Through My Eyes

The end of May is quickly approaching and June will indicate that half of 2017 has arrived. Blurry would be an adequate word to use for these first six months.

I find myself straining to remain engaged with this crazy world in which I live. Regardless of any diagnosis, life has been twisting for some time now. Physically, my periphial vision is making walls easier to smack into or anyone entering my space isn’t noticed until they are directly in view. Compensating for these visual changes is challenging and equally uncomfortable for those around me. My eyes seem to be constantly scanning the surroundings.

I was recently hospitalized for what appeared to be a heart attack. Pain in chest and the feeling of an elephant sitting on my chest! As I waited for family to arrive home, I hoped the end was here, only with less pain. After four days in hospital and everything cleared, I was ultimately diagnosed with a urinary tract infection. Never underestimate a UTI. What I took from this experience, is that the vision, mobility, speech, forgetfulness and other ‘outward’ symptoms, were a stark reminder that my brain also controls all of my internal organs and my brain sent all the wrong signals. I don’t know why I hadn’t really considered this.

I came home with a mission, based on my hospital stay. No one there, from nurses to cardiologists, recognized this brain/body reaction. In fact, once I explained I have FTD, I was most often ignored or misunderstood. My daughter was my voice and they treated her unkindly and disrespectful. Had I not been in such pain, I might of hurt someone! There is a huge need for doctors and nurses to recognize the nuances a person with dementia faces when their bodies aren’t functioning properly. It is so very frustrating to explain what is and what isn’t compatible or safe for a sick brain. Sometimes the cures are causing more harm than good.

I was sent home with an antibiotic and a script for acid reflux (which an endoscopy showed I don’t have need for). Give her a pill and she’ll be ok. Ugh!

The family I live with is selling the house and moving away. The likely hood I see them again is slim. They know this as well as I do. I am very fortunate to have two wonderful daughters, who have stepped forward to ensure I have a roof over my head and can continue to live as independently as possible. I have reached a point of needing some verbal reminders, gentle cues and to be treated as myself and not just a diagnosis.

Through my eyes, that now see the world much more narrowly, I also see that those moving on from me, cannot see what I see. It’s more than that, they don’t want to see the parts of my world that are changing. They see my frustrations as I seek compensations, as anger and cruelty towards them. Just as I cannot change my changing vision, they cannot change their need from freedom from the inevitable responsibilities creeping into their lives.

Who’s to blame, me for needing more, them for not being willing to support those changes or how about the damn disease? Through my eyes, I think blame is equally shared.

They will move and I will continue to find ways to help myself and others experiencing the lack of knowledge about early onset dementia/FTD. A UTI and visual changes only make me more passionate to learn and help others facing these new challenges themselves.

