From this

to this in just 8 years

When I first started blogging about my experience as Betty's caregiver I got some negative feedback from a family member who felt I was "putting too much out there" exposing her, possibly putting her in danger.  I couldn't find my voice after that and pretty much stopped blogging.. only posting occasionally.

In December my husband and I moved in with Betty because she could no longer be alone and we just hated the idea of placing her in a memory care unit.  It has been the hardest thing I have ever done.  Some people are easy to live with.  Betty is not all that easy.  I found the perfect word to describe her; acrimonious.  If you go to that link and see all of the words that define acrimonious you will see what I live through every day.

In late December I started to see these white ghost shapes sliding up and down in my eyes.  I had no idea what it was but it was very annoying and very disconcerting since I had such a hard time describing it.  In January we made an appointment with an eye doctor down here in Florida and he brushed off my complaint.  I continued to see the white spots and also seemed to have a million more floaters, so I made an appointment up north with my regular eye doctor, as we had my sons wedding in June.  

When I explained the whole thing to Dr. Goswick he took me very seriously and took pictures etc.  He noticed a big change since my last exam and sent me to a retina specialist the next day.  I was given all sorts of tests and was diagnosed with Birdshot Chorioretinopathy.  Needless to say I was and am, floored.  Biggest fear I have always had.... blindness.

What does all this have to do with Betty?  One of the components of Birdshot is that stress is often the factor for bringing on the symptoms. Could I be more stressed?  This is NOT fun.  This situation is just NOT fun.  You have to have more patience than I have and I am pretty darn patient.  Bob.. not so good at patient.  It is a constant battle to remember that "IT IS THE DISEASE" and not just Betty being Betty.  Oh, there is still that.  She has been acrimonious since I met her in 2000.  How much is disease and how much is Betty.. I have no idea.  She wakes up on the wrong side of the bed 99% of the time.  One wrong word and BAM! 

This disease SUCKS!  There, I said it.  It sucks that Bob is spending his retirement years locked in a house that he never planned to be in, trying to learn patience, trying to be a loving son and an understanding husband.  He thought he would be playing golf, sitting on the deck reading, maybe even getting an RV and traveling.  Instead, he is trying to read while listening to the same story over and over and over.  He did just join the golf course here but that means he will have to leave me with his mother and he can't help but feel guilt about that.  (Not necessary... I will survive.)  We cannot go out to eat.  We can't have a conversation without parroting or lectures that we can't discuss things at the table.  We can't talk or make noise in the morning or night.  We have to keep the cat quiet and out of sight as much as possible because, Betty hates cats.  We can't vacuum when we want to because it makes noise and no one makes noise at "that time."  I can't prepare dinner without trying to figure out a way Betty can help or hearing over and over the stories.  I can't get up in the morning and make a batch of muffins or put some dishes away in the cupboard. Simple things.  I cannot relax in the kitchen and just prepare a meal or make a loaf of bread or wash the dishes.  If I do not do the "right thing" I can look over and she is crying.  You know, it is not easy to change the way you like to do things.. not for Betty and not for me.

This disease sucks!  It is the disease that allows for Betty to sit and worry about what she is going to prepare for her guests.. us?  She worries about what she has in the fridge to make.  She has not cooked a meal in almost eight years.  Has not really shopped for over five.  I have done everything for her.  Imagine me trying to bring all of my belongings into her kitchen and putting them away without making it too obvious to her.  Moving things.  Shifting things.  Rearranging.  She says every day, "Leave those dishes and I will wash them."  Nah.  Not so much.   She still thinks she washes her own clothes.  It is up to us to figure out how to do all those things without causing her to realize that she does nothing but sit in the chair staring straight ahead.  Our reality is not her reality.  We have to learn to live in her often made up reality and I am here to tell you.. HARDEST thing EVER!  

This disease sucks!  I blather on.. poor us.   Lord, please remind me every day that this disease has a stranglehold on Betty.  That SHE is the victim.  She is the long-suffering.  I am here to be the comforter.  God please give me a better attitude and the kindness I need, to deal with my living situation.  Please guide me. Amen.

