Monday, April 26, 2010

I Just Can't See It

I spoke about the vision complaints in the prior post. I wanted to share with you some additional things she couldn't "see" and it is progressively getting worse. Below are only a few of her concerns. In the earlier stages, they were less obvious. We have now progressed to more blatant concerns.

1. The TV remote- "I just can't see the buttons anymore."

2. The telephone- "These buttons are getting hard to read. I think the numbers are wearing off.

3. The thermostat- "Is it hot in here? I keep trying to fix the temperature, but there is a glare or something...I can't see what button to push." (By the way, it was 76 degrees outside and the heat was set to 90 degrees. Yes, it was a little hot in there. We pretty much noticed, as the wave of heat parted our hair on the way in the door!

4. Doing hair and make-up- "It is hard to see doing my hair, everything is backwards in the mirror."

5. Reading- "The newspaper has changed it's format...I think it is makes it harder to read."

Sunday, April 25, 2010

5 Things About Early Alzheimer's

These are a few things that I have learned in this process with my mother-in-law. Please understand everyone's journey to an Alzheimer's diagnosis is different, but many times there can be a common theme. I will share our experiences.

1. If the person is concerned they have AD, that doesn't mean they don't have it.
-I had always read those having AD are unaware and in denial of their
memory issues. So when my mother-in-law was concerned about her memory,
we told her the fact she was worried was a sign there was no need to
worry. The reality is she knew and still does...We were the ones
that were wrong.


2. You don't have to find the iron in the freezer, before you become concerned about
Alzheimer's.
-An example given on an Alzheimer's web-site states people with AD misplace
things, but it is finding they have put the iron in the freezer that is a
warning sign. Yes, by the time someone is putting the iron in the
the freezer, I would like to think family or friends would have recognized
many other things first.

My mother-in-law would have have put the spoons with the forks or changed
the placement in her kitchen utensil drawer, but most people would blow
that off. The comment would be made that she at least had all her
silverware in the same location.

3. If a loved one complains it is hard to "see", it may not be their vision, but
their cognition.

-It was after my mother-in-laws cataract surgery, she continued to
complain about her eyesight. She said even after her surgery, she
just couldn't see as well. We confirmed with the eye doctor, her
eye sight was close to perfect. He went on to say that she would need
glasses only for reading. It was a year later, I had the "light bulb"
moment. I will have several post pertaining to the "eyesight" in the
future.

4. The person loses focus and /or concentration often and at inappropriate times.

-For awhile, the family had noticed there was a significant loss of
focus with my mother-in-law. Then the discussion of her driving
came up. We had spoken to her psychologist that had told us it would
be best if my mother-in-law's driving would be restricted to day only.
She would not be able to drive at night anymore. As you could imagine
this is a day no one wants to come. She felt her independence was taken
away. She was sad, angry, frustrated and agitated, then enters the cat.
My mother-in-law with tears still running down her face looks at the
cat, and starts talking to her. A smile across her face, she looks at my
us and says, "Isn't she pretty?" My husband and I looked at each other
as to say, "What the hell just happened?"

5. Many little pieces of paper and "post-it's" laying around the house with phone
numbers, starts of grocery list and home address.

-My mother-in-law was always a "list" person and like to have everything
written down. We were used to the lists, but when you find your number
on "post-it's" in nearly every room of the house, we were impressed by
the situation. In addition to our phone numbers, she had her phone
number and address written on pieces of paper and in her address book
and calendar. She had started many different grocery lists and each list
had many of the same items on it.

I realize we all make grocery lists or write numbers down, but it was
the sheer number of "post-it's" and the placement of some of them that
made it all a little disturbing.

Monday, April 19, 2010

Buttons

Prior to this experience , I had always heard that those with AD were not aware they had AD. This is true in the latter stages, but is most certainly not true in the first stages. My mother-in-law is at a point where each and every day brings new challenges.

