Today was a delightful spring-like, sunny, summer day. Today was the day my Mother's world fell apart. The day Dr. A told her she has Alzheimer's. The day when her "jokes" and her excuses fell on deaf ears, the day she was told by a doctor she should no longer drive, the day she was told if you don't take your blood pressure medicine you are asking to have a stroke, the day she was told she can no longer take care of any of her own finances, the day she was told she no longer can control her own medicine. The day her daughter became the enemy and her husband became a Judas.
Today was the day I took her out to lunch and she saw an old friend whose name she couldn’t remember. The day she asked her friend how her husband was and found out her friend’s husband had died in April. From Alzheimer’s. The day she told her friend that she's been tested for Alzheimer's but can't possibly have it. The day she told me I am always trying to find something wrong with her.
Today is the day that Dr. A told her that since her last appointment two years ago there have been significant changes in her memory, in being able to retrieve words, in impulse control. It was a beautiful day full of anger, sadness, denial and ugliness.
Mom says she remembers the conversation we all had on the Monday the 21st of June, but she remembers telling us we are wrong and she is just fine. She asked Dr. A today at least three times (and he reiterated it several more) if she has Alzheimer’s “now.” She was told yes each time.
What do you say to someone who has been told they are going to lose pieces of their mind and eventually die? What do you say to them when they wonder out loud if they would be better off with a brain tumor or brain cancer?
What do you say, how can you make them understand they are not being punished by God when it seems to them they are?
What can you do except hug and kiss them and tell them you love them? How can you possibly say, “It’s going to be okay?” How can it possibly "be okay?"
Wednesday, June 30, 2010
Sunday, June 27, 2010
Peace Found- Along With Joy
Mom and Dad went to church this morning and have been gone all day. They just got home and Dad came in to tell me that while they were at the mall, Mom stopped and talked to two of their acquaintances at the jewelry store. Mom told them she has Alzheimer's. Dad said she was matter-of-fact about it. She said she doesn't recognize it, but that evidently others do.
I am so grateful Lord. I am so grateful. What I perceived as being something bad, her not talking about the AD, was just not what i thought. She has accepted this for now and she is talking about it to others. I am sorry for having such little faith.
Perhaps I was right when I thought my feelings had something to do with the Quaker song, "Tis A Gift To Be Simple." How blessed I am. And what a blessing for Mom to find acceptance. Maybe the joy was right in front of me and it was my eyes that were blind- not Mom's.
I am so grateful Lord. I am so grateful. What I perceived as being something bad, her not talking about the AD, was just not what i thought. She has accepted this for now and she is talking about it to others. I am sorry for having such little faith.
Perhaps I was right when I thought my feelings had something to do with the Quaker song, "Tis A Gift To Be Simple." How blessed I am. And what a blessing for Mom to find acceptance. Maybe the joy was right in front of me and it was my eyes that were blind- not Mom's.
Looking for the Joy
The relief of my Mom knowing she has Alzheimer's has subsided. We haven't talked about it since Tuesday and I am afraid to bring it up. I am afraid she will have forgotten and I will cause unnecessary pain and suffering for us all.
She is still mad about the car. She hates it and poor Dad is getting the brunt of her anger over it. I am sure this will change when Wednesday comes and we visit with Dr. A. She will have something else to be upset about.
I'm not saying that to be flip or "cute". It's just what it is. Changes are difficult. As you get older, they get more difficult. When a person has dementia they are extremely difficult.
I'm looking for the pieces of joy that I know are still available to her. I just have to find them and bring them to her attention. But I'm seeing sometimes joy is difficult to recognize when your life is turned upside down with Alzheimer's. The joy I see doesn't make sense to her at times and is therefore not joyful.
For some reason- which hasn't has made itself known to me yet- this reminds me of the Quaker song, "Tis the Gift to be Simple."
'Tis the gift to be simple,
'tis the gift to be free,
'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,'
Twill be in the valley of love and delight.
When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,
To turn, turn will be our delight,
Till by turning, turning we come round right.
So may it be for me.
She is still mad about the car. She hates it and poor Dad is getting the brunt of her anger over it. I am sure this will change when Wednesday comes and we visit with Dr. A. She will have something else to be upset about.
