The book Healing After Loss: Daily Meditations for Working Through Grief, by Martha Whitmore Hickman, was recommended to me by Corinne Peterson, my yoga teacher and guru.
When I come across a particular salient passage, I will share it here with you. I highly suggest the book if you are currently, or will be dealing with death and loss.
Even as I stood there, the tears streaming down my face, I felt a kind of joy for him, a strange gayety almost, that he would so soon be released, and I had a sense that he stood now on the threshold of some great adventure ... so it was in a strange way not only a time of terrible sorrow, but a moment of light, as I stood there telling him goodbye.
Showing posts with label Loss. Show all posts
Showing posts with label Loss. Show all posts
Friday, December 11, 2015
Monday, December 7, 2015
"Letting Go" By: Kate Swaffer
I am reproducing my fellow blogger Kate Swaffer's post her in its entirety because it is such a significant piece. Do, however, please visit her site for her many wonderful posts.
http://kateswaffer.com (Opens in a new window)
One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.
My Reply: My heart and head cry out loud for you and all others who have gone or are going or will go through this experience. Oh that I could make it all go away, be OK or be better for you, dear friend, like I tried so hard to do for Gregory. There is no way to pet you and say it is OK. It isn't! But know that LOVE does the best it can to replace those losses. LOVE by you and for you. For and from your husband, family, friends, BLOG readers, and so many others whose lives you have affected and influenced and made better!
http://kateswaffer.com (Opens in a new window)
Letting go
One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.
I am not talking about physical functioning, as I was and am very used to that happening. Needing reading glasses was the first major step towards that, and possibly giving up playing squash the second!
I’m okay about my hair going grey, I’m okay with my wrinkles that mean I have lived and loved, I’m even reasonably okay living with the ongoing chronic pain of severe arthritis and other chronic conditions.
Accepting that I can no longer manage medication, nor sometimes work out how to get dressed or make a cup of coffee is emotionally debilitating. My maths ability has been impaired for some time, but now, it is so impaired others have talked about it, and suggested to my husband perhaps it is time I let go of doing more things. Of course, we have had to go through the pain together this weekend, as it had to be brought up…
I find this to be part of the process of letting go of the many things you lose with dementia, but in contrast to when you are letting go of someone you have loved, you still have your functioning and abilities in tact. When you let go of someone who has died, you still have your functioning and abilities in tact. When you lose a job, you still have your functioning and abilities in tact. When you lose friends (except when this happens after a diagnosis of dementia), you still have your functioning and abilities in tact.
If you have ever wondered why people with dementia act in ways that are hard for others to live with, manage, accept, then please think about what it is like for us, the people diagnosed with dementia, who are losing our functioning and abilities. We are changing in ways that you are not, yes, but we are also losing so much of our identity, who we once were, perhaps even who we wanted to become.The future looks grim, and our past, sometimes even this morning or yesterday, is fading, perhaps not even to become a distant memory for some of us.
Letting go is hard to do, especially when you have nothing else to hold onto… or look forward to, which is why it is so very important to completely ignore Prescribed Disengagement™® , and Live beyond dementia™, for as long as humanly possible.
Saturday, October 17, 2015
Monday, September 28, 2015
Sunday, July 12, 2015
Nirvana
I need to sit down and review my posts. For the most part I believe my posts are up, optimistic, positive. When I show a video of Gregory playing the piano, it is done with great joy on my part, calling it a Monumental Momentary Miracle!
Many of the antidotes and photographs of Gregory show him enjoying himself at The Lieberman Center: whether outside, at a meal, in his room, or watching a performance in the Community Room.
But I need to chastise you a bit if you are sad for Gregory or get depressed yourself when you read about how he is today!
I think that for the most part you should feel sad for ME when the posts seem down, overwhelmed, or despondent ... not Gregory. It is me that is trying to cope with my new life or trying to problem solve for him at Lieberman Center. Gregory is content so don't feel sorry for him. I am able to regroup so don't feel too bad for me either!
The Gregory we all knew and loved, the whole person Gregory, the pre-Dementia/Alzheimer's Gregory is no longer with us. No amount of crying or sadness or depression will bring him back. If anything the crying, sadness, and depression will not only affect us but how we deal with him and he will "read" us which will affect him negatively.