Subdued Amazement

I have been spending days, going through untouched and hidden items in my room. This room, has been my primary living space for 3+ years now. Living with my dear sister and her husband as directed to do once diagnosed with a degenerative brain disease called FTD/PPA. This house they purchased with the intent on it being my last place to call home; beautiful and more than I could have ever imagined myself living in. We collectively made a pact, to live life to its fullest and enjoying our time together. All the plans made, ideals tucked safely into our minds, moving forward, for better and the worse.
I clean the downstairs, they the upstairs. I keep the front yard mowed and gardens tended to and he the back yard. I buy and prepare my food, they theirs. We share evenings together, watching television or talking and smoking on the back porch. A perfect deal, to accommodate us all. Family, together, as it should be when times get rough for one or the other. It’s the way it’s done!
Reality is each person’s own ability to perceive it. HUGE lesson! The downstairs and yard have been immaculately tended to, as discussed in the beginning. My room has never been fully unpacked. There are still boxes, stacked high. The idea of creating a space of just me, got lost in the confusion and worry that I was outwardly performing at a level family is/was familiar with. I didn’t realize this particular piece was what it was until now. ,I have since become apathetic to the boxes, what’s in them or why I should do anything about them. They have become the rooms décor.
Slowly but surely, the evenings of shared television came to a halt, with each retreating to their own television. The noise of television, at their volume became unbearable to me and left them feeling stifled. Often TV is too loud, too fast and plain over stimulating.
Working in the yard, something that has always brought a feeling of instant gratification, became cumbersome and frustrating. I’m not sure who became more distressed, myself for lack of enthusiasm, the neighbors concern at seeing me tripping over myself or my family’s concern that they were looked at as unsympathetic. Nonetheless, this activity has caused such emotion from each, I barely tinker in the yard anymore.
I believe there was a perception, given to us by the diagnosing doctor, that I would need intensive supervision. Up till now, that has not been the case. In fact, I am still quite capable in many ways, albeit my goals are achieved in a more round about manner. I have learned to live with the plateaus of my disease process. Remember, every person will progress in their own unique way. So these perceptions were not ours, but that of the medical community.
This brings me back to why I am now visiting these boxes and creating new boxes. Life carries on, FTD or not. I in my way and the family in theirs. Me, compensating and rewiring to complete the simplest of tasks with an ever changing brain, they continuing on their path of work outside the home, vacations and still the need to recognize me as the person they have always known. My outbursts of confusion, the TV sounding as if it’s on the Spanish channel, forgetting to keep my end of the house and yard bargain up and the inability to follow or understand all their plans. It’s not me, it’s the disease, I am reminded of as I go a week without a shower. It’s the disease, not me, when I am reminded of the chaos I call my room.
So, it has been decided by my sister and her husband, that they need to move on with their lives, giving them the freedom to always remember me as they always have. But FTD has not been as forgiving to me as I am so unfortunately aware of. No longer can I compensate for the lack of executive function skills I once mastered or compensated for. I will be moving to my eldest daughter home, where they kindly will be converting their garage into a mother-in-law suite. I am going through and trying to find only the bare necessities to elicit memories of the me I created throughout my life. It is just stuff, but that stuff is what held memories and experiences that made me the strong, determined woman I am today.
I am selling bulky pieces of furniture that will not fit into a new, smaller living space. I am trying to imagine how living without some of these visual memories will feel. I will try to remove the preconceived ideas of doubt and fear, that FTD will implode my daughters perception of me as her Mother and her children’s Grandma. If things procede as they have, I believe I may stay fully aware of these perceptions till I no longer can comprehensibly articulate them. I don’t forsee myself as fully unaware. How I respond is the question.
So I am packing and downsizing, again, with a subdued optimism. I shall call it realism. I will know if FTD is imploding my loving and functioning family. I promise to remain a realist, if not solely for their needs, but my dignity as well. We all deserve dignity.

Go faster, slow down!

Living with dementia of the FTD variant, I most often remember who people are and seldom get lost. I struggle more with putting things into order, completing or even initiating tasks, motivation/apathy, a burning in me I once thought passion and now can quickly turn to an outrageous outburst. Short term memory, speech and lack of, causing me a frustration that leads me often to isolation. Puzzles that sooth most, infuriate me because they make no sense. Thinking today is Tuesday and it is Friday. I often feel as though I am chasing my own tail, going in circles.

Yet, I am reminded of the words that may be jumbled, help someone else, that I am still functioning in a purposeful way. This purpose I once felt sure of, capable and sure of, feels like it hides from me some days…much too often. I wonder if the awareness of my journey with others, is now becoming their journey about themselves.

Many still live in ignorance, denial and pain; keeping a distance as if their selves will be lost in the reality. How do I continue to teach, share compassion and patients, when those very things feel more like words than the feelings and actions associated with them feel covered behind gauze? Must pathetic become my label?

How long is acceptable to look into the eyes of my loved one’s, seeing sadness, fear and frustration? How long do I continue my tail, before someone with true empathy, turns to me and reminds me there is another way? I guess it is not for them to say, for they are going too fast for the slowness of my mind.

