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.