Disappointed

Perhaps "disappointed" is an understatement.  Really, I am angry.  I know that running a nursing home and taking care of Alzheimer's patients are two of the most difficult jobs there are.  But frankly, I was hoping that the professionals had more of a clue.  I am gritting my teeth this morning and will have to address the issue with the administration when I am not quite so angry.

Of course, as a person with Alzheimer's, Mother has no self-control.  She says what she is thinking.  She acts like a naughty 4 year old most of the time.  So why would a RN give Mother - an Alzheimer's patient who LOVES chocolate- a whole pound of chocolate at once?  I ask you, would you give a 4 year old that much candy and then leave her to it?  Mother ate the whole pound of candy in 30 minutes.  Then she was sick.  The RN came looking for Mother and the chocolate later in the day and was surprised that it was gone.  Really?  Why should that surprise her?  Mother grabs a candy bar out of your hands and tries to eat it wrapper and all.  Mother has sat in the Rn's office and gobbled candy from the dish on the desk.  I know the candy was meant as a kindly gesture, but what was this woman thinking?  This was not a gift that was good for Mother.  When I visited Mother she looked sick and complained of her belly hurting.  I found out that last week she was getting up to 3 cans of soft drinks a day too.  It is time, once again, to have a talk with the administrator and the RN and let them know that giving Mother that much junk is not good for her.  I'm OK with a soft drink a day and some occasional candy, but not this massive amount of sugar.

The moral of this story is that if you have a loved one in a nursing home, visit several times a week at different times of the day.  Talk to the CNAs and the other staff and ask questions.  Keep in touch with administrators and let them know of your wishes for the care of your loved one.  Even too much candy and sugar can constitute a kind of abuse.

Sweet Lies

As a child, lying to one's mother was such a grievous offense that it merited the worst of punishments.  I learned the ethic so well that as a rule I don't lie, but I lied today, and worst of all I lied to my mother.  Even though the little "guilty" bells went off in my head, my heart knew it was a small series of sweet lies that simply averted the grief the truth would have brought to her.

Today Mother was sitting and watching MTV, and while we watched some program about teenage mothers, she ate her orange and talked about the people from her past.  She said she had had a visit from her cousins, Glen and Lyle, and that they had had such a good time.  I asked some questions and acted like I was pleased that they had come to visit her.  Lyle died in WWII and Glen died several years ago.  I didn't tell her they were dead - essentially a lie.  She was so excited by having had a visit with them.  Perhaps she did - I would not like Scrooge try to deny the presence of any Christmas spirit - but the rest of the details of the visit were mixed up in accounts of the Vietnam War and wives and children they never had.  But she was happy.

She asked about my father - dead many years.  She wanted to know how he was doing and what he looked like now.  I lied again.  I named the town where he "lives" - rather where he is buried, and I made up the rest.  She was pleased.  So many times we've told her that he is dead.  It just makes her cry and mourn all over again, so today I lied.

She asked about other friends and family so long gone.  But I lied and we talked about them as if they were still here.  And what I've learned is that they are still here in her mind.  They live and breathe and have new adventures and can have lives that she makes for them  It brings her great joy, and so I will continue the sweet lies told out of love.

Hark the Herald Angels Sing

Christmas is truly celebrated at a nursing home.  There are beautifully decorated trees everywhere, all kinds of Santas and Nativity scenes, and most of all there is music.  So many groups come in to perform for the residents, and their musical gifts make the season all the brighter.

Mother loves the music, and she loves to "dance" to it. Her dancing consists mostly of swaying and wiggling her hips. Once in a while she will try a twirl, but that usually leads to her yelling "whoa Nelly!" and having to sit again because she made herself dizzy.

Last week she was very emotional.  A local high school show choir came to sing.  Mother cried loudly through most of the performance.  Her face turned red, the tears flowed, she chewed up her tissue, and she was just beside herself with emotion.  All of those young people singing just swamped her emotional capabilities, but she loved it.  Of course she thought the boys were her grandsons and tried to call out to them.  Those young men were so kind to come to her and hold her hand for a moment.  What amazed me was her ability to collect herself after the program and thank the director for coming to sing.  For that brief second her manners showed through all of her emotion. 

