I find myself unable to blog about my journey with Betty and yet this is the time when it is most important.  A transition time really when she is recognizing the need for more help and that will allow us to approach having people come in.  This is a good step and one we have been hoping for.

The problem for me is that I am in a funk.  I am sure much of it has to do with grieving my little grandson Ethan's death.  Some is my commitment to political views on Facebook.  More than anything it is that I am depressed.   I am sad about everything.  

So, I will post when I can and hope to at the very least record our steps toward more help for Betty.

Ruth in the Time of the Judges

Ruth in the Time of the Judges

Lord please speak to my heart each and every day.

I feel better right now but am not going to sweat the small stuff anymore. I will do the best I can and leave the rest.

Honestly, if  I had to find an outfit to wear and looked at this, which is one side of a two-sided closet, one of two.... I would have no clue what to wear and would wear the same thing over and over.

There are certainly things that no longer fit.  I am not allowed in the closet or in the room, most of the time.

I do not know how to do this.  I do not know how to get Betty to take her pills.  Not too many as she did today but the right amount and I want to give up and throw the pill bottles at her son and scream, "You do it!" 

I just don't know what to do anymore. I don't have the energy.  I can't fight with Bob.  I can't think about it night and day.  I can't worry about it.  I need to give in and give up.  

No matter how many times I say that the door needs replacing we are on the third or sixth year of me saying that it is too dangerous.  How many times am I to look up home health without action?  I just am at my wits end.

Betty is not my mother and I need to throw this at Bob.  I cannot do this anymore because I can't sleep.  i eat and eat til I am so fat I can't walk anymore because my foot hurts.  I have tried to kill myself with food and it hasn't worked.  I am just fat and alive.   

The doctor gave me anti-depressants but I am too depressed t care.  So, what am I to do but write this down, wake up tomorrow and continue on? 

I am still here and still caring for Betty but I am not feeling as at ease about writing due to a family issue with my blog.  I wanted to just be able to continue on but there is a sense of self-conciousness that seems to rob my ability to just pour it out here on the blog.

Does anyone have any suggestions?  What can I do to get past  this?  

It has been a long hard summer... even with a week-long respite.  The anxiety about our upcoming return south is eating away at my stomach.

Needless to say I need to be able to blog.  I need to feel free.  

Betty never really liked cats. MissBooey is on a mission!

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!

It has been awhile since I posted because I have been worrying about what I post.  Somehow that just doesn't seem right so I have decided to go back to posting what I am feeling, the experiences we are having with Betty and the struggles we face ahead.  I understand worries about her picture being posted and I will refrain from posting picture's of Betty's face but I also know the value of having pictures for me and for others who like to see Betty.  


I have taken care of Betty for a few years now and have given up a lot of my time, freedom and rest to offer all that Betty needs to have an independent life lived with as much dignity as possible.  I have helped her son learn how to cope with losing the mother he knew and living nearby this new mother who repeats and repeats and repeats and communicates in what we fondly refer to as AW. (Alzheimer's World)  I helped him to move near her when it was not really in his plans for his retirement.  I made sure pills were taken, groceries bought, clothes washed, showers taken, sheets changed, cards for family birthdays purchased, special calls made.  If a birthday card was bought and sent it was because I made sure it happened.  If what she needed was more time with us I made the suggestion even when it was not well received.  


There have certainly been times when I have felt exasperated and wanted to scream.  There have been times when I wondered what I could do to make Betty's life easier and let me tell you there have been many discussions with Bob about what we will do in the future.  I have done this all very lovingly with never a raised voice, no visible resentment and with as much patience as I can muster.


So, on that note I will say that if you are reading my blog and have a problem with it I would ask that you contact me directly.  Don't worry that I would get upset or angry.  I am a sixty-one year old woman and feel quite sure a bit of concern or criticism will not send me off a cliff.  If you see something on here that endangers Betty in any way please feel free to send me an e-mail; ladycase2@aol.com and I will respond as soon as possible.


My purposes for this blog are many but one is a place where I can vent some of my frustration.  If you have not lived with someone with dementia for an extended period of time I would ask that you read some others blogs along the side of my wall, read some of the books that are available for caregivers, visit a few websites and try to get an idea what a caregiver goes through on a daily basis.  Try to imagine getting someone to change out of an outfit they have been wearing for two weeks when they are SURE they have worn it twice.  Try being the one who has to agree with some nonsense that you know is not true just to keep the person from arguing. Think of being the person that has to try to get someone to get out of bed to go to a doctor appointment when they decide they are not going.  There is nothing easy about this life I now live and although I would not have chosen it I am honored to do it.  I protect Betty's dignity all the time and work hard to make sure that she is as unaware as possible of the work and frustration that is involved in her day to day life.




