can't. God has always provided that for me...through this and other trials. I think of the incredible supports that have been placed along this path who have helped carry me...you know who you are and I pray God's abundant blessings upon you...
Something we can all take to heart...
A candle loses nothing by lighting another candle.
When we give of ourselves, nothing is truly lost.
When one candle lights another, its light is not diminished.
In fact, the light given off together is greater than the light of one.
Update of Etta & James:
James has recovered from his respiratory infection in at least his voice has returned to normal and doesn't have the nasty cold/cough symptoms. I have noticed a decline in his eating at mealtime. In fact, on Monday night, when dinner was served, he asked me if I would like to have some as he couldn't eat it all. That is a big change from the initial hoarding of food when he first arrived. I purchased an electric razor for James. I noticed he was getting little nicks when shaved by one of the nurses. Most likely a combination of cheap razors and not the most steady patient. I showed it to him...turned it on to let him see what it looks like in action and get familiar with its sound. When I noticed that he was due for a shave, I offered to shave him with the razor and he accepted. He was still, compliant, and even grateful when I was done shaving him. Again, I found myself almost dumbfounded by his acceptance and calmness...so different from his initial combative ways when he was first in the hospital. When I look back on that time, how confused and frightened he must have been...I'm so relieved that that was a storm that has long since blown over.
Etta, oh Etta, is every bit as much as the woman I have always known. As one of her former neighbors said, "She is not the most refined woman." Now, let me say this. I don't think that statement is offensive or at all derogatory. In fact, I laughed because it was so spot on. No, Etta has never been stuffy or fake. She doesn't conform to what others believe in order to gain acceptance. She is her own woman with her own opinions and the backbone to stand behind her convictions. I will concede there were times where her quick wit could have caused those around her to take pause, but I understood her. In fact, I would say much of my candidness comes from her. She was never one to sugar coat the truth- consider that a warning and gift. Because Alzheimer's causes those with the infliction to lose a sense of social norms and rules, her unrefined ways are even more apparent. I cringe sometimes as I can literally see the wheels in her mind spinning. Like a freight train coming down the track, I just know when something is about to pass through her mouth. And just as you can't stop that moving freight train, you can't stop Etta either. So, she says whats on her mind and like a mother of a 2 year old, I just smile and hope the damage is minimal. Usually Etta isn't saying something to someone else...but in her loud whisper, she will say something intended for my ears only but anyone on the unit actually gets the word too. I am reminded of a time when Hailey was a toddler and we were in Target. A very large woman walked passed our cart. Hailey took notice of her grand proportions and said, "Mama, is that lady growing a baby in her butt?" I was paralyzed with humiliation. I wanted to hide under a garmet rack or simply vanish into thin air. There was no way out, no way of pretending Hailey didn't just drop a huge verbal insult bomb. And so, I took a deep breath, dug a sucker out of my purse to plug her mouth, and forged ahead. It's like that some days with Etta...and its just who is she.
This whole journaling online thing has been wonderful as it provides an outlet for me emotionally and a way to communicate what is going on with my grandparents.
I recently learned how to check the statistics of my little site and was touched by the amount of traffic that comes through...who knew?!!?
I am curious who you are since I only see the number of visitors to my pages.
If you have a moment and don't mind identifying yourself, please leave a confidential comment (these are not posted on the site and are emailed directly to me) or send an email to email@example.com ....No need to write a lengthy response, you can simply just let me know who you are. Likewise, feel free to let me know how you heard about this journal or anything else you would like to share as it relates to these pages. I would love to hear from you!
Etta was ambivalent at best about getting her hair done this morning. I decided we needed to push through her insecurity about it today and get it done anyway. We took a walk first. She always clarifies that she isn't going to really walk if we go for a walk. Even when I help her transfer from her wheelchair to the bed or her recliner, she is quick to tell me that she can walk but that she ASKED for the wheelchair because it is "so convenient when running all around." I, of course, just agree...
When it was time to go to the beauty shop, Etta was clearly upset. She told me, "I'm not mad at you or anything, but I don't want to get my hair done, not today." This is SO UNLIKE her as Etta loves anything to do with hair, make up and jewelry...(and it clicks...must be where I got it from). I reminded her of how much she enjoyed it before...and then I tried to get into her mind. What could she possibly be worried about? I told her, "you know, Etta, getting your hair done here is really great because you don't have to pay a dime for it!" Ok, kind of, sort of true! I mean, I write the checks...To this, she was so happy. "Really? I don't have to pay today? What about tipping?"