I'm not saying that to be flip or "cute". It's just what it is. Changes are difficult. As you get older, they get more difficult. When a person has dementia they are extremely difficult.
I'm looking for the pieces of joy that I know are still available to her. I just have to find them and bring them to her attention. But I'm seeing sometimes joy is difficult to recognize when your life is turned upside down with Alzheimer's. The joy I see doesn't make sense to her at times and is therefore not joyful.
For some reason- which hasn't has made itself known to me yet- this reminds me of the Quaker song, "Tis the Gift to be Simple."
'Tis the gift to be simple,
'tis the gift to be free,
'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,'
Twill be in the valley of love and delight.
When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,
To turn, turn will be our delight,
Till by turning, turning we come round right.
So may it be for me.
Friday, June 25, 2010
Phone call with Dr.A
I sent a short letter to Dr. A at the beginning of the week to let him know of the musical hallucinations Mom has been having. Dad and I did not mention them when we saw him two weeks ago. I decided to call Dr. A to let him know what had happened on Monday and to find out what he is going to say on Wednesday. I don't want to be blindsided again. Two years ago when he diagnosed MCI I was in shock. I was certain he would say Alzheimer's, but he didn't. Dad was in shock because he did really think there was anything wrong.
Dr. A was kind enough to call me back and I explained what was going on and that we felt we needed to know what is going to happen on Wednesday; we need to know what he is going to tell Mom.
Dr. A said Mom's MCI has progressed to Alzheimer's. He will be telling her it is time to relinquish money decisions, overseeing her medication and that he will recommend she no longer drives. He will also recommend she take an anti-depressant.
Dr. A was kind enough to call me back and I explained what was going on and that we felt we needed to know what is going to happen on Wednesday; we need to know what he is going to tell Mom.
Dr. A said Mom's MCI has progressed to Alzheimer's. He will be telling her it is time to relinquish money decisions, overseeing her medication and that he will recommend she no longer drives. He will also recommend she take an anti-depressant.
Thursday, June 24, 2010
Car and Driver
Dad has a new car. I started to write, "Mom and Dad have a new car." But it is Dad who owns the car, Dad who will drive the car. Not Mom.
Mom doesn't like the new car. It's silver, their last car was silver. It's a two door, she hates two doors.
"Mom, Dad got a two door because it is easier to get in the wider doors."
Mom says she has no problem getting in or out of a car
"Mom- Dad does. He has had two knee replacements and a bad back, remember?"
Mom doesn't like it.
When they went to pick up the car, the dealer handed Mom a set of keys. When she got home, I asked her for the keys. Dad asked me to- he was getting enough grief about the car as it was. I told her we need to have a set of keys in the garage so we can move the car if we need to.
She wanted to keep the keys. She wants to drive the car. If Dad gets sick, she wants to drive him to the hospital. Had to be the bad guy again. "No Mom, you aren't' driving. No- not even around the block. No- if Dad gets sick we will get help you do not have to drive. No Mom you are not going to drive. No. No. No."
She gave me the keys- very angry- almost threw them.
They are now in the garage buried under other keys...
Mom doesn't like the new car. It's silver, their last car was silver. It's a two door, she hates two doors.
"Mom, Dad got a two door because it is easier to get in the wider doors."
Mom says she has no problem getting in or out of a car
"Mom- Dad does. He has had two knee replacements and a bad back, remember?"
Mom doesn't like it.
When they went to pick up the car, the dealer handed Mom a set of keys. When she got home, I asked her for the keys. Dad asked me to- he was getting enough grief about the car as it was. I told her we need to have a set of keys in the garage so we can move the car if we need to.
She wanted to keep the keys. She wants to drive the car. If Dad gets sick, she wants to drive him to the hospital. Had to be the bad guy again. "No Mom, you aren't' driving. No- not even around the block. No- if Dad gets sick we will get help you do not have to drive. No Mom you are not going to drive. No. No. No."
She gave me the keys- very angry- almost threw them.
They are now in the garage buried under other keys...
Wednesday, June 23, 2010
Mom Knows She Has Alzheimer's
It happened Monday night. Mom and Dad's car is dying a painful and expensive death. It's time to buy a new one. But the talk about buying a new car turned ugly when Mom decided she was the one to make the decision which car to buy and insisted she would be driving the new car.