As for how things are now that we are up north; 

• Pills are being taken on a regular schedule.
• Breakfast happens by 10:00 every morning.
• Lunch is served between 2:00 and 3:00.
• Dinner is on the table most days by 6:00.
• We play cards most days but that is becoming more and more difficult without help.
• Reading is more and more difficult and the "funnies" seem to be too confusing to enjoy.
• Crossword puzzle work is mostly looking and counting than actually solving but there is still some enjoyment in it.
• Still enjoys the music channel.
• Does listen to the business channel we are watching and comments.
• Still difficult to get clothes changed.  Wears over and over and will re-fold and put dirty back in drawer.
• Bed made three days out of seven. (Always done in past)
• Questions every other day which of her brothers and sisters are alive.

Let the card game begin!

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.

This verse is on the sidebar of my friend Delores' blog.  I need these words today as I am feeling quite fragile.  Amen!

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!"  

Just Beautiful!

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.

Another appointment and more of my brain needing to work to get Betty to it.  Today, toenail cutting.  Trust me if there were any other way I would jump on it but Betty's nails are so thick and long it is impossible.  So, before we head north it has to be done.


Bob and I thought it through and I am going to pick her up at 1:15, bring her back here and have her soak her feet and then it is off to the doctor at 2:10.  Everything depends on getting her up and out of her house dressed.  


I get a sick stomach just thinking about it but I am letting go and letting God today.  I am going to trust in Him to get Betty on our program without a lot of fussing.  


I will repeat that over and over until I believe it!!!!


Wonder if she will wear her new shoes today?




UPDATE;  Sure enough there were several weepy calls but Betty was ready when I picked her up, wearing her new shoes but no earrings... (naked!)  The appointment went well and we went to an early dinner.  Lots of anxiety.

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..

When there is heartache I would like to say that dementia is not fun to be around.  Betty has narrative she repeats over and over.  "How's your family Mary?  Do the kids like school?"  Over and over.  I get so close to just crying as I say, "They are fine Betty"  "They like school, Betty."  


With Ethan's death yesterday it is hard to answer that all is well.  I did tell her one time what was happening, but she cannot absorb that so her narrative stays the same.  God, help me to repeat y answers just as many times as we cannot get her onto a different subject.  Probably by that time, we will all be fine.






And, from my Facebook wall...  mostly to answer a question about God and suffering:


There are times when human suffering is so great you are left wondering, where is God in the midst of it? How does He allow it? Where is He? I will take just a small fraction of all suffering; my family's suffering at the loss of my grandson, Ethan Michael Gray. Where was God? God was in the miracle of Ethan's birth when we doubted months ago that the pregnancy was sustainable, God said, "Yes!" God was in the miracle that allowed Annie and Josh to get to know their beautiful son for four days. Did you know that every minute in a NICU equals an hour at least? Multiply all of those minutes and you will see that the beautiful blessing of meeting, touching, singing, whispered love and tears,3 so many tears was, in God time, nearly an eternity. Then there are the Facebook posted prayers from all over the country, the world. God was right there in the depth of caring from all of these wonderful people. Their prayers didn't go unanswered; Annie and Josh gathered so much comfort from them that they spoke often of how incredible it was to have such great friends. God is there in their grief knowing full well the pain in the loss of a son. We don't know God's full purpose for our lives. We do know that suffering, grief, disease, is as much a part of life as joy, good health, healing, miracles, and laughter. Everyone has their own understanding about death, God, resurrection and heaven. I wish you peace and comfort as I grieve, as you grieve, or as we look to God for our miracles. Today I am looking for ways to honor the memory of our little gift from God, Ethan. I am thanking God for my wonderful children who will be there to support their brother and his family. I am thanking God for all of my blessings. I am trusting in Him.

Romans 8:38-39 "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."

Ethan Michael Gray

5/19/2012 - 5/23/2012

My son Josh and his beautiful son, Ethan

My wonderful daughter-in-law Annie holding Ethan

I look into Annie's eyes and see the pain of her loss, the swollen eyes of a million tears, the joy of holding her precious son.   Many prayers have been said and I thank you for them all.  Now, with Ethan safely in the arms of Jesus, I ask that you hold Annie and Josh and Ethan's sister Caroline and big brothers, Jackson and Ryan in your thoughts and prayers.  Thank you very much.

Today is an eye appointment for Betty and fortunately the office had my number so I was able to give a heads up about Betty's cognitive issues. I think they appreciate that Betty is still among the living as she had not been for awhile and they were worried that maybe she was "gone" in one way or another.


We have some concern over seeing double.  At times when she is watching television she sees two balls during golf which is cheating....LOL!  She always mentions that it is funny that she is seeing two golf balls and I sometimes wonder whether it is because her eyes are just tired.  She has often told us that she was cross-eyed as a child and so I am wondering if when she gets weary the eyes might cross a bit.  Hopefully the eye exam will tell us.