...And like a light switch, I remembered our conversations of hair days gone by and pulled out my script...."I will stay with you...I will take you back to your room....You don't have to pay a thing...you aren't permitted to tip...I will transfer you to the sink chair and the dryer....I will ask her to make sure the water isn't too hot or cold...I will hold the towel up by your head so it won't run into your hair...Yes, James knows you are getting your hair done and he is ok....
I captured a couple of quick videos on my cell...Etta didn't know that I was recording her....she talks about how surprised James will be to see her and whether or not he will recognize her...
After meeting with the physician, we concluded that James' spitting up is not only upsetting to those around him, but causes anxiety for James to a degree as well. I have been trying to "train" him to use a cup or basin to no avail. Then, a lightbulb went off and I remembered seeing tissues everywhere at the house. AND, years ago, he always used hankerchiefs. So, boxes of tissues were planted by his bed and by his recliner just yesterday. When we visited today, I saw no evidence of the issue. Success! Yes, I admit this thrills me. We've tested and tried numerous medications and this simply came down to a routine way he handles this issue and he could not communicate that to any of us. By the way, it is thought that his constant spitting up is in part a form of aggitation as a result of the Alzheimer's and partly typical because he is missing several of his teeth. I will make sure the nurses continue to pass the tissues!
On that same note, I am concerned about James. He has been sleeping more and more lately. Today, when I arrived, I walked over to his bed as his undergarmets needed some immediate adjustments. He instantly woke up, rolled over to me, and smiled as he reached to hold my hand. As I prepared to greet him, he said, "I love you." This exchange is very typical these days and I embrace the authenticity behind the words. I only wish that those who have damaged or broken relationships with him could experience this too. When James spoke today, his voice was very strained and harsh sounding. I had not heard anything from the nursing home about him being sick and I had just been there a day before. I found a nurse who, before I could ask, told me that James has a cold and just started some antibiotics. Ok, I thought, a cold. No worries. He is being treated. And then, I looked down the hall and remembered the two grandma's that died this month already from pnuemonia. I couldn't help but make the connection. Sadness made my heart heavy.
I have thought about this more tonight, that is, the issue of James and Etta dying. Part of me is relieved that they will pass from this Earth in loving care and that they did not die in their home under such poor conditions. And part of me wishes there was enough time for reconciliation to occur with those who have maybe been hurt. But I know God doesn't work that way and that is why we are commanded to love one another. After all, it is easy to love a loveable person. Our challenge as believers is to love those that perhaps aren't so easy to love. That is what GRACE is about...what MERCY is about. COMPASSION. Are any of us really worthy anyway?
Our days are numbered. We just don't know when our time will come. We can't wait or put off reaching out to others. We can't hope they will reach out to us first. We have to seize those moments- for ourselves, for the other person. I feel like I have done that in this situation. As a result, I am overwhelmed, in a multitude of ways, by the place my grandparents have in my life now. While I often feel overwhelmed with weariness from the complexity of the situation, I am equally overwhelmed by the love and grace that is demonstrated everyday through my interactions with James and Etta. They can certainly be challenging at times, but they have ALWAYS returned to a level of peace and trust when just a little bit of patience and kindness is extended. I would venture to say we all have someone in our lives we could extend a hand to? Take the first step towards reconciliation....don't wait another moment.
I traveled to Richmond in the pouring rain this morning to meet the Clutter Cleaner guys who were scheduled to purge the house today. Since it has been vacant for nearly 3 months now, it seemed like the next right thing to do. It hasn't been listed for sale yet as I just got the city to reasses the house and also got an independent appraisal done. It is worth very little above land value.
When I arrived, I learned that there was something very wrong. I could see it on the face of the crew from CC. The house had been burglarized and ransacked. Sure, the house had been condemned by the city so you might be questioning what difference this makes. Seeing mattresses toppled over, drawers thrown across rooms, papers and trinkets canvased throughout every inch of the floor is upsetting, even in a condemned home. To walk through the house crunching on glass was like pouring salt in a wound...it's a scab that is scratched again and prolongs healing. I took it very personal. It happened on my watch and I am supposed to be the protector of them. I KNOW this is not reasonable or rational but its how I felt. I felt angry...angry that someone would destroy what I am working to preserve of their story, their lives, at 1926. Thank God this would be yet another chapter that neither James or Etta would never know.