I told her that she would not be driving and a loud "discussion" ensued. I finally called out to Dad and my DH and told them both to come into the dining room to talk. They did.
Its hard to explain what happened, but it was Dad that told Mom she has Alzheimer's. He broke down crying. I don't remember his ever crying like that before. Mom listened to what we had to say. She asked why we didn't tell her sooner and we explained that we had tried, but when we tried she would deny it and would get very angry.
It was hard. Very hard. But in the end it seemed to be the right time and the right place. God has His own timing. And there is a time for everything under heaven...
Dad told Mom how much she means to him and how he never wanted to spend his life with anyone other than her. He told her he still wants to spend the rest of his life with her and that they will get through this together.
Mom talked about how unfair this all is. Her hearing loss, her problems with her mouth, and now this. And it is unfair. She wanted to know what she had done to deserve this. The answer. Nothing.
My DH spent a lot of time talking to Mom and telling her we will take care of her, that we love her and that we are family. He gave her a big hug and kissed her and told her everything would be okay.
It was very emotional and yet very cathartic. Mom told us it explained a lot of things she didn't understand. D told her how important it is for her to take her medications as prescribed and that she needs to let me help her with that.
Its funny I remember everything Dad and my DH said, but most of what I said is a blank. I can still feel the emotions- they were very raw.
Mom wanted to know who knows she has this disease. She apologized for being a "burden."
There seems to be a sort of peace now. And it continued into Tuesday. Mom and I had long talks on Tuesday about Alzheimer's and about her condition. We talked about end of life issues and her wishes. It was a very good day- and Mom seemed to still be at peace. She joked about her now having an excuse for not remembering things and said she would "try" not to take advantage of it and then laughed.
I pray this continues although I know the chances are slim. But I will cherish this time for as long as it lasts.
I told her that she would not be driving and a loud "discussion" ensued. I finally called out to Dad and my DH and told them both to come into the dining room to talk. They did.
Its hard to explain what happened, but it was Dad that told Mom she has Alzheimer's. He broke down crying. I don't remember his ever crying like that before. Mom listened to what we had to say. She asked why we didn't tell her sooner and we explained that we had tried, but when we tried she would deny it and would get very angry.
It was hard. Very hard. But in the end it seemed to be the right time and the right place. God has His own timing. And there is a time for everything under heaven...
Dad told Mom how much she means to him and how he never wanted to spend his life with anyone other than her. He told her he still wants to spend the rest of his life with her and that they will get through this together.
Mom talked about how unfair this all is. Her hearing loss, her problems with her mouth, and now this. And it is unfair. She wanted to know what she had done to deserve this. The answer. Nothing.
My DH spent a lot of time talking to Mom and telling her we will take care of her, that we love her and that we are family. He gave her a big hug and kissed her and told her everything would be okay.
It was very emotional and yet very cathartic. Mom told us it explained a lot of things she didn't understand. D told her how important it is for her to take her medications as prescribed and that she needs to let me help her with that.
Its funny I remember everything Dad and my DH said, but most of what I said is a blank. I can still feel the emotions- they were very raw.
Mom wanted to know who knows she has this disease. She apologized for being a "burden."
There seems to be a sort of peace now. And it continued into Tuesday. Mom and I had long talks on Tuesday about Alzheimer's and about her condition. We talked about end of life issues and her wishes. It was a very good day- and Mom seemed to still be at peace. She joked about her now having an excuse for not remembering things and said she would "try" not to take advantage of it and then laughed.
I pray this continues although I know the chances are slim. But I will cherish this time for as long as it lasts.
Saturday, June 19, 2010
The Rest of the Trip...
The rest of the trip was uneventful for the most part. Once the sun came out and the rain stopped things got a bit better.
One night we went into Sturgeon Bay and had dinner at the Nightingale Supper Club. Had a very good dinner-the specialty is Prime Rib.
As we were leaving, there was a lot of commotion at one of the tables. An older woman had something stuck in her throat and one of the other women at the table was doing the Heimlich Maneuver. Mom got to the table quickly and was standing there and I knew she wanted to help. I went back for her and grabbed her by the arm and got her away. The hostess told us that the table was a table of retired nurses and that they had it under control and that the rescue unit had been called. That seemed to make Mom feel better about it all.