I am a spectator. Watching the world and lives of those I know, swiftly pass before me. By the time I recognize them, remember what was so important for me to share with them…they are gone. Life has swept them away. I remember when I was fast. I still care that I am not fast now. I still hurt when I recognize hurt. I still want the best for those I know and others. I still wish…

Either hurry up or for heaven’s sake, slow down!

Leaning In

I am a dozen years into a dual diagnosis of Early Onset Alzheimer’s and FTD (frontotemporal degeneration)/ PPA (primary progressive aphasia.

I am tired of being labeled and referred to by my diagnosis. Trust me, I have given my diagnosis, my full attention. Losing more in my life, than is fair. My work, my car, my home, my relationships with my grandchildren. I have spent years, fully embracing and feeling the effects of brain disease.

I found new purpose to life, through meeting and collaborating with other people navigating their lives with a dementia diagnosis. I have stood on different platforms, trying to convince those in charge of dementia policy, to see the life left after a diagnosis. I drew big crowds and people opened their pocket books to fund research to find the cure. I did this with honor and the hope that collectively, change and perceived perceptions could be changed. Please don’t assume that everyone living with dementia is automatically unaware of what is taking place or need immediate supervision.

Yep, there is suffering. Some people don’t like that word, but I’m a realist and it suffers me to realize the changes that come without warning. The slowness in my abilities, that once served me so well. The look of worry on the faces of people I love. Losses come with life, so my life is really no different than any other’s. What I do about the losses is up to me.

I have decided to lean into life, whatever that may look like. I am rewriting the story. I want my own home, I want to challenge this damn diagnosis, just like I have challenged every new experience in my life. I want to live for a better life with dementia and not the expectation of nothingness. I am more than dementia. I am a woman that wants to call someplace her own, cook meals that bring joy to those who are brave enough to eat them and reconnect with my grandchildren, offering them the knowledge and love only I can offer them.

I want to challenge dementia and recognize the person I still am, strong and defiant, purposeful and very self reliant. Come on dementia, show me what you’ve got! I have never backed down from a challenge, why start now! I want to acknowledge the very unique changes and see how well I learn to navigate the differences that will come. So far, I am fortunate to have the stamina, desire and articulation to continue forward. does not diminish the importance

I hope to inspire others facing this life experience to step inside themselves, envelope themselves with life and all that comes with it. Speak out about what makes life easier, makes you smile, what enables you to be the best you, you can be.

Hope may not come in the form of a cure, in our lifetime, so where will you look for hope in your life. My hope is in leaning into this experience with determination to dispel some of the stigma and turn the prism of thinking. There is life after diagnosis, there are challenges and yep, some defeats. Dementia is not just a diagnosis, it is the person and what best enables them to continue to be whatever they choose to be.

I recognize that my ability to hammer this point for change is exhausting for me, so I will leave some of the technical stuff to those better able. That does not diminish mine or anyone else from continuing to keep turning that prism from debilitated to just evolving.

I am choosing, to lean into this chapter of life, even if it means I am only leaning into the me I still am.

My Feelings Are My Memories

The Holidays are upon me and the memories seem much more vivid to those around me. Their need to make lasting memories are much more important to them then to me. It becomes more difficult to remember that their lives will go on and the memories made now, will carry them for their lifetime. Watching Mom, Grandma, cringe at the sound of Christmas music reminds me of the feelings when I was a young girl, the first Christmas after my Daddy died in November. The false happiness of a child’s birthday a week later. The sadness, the guilt of forgetting the first person in my life, that loved me so truly.

My wish, is for my daughters and their children, to remember the me, that pushed aside my long felt feelings of sadness and hypocracy around the Holidays. May they remember the holiday baking, the house filled with family, food that was made with love. I am not old, I don’t look sick; how will my grandchildren remember me and what will their feelings be about their grandma?