Today I sat with Mother and some of the other residents as they listened to a man play his keyboard and sing.  As I looked at these residents, so diminished from who they once were, their faces beamed, and they did their best to sing along to Away in a Manger and Rockin around the Christmas Tree and Jingle Bells.  They sat together and held hands bringing comfort to each other, and all the while Mother danced around them and was happy.  I think I know why the angels were sent to Bethlehem to sing good news.  Music is the language that reaches us most deeply, and even in the depths of dementia one can sing and rejoice and be happy.  If just for a moment, we can have love and joy.

Buttons

The cycle of good days and bad days continues.  What amazes me is my own adjustment to her condition.  There are times, the good days, when I think to myself, "Well, she really isn't that bad."  Denial.  But when I see her every day, it can be difficult to keep my perspective.  I become accustomed to her ways and her behaviors. 

But once in a while, the perspective comes into a harsh focus and can't be denied.  After Thanksgiving I was looking through the old photo albums and came across photos of Mother as herself before the disease took its toll.  I cried.  I cried to see her whole and laughing a real laugh, not the Alzheimer's forced he, he ,he that she has now.  I cried to see her in her garden smiling and vibrant.  I cried to see her hugging the grandchildren and great grandchildren who she is forgetting and can't quite place.  I cried because in viewing those photos I had to admit how profound and irreversible the changes are.  I had to close the album.  It was just too painful.

The disease has unbuttoned her mind.  More and more memories are being unbuttoned and float away.  What is left is a more and more primal brain.  Last week Mother chewed all but one of the buttons off of her pajamas.  No one can find the buttons, and we suspect she swallowed them. It is like that with her whole life at this point. She is hanging together by one button, and that is hanging by a lose thread. The disease is swallowing her whole.

Be True to Your Teeth or They Will Be False to You

Sometimes a decision about care for Mother almost overcomes me.  Right now we are struggling with her oral hygiene.  Basically, her teeth are rotting out of her mouth.  She has been in assisted living or in the nursing home for almost two and a half years, and now we are seeing her mental decline manifested in a new way.  She tries to brush her teeth, the staff try to help her and we try to help too.  When she will let us, we floss her teeth and help her brush.  I put on the gloves, trying to not get bitten, and I am as gentle as I can be.  The problem is that she is constantly eating something sweet, and the brushing and flossing is just not adequate.  Every dental appointment reveals more cavities.   This time there was even a crown missing - apparently she swallowed it.  Teeth will have to be pulled.

The dilemma comes for us when once again we have to decide what it best for her quality of life.  How much money do we put into dental work that may be in a tooth that has to be pulled in a few months?  How will this affect her diet and one of the few pleasures she has - eating?  Can she tolerate the dental work?   Just going to the dentist for a cleaning is a major event.  It takes two people to get her there, and we have to hold her hand and reassure her.  She becomes fearful and exhausted.

Sometimes I wonder if I am up to this task.  A friend said to me today, concerning her parents, that she thought she knew about these things, but she is discovering that she knows nothing.  I empathize with her.  I sometimes feel that I don't know what to do or how to do it.  Watching a parent die of Alzheimer's and dealing with the terrible, slow decline is horrifying.  At each step there is one more element of decay to deal with.  I am helpless before it.  I just keep taking one step at a time and try to keep moving in what I think is forward motion.

Going Home

Without a doubt the hardest thing we have had to do so far is making the decision to move Mother to  assisted living and then to the nursing home.  Leaving the home she loved was absolutely wrenching for her and for all of the family.  Her home was more than just a house and a piece of land.  It was and is who she is.  Her identity is rooted in that soil, distilled into that water.  Her spirit was fed by every tree and animal and bird in the woods and meadows.  She walked the woods and fished the pond.  She chopped the wood and cleared special areas for sitting and communing with nature.  She planted her garden and made a home made swimming pool out of boards and black plastic that the grandchildren thought was better than any pool they had ever seen.  She taught her grandchildren about God and about nature in the woods.  She roasted pork loins over an open fire pit she built herself.  At 70, she was on the house putting on new shingles.  She never wanted to be gone from her home.  She even wrote a song about her home in the woods.  Sometimes we thought she might love that place almost more than she loved people.  It has been everything to her.