So I try to be up and optimistic and positive when I am with him. The Spirit that is Gregory exists beautifully and fully. His sense of humor peeks out, his being aware of the situation peeks out now and then. Out of the clear blue he will lean in and tell me or tell you something very loving and poignant. His being distraught peeks out only rarely and his sadness passes quickly and easily.
He exists in a diminished place, a narrow community, with a greatly reduced cognitive ability level and skill set. But he is happy. He is content. He is safe. It may seem ugly to us but he does not see it that way. We must see his life through his eyes, not through our eyes or through our expectations.
Now and then, he gets a little "out of balance" but the medical staff and I work at helping him be at peace with himself through music, food, reassuring, and the very very careful use of calming drugs.
Many Dementia/Alzheimer's facilities have gotten a bad rap for drug use to calm residents in an effort to make it easier to take care of them, to sedate them into oblivion. And some facilities deserve to be chastised for such activity.
But many facilities also very carefully use medication to help the resident be calm within themselves, especially when they no longer have the ability to discuss their fears and emotions, when language fails them.
For those of you who think drug use is "wrong," I would say how is Gregory, in some ways, any different than the hundreds of thousands of people who need a mild tranquilizer or who pop an Ativan now and then to help them cope with life? When he is balanced; he is easy, happy, content, engaged, alert, and enjoying life to the fullest. His fullest ... not our concept of what "fullest" should be!
There are no expectations for Gregory from the outside and for the most part he has none for himself. He has no "shoulds" or "oughts" and that is beautiful. He has no obligations, doesn't have to be anywhere special or accomplish anything unique. Being late for an appointment or deadline does not exist for him. He gets to eat well, watch a lot of TV, see his favorite DVD movies, have his dark chocolate treats, sing, sit outside in the sun, and visit with people who love him and who somewhere inside he knows he loves back.
In many ways Gregory is well on his way to NIRVANA |nərˈvänə, nir-| noun (in Buddhism) a transcendent state in which there is neither suffering, desire, nor sense of self, and the subject is released from the effects of karma and the cycle of death and rebirth. It represents the final goal of Buddhism. Something we are all looking forward to.
Don't cry for Gregory. Please see his glass as half full - not half empty, celebrate him as he is today do not grieve for his yesterdays and don't feel too bad for me either.
I love that man More Than Ever and enjoy him every day I visit. Slowly I have been able to begin thinking about our past and being grateful for all we have had. I am overjoyed at the wonderful care he is receiving at Lieberman and I am slowly reclaiming my life.
The hole ripped in my chest, at loosing what he was, will never be filled and when he dies it will be ripped open a touch more, but that hole will and never should be filled. It is the sacred place where our love for each other continues to live and will live as long as I breath. I have learned and will continue to learn how to live with that emptiness in my chest. Then I will die and will have achieved my Nirvana!
Many of the antidotes and photographs of Gregory show him enjoying himself at The Lieberman Center: whether outside, at a meal, in his room, or watching a performance in the Community Room.
But I need to chastise you a bit if you are sad for Gregory or get depressed yourself when you read about how he is today!
I think that for the most part you should feel sad for ME when the posts seem down, overwhelmed, or despondent ... not Gregory. It is me that is trying to cope with my new life or trying to problem solve for him at Lieberman Center. Gregory is content so don't feel sorry for him. I am able to regroup so don't feel too bad for me either!
The Gregory we all knew and loved, the whole person Gregory, the pre-Dementia/Alzheimer's Gregory is no longer with us. No amount of crying or sadness or depression will bring him back. If anything the crying, sadness, and depression will not only affect us but how we deal with him and he will "read" us which will affect him negatively.
So I try to be up and optimistic and positive when I am with him. The Spirit that is Gregory exists beautifully and fully. His sense of humor peeks out, his being aware of the situation peeks out now and then. Out of the clear blue he will lean in and tell me or tell you something very loving and poignant. His being distraught peeks out only rarely and his sadness passes quickly and easily.
He exists in a diminished place, a narrow community, with a greatly reduced cognitive ability level and skill set. But he is happy. He is content. He is safe. It may seem ugly to us but he does not see it that way. We must see his life through his eyes, not through our eyes or through our expectations.
Now and then, he gets a little "out of balance" but the medical staff and I work at helping him be at peace with himself through music, food, reassuring, and the very very careful use of calming drugs.
Many Dementia/Alzheimer's facilities have gotten a bad rap for drug use to calm residents in an effort to make it easier to take care of them, to sedate them into oblivion. And some facilities deserve to be chastised for such activity.