This is also monumental because she no longer drives and her glasses were driving glasses.  Will she need new glasses that just cover the span from the couch to the television?  


Speaking of driving we were very fortunate because she gave that up so easily.  We just started driving her everywhere and she finally decided to just sell her car.  How wonderful..since according to Florida she could have driven another 4 years before renewal.  Arghhh!  


There is always the anxiety before going to appointments or out to dinner.  I call her after noon to "remind" her and I am sure there will be at least two calls about what to wear, should she shower, where are we going and possibly the ever possible excuse as to why she can't possibly go.  Hoping that today is a smooth trip.


We have just a few weeks before we leave and head for home.  Betty will be flying up with Bob's cousin and we will pick her up from their house.  My anxiety level is over the top with so much to do.  This is hard stuff and I can only hope I can do what needs to be done.  There are times when I wish I were still on pain killers for my chronic pain because I just can't use the techniques that get me through my days when my mind is filled with so much that needs to be done.  I am glad I stopped taking them, most days, but that does not mean I am not suffering.  It means that I have taken the suffering by the horns and I am doing what needs to be done.  Thank God for my TENS machine and silly games online that take my mind off it! 


Today.....the eye doctor.  
        Thank you so much for your prayers for my sweet grandson, Ethan.  Today he has been stable but the brain bleed is a concern.  God is so good and I rest in the knowledge that he is very much in control!

This is one of Ethan's older brothers, Ryan, with my middle sons fiancee, Melissa. I am so BLESSED!

Ethan today with his sweet eyes open.

I have not been able to post because writing about my new grandson, Ethan Michael, is causing so much anxiety it makes me feel ill.  Ethan was born on Saturday the 19th. at 1:02 P.M.  He weighs 3 lbs. 1 oz.  Saturday night he almost dies.  He rallied on Sunday and was doing ok today until this afternoon when it was discovered he has had a brain bleed.  His breathing is not good and his mom, my loving daughter-in-law Annie, called crying to tell me that she was just going to sit with her baby.  She cried and told me he is so beautiful.  I am so sorry that there is nothing I can do for them.  I am in Florida and they are in Boston.  I want to see him.  Touch him. Tell him I love him.  I want a miracle.  I cannot write here about anything because I just can't bear thinking.  I believe that the Lord is there in the NICU with little Ethan and He is watching over him.  Praying.  Continual prayer.

Dotty & Bob Alzheimer's Reading Room

Dotty Still With Us 9 AM, Some Enchanted Evening - Alzheimer's Reading Room

I think of Bob and Dotty and the journey they are on and remember that just last summer I was privileged to be there when my uncle Dan was on this final journey.  It is such an honor to be with them... and yet, as brave as we can be, the loss is tremendous. 
Many blessings, prayers and thoughts are sent to Bob and his mom, Dotty.

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!

Today is Mother's Day and it has never been an easy day for me.  I am not exactly sure why but it has always been a rather depressing day for me.  Maybe my feelings of shortcomings as a mom, maybe losing my mom ten years ago, the distance between my children and me or even trying to care for Bob's mom, whatever it is I feel a sense of depression.


Our plans today are the same as every Sunday.  Betty will be here and we will play cards and have dinner.  I do have to wash her hair today as I missed Thursday and also wash her bedding.  I don't mind any of that...it just has to be done and it is.


I am worried about my daughter-in-law and her baby to be.  I worry about my son who is a  minister and trying to take care of their other three children and be with Annie all at the same time.  I worry too much and need to trust the Lord.  


I am so very blessed in so many ways.  I have wonderful children, a good husband, good friends and a loving God. So, today I promise to not wallow in depression but will work to be Ruth to my Naomi.  It may be just for today but just for today is good enough!

Tom, John, Joe, Cheryl, Jim

Josh, Caroline, Jackson, Annie & Ryan

My son John on the left

My son Chris and his fiancee Melissa

Yes indeed... I am BLESSED!

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.  

The Dementia Experience

Quite a good article about what dementia patient is experiencing.

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.

Caregivers Can Stop Emotional Eating

What a great article by Carol Bradley Bursack about emotional eating as a caregiver.  Have I mentioned lately how I stand in the pantry, close the door and EAT?!  Every time there is any conflict I eat.  I can put a stop to this.. or at least take something healthy in there with me!!! 


Carol also wrote a book, Minding Our Elders.
Minding Our Elders - Available on Kindle @ Amazon

A few observations;
   
Betty has some small motor skill limitations that we have noticed.  Getting a card into an envelope is somewhat of a challenge and she was struggling to get a birthday card into its envelope.  You can notice some frustration when it happened but she finally managed it.
    