The trip home was fine. The weather was much better and traffic not too bad. Two days of laundry followed. Yippee!
One night we went into Sturgeon Bay and had dinner at the Nightingale Supper Club. Had a very good dinner-the specialty is Prime Rib.
As we were leaving, there was a lot of commotion at one of the tables. An older woman had something stuck in her throat and one of the other women at the table was doing the Heimlich Maneuver. Mom got to the table quickly and was standing there and I knew she wanted to help. I went back for her and grabbed her by the arm and got her away. The hostess told us that the table was a table of retired nurses and that they had it under control and that the rescue unit had been called. That seemed to make Mom feel better about it all.
The trip home was fine. The weather was much better and traffic not too bad. Two days of laundry followed. Yippee!
Thursday, June 17, 2010
Trip Day 2
We were all up early. Went to breakfast at 8 am. Nice little place called Sister Bay Café. I had the most fantastic French Toast with crème cheese and blueberry filling. All very fresh. It came with a nice pile of fresh cut strawberries. Everyone else had good food too.
Decided to take a riding “tour” in our car and go up to the tip of the peninsula and then back down. It rained most of the day. Mom has decided the front seat is hers again (poor D) and I’ve been sitting in the back seat behind D. By late afternoon, I had to ask Mom to trade places with me as I was having leg cramps and spasms. She did so, neither unhappy or happy.
I guess that is how she has been. Neither happy or unhappy. A few snide remarks here and there, some guilt producing ones. I had to get up and go outside at one point.. I opened a can of cashews and took a few and went back to my seat. As I was opening the can she said, “Oh good. I was thinking about opening that.” Then when I sat down she was drippingly sarcastic when she said, “Oh thank you so much for thinking of me and bringing me some cashews too. How kind of you.” That upset me so instead of saying something I got up and went out on the porch. That made her angry.
We rode and rode and rode in the car. After breakfast she wanted to go to Wilson’s for ice cream. We told her it was too early. So when it was time for lunch, we took her to Wilson’s and she wouldn’t get ice cream then. And it was too noisy. And there were too many kids. And the jukebox shouldn’t be on. And she couldn’t decide what to have to eat, so she had a club sandwich (the same thing she had the day before.)
Dad has really been hurting. He could barely walk in the morning, the pain in his back was too great. D and I went to a Pamida and got him some Thera Wraps (sort of a portable heating pad). Put one on Dad’s back and it really did help.
Had dinner at the same place we had breakfast. We met the owner- a nice gal from Norway and our waiter was from Macedonia. Another good meal.
Decided to take a riding “tour” in our car and go up to the tip of the peninsula and then back down. It rained most of the day. Mom has decided the front seat is hers again (poor D) and I’ve been sitting in the back seat behind D. By late afternoon, I had to ask Mom to trade places with me as I was having leg cramps and spasms. She did so, neither unhappy or happy.
I guess that is how she has been. Neither happy or unhappy. A few snide remarks here and there, some guilt producing ones. I had to get up and go outside at one point.. I opened a can of cashews and took a few and went back to my seat. As I was opening the can she said, “Oh good. I was thinking about opening that.” Then when I sat down she was drippingly sarcastic when she said, “Oh thank you so much for thinking of me and bringing me some cashews too. How kind of you.” That upset me so instead of saying something I got up and went out on the porch. That made her angry.
We rode and rode and rode in the car. After breakfast she wanted to go to Wilson’s for ice cream. We told her it was too early. So when it was time for lunch, we took her to Wilson’s and she wouldn’t get ice cream then. And it was too noisy. And there were too many kids. And the jukebox shouldn’t be on. And she couldn’t decide what to have to eat, so she had a club sandwich (the same thing she had the day before.)
Dad has really been hurting. He could barely walk in the morning, the pain in his back was too great. D and I went to a Pamida and got him some Thera Wraps (sort of a portable heating pad). Put one on Dad’s back and it really did help.
Had dinner at the same place we had breakfast. We met the owner- a nice gal from Norway and our waiter was from Macedonia. Another good meal.
