Last week I had another bad seizure. Since September that makes 3, plus however many lighter seizures thrown in. So I called my parents to keep them up-to-date. Mom and Dad were both sympathetic. I told them it’s just part of having dementia; my seizures happen more as my dementia gets worse. I was trying to be matter-of-fact. Then almost at the same time Dad said,” I’m sorry,” and Mom said, “I wish it was me instead of you.” Without thinking I said, “No you don’t; believe me you don’t want this.” I didn’t know what else to say. Besides we both have it rough; I have to live with dementia and they have to watch me live with dementia. Neither job is easy.
Anyway, I shared this conversation with Anita and she helped me understand what Mom and Dad were really saying. Anita explained that their words were a parent’s way of expressing their love and care; that they said what any loving parent would say in a situation like this. And Anita’s right. Mom’s and Dad’s words came from the heart.
It’s probably very clear to you, as you read this, but I needed the reminder. The obvious isn’t so obvious to me anymore. What loving parent would want to see one of their children go through this? And my parents have seen me go through a lot. So I get it now, I understand the message behind the words. So I will say now what I wish I would have said then, “Thank you Mom and Dad for your loving and caring words. They mean a lot to me.” (And thank you Anita for helping me to understand.)
There’s a movie called “The Bucket List.” As I understand it a “bucket list” is a list of things you want to do before you “kick the bucket” – die. In the movie one man helps another do the things on his list. Now, I’ll admit that I can think of things I’d like to do before I die, but if I made a list it would be of all the things I’ve enjoyed or been privileged to do: experiences I’ve had, places I’ve gone, people I’ve known, etc. It would be a long list and would include family and friends and relationships, trips I’ve taken, things I’ve seen and accomplishments. Not a “bucket list” but a “life I’ve lived” list. To me the “bucket list” feels like a sad thing to write, but a “life I’ve lived” list is full of gratitude and accomplishment. The longer a “bucket list” gets the harder it is to do those things. The longer a “life I’ve lived” list gets the fuller life is seen to be. No “bucket list” for me; no wishing this or that could have happened. Instead I’m thankful for the life I’ve lived, even with the bumps and twists along the way. Oh, and about my dementia… it’s one of those bumps or twists and despite how it’s affected my life and relationships, it doesn’t define me. It can’t erase anything that’s gone before. It may end my life sooner than expected, but it can’t take my life away from me.
You might have noticed that I’m not writing as often as I used to. I still want to keep blogging, but I don’t have it in me to write as much as in the past. So I’m giving myself the freedom to write when I need to or want to, instead of feeling like I have to. I don’t know what this says about (if it says anything) about the progress of my dementia. I do feel like there have been some changes, but I can’t put my finger on just what they are. Life just feels different.
So check back in to see I’ve written something or subscribe to the blog and you’ll get an email notice when there is something new. I’m not ready to quit yet.
Another favorite quote, this one by my favorite author -Fr. Henri Nouwen (1932-1996). Fr. Nouwen spent the last years of his life working in the L’Arche Community of “Daybreak” near Toronto, Canada. This community was centered on meeting the needs of severely disabled individuals. Through his work and his writings Henri touched people of faith all over the world.
“The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing… not healing, not curing… that is a friend who cares.” (Henri Nouwen)
I came across the following quote by George Elliot during my prayer time today and found it very meaningful. I prayer that this might be real and true for all of us:
“Oh the comfort, the inexpressible comfort of feeling safe with a person; having neither to weigh thoughts nor measure words, but to pour them all out, just as they are,chaff and grain together, knowing that a faithful hand will take and sift them, keep what is worth keeping, and then, with the breath of kindness, blow the rest away.”
- George Elliot
During my prayer time this morning I read the following scripture:
“I have gained perfect freedom by following your teachings…” (Psalm 119:45, Contemporary English Version)
Freedom doesn’t come by doing whatever you want and damn the consequences. Instead it comes from living within certain boundaries. Freedom comes when we understand our place in the world, what’s expected of us, and what we expect in return.