But many facilities also very carefully use medication to help the resident be calm within themselves, especially when they no longer have the ability to discuss their fears and emotions, when language fails them.
For those of you who think drug use is "wrong," I would say how is Gregory, in some ways, any different than the hundreds of thousands of people who need a mild tranquilizer or who pop an Ativan now and then to help them cope with life? When he is balanced; he is easy, happy, content, engaged, alert, and enjoying life to the fullest. His fullest ... not our concept of what "fullest" should be!
There are no expectations for Gregory from the outside and for the most part he has none for himself. He has no "shoulds" or "oughts" and that is beautiful. He has no obligations, doesn't have to be anywhere special or accomplish anything unique. Being late for an appointment or deadline does not exist for him. He gets to eat well, watch a lot of TV, see his favorite DVD movies, have his dark chocolate treats, sing, sit outside in the sun, and visit with people who love him and who somewhere inside he knows he loves back.
In many ways Gregory is well on his way to NIRVANA |nərˈvänə, nir-| noun (in Buddhism) a transcendent state in which there is neither suffering, desire, nor sense of self, and the subject is released from the effects of karma and the cycle of death and rebirth. It represents the final goal of Buddhism. Something we are all looking forward to.
Don't cry for Gregory. Please see his glass as half full - not half empty, celebrate him as he is today do not grieve for his yesterdays and don't feel too bad for me either.
I love that man More Than Ever and enjoy him every day I visit. Slowly I have been able to begin thinking about our past and being grateful for all we have had. I am overjoyed at the wonderful care he is receiving at Lieberman and I am slowly reclaiming my life.
The hole ripped in my chest, at loosing what he was, will never be filled and when he dies it will be ripped open a touch more, but that hole will and never should be filled. It is the sacred place where our love for each other continues to live and will live as long as I breath. I have learned and will continue to learn how to live with that emptiness in my chest. Then I will die and will have achieved my Nirvana!
Monday, June 29, 2015
Grieving The Loss of Music
Kate, my blogger friend from Australia just posted a piece about her gradual loss of her musical knowledge. Click here to read her post. Opens in a new window. It is a sad piece in which she grieves the loss. I wrote the following in reply:
Oh Kate. My heart aches with you and for me as I remember Gregory's losses with music. He was close to a concert pianist with pieces like Ballad #43 from Chopin. This is an athletic piece, with the likes of Horowitz playing as an encore. It took G only five years to master this piece and I enjoyed every note (and clunker) lying on the sofa nearby. When we sold the grand piano that adorned and filled our living room, I cried, Gregory remarked "At least I can still listen to my CDs and have more music than I know what to do with."
And music continues to be such an important part of his (our) life. It brings him peace and at times tears of beauty. He can no longer play and no longer knows his Bach from his Beethoven but he is happy and enjoys his music so much. We hold hands and listen to Chopin (among others) and do not need words. Other times he loves being "under his headphones" and disappearing into the music.
As for your husband, be grateful but do not be sorry for him. It is your path but he has, from his heart, chosen to walk it with you. If that is not what love is all about than I do not know love. I am sure he would have it no other way! It is what he must do. In a joyful way "carried on the shoulders of sorrow," you are allowing him to do what he must!
I am sure none of us would have ordered it this way but we do have the choice: lie down and die or hunker down and keep going the best we can! Not really knowing you as a dear friend, I none the less can honestly say, "Kate, I love you and send you positive, healing emerges every day!"
Fondly,
Michael
Oh Kate. My heart aches with you and for me as I remember Gregory's losses with music. He was close to a concert pianist with pieces like Ballad #43 from Chopin. This is an athletic piece, with the likes of Horowitz playing as an encore. It took G only five years to master this piece and I enjoyed every note (and clunker) lying on the sofa nearby. When we sold the grand piano that adorned and filled our living room, I cried, Gregory remarked "At least I can still listen to my CDs and have more music than I know what to do with."
And music continues to be such an important part of his (our) life. It brings him peace and at times tears of beauty. He can no longer play and no longer knows his Bach from his Beethoven but he is happy and enjoys his music so much. We hold hands and listen to Chopin (among others) and do not need words. Other times he loves being "under his headphones" and disappearing into the music.