Now, she often doesn't remember it at all.  If you ask her where her home is, she names her childhood home. She can go months without talking about it.  But when she does, I once again experience the ache and the gut wrenching feeling that I have somehow betrayed her.  Yesterday when we visited she grabbed our hands and asked to go home.  She said she had to get out of that nursing home and go home.  I told her I really wished I could take her home, but I just couldn't.  Then she held my hand, leaned forward and said. " Pleeeeeeeease.  Oh pleeeeeeease.  I am so homesick."  My heart shattered into a thousand sharp fragments. My heart was broken, but I heard myself saying, "It is too late.  We can't go.  I wish I could take you, but I can't."  The look on her face pierced me through.  I comforted her with hugs and told her that my sister looked after the place.  I assured her that we put the light bulb in the well house, swept the porch, and  cleaned the house.  She smiled and said okay. That was it.  The thought of home was gone, and today she was happy.   But my heart still aches today.  I can't get the look on her face as she pleaded with me out of my mind.  I would give anything to be able to restore her to her home and her mind and her life.  It is a bitter heart ache, and I mourn for her loss and for the pain we share together.

It Happens

Mother has adjusted fairly well to life in the nursing home.  Occasionally she asks about her house, but most of the time she asks where she is.  She just can't remember where she lives.  And as sad as that is, sometimes these everyday forgetting episodes take a funny turn. 

Last week when I visited was one of those days when Mother didn't know where she was or who the people around her were.  Her solution to not knowing is to give the people she lives with the identities of people from her past.  I think for her it is a comfort to have old friends and long-dead relatives "living" there too in her mind.

One of the residents who wanders constantly was in the sitting area with us.  She tried to move furniture and pushed the coffee cart out from the wall and was carrying on a conversation with someone.  She approached us and told us to "come on" or we would be late.  She then walked across the room and walked directly into the wall!  Poor thing!  She wasn't hurt, and she came back and sat with us and talked about so-and-so not coming and something about a cash register not working.  It was nonsense, but she expected an answer.  I replied, "Well sometimes that just happens."  She looked at me and yelled, "S- - t happens!"  I said, "Yes, it does."  She yelled it again, got up and wandered out into the hall.  Mother then proceeded to tell me which "family" member she believed the woman to be and said, "She doesn't know anything.  She has lost her mind." 

Sometimes you just have to laugh.  I think maybe the woman spoke for everyone who has Alzheimer's that day.  It happens.

Eating Daisies

From time to time I find the progress of Mother's Alzheimer's disease, just too much to think about.  Last week as I left the home after visiting her, I found myself in tears.  It is usually the small changes that make me weep.  I think it is because I expect the big changes - incontinence, forgetting, having trouble walking - but the small changes are like a slap across the face.

The leaves have been so beautiful, and I thought I could share some of them with Mother.  She has always been an outdoor person and loved the trees and the fall colors.  I walked the backyard and chose the most perfect yellow and red leaves I could find.  But it was one of those days, and when I showed the leaves to her, she yelled, "Cookies!", snatched them from my hand and had them in her mouth in a split second.  I was stunned, but managed to get the leaves out of her mouth.  Silly me, I tried it again.  I held them away from her and pointed out the colors and pattern, and within a second they were in her mouth again.  Once again I got them away from her and went and found a cookie for her.

Eating the nonedible (paper, dirt, flowers) is called pica, and it is a disease.  In Mother's case, it is a result of the Alzheimer's.  Last year she began to eat flowers from arrangements in the home.  This summer, I had to stop taking her flowers because she was eating them. This is what made me cry.  Mother loved flowers.  The last few times I took flowers to her, she cried and kept saying "how beautiful."  Now that is gone.  Of course I can take artificial flowers, but it is not the same.  Alzheimer's is stealing even the small pleasures of beauty from her.  I weep.  I rage.  But that part of her remains stolen.

A Spoon Full of Sugar

Maybe you've seen the movie where Mary Poppins sings about a spoon full of sugar helping the medicine go down.  If only it were that easy.  It is never easy to get a reluctant patient to take medicine be they children or older folks or the family pet.

One of our first clues that Mother was suffering from dementia was her refusal to take any kind of medicine.  For most of her life she has only taken the occasional aspirin and her vitamins and calcium.  As the Alzheimer's set in, and she had to begin taking more medicine, getting  her to take her daily meds became a struggle.  If she were handed the pills, she either tucked them in her cheek, spit them out, hid them or threw them.  Many a time I would find little stashes of pills around her kitchen.

