Tag: dementia

late night ramblings

My dad was a writer. Not in the traditional sense. I mean, he never published a book, never had a movie made, never came up with an amazing script for the theater. No, his writings were more about his reactions to the world he lived in. They were published, but usually by the local weekly paper that came out in our small town of 3,000 people in the northwest corner of CT. And, generally, you would only find them in the letters to the editor section.

When I was growing up, we had a set of stairs that led from the kitchen to the hallway right outside my room. A typical night for me would be to fall asleep to the smell of cigarette smoke, the sound of ice cubes clinking in a glass and the tap of typewriter keys as my father collected his inebriated but highly intelligent thoughts into some kind of coherent response to any perceived attack on reason and intelligence in the community. The subjects could be anything from local politics to the Viet Nam war to local art scene…you name it, if he felt that someone was wrong, he would try to correct them.

Dad was a guy who could do the Times crossword puzzle in ink. He loved word games…especially Scrabble. In fact, it wasn’t until he was in his late eighties that I consented to play Scrabble with him, it wasn’t until then that I was mostly able to keep up with him. Words were his life. He reveled in stringing words together to create a meaning that was hidden to most. Ironically, he never graduated from college. This did not stop him from finding wonderfully creative ways of writing scathing responses to the world.

As I sit here with a glass of wine in front of my computer, I am reminded of those nights when my sense of security meant knowing he was at the bottom of the stairs, thinking and typing. I miss his presence, the knowledge that he was going to make things right with the world. That he had a voice and wasn’t afraid to use it. His presence was always larger than life, his printed word seemed larger.

These days I wonder what that voice would be saying about our world. I wonder what words he would carefully choose to describe the insanity of the world we live in right now. How many pauses in his typing would happen while he would take a drink and  deliberate on the exact right word that would so subtly and yet so blatantly show his disregard for everything that is going on in Washington. We live in a time that lacks the creative use of words. There is no time to consult a thesaurus when tweeting. There is no time to read a more than 140 characters, to really delve into a subject. We are a nation of plain speakers, where WTF and OMG and ROFL have become the new way of speaking.

Don’t get me wrong, there are times that plain speaking is necessary. But I miss the wordsmith days, the days when you had to use your brain to decipher all the different meanings, innuendos and ideas that a sentence could contain. Because that requires critical thinking and reasoning, something that is sorely lacking these days.

My dad is still alive. He will be 96 in August. Before you say “Wonderful”, please remember this: he has lost most of his words. Dementia has stolen a good portion of his ability to construct a coherent sentence. Conversations are now a struggle, not only in terms of words but in terms of attention and focus. But when he is at loss for just the right word, his brain still can pull out a treasure that makes me smile. And he still can play a pretty mean game of Scrabble. Just don’t let him keep score.

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Dad and my brother Tom on dad’s 95th birthday

 

release

Here are some comments made this past weekend by my father.

“I think it’s time for me to come back to civilization.”

“I keep thinking I’m in Florida.”

“What town are we in?”

“Who are those people outside?”

“What is my nurse’s name?”

“Where are you living?”

“Where have you been? I’ve been pining for you. Where have you been the past two days?”

“Where are you from?”

“How far away is that?”

“Do you have children? How old are they?”

“Who are those people outside?”

“Who was that man? I know him very well but I can’t remember his name.”

“Have you seen the head woman? What is her name again?”

“I think in my 95th year I’m going to retire.”

 

I think you get the picture. Dad has stepped further along the dementia path. He knew who my sister and I were, but couldn’t really come up with our names or where we were from. His ability to track time and place is gone for the most part. And it seems that life happens in very short spurts for him, then it happens again. And again. And…

It is fascinating what he does remember though. He knew that Saturday was the memorial service for his long time friend, my godfather, Al Sly. And he was thrilled we were there so that we could go together. I am also very glad I was able to sit with him and share a hymnal and prayer book and point out which hymn to sing. As an ex-organist, I was pretty sure he would have no problems singing the hymns. The Lord’s prayer seemed beyond him but it’s possible he couldn’t hear what we were saying.