Time To Make Decisons

The time has come to make the very hard decisions concerning Betty.  We visited our first, and high-end of what Betty can afford, Memory Care facility.  We spent two and a half hours talking to the sales person, (my term) and looking at the Memory Care Unit.  When we walked in thru the keypad entrance the large group was sitting in the rotunda, singing.  Some were singing and some just looking around like deer caught in the headlights.  We were told that it had been a big day for family visits but no family were there then.  

They allowed us to go into one of the private rooms.. large enough to include a bed, small couch and her own TV.  There was a private bathroom with toilet.

Then we were going to see the semi-private room which is really what Betty can afford but there was a woman laying down so we couldn't go in.  My impression was..SMALL.  Was that the ploy to get us to go for the private or was it simply so that we would not get a vision of just how small the room would be?  Those are things that came to my always cynical mind.

The place was clean, staff attentive and very friendly.  It was possibly ideal.  But, it doesn't feel like Betty to me.  They have their own private dining room with fiesta ware dishes and menu's to choose their breakfast, lunch and dinner.
It is truly a lovely facility but, it just doesn't feel like Betty.

I went to bed still burdened with the thoughts of putting Betty in such a place.  Their suggestions for little white lies to get her there.  Her hug last night rippling through my mind.  Her fear, faith in us, her happiness. All of those things churning through the terrible sleep.  I awoke and turned to Bob and said, through tears, "I just don't think I can do it!"  I really do not think I can.  

We have talked about the impossibleness of moving in with her.  Their arguments, my frustration, just no privacy.  We have now talked about the possibilities of moving in with her.  Not spending on a new house just moving in and spending to make it a place we could take care of Betty until she is not aware of her surroundings or is incontinent or bed bound.  We are facing that now because we could not hurt her and we cannot lie to her.

And so.. we are visiting one more place before we make a decision and before we mention it to Betty.  It is well with my soul.  Maybe I am more Ruth than I had thought.

Long Time No Write

It has been a very long time since I have blogged about my journey with Betty.  Much of that I want to say is due to restrictions put upon my journaling about Betty by family, afraid that Betty's privacy was being infringed upon and that my journaling would somehow put her in danger.  I internalized it as criticism and stopped journaling.  Then, I lost my grandson Ethan and I used that as an excuse not to journal.  I was still living this journey, still struggling without communicating about it, keeping it all inside and just being stressed.

I have made a decision to go ahead here and journal, to open up about our daily walk.  I have no way to go back and have a visible path of the progression of this disease.  I have a fairly good memory but I tend to block out things that disturb me.  I can't go back and write about the shower struggles; the good, bad and ugly.  I have no reference point.

I can say that we are still here and are not traveling with Betty. I can say that we do not feel, at her current level of disease, it would be anything but detrimental to her health to change her environment other than the possibility of a permanent move to a memory care unit.  Betty does not do well with change.  She is ok as long as things are routine but a doctor's appointment can wreak havoc for days.

We are in the place where we MUST move forward with either full-time in home care or a placement. Betty is very unhappy in her current situation.  The change is not easy for Bob and the process is slow.  I have no idea what is feasible.  I wish this were easier.  The stress is pretty scary actually.  

I am going to journal. 

I'm feeling overwhelmed by everything today.   So much so that I almost just published those six words as my blog entry.


Betty went to visit her niece for a Friday, Saturday and came home Sunday two weeks ago.  During the night she got up and hit her leg on something, in the dark room and pushed her skin back on her left leg.  Her niece heard whimpering, which is what Betty does when she gets frustrated or upset, and when she went into the room Betty's leg was all bloody.


So, when she brought her home I started bandaging it as I have had to do many times.  By the week-end it was getting redder so on Tuesday we took her to a walk-in clinic where she has visited before when she was up north visiting.  They gave her a prescription for antibiotics and marked it so that we could tell if the redness expands.


It does seem to be getting a bit better but I will be sending her off to her daughters with all of her bandages.  Betty will be going tomorrow to stay a week.  Lots of stress today as I have attempted to have her change out of her soiled clothes so that I could wash them for her trip.  She put the dirty ones back in her drawer which she has been doing but insists that she NEVER would put soiled clothes back in with the clean ones.  I finally said, "Betty since you do realize your memory is not what it was maybe you need to trust someone, Bob or me, to help you keep track."  I asked her to please put on her denim shorts with a t-shirt. Please.  Fifteen minutes later down she comes wearing the soiled ones.  There was no good morning hug for me and no small talk repeating.  


