Another Holiday and more tears...

        Thanksgiving came and went, Christmas has come and gone.
        No visit to Mom. Phone calls from the nursing home, the flu has made it's rounds so they had to ask me if Mom could receive a flu shot. I said yes. They asked if we wanted to attend the Holiday buffet. I said no. 
        The florist who is down the street from Baptist was sweet, as always, when I ordered Mom her flowers. A Christmas arrangement with one yellow rose, the card, signed as always, " You are loved!" Did I call the home to see if she liked the flowers? No. I have come to the place deep inside that let's me know for a few moments she will enjoy the flowers but then as quickly as that occurs she will ask who they are for.
          It has been 2 years now since any of the family has seen Mom. There was a time when she and Daddy lived in AZ. that we did not see them for as many as 8 years. I did speak to or email Daddy every other day though and spoke briefly with Mom when I called.
         I called my oldest son, Joe, we spoke about his grandma and the situation. I cried, he simply said, "Mom, It's ok you are doing all that can be done now." I just pray I never get to place that my kids have to deal with this kind of situation.
         For now we shall see what 2013 brings Mom turns 88 in April. I wonder if she will still be here or will she at last be with the Lord and my dear Daddy. I can only pray and have Faith that I whatever happens I will be strong in my God.
        Happy New Year all of you in Blogland.
        
        

The visit

    I took a deep breathe and headed to Baptist .  My friend Deb and her 8 year daughter Stephanie came with me, she had picked up some yellow flowers at Aldie's for me for Mom and we headed for Kmart, for the list of needed items.
       I like going to the same clerk and Geri who is about 70 is my choice at KMart. We spoke briefly about her health and the Thanksgiving dinner she would be having. She then asked me if I was going to be with my Mom. What did I do? Well, cry of course. I pulled myself together enough to tell her how Mom's condition had become worse and it was suggested that I not see her.  She was kind and told me I was a good daughter to  take the time to buy what she needed.
   We arrived at the nursing home while the 3 of us walked across the parking lot we were "flagged" down by  Anika, Mom's social worker. I handed her the flowers and the bag of clothes so they could be tagged. She said, " You aren't going to see your Mom, are you?" Again I cried.  I said  no but Deb wanted to. Anika seemed relieved.
      While I went to accounts payable Deb and Steph went to the second floor to visit. Visiting Janice and Rose in that department is always a good thing. After almost 3 years we have become friends and since they work there they have a different perspective which helps me to feel less horrible.
        I sat in the outside lobby for about 15 minutes. When Deb and Steph returned Deb gave me a glowing report . Mom looked well her hair is all white and to her waist, ( the staff would love to cut it because it is hard for them to wash it) but Mom wants it long! My Mother even remembered when they went shopping in 2009 for Christmas.
        On the way to the car Deb asked me 6 times if I wanted to go back and see her. I explained each time that Mom is on some heavy meds to keep her calm and the last thing the staff needs is for me to  upset her. AND I do NOT need to be attacked.
       I love Deb and I am glad it was a good visit for the 3 of them BUT she has a totally different relationship with her mother.
   Of course after dropping them off I cried all the way home.
   I hate Alzheimer's. I hate what it has done to my Mother and I hate what it has done to me. She will be 88 in April I wonder where she will be then.
     She can no loner walk, the uses a lift to get her up and down, she is in diapers, she is medicated to keep her calm. Please Lord take her home to be with Daddy! PLEASE!
   

A call...

        Sometimes caller ID is not my favorite phone feature.
       Thursday  IT rang, it said Baptist Health, it was really early, I held my breathe and said, " HI."  IT was Cindy, she began the conversation with, " the aide who baths Mom noticed several bruises on Mom's person, they were on her arms, buttocks, ankles. Then Cindy added, " Your Mom can no longer walk or get in and out or up and down with out help by a lift."
        Cindy is fairly sure since each time this equipment is used ( which is several times a day) Mom fights screams and generally is not pleasant that the bruises are brought on by her struggle. Made sense to me.  I hung up and told Brad and Heather, my sweet Heather cried. I left the room and cried too.
         Late last night (Friday the 9th) it rang again, again the caller ID said Baptist Health. I held my breathe. This time it was a new voice. She was reporting that Mom had become so belligerent that the Psychiatrist just had written a script for a new drug to hopefully calm her down.
          It seems my mother is slipping farther away each day. With each phone call I am torn about braving it and going to see her.
          I am afraid to see her, I am afraid of her anger, I am afraid that when I see her she will.... I am JUST AFRAID!
     