Wednesday, June 16, 2010
Trip Day 1
June 14, 2010
Left at 6:00 AM. Leaving went a lot smoother than I thought it might. And there weren’t a lot of unnecessary things packed, as far as I can tell right now. Just hoping all is packed that needed to be.
Stopped in El Paso, Illinois for breakfast. Mom said her battery on her cochlear implant was dead, so I went out to the car to get one she said was in her “carry-on” luggage- a small black case. It was raining, and I took everything out of the case to look, but no batteries. The charger was in there… Hoping the batteries were packed elsewhere and actually made it on the trip with us.
Mom talked non-stop from Camargo to El Paso. At breakfast, it continued. If she is not talking to us, she is talking to herself. After we ordered our food, Mom said (to herself)” I need to take my after breakfast pills. If I ever get my breakfast. Now why did I say that? I don’t know E. Why did you? What did you order, is my coffee decaf?” . She asks us odd questions and gets upset because we don’t get the “joke.”
The trip took a total of 10 hours. I drove after breakfast and had fun driving with Mom in the co-pilot seat through Rockford. Lots of lane changes and on and off ramps with Mom talking to me. Thank goodness for the GPS where I could try to listen to the directions and quickly see what lane I needed to be in. Oh yes- and try to explain about the GPS to Mom at the same time.
Then to give Dad a break from the back seat, Mom and I went to the back while D drive and Dad was his co-pilot.
Found the resort and it is very nice. Thank goodness for two bedrooms and two bathrooms!
Door County has changed in many ways since 15 years ago. Had dinner at Al Johnsons and while it all looked the same, the food wasn’t as good and was much more expensive. It used to be a pretty reasonable place to eat, but the cheaper items are off the menu and dinner for the four of us was over $120 with the tip. Ouch.
D and I went to bed early- actually D went to bed early and I went to bed at my normal time. Spent a lot of time listening to my parents reminisce about their honey-moon in Door County and other Door County adventures. It was awesome that Mom remembered so much. What is sad though is she doesn’t seem to be finding pleasure in it. Maybe it was just the trip…
Left at 6:00 AM. Leaving went a lot smoother than I thought it might. And there weren’t a lot of unnecessary things packed, as far as I can tell right now. Just hoping all is packed that needed to be.
Stopped in El Paso, Illinois for breakfast. Mom said her battery on her cochlear implant was dead, so I went out to the car to get one she said was in her “carry-on” luggage- a small black case. It was raining, and I took everything out of the case to look, but no batteries. The charger was in there… Hoping the batteries were packed elsewhere and actually made it on the trip with us.
Mom talked non-stop from Camargo to El Paso. At breakfast, it continued. If she is not talking to us, she is talking to herself. After we ordered our food, Mom said (to herself)” I need to take my after breakfast pills. If I ever get my breakfast. Now why did I say that? I don’t know E. Why did you? What did you order, is my coffee decaf?” . She asks us odd questions and gets upset because we don’t get the “joke.”
The trip took a total of 10 hours. I drove after breakfast and had fun driving with Mom in the co-pilot seat through Rockford. Lots of lane changes and on and off ramps with Mom talking to me. Thank goodness for the GPS where I could try to listen to the directions and quickly see what lane I needed to be in. Oh yes- and try to explain about the GPS to Mom at the same time.
Then to give Dad a break from the back seat, Mom and I went to the back while D drive and Dad was his co-pilot.
Found the resort and it is very nice. Thank goodness for two bedrooms and two bathrooms!
Door County has changed in many ways since 15 years ago. Had dinner at Al Johnsons and while it all looked the same, the food wasn’t as good and was much more expensive. It used to be a pretty reasonable place to eat, but the cheaper items are off the menu and dinner for the four of us was over $120 with the tip. Ouch.
D and I went to bed early- actually D went to bed early and I went to bed at my normal time. Spent a lot of time listening to my parents reminisce about their honey-moon in Door County and other Door County adventures. It was awesome that Mom remembered so much. What is sad though is she doesn’t seem to be finding pleasure in it. Maybe it was just the trip…
Sunday, June 13, 2010
Mom has forgotten she told me I could take care of her medicines. I am in the dog house big time. But that's okay.
