Wednesday, June 30, 2010

The Day My Mother's World Fell Apart

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?"

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.

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.

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.

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...

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.

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!

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.

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…

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.
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.

Saturday, June 12, 2010

Medication and Money

Well, yesterday is over and today is a new day. I set up Mom's pill case on Thursday and moved her medicine bottles into a drawer in the dining room where I can keep track of them. This is just a first step. Mom not happy about it. It is not the way she does it.

She does not like it that I am setting up a weeks worth of night time pills. She doesn't do it that way. I can't even describe how she does it, it would be too confusing to put into words. I told her we are going to do it differently.

A number of confrontations yesterday concerning medication. She took two of her bedtime pills out of the pill case and did not remember what she did with them. One is her pill to help her get to sleep, the other is her allergy medication. She has no idea where they are and I've searched some and couldn't find them. I'll do a more thorough search today when they are gone if I have time.

I know she hasn't been taking those two pills like she should.

Found a small plastic container filled with various medications. Some were hers, some were Dads. I took that away.

Dad had numerous confrontations about money yesterday. She wants to take money out of "HER" savings account and put it in "HER" checking account so she will have $1000 to spend on vacation. Dad has told her no. He refuses to take her to the bank. This is causing quite a bit of anger. Bless him, he is doing a good job of holding his ground.

We are going to have to get a locking cabinet for the medicine. Uck. But Dr. A said we are going to have to set up our home like an Alzheimer's unit and I guess I see why.

On a personal note. Every time I forget anything a little part of me wonders if this will be my fate. When a word doesn't come quickly to me or I misplace my car keys (which I've been doing ever since I learned to drive) a little panic button is pushed. I would assume this is normal for all caregivers. But it is disconcerting.

Thursday, June 10, 2010

What It's Like to Have Dementia

What It's Like to Have Dementia

This is a really good article worth the time to read.

More Pill Problems- Solution?

Well, this morning Mom got up early. At 8:30 she was running around looking for her daily pills. She "lost" them somewhere. 

I started looking with her and lo and behold- they were right where she thought they were supposed to be...

While we were looking for them, Mom said, "I need to refill my pill box. If you want to do it you can..." I can and I will. Now that the opportunity has presented itself- I will.

Thank you JC! 

Dr. Visit- Warning LONG

Mom's doctor's appointment was at noon, so we made plans to leave the house at 10:30 so we could get some lunch right before the appointment. Mom was up early, 6 AM at least. She was all over the place doing things, but not getting dressed or eating breakfast. She asked me what time we were leaving and I told her 10:30. I suggested she eat breakfast so she would be hungry again when we eat lunch. She agreed and proceeded to check her purse, look to see how much money she had, get a plastic bag for her robe (??) and wander over the house. Finally she started her breakfast about 9 AM as I left for the church to get in an hour with the secretary before we had to leave.

Got home at 10:10. Mom was mad at Dad. She asked me what time we were leaving and I said (again) 10:30. She said- "oh I thought HE was changing the time. I thought we were leaving at 10." Of course, she wasn't ready to leave.

Crisis- can't find expensive piece of jewelry again. (See It's Easter! ) This is the second time this week this piece of jewelry has "disappeared" Mom insists she asked me to put it in the safe. Didn't happen. I told her when we go on vacation perhaps we should put it in the safe (so she won't take it with us) and she told me she would think about it. Rushed all over looking for this piece of jewelry and finally told her we had to leave. She insisted I had it.  

Went for lunch. Mom wouldn't sit where I asked her to. It was noisy and the people behind me were having a good time, so I knew if she sat next to me she wouldn't be able to hear. She sat next to me and then got mad because the young people behind us were laughing loudly. She told me she shouldn't have sat by me.

I suggested she move to the other side of the table next to dad. One of the young women behind us, walked (hobbled) past our table. She had on cut-off jean shorts and a large walking cast on her leg. Mom thought she was our waitress and stopped her (poor thing almost tripped) and asked her if it was all right that she (mom) move to the other side of the table as it was too noisy behind us. Mom attempted to stand up and almost knocked the poor girl down. I grabbed Mom's arm and told her the young lady was not our waitress. After the girl had gone by, Dad and I told Mom to move next to Dad, that it was okay to do so.

The rest of lunch went okay. Left in time to get to the doctor on time and sat in the waiting room.

The Doctor A came to the door to get Mom and asked her if Dad and I could come too. She asked "why?" Dr. A told her he would talk to her alone first and then maybe she could invite us in too. She was gone a good hour and then came back out. She told us that Dr. A would be talking with us and that she would be seeing a lady for some testing.

After Mom went for the testing Dr. A called us in. Dad did a good job of explaining the changes in Mom and we both recounted incidents that concerned us. I had taken the forms the family filled out in to the clinic the day before and bless him, Dr. A had read them.

