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What is it like when one of your parents gets Alzheimer’s?

I knew right away that something was different.  My 74 year old mother and I had been very close all my life.  (She lived with my family.)  When her personality started to change I couldn’t understand why.  She loved crafts, gardening, singing, piano, anything creative, but all of a sudden she wasn’t interested in her hobbies.  She just wanted to sit in her chair and watch TV.  We started to argue.  It reminded me of when I was a teenager 25 years earlier, how we would squabble over stupid things.  Then she would get angry at the littlest thing and slam her bedroom door in my face.

Nothing made sense, why was she changing?  Was she mad at me?  Was she depressed?  Should I take her to a doctor?

One day she would be grumpy and then the next she would seem fine and we would go shopping for new flower bushes, have a great lunch out and come home laughing.  Cook a ham, play some scrabble, help the kids with homework, she was an integral part of the family.  I kept thinking… oh good, it’s all over now.

But then a week later her alternate personality would come back.  Irritable, argumentative, slamming her hand on the table, frustrated, insisting that she was right even though everyone in the family knew she was wrong.

Another day would pass and she would have no memory of having been angry or why.  It was very frustrating.  She would return to her normal self and expect others to treat her normal.  But we were still angry from the fights the day before and didn’t want to just forget and have everything be as if it never happened, again and again.  We were walking on eggshells trying not to provoke her, yet once it happened and the ‘real her’ was revealed once again, all bets were off.  The screaming was cathartic after awhile.  The past and everything I had ever done wrong was a good source of ammunition for her.

Then the real memory problems started.  She would forget that you can’t put a metal spoon in the microwave.  When I brought it up she would insist that she hadn’t done it.  Another fight would ensue.  We would be driving home and she wouldn’t know what street we were on.  She would stay up all night long and sleep all day and didn’t know if it was day or night when she woke up.

She would lock herself in her room and watch infomercials.  Before I knew it packages were arriving in the mail – hundreds of dollars were being spent on work at home schemes and worthless coins.  I didn’t know what to do.  She insisted that she was going to do these home jobs, but I noticed that all of a sudden she was making mistakes in her checkbook and having trouble reading.  Even if she could do these work at home jobs, they were a scam but she didn’t see it, accused me of trying to circumvent her freedom.

We went to see her doctor.  I told him of the changes that had been taking place.  I mentioned Alzheimer’s   (I never should have mentioned that word.) He laughed at me, made me feel like a fool.  He asked her who the president was, what the date was, a couple of other innocuous questions and then told her 3 words that he wanted her to remember.  A couple of minutes later he asked her the 3 words.  She could only remember 1 of them.  He patted her on the shoulder like a puppy, said everything was alright, told me that she was fine and sent us on our merry way.  She was vindicated.  See!  I told you there is nothing wrong with me!

If I knew then what I know now I would have sued the jerk.  Wish I had taken her to a neuro specialist and not a general practitioner.  Live and learn…

Things continued to worsen but the pace was so slow so minute in time that it was hard to tell on a monthly basis.  It was only by looking back a year or so that I could see all of the changes in her that had been made.  She was starting to have trouble walking, afraid that she was going to fall.  Next was the incontinence, but she refused to wear a diaper, so for months I had loads and loads of pee soaked laundry to do on a daily basis.  I had to cover all of the couches and chairs in crib liners.  I was embarrassed to have company over to the house.  Sometimes the smell was just horrible.

She would ask the same questions over and over.  What time is it?  What day is it?  Where is the baby?  How many cats do we have?  What time is it?  How long have we lived here?  Where is my food… I haven’t eaten in 2 days!?

I started a diary of inappropriate and mean things that she said.  I would show it to her a day later but she would deny having said them.  All I wanted was for her to acknowledge that she was becoming intolerable and understand where we were coming from.  To hear a little old lady swear like a Navy sailor was scary.  How could she not remember??

I realized that taking videos would become important.  I am so glad I have them now although they are hard to watch.  When I would play back the audio tape of her angry voice she would be shocked and apologetic.  We would talk about it.  Didn’t matter though…  It would only last a half hour before she forgot again.  I realized that it was ME that wanted her acknowledgement, that it was pointless to her.  Once I realized that, I quit trying to get her to admit that she was different now.

Years continued to pass and she slowly changed from the mother I knew to someone I didn’t know and didn’t want to know.  She stopped taking showers and cleaning her dentures.  She refused to cut her hair.  She insisted that she had never seen the clothing that she wore each day.  She argued incessantly with my children, especially the youngest who didn’t know that a 6 year old and a 77 year old shouldn’t be battling over how to play card games.  She demanded candy and cookies and would refuse to eat anything else.  The warm loving mother and grandmother turned into an evil witch.  The kids grew to hate her and refused to help her or be friendly to her when her mood would swing back the other way and I could see the confused hurt on her face when they would rebuff her attempts to be friendly.