As for your husband, be grateful but do not be sorry for him. It is your path but he has, from his heart, chosen to walk it with you. If that is not what love is all about than I do not know love. I am sure he would have it no other way! It is what he must do. In a joyful way "carried on the shoulders of sorrow," you are allowing him to do what he must!
I am sure none of us would have ordered it this way but we do have the choice: lie down and die or hunker down and keep going the best we can! Not really knowing you as a dear friend, I none the less can honestly say, "Kate, I love you and send you positive, healing emerges every day!"
Fondly,
Michael
Sunday, June 7, 2015
Love and Loss
The story seems to begin with catastrophe but in fact began earlier and is not a tragedy but rather a love story. Perhaps tragedies are only tragedies in the presence of love, which confers meaning to loss. Loss is not felt in the absence of love.
Elizabeth Alexander The Light of the World
Monday, May 18, 2015
Crying
I am not afraid to cry. I cry for joy as well as sorrow, beauty as well as suffering, life as well as death. Emotions I know are a barometer of how I am doing today but these are tears of despair that periodically raise up when I once again grieve my loss and the changes that Alzheimer's has showered on me. I also see the blessings that Alzheimer's has showered on me but right now I am only wet :-)
Wednesday, March 18, 2015
A Ghost In This House
I cry fairly easily now days when I am home alone. After spending four or five hours with Gregory each day that Manny has been out with a cold, I experience such wonderful, new, little touches of Gregory that I didn't realize I have been missing.
Some are glimpses of Gregory's knowing who and what and where he is. Some are celebrations of our love. Some are demonstrations of his trying to communicate with my agreeing supportively to who knows what. Some are little, whispered, "I love you" from his lips. Some are rocking together in our sorrow. Some are tears of joy. Others are tears of loss.
Then I come home to my empty house. That screams out his absence. That screams out "Never More." And I cry.
I love my home, I enjoy being here, but when I allow myself, I despair at Gregory's not being here with me.
This evening I have been watching "American Voices," a PBS special about all types of American music that is hosted by my friend opera singer Renee Flemming. One of her guests Alison Krauss, a Country Western singer, sang this song below.
And I cried. And I felt a loss so great that if I allowed myself to visit it too deeply, I could not breath and would die as quickly as Gregory dies slowly. And as much as he is no longer the man he was, I so dread his death and his leaving me, and I cry and I die.
ALISON KRAUSS LYRICS
"Ghost In This House"
I don't pick up the mail
I don't pick up the phone
I don't answer the door
I'd just as soon be alone
I don't keep this place up
I just keep the lights down
I don't live in these rooms
I just rattle around
I'm just a ghost in this house
I'm just a shadow upon these walls
As quietly as a mouse I haunt these halls
I'm just a whisper of smoke
I'm all that's left of two hearts on fire
That once burned out of control
You took my body and soul
I'm just a ghost in this house
I don't care if it rains
I don't care if it's clear
I don't mind staying in
There's another ghost here
He sits down in your chair
And he shines with your light
And he lays down his head
On your pillow at night
I'm just a ghost in this house
I'm just a shadow upon these walls
I'm living proof of the damage
Heartbreak does
I'm just a whisper of smoke
I'm all that's left of two hearts on fire
That once burned out of control
And took my body and soul
I'm just a ghost in this house
Oh, I'm just a ghost in this house
I don't pick up the phone
I don't answer the door
I'd just as soon be alone
I don't keep this place up
I just keep the lights down
I don't live in these rooms
I just rattle around
I'm just a ghost in this house
I'm just a shadow upon these walls
As quietly as a mouse I haunt these halls
I'm just a whisper of smoke
I'm all that's left of two hearts on fire
That once burned out of control
You took my body and soul
I'm just a ghost in this house
I don't care if it rains
I don't care if it's clear
I don't mind staying in
There's another ghost here
He sits down in your chair
And he shines with your light
And he lays down his head
On your pillow at night
I'm just a ghost in this house
I'm just a shadow upon these walls
I'm living proof of the damage
Heartbreak does
I'm just a whisper of smoke
I'm all that's left of two hearts on fire
That once burned out of control
And took my body and soul
I'm just a ghost in this house
Oh, I'm just a ghost in this house
Thursday, October 9, 2014
Glen Cambell's Final Recording
Click on link below to hear the song:
Glen Campbell has been very public about his battle with Alzheimer’s, bravely staging a farewell tour after his diagnosis in 2011 and even allowing camera crews to capture those performances for a new documentary. Now, he has released a new single, taken from the final recording session of his career.