I was relieved when Dr. A said Mom probably has Alzheimer's with some frontal lobe involvement. (Note- we do not have the official diagnosis yet) Relieved, because someone sees the problems other than immediate family. He said Mom "covers well." She does. He said he can see why Mom scores high on the mini mental exam. He indicated he hoped to get a good test in to show how much things have changed since two years ago.

 The frontal lobe involvement means that the part of the brain that controls inhibition is affected. That came make a person impulsive. He asked if we are able to care for her in our home at this time. Dad and I both said yes.

That question actually shocked me. He may have seen the look on my face, because he explained there are certain stages that may cause a caregiver to have to "place" a loved one. He said Mom is actually in one of those stages.

He listed other things that will probably happen that may make us consider placement. Reality really hit home.

We talked about medication concerns, driving, money issues (excessive obsession with money and wanting to spend it), her talking about divorcing dad, and many other things.

I am going to have to take over the medication, the money and driving will have to be taken away. I asked about my leaving for school in July for almost two weeks and he suggested we get someone one to "take my place" and be here to do the medications etc. He said what we have to do is make our home into a mini Alzheimer's unit.

He also thought we might need to try some drugs to curb her impulsiveness. He is either going to talk to a psychiatrist or have Mom see one to get a prescription. 

Mom's testing lasted until about 4 pm. They made an appointment for her to return for the results. Unfortunately, the return appointment was set for my much anticipated "spa day" that Dad is giving me and I decided I didn't want to spend all that morning's hopefully relaxing time dreading a visit later in the day with Dr. A and Mom. So we changed the return visit for the 30th. 

We got home and Mom found the piece of jewelry. It was in the same place she usually keeps it. She just didn't "see" it. The piece of jewelry is now in the safe. And there it will stay!

We went out to dinner after prayer group and Mom told us a little about the testing. She said there were parts she refused to finish because she just wasn't interested. And other parts didn't make sense to her. She couldn't figure out why she had to name vegetables and fruits that start with the letter "C."
All in all dinner went fine.

Dad concerned me some though. I spent all day with him in the doctor's office waiting room. I knew his back was bothering him, but he never said a thing about needing something for the pain. And as soon as Mom got done with her appointment, he told her he needed some Tylenol extra-strength and she insisted we go to the pharmacy to get him some. Why didn't he say anything to me? He relied on her to take care of this for him! That cannot happen.

A couple of other things concerned me. I tried to call my DH and when I didn't get him, I told Dad that he was either still fishing, taking a shower or asleep in his chair. Dad said, "well he can't be fishing, its been storming all day." It wasn't storming. It wasn't even raining and the sun was out. I'm praying it was the pain that kept him from realizing what was going on around him.

Tuesday, June 8, 2010


It's been a week since I've written. I was away at a conference for a good part of that week and preparing for it before I went.

Tomorrow Mom has an appointment with the neuropsychologist. It will be a long appointment and I'm praying the difference in my Mom from two years ago will be apparent. 

Two years ago when we went to this appointment, I was shocked as to the diagnosis. I wrote about the appointment on the website. This is what I wrote. Warning- this is long.

 Prior to the testing my mother and I each filled out separate questionaires. We met with the doctor a couple of hours after she had the testing done by an assistant. The doctor told us that she placed in the 98th percentile in most of the testing. He told us she is highly intelligent. 

He then asked us questions, why we were there, what caused me to be concerned etc. He asked my mother some questions and then did what I guess would be a mini exam. He had her write her name with her right hand and her left hand. Had her draw some figures, write some words and do some math problems.

Then he told us his diagnosis.

His diagnosis is Mild Cognitive Impairment (MCI)

1. Tests showed slight decline in ability to read words
2. Delayed memory is below what would be expected
3.Visual memory is lower than expected.

Mom's CT scan showed "minute brain shrinkage" Less than would be normal for a person her age.
It also showed some small vessel disease.

The doctor related the small vessel disease to "small stroke events."

He explained that MCI in older adults increases the chance of getting Alzheimer's. In older adults, 1-2% of the population without MCI will get Alzheimer's. In those with MCI, that chance is 10-15%.

He suggested Mom be treated with Aricept or something similar through Mom's primary care doctor.

He said MCI is not dementia. He said MCI is a risk factor for dementia and/or Alzheimer's Disease.

My mother asked if I felt better hearing the diagnosis. I said I wasn't sure- I am confused. There have been instances of her not knowing who I am. Instances of her forgetting something 20 minutes after it happened. She hasn't been able to learn how to use new things, camera, phone etc. Other things still bother me as well.

The doctor said that life is the real test, and that they can't simulate life in clinical testing, and what I have experienced is valid. But he said if she can function at home and take care of her meals, pay bills, get dressed etc it is not dementia.

So now we will repeat the tests. My family has all filled out forms I found on the internet to take to the doctor to read. (Not his idea- mine) Dad has written down how much he believes things have changed and I will take that as well.

I pray that the doctor will see the changes and agree with us that a few changes need to be made. 

No driving
Help with medication
Little or no money handling

Prayers welcome!