At the same time, she sometimes took her pills too close together.  She would remember to take her pills, and then a few minutes later she would get up to go take them again.  Since someone wasn't with her all of the time, this became a major concern.  Our initial solution was to get her an automatic pill dispenser.  This machine was on a timer and would beep when it was time for her medication, and the little slot would open and there the pills would be.  This worked for a short time, but soon we still had the same problem.  She would take the pills out of the machine, but she would stash them around her kitchen.  The problem then was she would see them at a later time and take them, but it might be right before or after the next dose.

The problem worsened, and it was one of several issues that led the doctor to tell us it was time to place her in nursing facility.  Once there, of course, her meds were monitored by the nursing staff.  However, the problem continued. The pills would be in the cheek, stashed around her room, spit on the floor or hurled at the staff.  We tried putting them in pudding, jelly, jello, etc. but that spoon full of sugar didn't work.  Now her medication is powdered and placed in a paste, which she takes from a wooden spoon like we used to use when we ate ice cream from the little cups.  From the look on her face, it is not like ice cream or a spoon full of sugar.  It reminds me of pinching a cat's cheeks to get it to take a pill.  She takes it but licks at the roof of her mouth.  At least we know she is getting her meds appropriately, but I wish Mary Poppins could sing Mother into a happier way to get the medicine to go down.

Sitters and Walkers

There seems to be two kinds of ambulatary folks in the Alzheimer's unit - sitters and walkers.

Walkers pace the hall.  Some "see" things on the floor and stoop to pick up the imagined object.  Some look for spouses or children and may stand at the doors and pound on them.  Mostly they just walk endlessly from one end to the other occasionally sidetracking into the lounge or dinning room or someone elses room.  They tend to be quiet, mumbling only to themselves or occasionally asking a question.

Mother is in the other group.  She is a sitter.  She sits in her swivel rocker occasionally, but mostly she sits in the lounge and sips a glass of tea or lemonade and watches people or the tv.  I often find her there just sitting and watching.  Another resident from the general population comes in on Wed. afternoons to hold "church" for the Alzheimer's patients.  Sometimes she really gets into church, and she shouts Amen and slaps her knees.  Other times she jumps up and says,"Get me out of this.  These people are crazy."  She sits and visits with the aides and nurses.  Sometimes they work puzzels or look at the ads from the newspaper.  But most of the time she just sits in her world of the moment.  That is mostly what she has - just the moment.  Yet, she seems to make a life and some sense of those moments.  She can't remember anything for more than a couple of minutes, so sitting and experiencing each moment is all she has. The joy of the moment is real joy, but the moments of fear are real fear too.  Yet I know that it is all fleeting - its only the moment.  She has to live in the present and the distant past because that is all she has.  She sits and waits for the next moment.

Running Away

Mother has always been something of a go-getter.  She is independent and growing up on a farm, she had plenty of space to explore and play.  But as a toddler, it wasn't safe for her to wander about without a parent around.  So, when her mother was working in the garden or hanging clothes on the line, she rigged up a baby "leash" to keep mother safe.  She put a belt on Mother and then tied a rope to the belt and hooked the other end to the line of the clothes line.  Mother could run up and down the length of the clothes line and out as far as the rope was long.  She had the freedom of some movement, but she was safe, and her mother could get her work done.

Mother is once again on a type of leash.  Early on in her disease, she kept saying she wanted to run away.  It didn't matter where, she just wanted to run.  I think she felt changes in her mind and the only response she had was to "run away" from what she felt.  She would sit and talk of "running away" to Hawaii or to Idaho.  Sometimes she said she just wanted to get in her car and go, but she didn't know where to go.   Once she even drove her car into the far pasture on her farm just as it was getting dark.  She wasn't sure where she was, but she did make it back to the house.  This has been a major issue as the disease has progressed.

When she first went into an assisted living facility, she did get out and run away.  One January day she inserted herself into a group of visitors who were leaving, and she slipped out the door with them.  Staff noticed and followed her, but she led them on a merry chase into nearby buildings, through parking lots where she checked for an unlocked car to get into, over a vacant lot where she picked up a piece of PVC pipe and threatened the staff that followed her and finally into a hotel where she tried to "check in".  She wasn't  wearing shoes only socks on her feet and had walked through mud and crossed a small creek.

Now she lives in a nursing home in the Alzheimer's unit.  Her "leash" is an electronic ankle bracelet that sounds an alarm if she gets out.  For a while she still tried to run away, but she could be bribed to go back in with chocolate.  Now she is fairly content where she is and never tries to run away.  In fact, many times she is not comfortable going outside.  It is too overwhelming. Now she is safe, but I miss that spunky woman who knew what she wanted and wasn't afraid to go find it.

