What is primary, progressive aphasia?
"What is primary, progressive aphasia?" asked our new weekend caregiver, who has done memory care for five years. How many times have I had to answer that question when describing Becky's cruel condition. For short, it is PPA. I have had a neurologist not know what that stands for.
You will find out if you read this blog. It is a rare form of dementia that strikes the frontal lobes of the brain first, then marches on to ravage the rest of the brain. Becky was diagnosed in March of 2014, although the symptoms were noticeable earlier. It took years to get the proper diagnosis.
Why should I--someone who has written many books and who has a web page--start another blog? I write to save my life, to strain for some perspective in the midst of mind decay. Perhaps what I write will touch some of you who care for those with PPA or for those other forms of dementia.
In a few months, my book, Walking Through Twilight: A Wife's Illness, a Philosopher's Lament, will be published by InterVarsity Press in a few months. I thought that would be enough. It isn't. Facebook has been an outlet, but this will be a space dedicated to the plight of my once-brilliant wife, who was a writer and editor: Rebecca Merrill Groothuis.
Today: We have yet another weekend caregiver. Another woman lives with us and serves Becky 9-5 on weekdays. The weekend person stays in a guest room and is on 24-7 (for now). These transitions are painful for all of us. Meeting a new person without PPA can be unnerving, especially if you are doing to stay in their home. I have to coordinate the new relationship and am usually at a loss. Much of my life in the last five years or more has been "at a loss."
Becky becomes inconsolable often: the blankness meets melancholy and even rage at times. She is listless, restless--not knowing what to do because she cannot know what she used to know. Agency needs knowledge, and she lacks so much knowledge. She often asks me in halting words, "What do I do?" Recently, she came into my office and said, "Everything is dead up there." I translated this to mean, "I don't know what to do because there is no one upstairs. I often don't know what to do either.
Becky was an author and editor. She edited my first eleven books. She wrote Good News for Women and Women Caught in the Conflict. (I will not debate her views on gender on this blog.) She always had something in mind, something to do. She used to organize all our finances and paperwork. About five years ago, in desperation, she gave it all to me--a scatterbrain philosopher. There was no other way.
"What do I do?" I am mostly helpless. She cannot read, write, or edit. She cannot drive or go for a walk by herself. She can barely talk and cannot use the telephone. She is not on any technology and knows little about current events. Good for her on that one. She used to sing and play piano. Friends come over to sing hymns with her, but often she can only hum along. She gradually lost her ability to play piano several years ago. She tried to relearn. I remember taking her to a piano teacher's home and listening to them try to make something work. It did not.
This will be a diary of sorts. I welcome your comments. Perhaps we can suffer well together, since that is about all I have for now.
You will find out if you read this blog. It is a rare form of dementia that strikes the frontal lobes of the brain first, then marches on to ravage the rest of the brain. Becky was diagnosed in March of 2014, although the symptoms were noticeable earlier. It took years to get the proper diagnosis.
Why should I--someone who has written many books and who has a web page--start another blog? I write to save my life, to strain for some perspective in the midst of mind decay. Perhaps what I write will touch some of you who care for those with PPA or for those other forms of dementia.
In a few months, my book, Walking Through Twilight: A Wife's Illness, a Philosopher's Lament, will be published by InterVarsity Press in a few months. I thought that would be enough. It isn't. Facebook has been an outlet, but this will be a space dedicated to the plight of my once-brilliant wife, who was a writer and editor: Rebecca Merrill Groothuis.
Today: We have yet another weekend caregiver. Another woman lives with us and serves Becky 9-5 on weekdays. The weekend person stays in a guest room and is on 24-7 (for now). These transitions are painful for all of us. Meeting a new person without PPA can be unnerving, especially if you are doing to stay in their home. I have to coordinate the new relationship and am usually at a loss. Much of my life in the last five years or more has been "at a loss."
Becky becomes inconsolable often: the blankness meets melancholy and even rage at times. She is listless, restless--not knowing what to do because she cannot know what she used to know. Agency needs knowledge, and she lacks so much knowledge. She often asks me in halting words, "What do I do?" Recently, she came into my office and said, "Everything is dead up there." I translated this to mean, "I don't know what to do because there is no one upstairs. I often don't know what to do either.
Becky was an author and editor. She edited my first eleven books. She wrote Good News for Women and Women Caught in the Conflict. (I will not debate her views on gender on this blog.) She always had something in mind, something to do. She used to organize all our finances and paperwork. About five years ago, in desperation, she gave it all to me--a scatterbrain philosopher. There was no other way.
"What do I do?" I am mostly helpless. She cannot read, write, or edit. She cannot drive or go for a walk by herself. She can barely talk and cannot use the telephone. She is not on any technology and knows little about current events. Good for her on that one. She used to sing and play piano. Friends come over to sing hymns with her, but often she can only hum along. She gradually lost her ability to play piano several years ago. She tried to relearn. I remember taking her to a piano teacher's home and listening to them try to make something work. It did not.
This will be a diary of sorts. I welcome your comments. Perhaps we can suffer well together, since that is about all I have for now.
Dear Dr. G -
ReplyDeleteEven though we have never met I have followed you on FB for years after seeing some thoughtful thing you posted shared on a friend's page. I have learned so much from you and always look forward to your posts for all the different kinds of things you share.
I was in charge of my mother's care for the last 5 years of her life. She lived with us. I had 3 school age children in the home. She had some kind of dementia or Alzheimer's but not PPA. She died in '07.
Honestly, I try not to think about all of that. It's just too hard and too scary and I just don't want to deal with the unanswerables that turn my gut into knots, make me wonder if I really loved her as well as I should have, and many, many other hard and hurtful things.
I am so grieved and horrified that this is happening to your young wife and to you. I can't imagine a deeper anguish than this. So I will read your blog and read your book and risk opening that place in my heart and allow myself to grieve with you. May God have mercy.
Thank you for all you do.
Is there such a thing as a theology of diminishment? What writings have you found helpful?
ReplyDelete