I first noticed it when she was putting a stamp on an envelope and also a return sticker.  She seemed a bit hesitant as though she wasn't exactly sure where to place them.


I have also noticed that  her handwriting has gotten lighter as though she is not pressing down with the pen.  Now that Bob takes care of her bills and checking she doesn't have that much need to write precisely; a signature, an address, a list.  She does still make these little notes that she leaves all over the place yet they are rather a jumble of ideas and numbers for relatives.  One day when I asked what one list meant she said she was trying to get her brain "right" and that she tests herself.


Betty has always been a very precise person and that was one of the reasons that she fought so hard and got so upset when she was making a mess of her checkbook.  The white out all over her figures and forgetting to write down a check number was really upsetting for her.


I have her calendars for the last few years and they tell her story more clearly than I could ever tell.  I really will try to scan them so that I can post them for comparison.  It is such a stark difference.  Her small neat handwriting so clear and precise; times of appointments, visiting relatives, golf outings, birth dates and sometimes even phone calls.  Even notes found around the house show an almost OCD like recording of every day life.  Pat called; 9:20 talked until 9:46.  Called Bob; 8:00 talked until 8:16 about work and what they had for dinner.  Her books, diaries, are filled with a precise narrative of times, activities and stories that may or may not be true.  (I say this now because it is clear that some of her stories are embellished.)


Her calendar now is a mess of white out and cross out.  I try to get her the erasable RED pens, red as she seems to see it best, but she cannot retain that they have an eraser.  I purchased a great calendar for Betty for Christmas and she seems to use it quite well by looking at her digital clock and tearing off the top sheet.   I added it to my Amazon widget at the bottom right hand column.

Dementia

A good explanation of Dementia.   Just click the word Dementia above.  

Alzheimer's Reading Room: Learning How to Use Alzheimer's World to Your Advantage

Alzheimer's Reading Room: Learning How to Use Alzheimer's World to Your Advantage

As always Bob DeMarco hits the nail on the head.  So many times I get a positive response from Betty when I approach the playing field with a positive attitude.  Often times less explanation is better!

Raymond  -   Brett Eldredge


I work down at Ashberry Hills
Minimum wage, but it pays the bills
Cleaning floors and leading hymns on Sunday

Katherine Davis, room 303
Sweetest soul you ever could meet
I bring her morning coffee everyday

Chorus:
She calls me Raymond
She thinks I'm her son
Tells me get washed up for supper
before your daddy gets home
She goes on about the weather
how she can't believe it's already 1943
She calls me Raymond, and that's all right by me

She talks about clothes on the line in the summer air
Christmas morning and Thanksgiving prayer
Stories of a family that I never had
Sometimes I find myself wishing I'd been there

Chorus:
When she calls me Raymond
She thinks I'm her son
Tells me get washed up for supper
before your daddy gets home
She goes on about the weather
how she can't believe it's already 1943
She calls me Raymond, and that's all right by me

There's a small white cross in Arlington
Reads Raymond Davis '71
Until she can see his face again
I'm gonna fill in the best I can

Chorus:
When she calls me Raymond
She thinks I'm her son
Tells me get washed up for supper
before your daddy gets home
She goes on about the weather
how she can't believe it's already 1943
She calls me Raymond, and that's all right by me
She calls me Raymond, and that's all right by me

Today is Sunday and the schedule includes having Betty here for cards and dinner. It is also the day when I try to gather some of her clothes to wash, which is never an easy task as Betty is sure that she has worn her clothes only once or twice even if it is more like seven times.  One of the most difficult tasks in talking to someone with dementia is the tone and phrase you use to get them to do something or not do something.   Arguments always ensue if there is the slightest bit of tone that may make Betty feel "less than capable" so we try very hard to use the terms that have had success.  The problem occurs when she gets defensive because then "THE SPIN" as we like to call it can leave the whole attempt spiraling out of control.  


We have built a semi-concrete schedule to get important things done, such as hair washing and showering.  We sneak in washing the sheets and clothes trying for the nonchalant grab.  I do the shopping in such a way as I arrive with a cloth bag and put things away as fast as possible.  The pills have evolved into me filling the pill box a few days at a time and keeping all of them here at my house with her vitamins.


This schedule works for us for now but we realize we need to take a further step and get someone to come into Betty's home at least once a day to help her with dinner and pill taking.  Why we have so much difficulty moving to this is beyond me.  We talk the talk but it ends there.  We talk about going to a caregiver support group but again, all talk.  There is this exhaustion that takes over so that when you are not with Betty you want to veg on the couch and not think, move, or even do something that would be beneficial.


I am hoping that today will be a good day.  I'll try to do my part.

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.