So, I am tired.  Tired of having to cajole and tired of trying to do any of this.  I need the week off.  If all goes according to plan Bob and I will be arguing before we pull away!  That seems to be our pattern now. Fighting. Arguing.  I am just tired.  Went to the doctor myself this week where I was told my blood pressure was 140/90.  I have gained 40 pounds in three years.  The doctor prescribed Cymbalta for my pain and depression but at $41.00 a month is it worth the effort?


While I sit here typing this all of these poor people have been shot and killed and injured in Colorado.  I should just be thankful for the many blessings I do have.  


I have too many things to do today to get bogged down over a dirty short set.  I have to convince Betty that I need to wash her hair and then I have to help her get packed.  An all day project.

This is my mom who passed away in 2002
I wish I could call her right now!

I am back home and getting ready for Betty's arrival.  The phone calls are hard as she is quite distressed back in FL but we are almost there, tomorrow she flies north.


Purchased some new undies, deodorant, toothpaste and shampoo so when she arrives hopefully she will feel at home.  I am washing the undies and putting them into the drawer under the old ones in hopes of them going unnoticed.  It is very funny how small changes are just not accepted. 


The day before we left was a very bad one.  Confusion about where she was, where she is going, how she is getting there, etc.  Then, there have been the daily calls full of anxiety.  It seems that I am able to calm her down but there is no telling how long that lasts once we hang up.


These pictures show some of the preparation I went to to make this as easy as possible for Betty.

So, all the clothes I sent were pressed, hung and photographed.
Betty has a list of what was sent and a photo next to the words.
We packed her suitcase with all of the rest of her clothes and made a list of what was packed.  Then I left notes that said Betty you are all packed!  I set up her flying clothes, earrings, shoes, etc.  Set them apart so that she can see them easily.

 Betty would look at the calendar and start to worry that she would have things to do and I would remind her to look at the printouts and see what "we" had already done.  As usual I tried my hardest to let her think she was ever so helpful.  It is so hard for her to think she has to depend on someone to help her.

We washed her sheets and as many clothes as I could get my hands on so that she started the week with clean clothes and bed.  I also washed her hair on Sunday and will do it as soon as she arrives.

The truth is I am overwhelmed and even more so now that we are here with water leaking from the shower upstairs and the toilets doing their leaky thing... (clean water thank God!)  We were able to visit with Josh, Annie and the kids yesterday.  


This is hard for me so I know it is a hard transition for Betty.  We pray that she will adjust quickly and feel comfortable here for the summer.

Last night Bob mentioned that we would be leaving on Monday to head north.  Big time OOPS!  


Rule #1, is; Never tell Betty anything in advance of when she has to know. Ever.  It is remarkable how much anxiety we can prevent by following rule #1!


There was a distressed phone call not too long after they had hung up.  "So, you are leaving tomorrow?"  "I will probably get to talk to you won't I?"  The anxiety was in her voice mixed with a bit of anger that we had not come over to see her before we left.  Mind you we will be apart for a week at most.  But, to Betty a week is a million days.  


It's funny, but we try to be so careful about what we say and yet our mouths start spewing out information we KNOW we should hold back and once it is out there it is OUT!  I can't tell you how many times we have looked at each other after one or the other has let the cat out of the bag and just rolled our eyes knowing that the consequences for Betty and for us we different but equally profound.


I have been using Cozi.com for awhile.  They have this great checklist where I write down things that need to be done and check it off when it is complete.  I am THRILLED when I get to check things off.  Today I got to check off a biggie... mailing packages north.  Bob had very few to carry in because we decided to just limit what we send north as we are there for a seemingly short time.  I am not looking forward to the day when I say.."Oh darn! I left that down south!"  