Last Sunday I went over to my mother-in-laws house...her closet had been one of my newest project. For some time it had become difficult for her to put her own outfits together. I had explained to her that we could reorganize her closet and put some of her favorite outfits together...this would make it easier for the caregivers. (I feel it is better to act like WE are helping others...not her.)

She had just gone shopping the day before, with her daughter. She needed to try some of the clothes on. She always has had the best taste in clothing and very stylish. One of the shirts she had bought had a little ruffle over the buttons. I could see out of the corner of my eye, she was struggling with the buttons. I did what I have become very good at...I acted like I didn't see the struggle. She finally made a comment that she couldn't button her shirt. The look on her face was sheer terror. I looked at her shirt and said, "Well, look there...it looks like they were trying to hide those buttons on you...right under that pretty little ruffle!" Her face softened and she said,"I am so glad you said that...I thought I was really losing my mind, now I can't even button my clothes!" I reassured her again and explained I could see the buttons better from my angel. From her angel the ruffle made it hard to see.

She allowed me to help her and we kept on talking like neither one of was devastated with the reality...everything was getting to be more of a challenge these days...

Sunday, April 18, 2010

The Depression

The first year, after my father-in-laws death, we anticipated things would be difficult for all of us. Because my mother-in-law had issues prior to his death with anxiety, we knew this would truly test her in so many ways.

She had gone to her primary physician who had given her a prescription for Xanax and an antidepressant. She went though several antidepressants and found one that worked for her. Overall, we were surprised by her strength and her vigilance to get through this...All of the "firsts" had come and gone. We had many tears, much reminiscing, and even a lot of laughter.

My mother-in-law had attempted to keep herself busy. Many of her friends had advised her to make sure she got out of the house, go out to dinner, continue with church and the church choir. She took pride in following through with all of the advice she had been given.

Then the second year came...I remember she looked at me and said, "I have done everything I was supposed to do. I have been a good girl, but you know what? He still is not here and he is not coming back...this just really sucks!" What do you say to that? I looked at her and I said, "Yes, you are right...it does suck!"

My husband and I soon realized she been going through the "motions" of grieving. We did not expect for her to magically feel better about her loss after one year. We also knew we could only help her so much, she was going to have to go through her own process in her own time. We spoke to her about seeing a counselor. I had found out that there was a grief counselor through the funeral home she had used for her husband. The funeral home also offered support groups. She absolutely refused to be a part of a group. Reluctantly, she agreed to go to the counselor. After a few sessions, she looked forward into going to her appointments. She followed up with that counselor for approximately 6 months. We weren't sure what good it was doing...She continued to sleep much of the day, and began canceling many of her other obligations she once enjoyed.

She kept going to the doctor thinking she must be sick. "Something has got to be wrong", she would tell the doctor. He ordered every test known to man. As you would have probably guessed...nothing was wrong physically. The doctor doubled her dosage of Prozac, from 20mg to 40mg.

She became more and more disconnected. Her judgment at times was not as sound as it used to be. Her daytime sleepiness worsened. Then she started talking about all of the "floaters" she would see. She would also tell us that every morning for the last few weeks, (we had been hearing it for over 6 months)she would have to review in her mind, who was living and who was dead. She would have to remind herself her mom, dad, and husband were gone. It was when she spoke of "figures" next to her bed and it looked like someones hair around her lampshade on her nightstand, that I knew we were headed into a very dark and unusual place. (It is always a sign when you hear something that makes all the hair on the back of your neck stand straight up!)

Let's just say that for years, she manipulated her doctor and he fell into her trap. The Prozac dosage see-saw played on and on...During this time she did complain of her forgetfulness, but mostly her leg and back pain. The family recognized all the sleeping was not doing her any favors. Her memory always was better when she was up and would attempt to stick to a schedule. Unfortunately, those days were few and far in between. We had many "come to Jesus" meetings...all was pretty much a no-go!