Glen Campbell has been very public about his battle with Alzheimer’s, bravely staging a farewell tour after his diagnosis in 2011 and even allowing camera crews to capture those performances for a new documentary. Now, he has released a new single, taken from the final recording session of his career.
According to Radio.com Campbell went into the studio in January 2013, just months after his final public performance. The resulting track is ‘I’m Not Gonna Miss You,’ a rumination on everything that Alzheimer’s is slowly taking from Campbell as he enters its advanced stages. Campbell co-wrote the song with Julian Raymond and recorded it specifically for ‘Glen Campbell: I’ll Be Me,’ which is set to open in theaters in late October.
The track is both sad and almost unbearably resolute, as the singer pays a final farewell to his wife and his life while acknowledging that much of the burden for what’s ahead will not fall on him: “I’m never gonna hold you like I did / Or say ‘I love you’ to the kids / You’re never gonna see it in my eyes / It’s not gonna hurt me when you cry / I’m never gonna know what you go through / All the things I’ll say or do / All the hurt and all the pain / One thing selfishly remains / I’m not gonna miss you.”
Interspersed with scenes from Campbell’s final tour as well as flashbacks from his life, the video serves as a testament to the legend’s impact in both his musical and personal life, as well as a fitting farewell to one of the leading musical lights of his generation.
Campbell was moved to a full-time care facility in April, and his wife, Kim, has said that it is unlikely that he will ever perform in public again.
I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end
You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna to miss you.
Not gonna miss you.
I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry
I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I'm not gonna miss you
I'm not gonna miss you
I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end
You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna to miss you.
Not gonna miss you.
I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry
I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I'm not gonna miss you
I'm not gonna miss you
As I am listening over and over to Mr. Campbell singing this song, I am sobbing, howling, and wondering where can I go with this pain? Where can I go? Gregory is still so much of my life that the thought of him disappearing even more stabs my heart without mercy. And his death, while a blessing, will be intolerable for me! Hearing the loss of Alzheimer's from the affected one's point of view is beautiful, strangely comforting, realizes what a gift I have been able to be for Gregory, but makes me feel so sad and alone.
Wednesday, February 26, 2014
Treading Water
I visit Gregory every day at the Lieberman Center for at least two to three hours.
I have seen a number of plays, operas, and musicals with friends taking my other ticket.
I am finishing up my second volume of poetry which will be ready for publication very soon.
When the next volume of poetry comes out, I am planning a poetry reading for the condo's book club.
I am going through the condo and making changes to reflect my living here by myself.
Slowly working my way through the condo getting rid of stuff that I no longer use or need.
Doing laundry, grocery shopping, some cooking but not as much as previously.
Getting good nights of sleep.
Playing with the kitties as well as grooming them, feeding them, and cleaning their kitty litter every morning.
Thinking on and off about future adventures around Chicago, future trips and travel.
Will be having guests spend weekends here with me.
Discovering new restaurants not only in the neighborhood but in the Chicago area.
Catching up on reading. Both fiction and non-fiction as well as unusual art books.
Continue to meditate every day, do a lot of reading on Buddhism, and am thinking about going on some kind of personal retreat.
Thinking about the next mini-museum: "MCM" or Michael's Closet Museum which will be a traveling museum show that will occupy an abandoned or loaned closet, floor to ceiling, back and side walls, nicely lit and organized, in some cultural building like an existing museum, or a library, etc.
Continuing to create jewelry and "Small Greeting Gifts" for my booth, Michael Beads, at The Galleria in Evanston (just across from the condo.)
Am catching up on TV: Downton Abby, House of Cards, Sherlock, Big Bang Theory, Mystery, etc.
Would like to again begin sending out my manuscript, GYROSCOPE: An Alzheimer's Love Story, to see if I can get it published.
Have an authentic turn of the century, Victorian Opera House Puppet Theater that my friend Eric gave me (he purchased it at the Chicago History Museum's Attic Sale some 25 years ago.) I want to create a story using the theater and "props" I have around the house by photo documentation.
But you know what? With all these goals, projects, activities, and fancies ... I feel like I am just treading water. Day at a time. Trying to get used to my new life without Gregory.
I have seen a number of plays, operas, and musicals with friends taking my other ticket.