Last night we went to Betty's to have dinner and so that we can get her to shower.  So far this has worked out well because I just scoot her into the shower as I tell her I need to get dinner started.  Last night Bob took all of her decorative plates off the wall and I wrapped them in paper and stored them in the new plastic bins I purchased.  One word, hurricanes.  Betty has always taken everything down so we continue.   She took her shower, I cooked her left-overs from the night before and made sandwiches for Bob and me.  

Just a couple of the MANY plates we put away.

I brought the box of clothes that I have been gathering from her house.  I have them all washed and pressed and put into a box to send north.  As I sat there in the chair while we ate I kept praying for guidance about approaching Betty with the packing and clothes issue.


After we were done I slowly broached the subject of needing to locate some of the clothes that we are sending north.  I almost made it sound as though she had been involved in the packing all along.  Packing for this trip, as you can imagine, is one of the hugest hurdles we face going north.  Our goal this time is to send a huge number of her outfits by mail and have her pack just one suitcase.  The suitcase issue is always hard because Paula, who flies north with Betty, prefers to just have a carry on and Betty thinks she needs a million outfits.  


Betty scurried around, trying to appear to understand what was needed but not really finding a single outfit I requested.  When I asked her for slippers she pulled out a pair that had worn enough on the sole to be too dangerous for stairs.  So, I went on the search in Imelda II's closet and found a brand new pair of totes slippers with a wonderful tread.  She "never saw them before" but agreed that they would be good to pack.  As an aside I also found the little clock that we have been searching for hidden in her old slippers.  She must have put the alarm switch to "on" and her way of dealing with the ringing alarm?  Inside the slipper!  


We were able to walk out of the house with most of the things we need to send minus a few that need washing.  That will leave her with a nightie, hang around shorts, a nice shorts outfit and her underthings to put into the carry on.  It should work out ok!!!  


Bob and I know that this would be easier if we all stayed here but also know that we need to spend time in our own home and being away during hurricane season is a huge plus!  We'll see if Betty does ok with the upheaval or if this needs to be the last year we do it.  I am not sure what we will do in the alternative but we'll face that hurdle when we come to it.  Last summer it only took Betty a couple weeks to acclimate herself and feel at home.  I am hoping this year will not be too bad for her.  She does want to see her family and sister-in-law/friend Kay. Plus she spends a week with her daughter which is respite for Bob and me.


Next task... to take pictures of the inside and outside of Betty's house because she does start to forget it and that makes her anxious.  I will make up a little picture album of her home, street, her neighbors homes and just down the street, her hairdresser Janet.

So many plans need to be made.  In just seventeen days we will head back to Massachusetts to ready the house for Betty's three month stay with us.  So many issues cloud my thinking that I can hardly remember what has to be done.  Mail, cable, stop trash, clothes to pack, what to ship, fridges emptied, oh the list goes on and on.  


I know I have done this over and over but I am telling you it is overwhelming.  It has become increasingly difficult to get Betty to pack and leave her things in the suitcase.  I get her to lay things out on the bed and then to get them folded into the suitcase.  I write down what she has packed and check off the list. Last year we even took her suitcase out of the house except for one and she still left things behind that had been packed up.


There is her medication, glasses, shoes, jacket, purse and toiletries.  They go in the bags out of the bags and back in.  I have a list with check marks and BIG notes that explain what is packed.  NONE of it works of course and the anxiety it causes me is multiplied twenty fold for her.


So, I have held my whine party and now I am going to go about building my lists.  If there were other options... but there are not. 

I'll be happy when I get home to my flower boxes and birds!

All my little Massachusetts friends..

There is great celebration at Betty's house and it is all because of a broken pair of overly worn shoes!  Last week the sole of one of Betty's shoes came loose and became unwearable.  Until you have experienced "change" in the life of someone with Alzheimer's, you can't imagine the unrest it can cause.


Every time we wanted Betty to get ready to go out she would find a reason not to go.  Every time we mentioned heading to a restaurant she would come up "too many trips to the bathroom" or that she didn't feel herself.  At first we really didn't know why this kept happening and had started to suppose that she was feeling uncomfortable out in public.


Then, one day when we arrived, there stood Betty barefoot... obviously searching for something.  When pressed, she wasn't sure what she was looking for, but I could see that it was her shoes.  I led her into the bedroom closet and while mentioning that her favorite shoes had broken I pointed to some other shoes that she has in her closet.  