For me, freedom is found in my room (I think of it as a little apartment) at the care center. Let me explain. When I am in my room I usually feel relaxed. I have my own routine that I can change, if I want. I know what’s expected of me and what I expect when I’m in my room. But when I’m out in a group of people, whether it’s here or out in public, I don’t feel so free. Being in groups, being where there is a lot of noise and movement, where my senses are overwhelmed, where I don’t know what to expect of others increases some of my major symptoms – excessive anxiety, increasing confusion, feeling overwhelmed, etc. And when I’m done with the experience I am exhausted and need to just sit alone, quiet for a while.
So my room is my sanctuary (some of the nurses call it my “Man Cave”). And it has boundaries. But I don’t rage against the boundaries. I accept them. I welcome them; because in my room the overwhelming symptoms of dementia aren’t as overwhelming. The symptoms are still there, but they don’t have as much to feed on. My four walls (one with a huge window) are a reminder of God’s embrace. And within that embrace I have a sense of freedom.
Dear God I seek your forgiveness
For the times I have dismissed
The smallest gestures of compassion
Which have come my way
O Lord, help me instead to embrace them
That they may grow within and around me
Filling me and embracing me
With your peace and love
Amen
“Let only Your will be done in me,
as in all Your creatures.”
(Charles de Foucauld 1858-1916)
These words struck me as very comforting. God has expectations for all of creation – that is God’s will. God expects a deer to be a deer, an eagle to be an eagle, a trout to be a trout, etc. And God expects me to be me – to let God’s will be done in me, to take my part in creation. So if this is true, what does it mean to have dementia and live God’s will? What does it mean to be the me God created when that person is being changed by this disease? What does it all mean?
My wife and I have a family friend who has dementia. She is different than before, but the loving and caring person she has always been is still who she is. She is still the person God created and she is still living out God’s will even though she has dementia.
Now I’m not trying to compare myself to our friend, but I do believe that no matter what we experience in life, we all have a part of us that remains. It’s how we relate to others and to God. For some, like my friend, it’s very obvious. For others, it’s more hidden. I don’t know myself well enough anymore to guess at what that part of me is like. But the point I’m trying to make is that even while living with dementia it is possible to live God’s will. Maybe what dementia does is strip away all the coverings, but it can’t touch that part of us that is connected to God.
I don’t know. This is all getting very complicated to think about and write about. But it’s comforting to try and think about. And that is something.
I miss my guitar. I miss being able to pick and strum, to create a song and then write the lyrics. This isn’t anything new, I’ve written about it before. But there’s good news in this. I discovered some software that allows me to create a song. It uses short pieces of music I can put together into a song. It’s not the same thing as actually having the guitar in my hands, but it feels good to put those pieces together and end up with a song that is ready for my lyrics. The music may be borrowed, but what I do with it, the melody I discover and the words I write are mine. I’ve found quite a bit of free music (loops) on the internet and I hope to buy some soon. I’m sticking to using acoustic (not electric) guitar tracks; that’s what I know and feel comfortable with. I have one song I’m almost finished with; the lyrics need work (takes me a lot longer to write them than it used to). When I’m done maybe I’ll share it. However it turns out it feels like brushing up against normal; not quite normal, but a reminder. And as I live through this dementia, having something that reminds of how normal feels, well that’s a good thing.
It’s been quite a week and I’m just exhausted. You see, I had a grand mal seizure on Wednesday. This is the kind of seizure where a person collapses and then begins thrashing about. I used to have these seizures when I was younger, but as medicines changed my seizures changed to what are called absence seizures; just sitting and staring for a few moments. I’ve had a few of these absence seizures in the past year or so, but no grand mals, until now. So what does it all mean? The doctor and I talked about it in relation to my dementia. I’ve had seizures since I was 15; temporal lobe seizures related to head injuries. My dementia is frontotemporal dementia, affecting the frontal and temporal lobes of my brain. So as the dementia gets worse my seizures might be doing the same. Makes sense, unfortunately.