Them she had the episode I spoke about in the last post. The doctor prescribed Aricept. Several months past, and we got her to get a second opinion on her meds and dosages. We talked her into seeing a psychiatrist. He kept her on her Aricept, due to her concerns and lowered the Prozac dosage. Many of her "unusual" symptoms diminished. Although, her physical ailments increased...she complained often on her legs "feeling heavy and wobbly". We were grateful to get her in to a psychiatrist, but we also wanted her to see a psychologist. With a lot of politicking on our part, she agreed to see the psychologist.

However, we noticed seeing the psychologist was doing absolutely no good. My mother-in-law was not "hearing" any of it. She continued to sleep an abnormal number of hours in a day. She began to completely isolate herself from many of her friends. I was making excuses for my multiple random phone calls a day...in hopes she may wake up and actually get out of bed.

My husband and I made an appointment with the psychologist. My mother-in-law had signed releases and we started going to some of her appointments with her. We knew we needed to see the psychologist without my mother-in-law. We really needed to see what was going on in her once a week, one hour a day sessions.

While waiting for a couple of weeks, it so happened to be the time she was "experimenting" with going off her Aricept and Namenda. By our appointment time, we had much to talk about...

The Weekend That Changed All Of Our Lives

On July 31, 2004, my husband and I had a wonderful evening with his parents. Even though it really seemed like the stars were not aligning in our favor, we just took it all in stride. My husband had been under an unusual amount of stress, and had been experiencing heart palpitations all week. He really didn't want to go to dinner with his parents. After all, we had just had just seen them on Thursday night for dinner. I knew that if my husband would get out of the house, he would feel better. He finally agreed. His parents even picked us up and we were off to their favorite seafood restaurant. (I say "their" because I always get the chicken!)

We get to the restaurant and there was no crowd...it was so nice and quiet. It turns out because it was a slower night, the managers sent half of the servers home. So as some other families trickled in, we began to realize we might want to "pack our patience". (This is one of my favorite sayings) The slow service was not going to bother us, because we all possessed the gift to gab. We spent over two hours that night at dinner. We all loved talking about politics, religion and many social issues. We always joked the four of us could solve the majority of the worlds problems at a dinner table!

We continued much of our conversations on the way home. As we pulled up to our home, my husband remembered to tell his dad, he had recorded a show titled, The Top 10 Andy Griffith Episodes, so they could watch it sometime. His dad was curious and tried to guess what episodes were chosen. This prompted a trip down memory lane for my husband. He and his parents talked about him growing up...the TV shows they enjoyed watching, movies and books. My husband went as far to talk about where he and his friends would hide magazines (let's just say for a more mature audience) in a wooded area next to their house, when he was a teen. For a moment I didn't know if we were going down memory lane or entering a confessional booth!

Again time got away from us, we had been talking for over an hour in the car. My mother-in-law commented she didn't know about making it to church the next morning. My father-in-law reassured her, they would be going to church in the morning. My husband and I stood outside our home and did our standard silly parade wave as they drove off. As we stood there, I remember thinking how fortunate I was to have such an amazing husband, but also what a blessing to be part of his family.

August 1, 2004...Approximately 12 hours later, we get the phone call. My father-in-law had been rushed by ambulance to the hospital. Within 30 minutes we learned he suffered a brain anuerism. Another 15 minutes we were meeting with the neurologist. He told us that he was a Christian and did believe in miracles, but that is what it would take for my father-in-law to survive. When a neurologist gets down on his knees to pray for a miracle...it makes quite an impression.

My father-in-law had a Living Will and a "DNR". Everyone knew what he would have wanted. Afterall, I had heard him say, "I have already prayed to God, when it is my time to go, I just need to go." And so it was...

Family started pouring in from every direction. Everyone was shocked! My father-in-law had just had a physical 2 weeks prior. He was given a clean bill of health. He had never had any issues with his heart, blood pressure or anything else.

As we pulled in to my in-laws house Sunday night, it had only been a little over 24 hours from our trip down memory lane. I couldn't help to think about the shock I was feeling...I couldn't even begin to imagine, what my mother-in-law was feeling. She essentially got up, went to church with her husband of 49 years and was returning 12 hours later with no husband. I thought to myself, how does ones' mind wrap itself around that?