I am finishing up my second volume of poetry which will be ready for publication very soon.
When the next volume of poetry comes out, I am planning a poetry reading for the condo's book club.
I am going through the condo and making changes to reflect my living here by myself.
Slowly working my way through the condo getting rid of stuff that I no longer use or need.
Thinking about what colors I might paint the various rooms.
Doing laundry, grocery shopping, some cooking but not as much as previously.
Getting good nights of sleep.
Playing with the kitties as well as grooming them, feeding them, and cleaning their kitty litter every morning.
Thinking on and off about future adventures around Chicago, future trips and travel.
Will be having guests spend weekends here with me.
Discovering new restaurants not only in the neighborhood but in the Chicago area.
Catching up on reading. Both fiction and non-fiction as well as unusual art books.
Continue to meditate every day, do a lot of reading on Buddhism, and am thinking about going on some kind of personal retreat.
Thinking about the next mini-museum: "MCM" or Michael's Closet Museum which will be a traveling museum show that will occupy an abandoned or loaned closet, floor to ceiling, back and side walls, nicely lit and organized, in some cultural building like an existing museum, or a library, etc.
Continuing to create jewelry and "Small Greeting Gifts" for my booth, Michael Beads, at The Galleria in Evanston (just across from the condo.)
Am catching up on TV: Downton Abby, House of Cards, Sherlock, Big Bang Theory, Mystery, etc.
Would like to again begin sending out my manuscript, GYROSCOPE: An Alzheimer's Love Story, to see if I can get it published.
Have an authentic turn of the century, Victorian Opera House Puppet Theater that my friend Eric gave me (he purchased it at the Chicago History Museum's Attic Sale some 25 years ago.) I want to create a story using the theater and "props" I have around the house by photo documentation.
But you know what? With all these goals, projects, activities, and fancies ... I feel like I am just treading water. Day at a time. Trying to get used to my new life without Gregory.
Tuesday, January 28, 2014
To Breathe, To See, To Live
The Gregory we know and love only exists in our memories now. He is still handsome although seems older. He is still playful although on a simpler level. He responds and replies but at a lower level.
His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.
He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.
He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.
He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.
Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.
I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears, to live for the loss.
His world is safe and comfortable although on a very narrow scale. His routine is established but only with guidance and at a less active pace. He is full of love, patience, and compassion as he tries to help other residents around him.
He is still full of the wonder of life although the amazement is often at the common. His memories and experiences may still be there but they are not available to him.
He loves to walk and explore but now only around the secure unit. He is creative and artistic but now with crayons and paper. He still loves to eat although mostly with his fingers, being grateful for what ever is on his plate.
He lives in the moment and by watching him do so, I have learned to do so as well. We hold hands, we stroll the halls together, I sit with him at meals, we watch re-runs of old TV shows, we read aloud, we have a snack or some chocolate, we just sit together, we lie together head on shoulder in his narrow bed.
Yet more gifts Gregory has given me lately is knowing how to live in the moment, knowing how much is enough, having unqualified compassion for others, the true value of not only forgiveness for others but mostly forgiveness of self, finally allowing patience to come easily and without fear of the future.
I love this man so much. I am grateful that he has taught me how to love him in the moment because if I try to remember the good times, the past times, or to grieve the future times ... at least for the time being ... I do not think I will be able to breath for the sobs, to see for the tears, to live for the loss.
Saturday, August 24, 2013
Overwhelmed Through My Tears
Gregory was quite distraught twice today, "Something is not right." He looked sick but it turned it he had to go to the bathroom and didn't realize it until I suggested he do so.
Recently he has had trouble navigating his dinner plate when there are too many types of food on it so I have to figure out how to serve dinner differently.
He no longer knows how a book works regarding where one begins, ends and/or how to turn pages when ready so he can no longer read before bedtime. He cannot tell me or even show me even with my help and suggestions in starting his reading and monitoring where he ends.
I cannot remember when the last time we had a conversation or when he was able to tell me what he needed to tell me short of, "I ....." without my having to guess or give up guessing.
Sometimes I do not know how I can go on like this. I will but I am grieving the current losses. I'll regroup, figure out how to cope, and move on.
Let me say that even with all of our friends, family and the love that surrounds us ... I feel so lonely. So overwhelmed. So frightened. So lonely.
Sorry to unload.