But, no, I’m not going to feel sorry for myself. It will be what it will be. This is my journey now and self-pity willonly make it longer and harder. But it’s tempting, especially during these few days after the seizure when I feel wiped out and sore. So instead of feeling sorry for myself I’ll admit that having dementia and seizures is frustrating and try to move on from there. After all, we each have our own frustrations/situations to deal with. And instead of trying to compare them (the source of self-pity), our energy is better spent claiming what is ours and dealing with it. Sounds like good advice, now I just need to follow it. Writing it is one thing, doing it is another.
This morning, while I was praying, I came across these words, “God is with me, but more, God is within me.” (www.sacredspace.ie; Tuesday, August 30, 2011)
Those words felt familiar. After thinking about them I seem to remember that I’ve thought about this before. I went back through all my writings and found that I once wrote about how dementia takes away part of me, leaving a hole or a void that grows with time. And that’s uncomfortable to think about. But the good news in this is that the less there is of me, the more room there is for God to be within me. (Monday, April 5, 2010)
“God is with me, but more, God is within me.” Dementia may be a process that eats away at who I am, leaving an emptiness. But I will never be empty, because God will continually fill the spaces with his presence; with love, mercy, forgiveness, peace. I know this is true and I’ll give you a quick example. People who are severely affected by dementia may not remember you or their family or the day of much of anything. But ask them to pray the Lord’s Prayer with you and almost every time they will recall that prayer. And I’m sure this is true for people of other faiths and their important prayers. Why do they remember this? Because no matter how diminished they are, God is within them; their relationship with God is still going strong. God is connected with them in a way that goes deeper than dementia can ever reach.
Even though I may not seem like the same person I was, even though dementia has changed me, it’s comforting to know that no matter what, God knows me. God will recognize me even when I no longer recognize myself. God will fill in those empty spaces left by dementia, because that’s how much God cares for us – that’s how deeply connected we are with God. And that is something to be thankful for.
From 1980 until 2006 I played the guitar and wrote songs. Then, sometime in 2006, dementia gradually took away my ability to play the guitar and the songs stopped coming. My songs were my way of expressing my feelings and faith. They were also a way of relating to God. I’m not explaining that quite right, but it’s the best way I can put it for now. All told, I wrote around 53 songs and put 17 on a cd that became a Christmas present for family and friends. Most of the songs had been recorded by 2006, but some were overlooked; so now all I have are the lyrics with no way to play the tune. Every once in a while I think about my music and listen to a few songs. This is one of those times and I thought I would share one of the songs in this blog. The song’s title is “In Other Words” and I wrote it for my kids after a particularly rough day at school. That was back in 2002. I’ve included both the recorded song and the lyrics below.
(Click the forward arrow below to hear the song and the speaker button to adjust the volume. Please let me know if you have problems playing the song.)
1. In the stillness of the night I shed a tear for you
When I think of all you bear; how the world seems cold and cruel
And I pray to God that you will know you are loved and held so dear
And I hope someday you will understand there are those who truly care
2. If I could I’d bear the pain I see within your eyes
With a word I’d change the world so that others might realize
Just how much you have to offer us, how much we could learn from you
If only we would take the time to see your point of view
CHORUS
In other words, you are not alone
In other words, in my love you’re always home
In other words, I just want you to know
I’d do anything for you, in other words
3. If only they could hear you laugh, if only they could know your dreams
If only they could understand how lost you sometimes feel
Maybe then the world would open up and know you for yourself
Maybe then you’d see there’s room for you, as there is for everyone else
4. Until then please hear my words and accept my anxious prayers
Together we can see this through; together we can dare
To hope for more than we see right now, to believe that change will come
Until then we’ll travel side by side and meet the challenges one by one
Been a rough few days
Feeling exhausted, wiped out
Doctor said it’s some kind of infection
He put me on antibiotics
I hope that takes care of it
But I don’t know
It feels too familiar
Like how I feel for a couple of days after a seizure
But this has lasted longer than that
And that’s not all that’s going on
Depression
Nothing specific
Like a wet blanket covering everything
Nothing new
It comes and goes
Just feels heavier right now
So add all this together and like I said
Been a rough few days
It’ll pass
May take a while
But it’ll pass
The county fair has come and gone. This year I entered 40 pictures and some green beans from the Health Centre Garden. Of the pictures 31 received 1st place, 6 received 2nd place, and 3 received 3rd place. The beans received 1st place – I was amazed with that. But most of all I was surprised that 3 of my first place pictures received purple Open Class Outstanding Ribbons ( the highest award an open class entry can receive)! Those three pictures are below. It really felt good to be recognized in that way.