My eldest daughter, my confidant, the person who seems to trust and understand me reminds me of what a good job as a mom, to create magical memories for she and her sister. Her sister does not come around. My feelings are of hurt. I was once able to rationalize her need to not watch her mother change; that is becoming harder to do and I fear I will be stuck with only the feelings of hurt.

Dementia is a thief. It takes the specifics and leaves me with feelings, feelings that are sometimes misdirected and undefined. Making new memories is for those around me. May my gift to those who love me, or I matter, find the me in my sadness and confusion around the holidays and help me to be that person that was once so capable of making everyone feel loved, adored and so very special to me. May I be a catalyst for positive holiday gatherings.

Merry Christmas and a Very Happy New Year!

Finding Self

2016 has had its ups and too many downs. I feel like just as one tragedy feels healed another rattles me to my core.

I can’t recite these tragedies, I have dementia that is affecting my memory. My emotions are stronger than my memories. These emotions are real and can feel very raw, untameable. I have feelings but struggle to apply them to the correct incident. Struggling with this is exhausting!

The World is fast and the ability to slow it down isn’t going to happen. Nor should it. Oh, but how I wish for some long lasting, real pleasure.  The kind of pleasure I feel from my family, nature, a good book, music that moves me, honesty, dogs, silence.

More often, finding these pleasures float past far too quickly and there appears another tragedy. I’m left to maneuver my way back to the optimist, forward thinking person I know myself to be.

Dementia feels like wading through thick, dirty mud. I’d like to wash it away and clearly focus on the events of this crazy world, making my feelings actions and constructive conversation.

I am an observer and a feeler. I’m trying to look at this mud as some form of mask, that will ultimately reveal my most beautiful, truthful self. Pardon me while I stare.

When My Children Sign My Name

It has been a  little over 3 years since I was diagnosed with FTD, at which time I was advised to get my affairs in order. I followed the advice of my neurologist and assigned my child and sister as my POA.  Done, never thought of till recently.

For over a year or more, I and my family have been in contact with a film producer who is interested in documenting the effects early onset dementia on family dynamics, financial impacts, the advocacy work I participate in and end of life discussions. Awesome, great! Purpose.  Let’s  share the life with a diagnosis and hopefully  bring awareness and understanding.

Many months of wrapping our heads around the reality of the home being invaded with a film crew, witnessing some very private thoughts and emotions as well as the laughter. Good, great! Bring it on! Finally, the decision to move forward. Contracts to be signed and we’ll be able to get started.  Sitting at the table, feeling confident and capable. I admit that details of things are difficult to put together but when there is a trust, I am good to go. My daughter and my sister were handed very important looking paperwork.  I sat waiting for mine…not anymore. For the first time since the dementia diagnosis, I was forbidden to sign a contract. Wow, I can’t even put into words how small I felt. I squabbled about my pride and asked my family to put themselves into my shoes, just for a minute.

I guess I always thought I would be ‘unable’ to sign my name at some point due to the effects of dementia. Just didn’t  think about actually recognizing and being physically able yet legally  unable. It has taken me a minute to adjust to this prescribed reality. It has raised the question for me, should documents that so profoundly affect my ability to participate, be signed so early in one’s  diagnosis? Should a person’s  loved one’s be asked to make decisions when the diagnosed  person still be functioning with little assistance?

Something to think about as it is a very subjective and personal  decision.

 

 

Inspiration

I find that my tolerance for repeating myself, slowing my speech is a new reality. Living with PPA is an experiment in patience. I may blunder on and on, only to realize that my recipient didn’t understand the meaning behind the blabber.

Recently, I have had the honor to be mentally inspired by some very brilliant, forward thinking people. I am so inspired by their ability to put into words all that I am motivated to share with the World.

I am struggling to put my thoughts together well enough, to even make a point. I end up lost in a brain salad of the alphabet and the very difficult process of making intelligent sentences.

Until I rewire and find my new ability, I will be more of a listener, yet truly inspired by those so capable of putting their alphabet in the correct and impact fun manner.