I didn’t know what to do.  I read as many books as I could about dementia, but they were all about who the people use to be instead of the changes they were going through.  Why was it such a mystery?  It was like if you weren’t a member of the club you had no idea what it was like.  If you didn’t work on an Alzheimer’s ward at the old folks home, you were clueless. I read about President Reagan cleaning his pool.  He would do it every day.  What about the rest of the stuff?  Don’t they think it would have helped to have society know the real story?

I joined a support group and tried to help the other members learn how to deal with their family members.  One man was frustrated because his wife wanted to purchase 12 cans of corn at the grocery store.  He tried and tried to convince her that they had some at home and she would become hostile.  I told him, buy the corn.  Later in the week when she forgets about it, take it back for a refund.  The point is to stop the fighting and agree with the patient, whatever they believe, just agree, agree.  No point in arguing.  The patient is on another plane.  Living in an alternate universe.  Never to return.  The easiest way to cope is to think of them as a child.  A child regressing backwards.  A child that can’t remember what a beautiful person they used to be.

I thought about medication but reading about the side effects, the vomiting, the liver problems I had doubts. (It was stupid of me to worry about the physical side effects when the dementia was a death sentence to begin with but I didn’t know.)  When I read up on it and learned that the meds didn’t actually slow the progression of the disease, I decided to forego the pills.  Looking back, I probably should have tried them, just perhaps to have her be like her old self for a longer period of time.

It went in stages.  There was the season when she wanted to watch The Pianist every single day.  It was always as if she had never seen it before.  Then she wanted to write her life story.  Except what she wrote was wrong.  She thought she was born where her mother was born.  She forgot marriages, children and jobs.

There was the 3 months in the hospital getting over pneumonia.  I would visit her and she would ignore me, preferring to watch the TV.  Then the next day she would ask why I hadn’t come to visit her in a week.  It was heartbreaking.  Once she was back home it was as if it had never happened.  She didn’t even realize that she was now in a different bedroom, closer to the bathroom and kitchen.

There were small moments of kindness.  We would take her to her favorite restaurant for her birthday.  I gave her a gorgeous music box that she loved.  We all hugged and smiled and took pictures and she went on and on about how wonderful the food was and how much she loved us etc.  I would be on cloud nine.

A couple of days later, back at home there was yet another argument.  She picked up the music box that she didn’t recognize and threw it at the television.  Beyond the destruction and mess my heart was bleeding.  I brought up her birthday dinner to try and remind her about giving her the box and break through the haze of hostility.  She yelled that she hadn’t been allowed out of the house for something good to eat for months!  The knife goes deeper.  I picked up the music box and placed it on the piano.  I can’t listen to the tinkling song: “My Favorite Things” from our favorite musical that we used to sing together.

There came a point when I really started to wonder if the new her was the real her that had been hiding deep inside all these years.  What if that wonderful person, so good at hugging and taking care of boo boos and listening to my woes was all fake?  What if this creature was really the mother I never knew?  All of my school friends used to say she was the coolest mother on the block.  I have so many memories of talking and sharing, painting walls, building 3D puzzles.  I started to get hurt so many times each day that to protect myself I told myself she was dead.  She was dead to me.  Finally I mourned and realized that my mother was gone and I never even got to say goodbye.

After several years we finally got into a routine.  She was finally OK with wearing diapers, although sometimes she would only change it once a day or take it off and not put on a new one.  When I tried to change it for her a fight would start.  She would swear that she had just changed it or that it was dry etc…  It got to the point where I was afraid to ask her.  I really didn’t need the stress even though the family was begging me to get rid of the stench.

Then there were the fights over medication.  Every night I would tell her it was time for her pills but she would insist that she had already taken them.  I would show her that they were still in the days of the week box, but she didn’t know what day it was.  She would accuse me of trying to poison her.  We stamped the calendar with a happy face for taking them and an unhappy face for refusing them.  Several weeks would pass and she would swear that she had taken them on all of the days with the unhappy faces.  Eventually I just gave up.  I was the caretaker, but she refused to let me take care of her.

It went on for 11 years, a very slow progression.  My bitter feelings are mostly gone now.  Near the last year she would sit on the couch and say to my son, “I didn’t know you could play the piano so good, when did you learn that?”  Every day he would smile because she had asked him the same exact question the day before.