my birthday

         Halloween came and I had my 62nd birthday. All in all it was a lovely day; the kids, and friends all called, sent cards, silly presents,  Facebooked,  dropped by etc. Half way through the day however I curled up in a ball and sobbed in my husbands arms. Why? Well you can guess. I missed my parents I wondered if my mother remembered my birthday. I was born on her mother's birthday,  did she remember either one?
             Just as I was about to go to sleep my dear friend's 80 year old mother Eileen called, she sang happy birthday to me and I cried!!!!
              Is it worse when your parent is gone? Will I STILL CRY FOR WHAT MY MOM MISSES WHEN SHE IS WITH THE LORD?
            Then out of the blue in the mail on Saturday an envelope arrived from a new collection agency addressed to my mother. This company had purchased her debt from HSBC of 9 grand and wanted to be paid ASAP!   Now the phone calls have started again. I have explained until I am blue in the face that there is no money, that Daddy has been deceased for over 3 years and that my mother lives in a world that no one can get to anymore. I have sent copies of my POA and other  papers, I have gotten angry, I have cried. No matter who buys the contract they are simply out their $9 grand. Frankly at this point I really have nothing more I can do and no longer care.
         REMEMBER NEVER CALL your parent's creditors when there is a balance that can not be paid after they die or develop Alzheimer's. WHY? Because the creditors will never leave you alone.
                                                          Sigh!
         I hope you in blogland have found ways to cope with the "side bars" you know all the things that you would not think would come up once your loved one is no longer working with a full deck. This horrid disease plays havoc with our loved one who has the disease as well as those of us who do our best to take care of the many events that happen.
        Deep breathe and say a prayer. God Bless you all!!!!

PS

I really would like to know how you in blogland are coping especially since I feel very much like I am on the old wooden roller coster ride! If you do not want to make that public my email address is butrflyjewels@gmail.com. Thanks so much and God Bless, Jewels

thinking

Today makes 78 days until Christmas, 32 months Mom has been in the nursing home and 37 months since Daddy died. The guilt of not seeing Mom in almost 2 years comes and goes .For me I find the lack of contact with my Mother has given me a mixed bag of emotions.  IT is rougher as the Holidays grow closer. Then I stop and remind myself this has become a waiting game. Waiting for her body to not wake up because her brain, from what I am told, has all but quieted to a low hum. Sounds cold and heartless, I am sure.

My nephew-in-law's father who developed Alzheimer's just 2 1/2 years ago passed away 3 months ago. Ryan and his family were not prepared for the nasty affects of Alzheimer's. He became like my Mom mean spirited compared to others who are funny, and still sweet. Ryan has a big Irish Catholic family and because of that they all took turns and kept his Dad at home even to the bitter end. I think for some being able to do that lessens the guilt of the emotions that this horrid disease brings out in the patient and the caregiver.

I have so many family and close friends whose parents have recently left this world in the last 3 years. I have not had the courage to ask them if there is peace in the passing or more guilt!

May I ask you in blogland? Where are you all when it comes to peace of mind or endless guilt? Or somewhere in between???

Such a gift....

   With my Mother being in a different "World" full time that leaves a big hole in my heart and life. As time moves forward the bad times, the mean words have been replaced with a few really sweet memories.
     God knows our hearts and fills our needs in ways that are a surprise. My friend Deb's mother has been not only a Grandma to Heather but a mother to me.
      Recently my Pastors mother-in-law has once again come out from AZ.  I can't tell you what there is about this lovely lady named, Betty; but, when I am around her  all I want to do is cry. Not sad tears but tears of deep love. She treats me as her daughter in the best of ways. We went to 5 Guys for lunch yesterday and spent 2 hours just talking. No topic was off limits and I felt not only feed physically but my soul and heart felt filled too.
     She returns to her home state Saturday I will miss her terribly! She is just a phone call, Facebook or snail mail away and there is comfort in knowing that she  truly loves me without judgement.
     She is NOT my mother. God has brought peace to my soul and sent fit to send 2 loving women into my physical life that help heal the deep hole left by Mother and her Alzheimer's.
      I hope you in Blogland have found peace through your faith whatever that may be and from someone to physically give you hugs and love to fill the hole this HORRID disease leaves.

a book

The women on my mother's side have always been writers. My great grandmother Ella wrote for a little woman's magazine in the early 1900's. My mother wrote some shorts that were published in her local papers. My youngest, 11  1/2 year old,  Heather is already working on her first book. My sweet Rachel,  had her Master Thesis published and is working on her first book. 

As for me I have written all  my life and have been published in some local magazines. This blog even earned an award, "http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs." 

 That being said, I am, with the help and proof reading by Rachel  putting this blog into book form. 