I went home that night and started searching the internet to replace the broken shoes with, hopefully, the same model.  I did not hold out a lot of hope but a simple search led me to a website with, voila, the exact same shoes.  Ten minutes into it I had purchased two pairs so that this doesn't happen again!


The shoes arrived on Tuesday and you would think I had gotten Betty an expensive pair of earrings or a cruise to the Bahama's!  She was so excited and so thankful that she called twice the next day to thank me again. It is clear now that some things are essential to Betty's comfort, things that would not mean a great deal to most people.


I have learned an important lesson over these shoes.  Betty needs her routine to be unbroken by change in order for her to feel safe and somewhat in control.  Since Betty is not capable of doing these things for herself it is up to Bob and me to try to look ahead and fix things we can control before they become an issue for Betty.  I use fix in a new way.  Fix: make things right, solid and sure. 


I can almost guarantee the shoes will be on Betty's feet today when we pick her up.  I feel certain that it is the best thing I did all week!

UPDATE:
Did I say I would guarantee that Betty would have the new shoes on?  LOL!!!  Wake me up... she wears them when she gets dressed in other than her shorts which she wears here when she is just coming here to eat.  Sure enough she had her old pair on.  I was just a bit cocky...LOL!

What a day!  Yesterday I made a handful of appointments for Betty; mammogram, chest x-ray, eye doctor and toenail trimming.  We were so fortunate to get the mammogram appointment for today but that always leaves me anxious as to whether we will be able to get her dressed and out of the house.


Surprise! Surprise!  I called right after noon and with my happy positive voice I said, "Hi Betty,  What are you up to?"  She responded in a positive voice so I dived in.  "You know, Bob and I will be picking you up at 2:15 instead of 3:00 because you have the mammogram appointment.  Then, right after that we will come back here and play cards and have dinner."  Talk fast, sing song and positive.  It worked!!  She only called back twice and I reminded her no deodorant.  Finally, right before pick up time I called her to remind her that she should wear her brown loafers because her tan sandals, the ones she wears every single day, broke. 


When we arrived you could see that she had been somewhat anxious but had pulled herself together.  The people at the mammogram office were wonderful and the whole appointment went well.  **Reminder to self: Call the office tomorrow and report the GOOD stuff.  She raved for a couple hours about how nice the woman was.  


We did play cards and she had her usual problems but it works out and keeps her mind working.  Dinner followed which she thanked me for about a DOZEN TIMES TWO times.  


Thank you God for the ease of this day.  Her hair did not get washed but I will do that on Sunday.  Let go of the little things.  

I have not written about Betty's family.  Betty is 89 and was the first girl in a family of six.  There were two boys older than her, then a brother, followed by two girls.  Until last summer all her siblings were alive. We received a call last summer that Priscilla, her youngest sister had died.  Poor Priscilla had struggled with a husband who had dementia and due to an illness she passed away just months after getting her husband into a home.  Three, the oldest two brothers and her next to youngest sister, all have/had symptoms of dementia.  Her oldest brother, Fred, is 91 and lives in a Veteran's Home in Nevada for memory care.  Her brother Don passed away two months ago just a few months after being put into a veteran's home in Massachusetts.  She has a sister Jean in assisted living in AZ so we do not know her condition other than she has dementia.   Really that leaves her brother Paul and my understanding is that he too is having memory issues and is repeating a lot.  


Don had an autopsy done but I am not sure the results are in as yet.  It will be interesting to see what kind of dementia he had.  Hard to believe that a whole family could have dementia.  Betty's mother had hardening of the arteries.  Her father had signs of dementia but at the time they called it senility.


If I were one of their children would I get a test?  I can't say.  My mother had ovarian and breast cancer but I have not gotten a test.  


Our good health is precious!

Clearly I need help.  After answering three phone calls today from Betty, each about whether she should shower before we arrive , I went to the cookie bag and dove in.  Three cookies later I looked at my last entry and laughed.  SURE I can get my eating under control. Arghh!  I just have no clue how to do it quite yet.  The call, the stress, rising and eating.  Seems like a pretty clear path to me!


