It's all about Mom
Last week, I had the privilege of spending a lot of time with Mom. At 74, she is at least 10 years into her initial diagnosis of Alzheimer related dementia. We have reason to believe she was already experiencing memory issues at least 3 years earlier, based on some journals we found in Florida. We also have reason to believe that this diagnosis may have been "lazy" - based on observations of behavior rather than physical verification. Last year, she had strokes that brought the question up that she may have a combination of both Alzheimer related dementia and vascular dementia. This is likely a good thing, in the dementia world as vascular dementia isn't as fast moving as the big "A". There doesn't seem to be, based on various doctors she sees, any reason to verify this combination. There is no difference in treatment at this point. She has no additional blockages that would be a vascular issue.
So, there are things Mom can do, and things she cannot do. There are things she remembers, and things she cannot remember. Calmness is important, as is routine. Some variety is good, but only with warning and reminding that things will be different "today". Her routine last week was pretty stable, with the major difference of me being the caregiver primarily rather than Dad. I am aware of Mom's capabilities and her limitations, as well as Dad's capabilities and limitations.
Regardless of how Mom's day is, she sundowns. Around the time the sun begins to fade in the sky, we see her losing her grip on what is going on in the world right at that moment. Well, at least that's what I thought. I've come to a different conclusion over this past week.
Mom begins by asking, "When are we going home?" At that point, be prepared for what I call the "script".
"You are home. This is where you live. There is your bed, there is your bedroom, there is your dresser, there are your clothes."
Mom: "Where is this house?" She goes to look out the window. "Oh, Nichols Avenue."
"Yes, that's where we all live together. You and Dad, me and Dirk. For over 9 years now."
"Why?", Mom says.
Here's where you have to keep it simple. Too much information, she's snowed under. Too little, she keeps asking.
"Because you don't live in Lordship anymore, you live with us."
"But where are my children? I have to go home to them."
"Ma, we're grown. Amy lives with her husband and family, and our children are grown and moved out. Nancy is gone."
At this point she sometimes remember that Nancy died. She gets a little sad, but nods her head in understanding. Then she goes to heart of the matter...
"Well, how is this all working out? Are we horrible to live with? Is it bad for you and Dirk?"
I have to segue into past history here. When I was 12 (Nancy was 8, Amy was 4), Mom's Mom came to live with us. It was difficult to say the least. You may want to judge me, and that's all right, however Nonny (Mom's Mom) was very unhappy, and took it out on us, particularly Nancy. She held grudges forever, was quite two-faced (to my Dad, she was so obsequious, and overly helpful, to us? She was the witch from Oz!). She took over the living room, was rude to us even when we tried to be nice (well, at least the first few months!), and used to drink on Sundays at the local bar. She eventually was told she had to leave when she made bad comments in front of my Dad about my children. Nonny didn't know Dad was there, and made some comments about how she "just wanted some peace and quiet for Christmas. These children...". Dad heard and she had to leave.
Back to Mom. When she asked about being horrible, she meant was she like Nonny.
"Mom, sometimes we all disagree and have some discussions, but it isn't like Nonny. Our kids were grown when you came here.
"Well, thank God it isn't like that. So we live here with you and it's ok."
"Yes, Mom, it is OK."
Sundowning is when I feel my Mom is really my Mom again. I've started to look forward to reminding her what she does now, and who we all are. And I've figured out what to give her for Mother's Day this year, too. She needs a book of her life as it is now, and as it was. Pictures of her Lordship house, pictures of her daughters, and our kids, with captions. That is the first part...then pictures of where she lives now, with how we all look now. I will do everything I can to keep her grounded. May be this will help.
So, there are things Mom can do, and things she cannot do. There are things she remembers, and things she cannot remember. Calmness is important, as is routine. Some variety is good, but only with warning and reminding that things will be different "today". Her routine last week was pretty stable, with the major difference of me being the caregiver primarily rather than Dad. I am aware of Mom's capabilities and her limitations, as well as Dad's capabilities and limitations.
Regardless of how Mom's day is, she sundowns. Around the time the sun begins to fade in the sky, we see her losing her grip on what is going on in the world right at that moment. Well, at least that's what I thought. I've come to a different conclusion over this past week.
Mom begins by asking, "When are we going home?" At that point, be prepared for what I call the "script".
"You are home. This is where you live. There is your bed, there is your bedroom, there is your dresser, there are your clothes."
Mom: "Where is this house?" She goes to look out the window. "Oh, Nichols Avenue."
"Yes, that's where we all live together. You and Dad, me and Dirk. For over 9 years now."
"Why?", Mom says.
Here's where you have to keep it simple. Too much information, she's snowed under. Too little, she keeps asking.
"Because you don't live in Lordship anymore, you live with us."
"But where are my children? I have to go home to them."
"Ma, we're grown. Amy lives with her husband and family, and our children are grown and moved out. Nancy is gone."
At this point she sometimes remember that Nancy died. She gets a little sad, but nods her head in understanding. Then she goes to heart of the matter...
"Well, how is this all working out? Are we horrible to live with? Is it bad for you and Dirk?"
I have to segue into past history here. When I was 12 (Nancy was 8, Amy was 4), Mom's Mom came to live with us. It was difficult to say the least. You may want to judge me, and that's all right, however Nonny (Mom's Mom) was very unhappy, and took it out on us, particularly Nancy. She held grudges forever, was quite two-faced (to my Dad, she was so obsequious, and overly helpful, to us? She was the witch from Oz!). She took over the living room, was rude to us even when we tried to be nice (well, at least the first few months!), and used to drink on Sundays at the local bar. She eventually was told she had to leave when she made bad comments in front of my Dad about my children. Nonny didn't know Dad was there, and made some comments about how she "just wanted some peace and quiet for Christmas. These children...". Dad heard and she had to leave.
Back to Mom. When she asked about being horrible, she meant was she like Nonny.
"Mom, sometimes we all disagree and have some discussions, but it isn't like Nonny. Our kids were grown when you came here.
"Well, thank God it isn't like that. So we live here with you and it's ok."
"Yes, Mom, it is OK."
Sundowning is when I feel my Mom is really my Mom again. I've started to look forward to reminding her what she does now, and who we all are. And I've figured out what to give her for Mother's Day this year, too. She needs a book of her life as it is now, and as it was. Pictures of her Lordship house, pictures of her daughters, and our kids, with captions. That is the first part...then pictures of where she lives now, with how we all look now. I will do everything I can to keep her grounded. May be this will help.
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