Her short term memory was completely gone.  She would ask for dinner and then be completely surprised when I handed her food 5 minutes later.  “How did you know I was hungry?”  She would watch a movie and say “I used to live there!” even though it was 60 years ago.  Watching her listen to music from the 40’s and 50’s was strange, she knew every single word and laughed so brightly as she sang along.

When she had her CT the doctor said that her brain had shrunk quite a bit.  He said as portions go dormant she will regress and then other portions of the brain will pick up the slack and she will come back until those connections stop too.  I tried to take advantage every time she seemed to have made some new connections.  It was nice to hear her ask “Why can’t I remember?” when years earlier she wouldn’t admit that for anything.

Sometimes she thought I was her mother which made her cry since she lost her mother at age 16.  I would hug her and tell her how proud I was of her, what a good girl she was.  She could no longer remember the names of my children or husband.  It became ‘the tall one’ the ‘brown haired one’ and ‘the baby’ who of course was now 13.  Family members from far away stopped calling.

When she seemed a bit more like her normal self, friendly, complimentary, there had been so much sludge under the bridge the past decade that family members had a hard time even smiling at her or answering about how their day was.  I tried to tell the family, she has changed again, this is a new person again, please hug her, hold her hand, smile at her jokes.  But they were leery.  They knew it is only a stage, and it is better for one’s heart to keep it locked.

I dreaded the end for years. There came a time when she could no longer walk without slumping like a rag doll.  She had trouble chewing her food.  Swallowing pills was out of the question.  She could no longer make it to the bathroom or the kitchen.  She would call on me constantly for water or a TV channel change.

Then the confusion seemed twice as bad. She refused to believe she lived here.  She kept asking for her young daughter, not realizing that the person she was asking for was me.  She constantly accused me of lying to her.  When she went a day without speaking it was such a relief.

My family didn’t understand why I couldn’t wait for it to just end.  Please make it end.

Before and after:


She was so loving so giving, I would have done anything for her.  Even take care of her until her last day.
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Update:

Thank you so much Alecia Li Morgan for publishing this story on Slate and Huffington Post, I hope it helps many people who are starting the journey.

I was reading the comments one day and was shocked to see one there by my son who is off at grad school.  It was a wonderful surprise.

His words:  This is one of Jean Marion’s sons. When she mentions the descriptions for my family that my Grammy gives them “The tall one” is my father, “the brown haired one” is my older brother, and the “baby” is my younger brother. I have since moved out of that household back in May 2011, and what my friends from my childhood (early-late teens) remember of my Grammy is all of the bad. The times she would argue with us from our room, and the moment she got up to come into our room, we just had to shut and lock the door. 5 minutes later she would be back in her room, not even remembering that she was upset with us.

I have always felt guilty for treating her the way she treated us. The harsh things my brothers and I have done to her because of the hostility she would show us each day, was completely unnecessary. When I visit home and I’m told to not try to help her, just let my mother take care of it, I feel even worse, I want to try to help my Grammy, the woman who cared for me while my parents were busy or away, the incredibly loving person who would play card games with us and Scrabble, and even our old ‘Wheel-of-Fortune’ handheld video game.

I came on here to try to explain some things from the point of view of a growing teenager during the time of her falling out of grace and now a young adult looking back from a distance. I love my mom immensely, and I love my Grammy despite all that has happened between us in the past.

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Updated to say, Bye Mama.  11/14/29 – 11/10/14

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Questions and Answers:

Q & A

Would you mind telling me about the medications you tried with your mother and if they were of any help?

My mother is becoming more and more combative and difficult. Her moments of any sort of clarity are becoming farther apart. Memory is fading constantly, especially short term; incontinence is a big problem. I have realized I was saying goodbye to her a little each day, but, like I think you did, I came to the conclusion that I have already said goodbye to the person I knew and loved.

We bought a bigger house and moved her in with us from the assisted living facility she had been living in. We are feeling that we need to put her on some kind of medication (we are seeing her doctor next week.) The intention of this would be to help stabilize her mood swings, keep her calmer, help her sleep, and especially to lessen the combativeness. This is all as much for us as it is for her. We are struggling to keep our marriage stable in the midst of all of this instability.

I do not mean to ask for medical advice, I am just trying to get a sense of what medications are out there and would like to know a bit about your experience with them.

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Most dementia patients that are in “Memory” units (similar to assisted living, but there is no ‘exit’ door) are put on Haldol.  It calms them down.  My father who just started with the dementia within the past year is currently on 10mg of Haldol but he is still swearing at the nurses etc…

I actually couldn’t give my mother any medication because she thought I was trying to poison her when I would try to give her a pill.  So we basically changed the way WE acted around her to try and limit the amount of combativeness. Unfortunately this made her quite lonely (if we talked with her she would fight with us, if we didn’t talk with her she was lonely).  There wasn’t really any way for us to ‘win’. She did however enjoy talking with strangers.  (Of course!)