(I just read an article that said that hearing loss and dementia were linked. Duh. It is harder to be in the world if you can’t hear what is going on. But really, even if he could hear, I think his ability to take in the words, figure out their meaning and come up with a response is mostly beyond him. Although he sometimes can surprise me by coming out with some gem of an answer that shows that, at least at that particular moment, he has grasped exactly what is going on.)

So where does the release come from? It comes from the fact that in some weird way, now that he has progressed so far, I feel absolved of my duty of trying to make him happy, of visiting him, of taking him out to lunch, of playing a game of Scrabble with him. I have done my share of this over the past few years, especially after mom died (which was five years ago this week). I don’t feel the need to check in on him and make sure everything is okay. He has an army of kind, caring people taking care of him, ones whom he recognizes almost more than his children. And I feel for the first time like I can really let go of that part of him that has resided in my brain for my whole life and just focus on ME. Even as I write this I feel the guilt and shame and thoughts of selfishness that over the years have caused me to stop everything in order to help him in some way. I know I am and have been a good daughter but I will always feel like I could have done more…it’s the nature of the beast. So before you start saying that he could still enjoy my visits, I know that. The thing is, I don’t enjoy those visits, and I have done a LOT of things I didn’t enjoy in order to make him (and my mother before she died) happy. Call me ungrateful, but stick a fork in me, I am done.

So what now? Well, I will continue to explore my artistic life. That is the most exciting thing for me. In the past year or so, I have been able to develop, expand, deepen, and redefine my creativity. My plan is to continue this exploration. My experiences with dementia will, no doubt, show up at some point. I have signed up for a trip to Namibia in November, which will bring about a long-time desire to go to Africa. And I plan to spend more time simply being…but that is the start of another blog post. Stay tuned…

I’ll end with one of my favorite photos of the recent 2 1/2 foot snowstorm…Ginger always expresses my sense of tiredness better than I can…

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it is too exhausting trying to move around in this snow…but it is easier to get up on the rock!

 

 

 

different

Part of the world has just celebrated Christmas, and our thoughts turn to the new year. I have always been a bit suspicious of New Years. It seems a time for people to think that a new chapter has started in their lives, one which they have more control over than the last chapter. New Year’s resolutions are made, gym memberships are bought, promises are thrown about right and left to not go through the same pain and struggle as the previous year. There really is nothing wrong in taking a moment to relive your life of the past year and revise how you want to spend your energy and your time here on earth. But time (and by extension, the calendar) is a man-made construct and January first is really just another day in your life.

Yup, you guessed it, I am in a bad mood. I have not felt Merry and I don’t feel like ringing in the New Year with joy and happiness. It seems that this is a time of grief for me, a time of letting go of loved ones, a time of wallowing and struggling and sleeping. My godfather died over Christmas and my dad is definitely crossing the space/time continuum of dementia. I’m in pain and I don’t think a New Year is going to change that.

I could go on and on, but my words seem to be painted with mud and gunk which, from experience, I know is not much fun to read. Instead I will leave you with a few recent and not-so-recent pictures. Sometimes pictures are an easier way for me to express feelings.

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Mr. R. pulled out his chef’s coat to help make Christmas dinner.
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The chicken tortilla soup served for Boxing Day brunch with family and friends.
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Evidence of weather gone haywire…blooming miniature cotoneaster.
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More evidence of warm weather…forsythia and Christmas balls
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Best friends in happier times. My godfather on the left and my dad on the right.
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self portrait…grief.

 

untitled

Lately I’ve been writing posts in my head but when it comes down to typing them out, I draw a blank. I can’t even seem to come up with a title. I have been doing this blogging thing for three years now and it has morphed many times. People (you) have come and gone, and I find it difficult to keep playing the game to encourage new readers. I know, it sounds like I am breaking up with you guys…never fear, I am just acknowledging there are natural fluctuations in any relationship, they all take some work, even blogging relationships require maintenance.

That being said, this is also a difficult time for me. Christmas, while a lovely time of year, has always been tough for various reasons. This year is no exception. My dad has started running faster (wheeling?) down the path of dementia. At 94, it seems his brain is no longer able to keep up with the world as it is and he is starting to disappear. He can still put a “z” on the triple word score, but does not know that he got 60 points for it. (As always, Scrabble is a really good cognitive litmus test.) He doesn’t seem to be concerned or anxious, for which I am grateful. It is just weird to know that my larger than life, narcissistic father is slowly crossing the threshold to another consciousness and he’s going all alone.