Tuesday, April 13, 2010

How It All Began...

We are not sure when "it" all began. My mother-in-law had expressed some concern with her memory several years ago. She complained that she couldn't find her keys and often she would lay things down and not be able to find them. My husband and I reassured her, we do the same thing all the time. What really confused the issue was she had also lost her husband of 49 years. I had read that after a loss it is very common to be forgetful. I told her that her mind is more interested where her husband of 49 years is...not her keys. This idea comforted her...now I am not sure if that was a good or bad thing.

Throughout the next several years, she struggled with depression and anxiety. She was prescribed antidepressants...she was on them for years. (Future posts will talk more about the depression) Again, she began to have increased concern for her memory issues. She decided to talk to her physician about it. He asked her some standard questions and she did well. He then asked her to count down from 100 by 7's...she had great difficulty and couldn't get too far. (Let me just say, if a doctor asked me to do that...I am not sure what I would do first... run out of the room or ask for a calculator!) The difference is my mother-in-law has a Masters Degree in Mathematics and taught high school Algebra and Geometry. The fact she had difficulty made an impression on her and her doctor. The doctor started her on Aricept.

The family really thought it was much to do about nothing. I mean did her doctor know she was sleeping all day? Did he know she was withdrawing socially? Surely he noticed she was losing weight? We did know that she was not as alert as she used to be, but if she had something to do in a day, didn't over-sleep and went out and about and she had to be with "it" she could do it in a heartbeat.

She had been on Aricept for a year, when we decided to get her to a psychiatrist to help regulate her antidepressant and Aricept. She voiced concern to him about having Alzheimer's Disease (AD) The doctor added Namenda, after she told him her mother had AD when she was living. (Ironically, her mother never had AD, she had dementia after she had brain surgery, after a fall)

She continued on medication for 2 years for both the depression and the AD. Our family had convinced her to change general practitioners and move on to a geriatric physician. The new physician listened to all her concerns...mostly all about the depression and AD. The doctor gave her a short memory test and she did well, but because my mother-in-law was so concerned...she referred her to a neurologist.

She looked forward to her appointment. Like all other doctor appointments, she got up early, fixed her hair, her make-up and her outfit were perfection. The neurologist tested her for over an hour. My husband in the room for the entire exam...even he was shocked of how well she was doing AND he anticipated she would do well!

The doctor told her she had normal frontal lobe memory loss that can comes with aging. He reassured her, he didn't feel she had AD or any other form of dementia. Our family was excited and felt our suspicions had been affirmed. Her geriatric physician went along with my mother-in-law's request to go off her Aricept and Namenda...afterall, they were not needed and are very expensive drugs. The doctor said let's try no meds for 6 weeks...we will check back then.

We were all thrilled for her. We observed her and noticed nothing unusual or different with her behavior...we were not surprised. Then "it" happened...5 weeks off meds. My husband and I saw her on Wednesday...she was fantastic. We saw her on Thursday night, and it was like we were with another person. She mostly seemed very slow and disconnected. The next days were like a whirlwind...the next day was Good Friday, then Easter and then her birthday. Her brother and sister-in-law were headed here from Alabama to take her for a little trip. For those of you reading this that know anything about AD, you can only imagine that trip! For those of you that are just learning about AD...let's just say...if you remove those with AD from their homes and familiar surroundings, it makes for very interesting times.

Each day she was gone was another day off of her meds. She went from being a little slow and disconnected to forgetting how to make a sandwich. She came home from her trip and we put her back on meds immediately. Five days later, she started to come back. Just as quickly as she "left", she was coming back. It has been a year ago this week...she will be turning 75 tomorrow. She has no recollection of last year's birthday or her trip with her brother and sister-in-law.

It is becoming clear each and every day...the meds are losing their effectiveness. The saddest part is she is aware of most of her changes. Well...all of that is yet to come in other posts. I do hope you continue to follow our story...