Try to write down as much as you can remember so that the doctor has all of the mood information.  Make sure you are in the office with her when they are talking. She might act quite cordial with them and it will seem to the doctor as if she is just fine and dandy and doesn’t need anything. You need to make him understand.  Don’t ASK for something. Say she NEEDS something.

My mother was already living with us when she started her decline, so playing musical bedrooms was easier than moving.  Our marriage was quite strained until I learned to just shut up and ignore her when she was trying to provoke me into a fight.

Some things there were no help for though.  Changing her out of pee soaked clothing, getting her into clean diapers, changing her bedding, etc… she didn’t want anything to do with it, there would be swearing, slamming doors, etc… but the rest of the family just couldn’t stand the smell so I had to grin and bear it.

Each day and week that passes, you will learn a little bit more how to handle things so that it gets easier.  It seems strange, but in actuality, once all of the short term memory is gone, they are a lot easier to deal with.

Best of luck to you!

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This has been a long time coming, I just wanted to let you know that reading your answer has profoundly affected my life, so I wanted to thank you for writing it.  I was finally told about my father’s diagnosis last week. Thanks to you, it was less of a blow, because I already kind of knew from the signs. I don’t know how I can repay this.

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A lot of people, when they first find out, beyond the fact that is a crushing blow and worrisome, they sort of think they know what the road ahead of them is going to look like.  But each individual is so different that there is no way to know what your father is going to be like or in which direction he is going to go, or how long it is going to take etc…  It’s like staring up into space and knowing there is no end in site, not one that you can see right now anyway.

If your dad has it he already has had it.  Probably for many years.  There is no stopping it.  You can take drugs to manage the symptoms but the disease moves right along on its path regardless of the medication.

Keep in mind that once he is at a certain stage he won’t know that he has it.  So trying to get his affairs in order before that happens is usually a good decision.

The true victim here is you and your family.  You are going to be the one to notice the changes and deal with them. You will experience the loss of your father before he is gone and that’s the saddest story of them all.
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I realized he must have had it since he first began to fall asleep in the middle of people talking. When I was a child, we once walked into a blizzard on the mountain, and couldn’t see anything. It feels like that, but this time he is the child, and I know he is going to die before it clears.

My father is already gone, what remains is to have as many good times as we can with this other person who carries his memories. What’s tricky is that he exited through the back so subtly that I didn’t realize it was time to mourn his passing. That will probably catch up to me someday, it’s hard to see clearly while his lucid days are still recalled in lucid moments.

What bothers me most is that he had a (successful) heart surgery last year, and leading up to the procedure, it became clear as never before exactly how afraid he really is of dying. Since I know there will come a time when he no longer remembers us, it tears my heart out that his end will come among people he can no longer recognize, in fear of a development that he will not be able to understand. There is nothing I can do. It is horrible to say it, but part of me wishes that he will die while we can still comfort him, the impending loneliness seems unbearable.

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My husband was just told that his father at the age of 81 has Alzheimer’s and via the State of California is no longer allowed to drive or be left alone.  He was devastated by the news, although I knew a year earlier because the early signs are very obvious, but he remained in denial.  He cried because his father was ‘his person’.  You will know what that means if you have ever watched Grey’s Anatomy.

When the dementia started full time (and I consider that the ‘actual time’ that I lost her as opposed to now) the Mom I knew was gone, and I felt trapped being the caretaker of a stranger that hated me most of the time.  I mourned her loss, but nobody around me understood why.  Having someone that I loved more than anything and would do anything for, sneer at me for putting too much milk in her cereal was such a bizarre dichotomy and I never imagined it would last 11 years.

This morning the retirement home where my dad is living called and said they wanted to move him into assisted living.  Between my dad, and his dad, and his Mom who doesn’t even know who he is anymore, I feel like I’m drowning in a pool of dementia.

Thank you for sharing your story with me.  Perhaps I should have focused more on good times instead of my internal anger at having yet again to change another pee soaked bed.  I probably should have talked to someone about that so that I didn’t let it affect my relationship with her as a person.

When she had lucid moments we would hold hands and I would tell her as much as I could.  About her illness, my troubles, and happy memories.  It always seemed like it would last forever, but back in the cave she would go.

I wish you both the best.

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Answers:

It probably took me about a year to harden my heart and realize that she wasn’t trying to hurt me on purpose.  I mean yes she is verbally abusive, even when I say please or point out that she is being antagonistic for no reason, I fought back for several years until I realized that the rest of the family would get very tense while we were bickering.