At the same time, my godfather, who finally retired last year as organist and church secretary of the Methodist church…at the age of 90…has complications due to pneumonia. This is a man who’s presence has always been part of my life, even if I have gone a long time without seeing him. He was my father’s organ teacher. I took voice lessons from him when I was auditioning for colleges. In recent years, he has been one of my main pillars of emotional support every time I have gone to visit/take care of my parents. He played Vidor’s toccata for my mother’s funeral. (My dad stood with us in the front row of the church, facing the balcony, and listened to the whole thing and then applauded…it was a wonderful moment.) He is a gentle man, an amazing musician, has a lovely sense of humor…I could go on and on. I could always rely on a big smile and a hug when I popped into the church office to say hello. He is in my thoughts these days… big time.

So you can see that my mind is not all about lightness and happiness right now. I have not been taking lots of pictures lately, but I found this one in the camera from one of the rare days where we actually had a frost. Somehow I think it’s appropriate. I found this praying mantis in the bowl of my buddha fountain. Even in death he prays to Buddha.

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Buddha holds the spirit of the dead praying mantis

a good day

I sit here aware that there is trauma happening every moment around the world. You will probably have read about most of it. So this post is an antidote. It is the recounting of a good day. A day where I was happy, joyful even, and productive. A day where the clouds lifted, metaphorically and in reality, and I was able to breathe deeply and gratefully. These days are somewhat rare. I try to make them happen, but for some reason they elude me. Today, I didn’t have to work at all.

First, I had a really nice visit with my dad. If you have been paying attention, you will know that he is in the murky area of dementia and there has been a lot of stress for those of us who have been the closest to him. But this visit, uncharacteristically, was low-key and pleasant. And I got a good picture of him doing one of his favorite things…playing Scrabble. He had just laid down a seven letter word over a triple word score. He can’t remember what he had for dinner, but he can still pull off a stunt like that…amazing. In this picture (dad is on the right, his friend Nick is on the left) he is in a pose that is so very familiar…his Scrabble/crossword puzzle/New York Times reading pose.

Nick and dad...(dad is on the right)
Nick and dad…(dad is on the right)

Before I left, the last two sections of the ribbon piece were delivered. I mean, they were delivered on Friday morning and I immediately got in my car and left for Connecticut. So imagine my joy at being able to go play with it this morning…and the weather cooperated! The temperature was pleasant, there was no rain and eventually the sun came out. Max made an appearance to help me move stuff around (actually, he wasn’t as much help as my long-suffering husband). So I took Max’s picture too. I figured it would help in showing how big this thing is. (The answer is 84 feet long.) Then I spent the rest of the morning taking photos and putting them on the website. For more pictures of the ribbon piece, go to the website page at www.virginiasperry.com/ribbon/. I am looking forward to adding photos from each season. Let it snow!!!

Ribbon
Ribbon
Max checking it out...again
Max checking it out…again

My afternoon was just as busy. I made a trip to the eye doctor to take out the stitches on my left lower eyelid from a biopsy two weeks ago (Thank God that’s over). The news that the biopsy came back negative really made my day. Even though I was 99% sure it was nothing, it is still a relief to know.

And finally, because the weather was just too gorgeous to stay inside, I was able to get the two dogs and myself out for a long walk. Nothing like a bit of exercise to make the day perfect.

I almost forgot the other thing that made me happy today…the Pittsburgh Steelers won yesterday. Unfortunately so did the Ravens so my husband and I are still in fierce competition with only two games to go…even Santa thinks that the tension is unbearable!!! (For those of you from other lands, this is about American Football and these two teams are usually very close in their quest to get into the post-season.)

Go Steelers!!!

soooo close
soooo close

So, I hope you had a happy day as well…Cheers!

 

 

 

grief

It’s time for another blog post about my dad. As you may know from previous posts, my dad, aged 93, is in the middle stages of dementia. Never an easy man to live with, he is now surrounded by anxieties, paranoia and memory black holes.