The police arrived moments after my call to 911...though they didn't know what to do. In fact they asked me, "What would you like us to do?" They were not concerned in the least bit. They asked me if anything was stolen. I just shrugged my shoulders for the words that flooded my mouth would have been rude and wasted. What I wanted to say was, "I don't know. My grandparents couldn't tell me even if they were here. They can't speak for themselves. They can't remember what they had for breakfast let alone what should be here.
Instead I said something like this...Another crime happened here so I called the police. Isn't that what I am supposed to do? A citizen reporting a crime? Isn't it your job to respond...be concerned...at least appear that way?
When they felt it was not necessary to file a report, I insisted on some way of documenting the crime. Otherwise, I would be ignoring what happened at 1926...I would be looking the other way....and that can and will never happen.
Over the next two days, the house was purged of all contents. Many precious family photos were recovered in the process. Many dating back to the late 1800's...many capturing my grandparents courtship, early years of marriage, and the childhoods of my uncle and father. I also came across numerous letters I had written to Etta over the years.
Right before I got married, I wrote in a letter...
"You have been more than a grandmother to me, you have been a girls best friend. You have been my confidant and my source of confidence. You are a picture of beauty to me."
In one, written in 1997, I expressed concern for Etta's health as she had evidently not been feeling well. I wrote...
"I can't wait to see you at Christmas and I hope you feel better then than you did at Thanksgiving. I know you don't want to burden me by telling me if something is wrong, but I love you and I always will...."
Reading this letters brought back so many wonderful memories...and I found myself even asking the question, "What difference does it make (the burglary)? For what is valued most was captured in these letters and photos....AND no one can take that away....
Sometimes God has to hit us upside the head to get our attention. I know that is His M.O. with me. On my way to the nursing home this morning, I stopped to buy one of those mini steam machine contraptions. I won't bore and disgust you with the details but one of the recliners in my grandparents room required some deep cleaning. My goal was to get this thing bought, take Etta to her hair appointment, and then clean the chair while they are eating lunch. As I passed the little beauty shop, I poked my head in the doorway to let the beautician know I would be right back as I was going to go get Etta. To this, she told me she could not get to Etta until this afternoon. Confused, I questioned this as I had made an appointment. She then informed me that it was "first come, first served". Hmmmm. Well, seeing as she is locked in a dementia unit, she couldn't have gotten there ealier than the appointment time I was given. --Deep cleansing breaths---. I pondered the situation. Certainly I couldn't be here all morning and afternoon. I told myself, IT IS WHAT IT IS...and I began working on letting it go...
I proceeded to walk down the hall to Etta's unit. I could heard the sound of a piano and the singing of some good 'ol church hymns. As I turned the corner, I saw Etta sitting there with her hymnal packet in hand focused on singing along with the room full of other residents and guests. I unloaded my full hands and pulled up a seat next to her. I surveyed the room as I listened to the music and was flooded with emotions (yes, once again). Hardly anyone required the song sheets and nearly everyone was singing. I leaned over and kissed Etta's cheek when she took my hand into hers. Ok, Lord, I thought. This is FAR BETTER than getting a perm!
And we sang...
T'was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.
Through many dangers, toils and snares
I have already come;
'Tis Grace that brought me safe thus far
and Grace will lead me home.
In an effort to hold back the tears, I looked away. My eyes fell upon Joyce, an elderly woman on the dementia unit. While she wasn't singing, she seemed so peaceful and so focused on the message in the song. No one visits Joyce. Not that I have ever seen. I wondered...does Joyce believe these lyrics? In that moment, I exchanged my grief for the burden of Joyce and I prayed silently for her...
The Lord has promised good to me.
His word my hope secures.
He will my shield and portion be,
As long as life endures.
Amazing Grace...How sweet the sound....
My grandfather has been deaf as a doorknob for as long as I can remember. When his hearing began to decline, I'm guessing the whole idea of wearing a hearing aid didn't exactly coordinate with his powder blue three-piece suit and white patent leather shoes. He never wanted to admit his hearing was an issue for that would mean admitting he was indeed aging with the rest of us. Fast forward 3 decades and the man can't hardly hear a thing. Though I have to admit there are times that I question this...there are times when he follows my directions just perfectly. Grantid, it took a half dozen attempts and my best attempt to use some poor form of sign language (more like Charades). Nonetheless, if I could find a way to restore even a portion of his hearing, that would be so wonderful. Here's the hitch...there aint no way he is going to cooperate for a hearing test. I shake my head even typing about it. Maybe, on a really good day, and if I brought chocolate, I could PERHAPS get him inclined to do it...but I am not feeling confident about it.