So now I only spar with her when no one is around, otherwise I just ignore her taunts and hope she doesn’t raise her voice too high, especially when everyone else is sleeping.

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I’ve heard stories from both sides… either no personality change, just confusion and memory loss and a quick decline, or major personality change (like both of our mothers).  I’ve heard stories from the nurses that work in the wards of Alzheimer’s patients (probably put there because the family couldn’t take the attitude) that they deal with yelling, screaming, assault, verbal abuse, basically much worse than my mother has ever been.  They tranquilize them but that just leads to more confusion and falling etc… I just wish there was a way to put them out of their misery that they can’t even really express.

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I thought it would make me feel bad to have her not know who I was… but I could tell she recognized me even if she didn’t know I was her daughter.  I was the caretaker or her mother or whoever.  And for her, of course, she was always happy to have someone to talk to.

So really in the end, it was me that felt the loss and as much as I wanted to think “Why bother, she doesn’t know who I am anyway?” she still treated me as a human, and I guess that’s what it’s all about anyway.  A comparison would be a mother and a 3 month old baby.  Of course the baby has no clue who you are, but that doesn’t make each of you love one another any less, if that makes sense.

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Last night she threw a temper tantrum and I was treating her as I would a 2 year old which is usually done with the thought that the 2 year old will learn from the experience.  In thinking about how I handled the situation (expecting her to learn) I realized today that I did everything wrong and probably exacerbated the issue. – “She will become a child that you cannot punish.” So true!

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Q & A

What about placing your mother in a nursing home?

I have spent time in nursing homes watching patients in the Alzheimer’s ward, usually it is a locked ward.  I just didn’t really have a good feeling when I was there.  I understand why people put family members in to the care of a hospital, especially if they have to work or have a lot of young children or live far away.

It just worked out in our case that we had a spare guest room and I asked her to move in with me after her husband died because I just didn’t like the idea of her being all alone since she didn’t know how to drive or fix things around the house etc…

Then when I had my third child and decided to quit work and not put him in daycare that worked out great too because I was here full time for both of them and now of course for her.

Then there is the financial aspect.  Realistically it is a lot cheaper for me to take care of her on my own than to pay someone else to do it.  Her expenses are basically diapers, oxygen, food, laundry, doctor visits, life insurance, used books, that’s about it.

After taking care of 3 kids, diapers, bottles, medicine, and what not, taking care of an adult isn’t really that much more difficult.  I mean nurses do it every day and it’s no big deal for them.

She would be in a room all alone, waiting for 2 pm to play bingo… it’s just not how I envisioned the end of her life.  Family is everything to me, if that makes sense.

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I’m pretty sure my son moved 6 hours away to college just to get away from the daily stress.

Last night I painted her nails and she has been smiling since.  Of course I don’t expect it to last long, but it was a nice experience to share together.

I agree about custodial care.  If a nurse can change a diaper and bedding, so can II don’t really see what the big deal is.  I had 3 boys in diapers for years.

I like the ‘secret jail’.  We had to get a new stove that is impossible for her to figure out how to use.  Same with the microwave.

Doctor said 3 to 6 months on the cancer.  She is still going strong at 23 months after diagnosis with no treatment and no pain.  I just can’t believe it sometimes.  She is the energizer bunny.
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About writing a book,  I’m sure I could stretch out 11 years of descending dementia, but it would get to a point that it would be a book I wouldn’t be interested in reading, just too much negative junk.

It’s over, I have my life back (of sorts, dealing with my dad now…) and I hope my answer helps many people see the beginning signs in their own family members.

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One thing I learned after a couple of years was to give up on the tooth thing.  When she says her tooth just fell out I would just go, “Oh really?” and she would experience the emotions all over again, and then she would forget and that would be that…  On to the next thing.

The sad part is when they don’t remember someone dying and have to relive the grief when they find out again that the person died.  Luckily, after several years, that person didn’t seem that important to her as previously and so learning of their death was more of a “Oh no!” rather than a “What????  OMG!!!”

Pills do make the symptoms appear to be slower which is nice for the caregivers, but behind the scenes the brain deterioration continues on at the same speed.  Then when the pills stop working it all catches up to where it should be and it seems like a major change has happened when all it was was the pills pooped out and the personality becomes what it really is.

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Sometimes they become friendly, sometimes they turn into monsters.  It’s hard to convince yourself that they are the same person when they are so obviously not.  It’s OK to distance yourself… You have to protect you too.  If she is nice, relate, if she’s not… ignore.  Hard to do I know.  Best of luck!
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