After a recent call from him where he basically hung up on me because I wouldn’t give him what he wanted, I spent a few days growing more and more depressed and anxious myself. Today, I woke up from a nap (or was it just an afternoon extension of the previous night’s sleep?) and realized that I needed to have a good talk with myself.

So I got on my shoes and started walking down the driveway to get the mail. As I walked, I talked to myself under my breath, asking questions, answering them and generally looking a little odd. Fortunately, as an artist, I can get away with that, my neighbors are used to me being a bit, um,  different.

The gist of the conversation was this…I am grieving. Surprisingly I am not just grieving for the loss of my dad as I knew him but also the loss of my dad as I have always wanted him to be. I think as parents we have such expectations of our children but as children, we have equally high expectations of our parents sometimes. It took to the end of the driveway for me to realize that I am going to have to let go of the desire to hear certain words from my dad. It took the walk back to voice what those words actually are.

“Hey, how are YOU doing?”

or

“You know I really care about you and want you to have all the necessary skills to get through this life.”

or

“Wow you are one talented lady, I’m so very proud of you.”

or

“Are you okay? I heard you were going through a rough time and wanted you to know I was thinking about you.”

Needless to say, I never heard any of these words when I was growing up…my dad is pretty much a narcissist and my existence was mostly groomed to enhance his. This had its perks in that he bought several pieces of my art throughout the years, both for he and my mother and to give as gifts. He was always in the audience whenever I was onstage or backstage of some production in high school and college. He drove two hours to bring me an extra set of keys in college when I temporarily lost my set somewhere on campus. But all of these things were used more as boasting points in his community, he loved when his children presented him with something he could use in a conversation around town.

The dementia irony is that I can honestly say he’s said “I love you” more times in the past three years than he did the 49 previous ones. Dementia is such a double-edged sword. On the one hand it has softened up his boundaries enough for him to say words that I have long needed to hear. On the other hand, it has taken away the part of his brain that is able to understand personal safety and wise life choices. So “I love you” can be followed by “You all are planning together behind my back to try to make my life miserable.” What hasn’t been affected is his knowledge of exactly how to use words and tone of voice in the best way to wound his emotionally sensitive youngest child. And once again I am trying to figure out how to armor myself against him.

And in the meantime, I grieve for the man my father isn’t. I grieve also for the man he was.

serious
serious

P.S. This is perhaps an unfair picture to post, he would not like it at all. He has always loved to have his picture taken, but prefers to be smiling or laughing. This was taken the weekend of my mother’s memorial service so it was not exactly a happy time. What I did not know was that the dementia had already started and would continue to work its way into his life without alerting anyone. It took another two years for his children to understand that he was not capable of making sane rational choices about his life. I like this picture because it really shows him in an honest moment, one where the laughter and fun has been stripped away and he is not trying to be the funny man of the town, but simply, a man.

In case you also don’t like this picture, I am also posting one that was taken a few months later during his 90th birthday party. Again, looking back, the signs of dementia were there and if we had known, perhaps we wouldn’t have subjected him to a huge community party, but merely taken him and a couple of friends out for dinner. Hindsight…

90th birthday
90th birthday

rocky

Not even 

rocks

and stones

can shore up a hillside

if

gravity 

and water

conspire against them.

 

the hillside crumbles around us
the hillside crumbles around us

As some of you know, I have been primary medical and personal liaison for my almost 93 year old father since my mother’s death three and a half years ago. During this time, my siblings and I came to the realization that he has a form of dementia and last year we put him into a nursing home where he would get really good care. He continued to be as independent as possible, going out to lunch and dinner, going out to concerts and staying as active as he possibly could. Recently, a combination of physical and mental changes has caused his caregivers to limit the way he lives his life, purely for safety reasons. He has balked, he has cursed, he has threatened to sue and he has very clearly told me to get out of his life. Life has never been easy with this man but I finally hit the wall, so to speak, and am, for the moment, relinquishing my role in his life to one of my sisters. My hope is that my own life will stop being pulled down the hill by the force of his gravity and my tears. 

For some reason this picture spoke to me tonight. Being a caregiver, even one that is not on the front line, is so very tough, it takes a very large toll on one’s well-being. I am hoping to patch up the hillside of my life and strengthen it so that it can withstand further assaults. We’ll see if I am successful.