I have no idea what we will face today as we have Betty shower.  Last week I was convinced she stood outside the shower and washed with a cloth.  When questioned she says she never lets the water run.  Today, her son Bob is charged with telling her that in order to get the dead skin off she needs to let the water run over her darn body.  That seems like a good trick.  If she shuts the water off I swear I am sneaking in to see what she is up to!  What is it with showering and alzheimer's?  I just do not understand?!


I saved the above and never got back to it last night. There is always the "tired" aspect when I leave and get home but last night was more that I just did not feel like thinking.


Dinner was great and as usual I did not fuss.  I don't mention that I am on pain much, so mentioning it now, I AM IN PAIN. Constant. Never letting up. Pain.  Between my back and neck pain and fibromyalgia, I am in constant pain.  What I do for Betty and for us is done by the skin of my teeth.  I go inch by inch to get things done.  I take many shortcuts and I am not apologizing for that as I do get so much accomplished.  Any direct sitting is pain..must sit to the side.  And standing...oh my! So, when I prepare food I do it in stages and I aim for as fast as possible.  Last night was no exception to that rule.


While Betty was showering I cooked dinner.  Not having the repeated, "what can I do?" is helpful. You needn't tell me to have something for Betty to do because in this case it would not be helpful.  We eat on tables at the couch and chairs and she would not understand setting those tables.  One can not have carrots to peel at every meal.  So, when Betty was done and I had steered her into wearing clean clothes, shorts no less, Betty was able to sit down and just enjoy dinner.  


I am in pain and grouchy today.  Maybe grouchy most days.  For the most part I keep the grouchiness buried and I try to be upbeat. Today I feel like being grouchy with no upbeat and that is ok for today.

The naming of a blog...
I have always admired Ruth in the Bible. In the Old Testament the book of Ruth Chapter 1: 1 - 22.  Book of Ruth


To make a long story short Naomi's husband dies leaving her a widow and then her sons die leaving their two wives.  Naomi tells her daughters-in-law to go back to their homes and while Orpah can't get away fast enough Ruth begs her mother-in-law to let her stay with her.  I admit it... I AM ORPAH!  See ya!  Poof!  Gone!  See this dust?  


I have been married three times.  My mothers-in-law never liked me.  I seemed to marry men whose mothers wanted better for their sons and so we were cordial but never best of friends.  Betty was no different.  She was never all that happy to share her son and I seem to recall he called and asked her permission to marry me.  Hmmm... what would have happened if she said, "No!"  The day of our wedding she had an anxiety attack and spent 1/2 hour behind the building so no one would see her.  


Anyway, now I am Betty's caretaker and although she is nothing but sweet and huggie and has all good things to say about me... I am no Ruth!  A perfect example of the fine line I walk, last night I opened her bedside drawer trying to find her misplaced tweezers and she told me that no one was to go through her things.  With tone! LOL  I do try very hard to not invade her private space but there are times when I must.  


So, for today, I continue the journey with Betty, trying to help her through her day while trying to stay sane, kind and away from cookies.  (Not necessarily in that order!)

I told Bob on the way home that I am exhausted.  I can't think of another way to describe how I am feeling.  We can't possibly think about our summer with Betty because it would be too overwhelming.  The condo is small when it comes to sitting room and since Betty does not stay in her room to listen to the radio or do puzzles she spends 100% of the day sitting right there on the couch.  I realize I am complaining but until you have answered, "So, how is your family?  Do they like school?" over and over a dozen times, you can't be judging me!


I am exhausted.  Period.  Not just in pain.  Exhausted.


Original posted to my veryinkyfingers blog;  A history;

Betty is my mother-in-law.  When we first met I think she might not have been too fond of me.  I met her once in the summer and by Christmas I was in her house visiting for 10 days with her beloved son.  She is one of the original helicopter moms.  It may not have seemed so to Bob at the time but I could see it right away.  