Two poems from a book our friend Roger gave me called "Poems That come to Mind:for those who love someone with dementia" in the haiku or tanka sytle, by Linda E. Austin.
I reach my hand
into the day
searching its pockets
for a penny
to buy a new beginning
• • •
in the deep, dark well
when the light at the top fades
it is only you
and the god you believe in
and sometimes that's not enough
Thursday, July 11, 2013
Bucket List of Cannots
Open front door with key.
Make a cell phone call.
Answer house phone.
Take a shower.
Brush his teeth.
Trim his nails.
Loop his belt.
Select clothing for the day.
Clean his electric razor.
Cook meals.
Set the table.
Clean up after meals.
Get his newspaper from outside the front door.
Turn on the lights.
Turn off the lights.
Keep track of where he began and ends in his book.
Put groceries away.
Go outside for a walk by himself.
Go swimming by himself.
Go anywhere for that matter by himself.
Tell the time.
Tell the day of the week.
Tell the date.
Tell the year.
Tell his age.
Follow simple directions.
Communicate simple thoughts.
Associate words with meaning.
Set an alarm clock.
Use a computer.
Sign his name.
Lock the key chain to his belt loop.
Tie shoelaces
Work the TV.
Play music on the amp.
Cook.
Microwave.
Know your name (but will recognize you.)
Water the plants.
Answer simple questions.
Tell you when he is in pain.
Tell you when he is not feeling well.
And yet when you see him and visit you will only think that he is quiet.
Make a cell phone call.
Answer house phone.
Take a shower.
Brush his teeth.
Trim his nails.
Loop his belt.
Select clothing for the day.
Clean his electric razor.
Cook meals.
Set the table.
Clean up after meals.
Get his newspaper from outside the front door.
Turn on the lights.
Turn off the lights.
Keep track of where he began and ends in his book.
Put groceries away.
Go outside for a walk by himself.
Go swimming by himself.
Go anywhere for that matter by himself.
Tell the time.
Tell the day of the week.
Tell the date.
Tell the year.
Tell his age.
Follow simple directions.
Communicate simple thoughts.
Associate words with meaning.
Set an alarm clock.
Use a computer.
Sign his name.
Lock the key chain to his belt loop.
Tie shoelaces
Work the TV.
Play music on the amp.
Cook.
Microwave.
Know your name (but will recognize you.)
Water the plants.
Answer simple questions.
Tell you when he is in pain.
Tell you when he is not feeling well.
And yet when you see him and visit you will only think that he is quiet.
Friday, January 25, 2013
Further Adventures in the Life
For several years, Gregory has had a book, really a perpetual calendar, of photographs of architecture of the world. Each day he would turn the page to reveal a new famous building from around the world. Often he would call me over to enjoy the photograph with him.
Many of the buildings he knows or we have visited. Considering that his language skills continue to disappear (almost all gone?) it has always been an easy way to "share" an experience by "looking" without the need for "talking."
Just in case you are uncertain about what a perpetual calendar is, imagine a 365 page book, with each page having the name of the month and number of the day but no day names and no years. So you can look at the building for January 25th no matter what the day of the week or the year.
For Christmas I found another book by the same publisher only with famous paintings. I thought this would be a great addition to his library and to his daily routine, especially because he continues to loose skills and therefore has fewer things to do.
Turns out that the arrival of the second book coincided with the beginning of his being unable to remember the routine for using a perpetual calendar. Even when reminded of the day's number, "Today is 25," he has been unable to follow through with finding the page that has January 25 on it.
Every morning he calls me into the living room to go through the steps. Every morning he does not remember what we talked about the day before.
I cannot, first thing in the morning, sleep still in my eyes and on my mind, teach him how to do something that he will never learn how to do. I cannot explain to him what I am feeling without hurting his feelings and I cannot continue to explain the explanation every morning.
So at the risk of making him "feel less" but with the benefit of helping me not be angry or frustrated every morning, I told him, "Every night before we go to bed, I will take over turning the pages so the books will be ready for you in the morning."
He was OK with that (at least on the surface but who knows what he really feels below the surface as he is unable to explain or describe his feelings.)
I wish that I could make these transitions (which I really don't mind making) more smoothly and not after anger, frustration, and unkind words to Gregory. I work at bringing my emoitonal reactions and my intellectual understanding closer but FUCK, I am so tired ... and lonely ... and sad.