What is bad is finding my mother standing in front of the drawer where I put her meds and seeing her with a fistful of medicine.
Me: "What are you doing?"
Her: I can't find my medicine and I will not take something if I don't recognize it."
Me: "What is it you don't recognize?" (Thinking she went to take one of her bedtime pills and didn't know what it was because she keeps forgetting to take it.)
Mom: Where are my pills for tomorrow?
Me: In your room where they always are.
Mom: No they're not.
Notice pills in Mom's hand...
Me: Why are you holding those pills?
Mom: They shouldn't be in here.
Me: Mom, let me have the pills.
Mom: No, their mine.
Me: I know, but I'm taking care of them for you.
Mom: No you are not!
Me: Yes, I am. (Holding out my hand) Give me the pills (sternly- but not yelling- kind of like talking to a child that may hurt themselves if they don't do what you say quickly)
Mom: Fine (drops pills- some reach my hand, some hit the floor)
Me: Dammit
Mom: What are you going to do with them?
Me: I'll take care of them Mom.
Mom: Where are my pills for the morning?
Me: (Trying to take her hand) Come here I'll show you.
Mom: (Angry) Don't you try to make me come with you. I am not a child!
Me: I know Mom, I'm sorry. Please come with me.
We go into the bedroom and her pill box is on the counter. It is one that separates, so you can take Fridays pills with you, or Sat,Sun pills etc.
Me: See, here they are. And your bedtime pills are in this compartment.
Mom: I KNOW THAT.
Me: Well, Sunday's pills are in the Sunday container, see?
Mom: Yes. I don't use this container.
Me: Well, we are using it until we leave on vacation. Remember? We did this yesterday too.
Mom: No, I don't remember. This IS NOT THE WAY I DO IT!
Starts screaming about her medicine and her life and her pills. Looks at me and says sarcastically,
Mom: Do I have to ask you if I can go to the bathhroom???
She goes in and slams the door.
Dad is in the hall.
Me: Dad, you have to back me up here.
Dad: Shakes his head. I know, I just hoped this would wait until we were back from vacation.
What is bad is finding my mother standing in front of the drawer where I put her meds and seeing her with a fistful of medicine.
Me: "What are you doing?"
Her: I can't find my medicine and I will not take something if I don't recognize it."
Me: "What is it you don't recognize?" (Thinking she went to take one of her bedtime pills and didn't know what it was because she keeps forgetting to take it.)
Mom: Where are my pills for tomorrow?
Me: In your room where they always are.
Mom: No they're not.
Notice pills in Mom's hand...
Me: Why are you holding those pills?
Mom: They shouldn't be in here.
Me: Mom, let me have the pills.
Mom: No, their mine.
Me: I know, but I'm taking care of them for you.
Mom: No you are not!
Me: Yes, I am. (Holding out my hand) Give me the pills (sternly- but not yelling- kind of like talking to a child that may hurt themselves if they don't do what you say quickly)
Mom: Fine (drops pills- some reach my hand, some hit the floor)
Me: Dammit
Mom: What are you going to do with them?
Me: I'll take care of them Mom.
Mom: Where are my pills for the morning?
Me: (Trying to take her hand) Come here I'll show you.
Mom: (Angry) Don't you try to make me come with you. I am not a child!
Me: I know Mom, I'm sorry. Please come with me.
We go into the bedroom and her pill box is on the counter. It is one that separates, so you can take Fridays pills with you, or Sat,Sun pills etc.
Me: See, here they are. And your bedtime pills are in this compartment.
Mom: I KNOW THAT.
Me: Well, Sunday's pills are in the Sunday container, see?
Mom: Yes. I don't use this container.
Me: Well, we are using it until we leave on vacation. Remember? We did this yesterday too.
Mom: No, I don't remember. This IS NOT THE WAY I DO IT!
Starts screaming about her medicine and her life and her pills. Looks at me and says sarcastically,
Mom: Do I have to ask you if I can go to the bathhroom???
She goes in and slams the door.
Dad is in the hall.
Me: Dad, you have to back me up here.
Dad: Shakes his head. I know, I just hoped this would wait until we were back from vacation.
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