I researched some options online...alternatives to the "raise your hand if you hear this" test. Seems there is a test that measures the brain activity of hearing. I was interested to learn more. Also, instead of the traditional hearing aid, there is an option of an implant. I was interested in this for sure. I read more..."It is a surgical procedure". Well, perfect...put the man to sleep and he'll wake up hearing the birds chirpping outside the window. Not that easy. The audiologist won't administer the test outside the hospital. If you don't recall his reaction to the hospital in July, you can go back and read about it. I can't do that to him again. Ho-hum.
I asked the social worker at the nursing home about other doctors in the area who could perform this test at the nursing home. I was told she would look into our options and get back to me...If I have options, I will figure a way to make it work...
James was pleasant as a peach again today. He was napping, though stirring, when the nurse needed to take his picture for the file. I nudged him gently and he looked right at me. When I extended my hand to him to help him sit up, he followed my lead. After smoothing down his hair, he smiled for the camera. Later, he helped me sort hangers and cooperated, without a fuss, when I needed take care of some housekeeping issues in the room. It was so nice, really very nice.
It's still so hard for me to believe, to even begin to comprehend, how someone could let these defenseless people starve, go without bathing, sit in their own waste, allow their home to deteriorate to a complete loss, and regularly take their money...It is beyond me and breaks my heart. I thank God that was not the end of their story and that they have the opportunity to live in comfort and peace without a worry in the world.
Pluggin' away on the administrative aspect of being both conservator and guardian for both of my grandparents. How is that I continue to "plug away" and yet it feels like I am walking in circles. It can be so frustrating. There are rules that I must follow as guardian and conservator and then rules that I need to consider with Medicaid coverage right around the corner. For example, I had the house reassessed by the city. The new tax assessment is $17K higher than the appraisal value. I can sell the house at the appraisal value and satisfy the commisioner of accounts in Richmond. However, if I sell it for less than the tax assessed value, Medicaid will penalize my grandparents and their eligibility will be impacted. Though, I kind of wonder, how could they be penalized? What more could be taken from them at this point? Hmmm....really....
Mike and I delivered a new lift chair to Etta tonight. James already had a recliner given to him by a new friend I met after moving to the Laurel's. Now, Etta has a similar chair in the "lift model" so she isn't confined to her wheelchair all day. She told me it was comfortable and that she will enjoy resting or watching TV in it when she is "not busy socializing." She told me that the three men from Chestnut visited today. She said, "They "were all over me today...wanting me to run around with them!" She added that they went to the main dining hall where "someone pounded on the piano". She said she "sung as loud as possible and even danced a little too". I think she cracks herself up! She gets so much JOY out of these little outings to the other wing of the nursing home. It is such a gift to her...and such a gift to me. It warms my heart to hear her talk about her encounters with "the three men".
James continues to be content, especially with the new TV Mike installed in their room. While the doctors have treated him for reflux and allergies, he continues to spit up constantly. It is so disturbing and I pray that the problem can be identified soon so we can treat him appropriatly.
James has become very particular and likes his room tidy and to remain the same. At one point, I had moved his chair just a wee-bit to clean up some spit (yuck) when he directed me to move it back. Playing along with him, I budged the chair slightly. He directed me to move it more. This went on a few more times before I gave in and put it exactly where it was. It then seemed to click in his mind that I was playing with him and he looked up at me and smiled. Then, as clearly as I could, I looked him right in the eyes and said, "You sure are bossy!" He got a great laugh out of this. It was so nice to have that little exchange with him and to hear him enjoy a little chuckle...
So, as we all drove home after our visit with James and Etta, I was so tired. When I noticed something peculiar on the side of the road, I asked Mike about it. When I was mistaken by what I thought I had seen, I exclaimed, "I can't see anything without my shoes on!" HYSTERICAL! I will NEVER live this down! Mike then responded with, "Am I going to be checking you into a home next?" I have no idea where that came from...and just to answer the question on your mind, NO, I have never used drugs in my life....LOL. I am simply tired and my brain is usually fried by the end of the day. It was funny and I know I will hear about it many more times...Ahhhh. I can't wait to tell Etta about it. She will get a kick out of it.
Tomorrow is nail day...I am excited to bring Etta some new color options. The nail thing is perfect for our visits. There isn't always something to talk about and this activity seems to help with those quiet moments...I told her I would try and come in the morning so I could do her hair right after she gets her morning bath and hair washed.