Suffering, Suffering, Suffering

When I was small I would sometimes get so scared at night.  The clothes in the closet, a chair, a toy on a shelf all took monstrous proportions and frightened me.  Mother would come in and sit with me and reassure me.  I remember.  I could go back to sleep because she was there, and I knew I was safe.

Today Mother was scared and confused.  She had ended up in another resident's bed. (Not at all uncommon in the Alzheimer's unit.  People forget where their own bed is and take the first one they see.)  When I arrived I couldn't find her, but the aide told me where she was and said they had tried and tried to get her to move, but she wouldn't. I found her and when she saw me she said, "Oh, I'm in trouble."  She knew she was not where she belonged, but she was unable to do anything about it, and staying in a comfortable bed was safer than moving to what she perceived as an unknown place.

The bribe that usually works is a Coke and chocolate.  It worked today. After much coaxing by telling her that I had brought her a Coke and that her room and her bed were just across the hall, she got up and baby-stepped across.  How terrifying it must be to not know where you are.  Her own room was just four or five steps away, but she was utterly lost.  When she saw the Coke she exclaimed, "Oh someone has left me a Coke, and it's in my room."  After the Coke and chocolate, she curled up in her own bed and was cold. I wrapped her fuzzy green blanket around her, tucked her in and sat very close. "I'm suffering, suffering, suffering.  Terrible, terrible.  My mind, my mind.  It's a bad day."  And it was. 

I tucked her in and sat with her until she was sound asleep; her mind at ease at least for the moment.  It was my turn to chase away the monsters.  I wish I could keep them away forever.

Screams

At the home someone is often screaming.  To me it seems to be one of the effects of Alzheimer's disease.  Mother has developed a hypersensitivity to many things.  This reaction began early on in the disease when we first took her to the doctor.  When she had to have a blood test, she cried like a small child and turned her head screaming, "You're killing me!"  Now, I understand that many of us have this reaction to giving any amount of blood, but this was not her usual response. 

Screaming became part of the daily routine when she had to take a shower.  Neglect of personal hygiene is also an early effect of the disease, and getting Mother to shower was a struggle.  Of course being naked in front of your children is uncomfortable, and she would scream, "Don't look!  Don't look."  We got very good at scrubbing her or telling her what to wash next with our eyes fixed on a point just over her head.

As the disease progresses, she screams at any touch on some days.  That might be helping her wash her hands or changing her socks or brushing her hair.  Sometimes just trying to help her floss her teeth brings the staff to check on her as she screams bloody murder.

The fact is that as gentle as you want to be, as much as you tell her what you are going to do, as much as you know you are not hurting her, she will still scream. 

Last week as I left the home, I heard wild screams coming from the shower room.  Someone else had to be bathed, and it was their turn to scream.  It is part of the disease, and it puts me at great dis-ease.

Sitting in the Sunshine

Today the weather was so nice.  I even got Mother to go outside for a little while.  She was such an outdoor person before Alzheimer's.  She loved the woods and sitting on her porch.  Now, most of the time, she is afraid and overwhelmed to go outside.  Today was a good day, and we put on sunglasses and went out.  She wanted to know if she looked like "Joe Cool" in her sunglasses.  She also likes to think of herself as one of the Blues Brothers when she wears sunglasses.  So we jived down the hall and found the chairs in the place she likes to sit when she will go out. 

We just sat.  I tried to talk to her, but conversation was difficult today.  She wants to participate, but her thoughts are so jumbled.  She would just say my name and smile or try to make a polite response.  Mostly she just smiled.  So I smiled back and held her hand and we sat in the sunshine. 

Sometimes just being a presence with one another is the best we can get.  I am grateful for that.

Conversation

Mother is far enough into Alzheimer's that she sometimes makes no sense at all, but she believes she does.  Today was one of those days.  She was so happy, and she talked for 30 minutes solid and said not one thing that made any sense.  She talked about her husband and her brother and her mother-in-law and other family members.  In her mind there had been a fight because of a "mistake" the day before. Sometimes she said it was her mistake, and other times it was her brother, her husband or her mother-in-law who had made the mistake.  She kept trying to tell me about "that thing in the back yard" and then she rambled on about a spool of thread. "But everything is hugs and kisses now," she would say.  Then it would all begin again.  Occasionally she would get distracted and say, "I'll finish this later."  In 5 seconds she would be telling the tale again. If she was mad at someone in her story, she would shake her fist.  If she thought it was funny, she would slap her knee.