Many of the buildings he knows or we have visited. Considering that his language skills continue to disappear (almost all gone?) it has always been an easy way to "share" an experience by "looking" without the need for "talking."
Just in case you are uncertain about what a perpetual calendar is, imagine a 365 page book, with each page having the name of the month and number of the day but no day names and no years. So you can look at the building for January 25th no matter what the day of the week or the year.
For Christmas I found another book by the same publisher only with famous paintings. I thought this would be a great addition to his library and to his daily routine, especially because he continues to loose skills and therefore has fewer things to do.
Turns out that the arrival of the second book coincided with the beginning of his being unable to remember the routine for using a perpetual calendar. Even when reminded of the day's number, "Today is 25," he has been unable to follow through with finding the page that has January 25 on it.
Every morning he calls me into the living room to go through the steps. Every morning he does not remember what we talked about the day before.
I cannot, first thing in the morning, sleep still in my eyes and on my mind, teach him how to do something that he will never learn how to do. I cannot explain to him what I am feeling without hurting his feelings and I cannot continue to explain the explanation every morning.
So at the risk of making him "feel less" but with the benefit of helping me not be angry or frustrated every morning, I told him, "Every night before we go to bed, I will take over turning the pages so the books will be ready for you in the morning."
He was OK with that (at least on the surface but who knows what he really feels below the surface as he is unable to explain or describe his feelings.)
I wish that I could make these transitions (which I really don't mind making) more smoothly and not after anger, frustration, and unkind words to Gregory. I work at bringing my emoitonal reactions and my intellectual understanding closer but FUCK, I am so tired ... and lonely ... and sad.
Thursday, November 1, 2012
Some Flip Observations
Shoes and sox have turned into wondering "What's next?"
The belt and the belt loops no longer recognize each other.
Reading glasses when worn make the room look blurry.
Reading glasses when not worn do not help with reading.
Sleep clothes when left in the bathroom are not in the drawer at bedtime.
Underpants and undershirts no longer have names or identities.
For that matter underpants and undershirts no longer have fronts or backs.
Sometimes pointing helps, sometimes the response is non-directional.
Button-up shirts are pulled over and pull-over shirts have too many holes.
A hanger's only purpose is confusion.
Taking something out of a pocket from the inside does not work.
Knives and forks do not work as easily as fingers.
"No" often means "Yes." So what does "Yes" mean?
Putting ice into a glass at dinnertime consists of too many steps.
The belt and the belt loops no longer recognize each other.
Reading glasses when worn make the room look blurry.
Reading glasses when not worn do not help with reading.
Sleep clothes when left in the bathroom are not in the drawer at bedtime.
Underpants and undershirts no longer have names or identities.
For that matter underpants and undershirts no longer have fronts or backs.
Sometimes pointing helps, sometimes the response is non-directional.
Button-up shirts are pulled over and pull-over shirts have too many holes.
A hanger's only purpose is confusion.
Taking something out of a pocket from the inside does not work.
Knives and forks do not work as easily as fingers.
"No" often means "Yes." So what does "Yes" mean?
Putting ice into a glass at dinnertime consists of too many steps.
Friday, February 10, 2012
New Hope for Mice
This photograph was part of the Wall Street Journal article which I just posted. I was reading the article on my iPad (which is a new behavior for me) and when I flicked to the next page there was a full life picture of these mice who were part of the study. It compares normal mouse nest building behaviors and Alzheimer's Mouse nest building inabilities. The final picture shows the Alz Mouse, after the "miracle drug," being better able to build his nest.
Just looking at the photographs and reading through the captions brought me to sobbing. I was so sad for the mouse but seeing the obvious loss in the mouse'a ability to accomplish something so innate, simple yet crucial like nest building brought home what Gregory goes through on a daily, if not hourly basis.
I will be better in my support of him.
Monday, January 16, 2012
Monday, July 4, 2011
Love
Comments on: "Gate C22" by Ellen Bass
"...often deep, always poignant, frequently woven with threads of grief and loss as well as starlight. And always, always, so achingly human, which is why love is her subject over and again."
Ten Poems to Change Your Life Again and Again by Roger Housden. P 33. 2007.
"...often deep, always poignant, frequently woven with threads of grief and loss as well as starlight. And always, always, so achingly human, which is why love is her subject over and again."
Ten Poems to Change Your Life Again and Again by Roger Housden. P 33. 2007.
Wednesday, June 15, 2011
Existence
Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
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