That Christmas I went out and bought lots of gifts and wrapped them and put them under their tree.  I saw Bob's dad go out to Sears and buy a bag full of hand tools, for me, which he was told he could not give to me as, "You don't even KNOW her."  He wrapped the gifts, sitting on the floor, grumbling about having to give them to Bob as Betty instructed.  "Mary is the one who likes tools," he told Betty.  Trust me, even then I knew she was not to be dealt with and so the wrenches and screwdrivers were opened by Bob and I was given a coffee mug which I have often thought was a re-gift.

The next Christmas I arrived laden down with gifts and with no expectation to receive gifts in return.  That Christmas Bo bought me some tools from Sears, wrapped them and there did not seem to be any arguments, they were under the tree with my name on them.  He sent me home with one of his saws as well and some plastic ties from a package of a zillion he had.  He genuinely seemed to like me from day one but it took Betty awhile.  A long while.

Betty would tell the same stories over and over and would repeat things almost verbatim, as though memorized and told as "story."   I would go home from the visits and think to myself that she had spent so much time bragging about herself.  I thought it was strange but Bob did not seem to see it at all so I thought it must be me...maybe I was exaggerating.  Year after year I heard the same stories over and over.  To me it seemed so odd but Bob did not find it strange.  

When Bo died Bob started out calling his mother twice a day.  For the original helicopter mom those calls were all she lived for.  She hardly ever went out to play golf after Bo passed as that first year she nearly fell and hurt her shoulder.  So, those calls meant a great deal.  There didn't seem to be any friends and certainly no activities.  She was never much of a reader, no crafts, no clubs and with golf curtailed that left, sitting at home waiting for "the calls."  

I went out and purchased a laptop so that she could e-mail Bob and maybe get some interest from being online.  I got her a digital camera so that she could take pictures without worrying about development.   Almost daily I was on the phone with Betty, talking her through getting the computer on, finding the e-mail that had just "disappeared" without her touching "anything" and just turning the thing on and off.  Dealing with her unplugging things because they felt warm or she heard a fan running was in itself frustrating.  I could spend an hour a day talking with her and I did it over and over with as much patience as could be mustered.  Trust me, she NEVER knew if I were frustrated by the calls, although she was always apologetic.  That is something she has always been!

The laptop worked for the first year and a half maybe two, daily calls included.  She looked forward to Bob e-mailing during lunch and she would sit and type out a long e-mail to him.  What I would ever have to share with my kids for two calls and an e-mail I have NO CLUE!   But, they seemed to be able to find things to say and I am glad I was able to give her the ability to do that.  

One of the RED FLAGS that happened was one fall when Betty got home, she could not find the cords to her laptop and she started accusing her neighbors daughter, Vickie, of using the computer during the summer. Vickie's mom and dad came over, no doubt pretty hurt and angry, and found the cord under the bed where Betty had hidden it before she left.  

Luckily these neighbors knew Betty and loved her before this happened so they realized that things were changing with her memory, and have been kind about her forgetfulness.

When Bob and I got married, Bo had already passed.  Betty had to go outside before the wedding and during the reception as she got to feeling faint.  Helicopter mom.  She actually told me she had an attack.  I was having such a good time I just smiled and told her I was glad she felt better.  That seemed to take care of it and she appeared to enjoy the rest of the day.

Betty always had good things to say about me, to me.  But, she has often asked for pictures of me when Bob and I first met because she says, "I have told my family how you looked when you first met Bob and they can't believe it."  (I have gained 30 pounds)  Hello?  So, I have tried to always be kind and respectful to Betty but have known that she has had issues with anyone being between her and her Bob who she has more than once called "her boyfriend."

That brings us to now.  The caregiving.  The tremendous patience it takes.  Allowing dignity. Trying to think ahead of trouble.  Listening to the neediness and knowing that a part of me remembers the years when I was on the #1 re-gift list.  Putting her neediness before my needs when often I could curl up into a ball and beg to be left alone.  Setting aside my sadness and realizing that she is afraid and sad beyond belief and that I would be a lesser person if I did not put her needs ahead of my own.  Holding my tongue when Betty says things that could seem crazy when I know that it is the disease talking. And sometimes, no most times, she just needs to talk and feel less crazy not receive affirmation that she is crazy.

So, it is a struggle.  I am only writing here about my struggle.  I am only writing about the part that I feel safe to share.