 I will wait until Mom goes to the Lord to actually publish the contents of this blog. This path is not over yet and I appreciate the many times you each have stopped your busy day to drop by and read my ramblings.  There will come a time when our  loved ones will no longer here. In the mean time I will continue to use this forum to gross, complain and of course cry.

Thank you so much I hope your path has moments of peace and quiet.

PS---please listen

I found it and I should have know it was Nat"King" Cole ("Youtube") Mom loved him most of all.  I had forgotten the words, 2 of the lines," Since you went away the days grow long," "But I miss you most of all when Autumn leaves start to fall!" I do miss her, there were rough times between us long before the Alzheimer's ate her brain and made her mean. Please know I do love her and miss the good times so much......I really hate Alzheimer's...it is beyond HORRID!!!

Autumn in NY

I know it is only the 9th but here in upstate the leaves on my oak tree are  already turning red. Does anyone remember the song "Autumn in New York"?
We came from Southern California to upstate NY in Jan. 1980. My Daddy had gotten transferred, and since my in-laws at the time lived in Ma. David and I and our 2 boys came East with them.
That was almost 33 years ago.
This may be hard to follow but for me there is always a thread of how I reached different points in my crazy world.
The boys loved the snow, Joe was 10 Stewart 2.  I had never driven in the white stuff and  was a little nervous. It took a while to get comfy but by the next Winter we were settled in a little town called Argyle. I got stuck in the snow several times but there was always a farmer who pulled me out.
My parents lived 45 minutes South in Albany and my-in-laws 3 1/2 hours South East down by the Cape.
The first Autumn was breathtaking that's when my mother got out her old records and found Johnny Mathias or maybe It was Frank Sinatra singing "Autumn leaves."
Yesterday I sat out in my front yard with Brad and Heather looking at the sky and looked at the beautiful leaves. And reflected. Heather is now in middle school the others are all on their own, Daddy is with the Lord .
I wish Mommy was sitting outside with me drinking her "Tab" talking about years gone by and sharing what each of her grandchildren and great grand children were doing. She loved Fall mostly because it meant Christmas was coming closer. That was her favorite time of year!
I think I'l go to "You Tube" and see if I can find someone singing "Autumn leaves" and cry  some more. I so hate Alzheimer's!

Just wondering????

    I was re-reading some of my posts and then decided to go to that place in BLOG LAND where you can see how many people read what you write and where they all live.  It is interesting to know how many others can understand what this is like.
     My dear friend; Kris has a 96 yer old Dad who also has Alzheimer's only "Babe" his real name is Homer is so funny. He  talks about  how he won WWII as a pilot, or how he paid for this doctor or that doctor to go through medical school. Or that he designed that new building etc etc....you get the idea!
      Recently he told Kris that he had been going to Chicago on Southwest airlines and told the stewardess that they had over shot the airport. He then went into the cockpit and found the pilots had been shot and killed. Babe told Kris he sat down  and landed the plane safely. But before he could do that someone had to come and fix the bullet  holes in the window. Some one came in and fixed them  Babe commented on the neat way they spread some "goo" into the holes and they instantly mended themselves. The repair person said to Babe, "well, Sir you shouldn't be impressed you invented the product." The story was better hearing it from Kris first hand.
        In Babe's world he is the hero, the fixer, the all knowing, he on occasion remembers his 3 adult children. Kris is the middle child, she is the one who takes care of all of her father's needs. Her older brother and younger sister WILL NOT help in any way. Sadly that is not uncommon either.
     The point is some of you out there in Blog land do have family members with this horrid disease that are funny, smile and may even if for only a minute remember who you are to them.
     I only have Kris to hear that side of Alzheimer's.
    She and I have been best friends for almost 50 years. Our parents (her Mom is gone as is my Daddy)  have know each other the same length of time.  Who would have ever thought instead of playing cards together they would be in nursing homes on opposite sides of the country with the same disease and behaving like night and day.
      My thoughts are this, truly this disease is something to be taken one day at a time,  it will end. Whether there is any inner peace when the end comes I'll tell when I know. For now Mom is alive with most of her "lights" out and her body shutting down a little more each day.
     I shutter when the phone rings really late or very early. I can only pray when it is her time it will be gentle and peaceful.... and God forgive... sooner than later...

Poor Joe, 2 grandma's down...