These days are difficult, because the cadence and tone she uses is her old self, but the words are just strung together.  I wonder what kind of jumble is going on in her mind because to her it was a coherent story.  She would wait for a response from me or just laugh at what she had said.  It was exhausting trying to give a satisfactory response. 

I watched her and I could see her face express a whole range of emotions. To her it was a story, and she wanted to share it.  Perhaps that is all we can be is a presence to share an experience even if we don't understand or the story makes no sense.  The important part is to be there and share it because at that moment it was so real to her, and her need was to tell and have someone share her story.

Early Warnings

Alzheimer's patients experience a long, slow decline in mental function.  For Mother, we first noticed that she could not remember anything associated with a date unless she wrote it down.  For a time, her calendar was covered with little notes.  We found notes written on sticky notes, backs of envelopes, scraps of paper.  This helped her for a while.  She even commented that she needed to write it down to remember it.  Eventually, she could not manage the calendar, and we even found that she was using two different ones. 

Because the disease manifests differently in every person, it is difficult to judge how the disease might progress.  For Mother, it didn't take long to go from notes on the the calendar to not remembering at all.  We had to call her several times as we drove to visit.  She would forget that we were coming.  I always called as I drove up the lane because I didn't want her to get scared when she saw a car coming.  I would have her go to the window and watch, and I would roll down the window and wave while I talked to her.  She stopped cooking too.  The saddest time for me was watching her struggle to figure out how to use the bread maker.  She could not even make sense of the directions, so we just put it away.

That is one of the greatest griefs for me.  To see my bright, intelligent mother so reduced.  Most of the time now she is beyond that frustration.  But on days where clarity is sharp, she still grieves for her own loss of memory.  She used to ask why this was happening to her.  Why indeed. 

Dorian Gray

I'm thinking today of the story of Dorian Gray.  You know, the young man who sells his soul for eternal youth while his portrait ages in the attic.  Sometimes I think of Alzheimer's as the antithesis of Dorian Gray.  The portrait I have of Mother in the attic of my mind is of the vital, whole person she was.  She will not change.  But the person I see before me is ravaged by this disease.  She loses her mind a bit at a time, and the horrible part is when she is aware of it.  She tells us that she is dying.  When asked what she means, she says that it is like sailing out into a fog or that she feels like she is sinking and going away.  No wonder she cries.  All we can do is hold her and rock her and be there with her.

Most of the time she is unaware.  That is better for her, but then her behaviors deteriorate.  Yesterday we were told she is now banned from the community concerts at her home.  She is inappropriate with the male residents and the performers.  The music gets her stirred up.  She dances and laughs and has a wonderful time.  She likes to flirt, and she is funny.  But then she gets inappropriate and things get out of hand. 

Maybe my analogy should be more of Jekyll and Hyde.  The one side of her kind and sensitive and civil.  The other out of control like a tyrant toddler.  She has taken to making her room mate cry.  She knows just one or two words that set the woman off, so she says them just to see her cry.  That is not my mother.  She was compassionate and had no tolerance for that kind of behavior.  Where has my mother gone?  This disease has stolen her.

Beginnings

About six years ago we noticed Mother was beginning to show some memory loss.  At first, we thought it was just the usual forgetfulness that goes with aging.  But very soon we knew that it was more than that; it was Alzheimers.  And so began this journey that is sometimes horrifying, sometimes sweet and most of the time difficult.

I look back now and realize that although each step of the process is difficult and painful, the difficulty does not necessarily increase as the disease progresses; it just changes.  Each step of the journey is like stepping into an unknown.  The only thing I can compare it to is childbirth or raising children  You can read books, watch videos, take classes, find a support group or talk to others, but until you go through it, you don't really know what the experience is like.  You just walk into the experience and do the best you can at that moment.  You take one day at a time. 

As bad as this disease it, and it is terrible, you can learn from it.  I've learned a great deal about my mother as I have watched the disease progress.  I have also learned about myself.  And to me, even more interesting, I have learned more about my family and how it works.

This blog may jump from one topic to another as I talk about my past experiences and about what I am experiencing now.  I just need to talk about it, and invite you along for the conversation.