OUTSTANDING IN CLASS, faded flowers with verse 8x10
I don’t know what to write. My mind is blank and I’m tired of writing about what dementia is doing to me. I feel like I’m just repeating myself and I’m done with dwelling on the negative part of my life. Maybe I’ve shared enough. Maybe if I let it go for a while I’ll pick it up again. I don’t know. Maybe I just need to walk away and move on. I know the more I think about it the more frustrated I become and that’s a sign that I’m not in a good place. So I guess I’ll just let it be and see what happens. Let it be…
Earlier this spring I asked if we could plant a garden here at the care center. After some discussion and planning we finally got the seeds and the plants in the ground this last Tuesday; beans, peas, carrots, onions, radishes, lettuce, tomatoes, peppers, watermelon. It felt good to work outside in the dirt. The only frustrating part was how quickly and easily I became winded and need a break.Still, I was able to help. And I can continue to help as I water and weed. Now we have to wait and see which seeds and plants make it.
But no matter how much of the garden grows (or doesn’t grow), taking care of it is to nurture and care for part of God’s creation. It is also doing something that “normal” people do. During the time spent in the garden my dementia seems to be far away. And even though I physically can’t do as much as I would like, I can do enough to feel useful and more a part of life. Our little garden is both a physical and a spiritual experience.
And so I pray for our garden, for each seed and plant. I offer thanks for what the garden means to me. I pray for God to embrace this little piece of earth; that it might be a source of life. And I pray that others enjoy this garden and are able to set aside their problems for even a short time. Thank you God for this little garden and the hope, peace, and wonder of it all.
Choked with tears
I want so much to visit Buena Vista, Colorado
The town I grew up in
I want to see Mt. Princeton, the Chalk Cliffs,
Midland Hill, Buffalo Peaks
And all the other mountain peaks of the valley
To smell the air and feel the altitude
To be in the place of memories
But this trip won’t happen
It would be too far, too much for me
Dementia has closed that road
So I have to settle for a few pictures and scattered memories
It will have to be an imaginary trip
No mountain air to breathe in
No altitude to make breathing a little more difficult
No stones to touch or sounds to hear
Only what I remember
I can’t deny it – it just isn’t fair
Damn this dementia!
So tired
Not sleeping well
Fuzzy thinking
Can’t think of anything to say
But have so much to say
Doesn’t make much sense
Good news: grass had first mowing
And leaves opened on the trees
It really is Spring
God of peace and calm,
I have a lot of anxiety
I tend to worry a lot about things I can’t control
So I’m trying to get used to these words:
“It will be what it will be”
I don’t mean to give up
I just want to live in this moment
I want to stop worrying about what the future may or may not bring
“It will be what it will be”
That should be enough
This moment in itself should be enough
God, help me understand this and live it
Amen. Let it be.
My friend, I do not ask that you change what is happening to me
I do not ask that you understand this dementia disease
I do not ask that you have answers to my questions
All I need is someone to sit a while with me
Someone to listen and laugh
Someone with patience when I have trouble saying what I’m thinking
Someone to just be with me
And if you are willing to simply try these things, that will be enough
God will take care of the rest
...and I'm the author of this blog. I am diagnosed with a type of dementia called "Frontotemporal Dementia (recently renamed Frontotemporal Degeneration) (FTD)." There is a link below to a website that will describe this better than I can. Thanks for visiting!