    My  Joe is the oldest of all the grandchildren at 43.
   David, my x-husband, has a 91 year old Mom, Betty, she just left Florida to live out the rest of her time with family here in the Northeast. She has recently developed ovarian and uterine cancer and to everyone's shock is having a complete hysterectomy on Tues. Will she even survive the surgery? Who knows?
        David wants all the kids to come to Ma. today to see his mother just in case she does not make it through surgery.  I certainly understand that BUT  Rachel and I will be leaving  to go for 6 days to Canada. Stewart lives in Buffalo NY  is going to law school.  Not only does he have no time; he and Carolyn are on a really tight budget and can't afford another trip out here right now.
          But Joe is here and has time,  he will be expected to go. I need Joe to be "on call" for my mother. 
        I know my son, he is responsible and loves these old women and David and I.  He would tell you he is not thrilled to be put in this position. BUT he will do what needs to be done.
          Joe was close to both his now deceased Grandfather's but not so with either Grandma.
          Here we have one 91 year old lady who from the neck up is "right on" and one 87 year old lady who from the neck down "is in ok shape."
          Between the Alzheimer's and the Cancer I wonder who will leave to go the Lord and a deceased husband first.?
          My point of all this is;  as horrible as Alzheimer's is losing possibly losing someone that has reached 91 to Cancer is just as HORRID.
       We pray that Betty lives through the surgery and reaches another birthday. As for Beverly each day is a struggle for me and the kids. Having a body that works okay but no mind is so difficult.
       Once again I turn this over to God.  I pray what ever HE does with these two Grandma's we the surviving family know it is HIS will and not ours.
        May you each find comfort in God and your loved ones...this is not a simple nor short path....

Does She remember????

    This time 3 years ago I was flying to Az. I had spoken to Daddy at the usual 5 am NY time we spoke for about 15 minutes. He told me he loved me and that he was tired.  Just before we said our goodbyes he once again asked me to promise to take care of Mom when he was gone. 19 hours later my mother called screaming into the phone that Daddy was dead. I had reservation to fly out August 17th. I called Southwest told them what happened and they changed my ticket immediately. I was at the airport  and on my way less than 2 hours after Mom called.
     This morning is the 3 year anniversary of my Daddy's passing. I sat at this computer and cried. Why him, why, my best friend, why the most honorable man in the world why, why, why???
       Then I wondered will Mom know what today is; will she review her life with this wonderful man who took such good care of us? And after I left home devoted himself 150 % to this woman who  Daddy loved her even though she was such high maintenance?
         I know the answer.  She no longer knows what day, what week  or what year. She doesn't remember me. So does she remember the "love of her life?" Most likely not... just another reason to hate Alzheimer's.
         But Daddy I remember you and I will honor those memories always. And even though I haven't seen Mom in a long time I am taking care of her and it hurts my heart to know she will never know that even after all the bad times; I do love her. After all I had you as an example. You came into our lives when I was 9 and showed me from the start that love has nothing to do with genes but with your heart. Thank you Daddy, I will always love you!

Hmmm another holiday...

This day in 1968 I married David. We had a big Catholic wedding with 5 bridesmaids, ring barer, flower girl, matron of honor best man and 350 guests. The marriage produced 3 wonderful children all grown all with their own lives. The marriage to David lasted 30 years. Rachel and I were on our own for 5 years , she was 15 when we split up.
 Then I married the love of my life Brad and adopted his daughter Heather who was barely 2. David is happy with his present wife and after years of not speaking I actually invited him and his wife to our daughter Rachel's 30 birthday party I am having on the 28th of this month.
WHAT does this have to do with Alzheimer's. It is a day that reminds me of how much I miss the good times. The family bar-b-ques, all the Holidays,  birthday parties,  plays and baseball games the kids were in, my parents came when they could.
Heather is in the summer production of "the Wiz" she is a Winkie and a Poppy.  Certainly not staring rolls but she is excited Daddy and MOm would have loved to see her onstatge. Rachel and her older brother Joe are racing with the their Dad in the "firecracker run" here in Saratoga NY. Then there is the family bbq and after a trip to see "Brave"in 3D.
There was a time when my parents would have moved mountains to attend all these events.
Yes, Mom and I had lots of issues; but the family gatherings; that is is where there was love and laughs and I miss those time.
I watched the last part of "THE NOTEBOOK" last night, I so wish that was our ending.
I hope and pray for all of us who live in the world  with someone we love who has Alzheimer's that today for awhile we can hold on to the good times and the happy memories.  Just maybe for a short time forget that Alzheimer's is Horrid.

not much to say...

But...2 more of our friends have buried a parent in the last week. The sad part of being 60 something is that the parents of our piers are all in the late  80's and they die.  Even though it was "just" 2 deaths I purchased another 3 Sympathy cards because it seems that almost every other week or so someone passes. As for my Mom she is still "hanging in there."

another passing

I have a brother who is 8 years older than myself. My mother,  had him at 17  barely 7 months along. In 1942 when a infant was under 3 lbs there was little hope. Even though Mom was married somehow my  grandparents decided they should raise him, and they did. I did not meet him until he was 21.
HE was not all together "in his right mind" and he caused lots of trouble. He did get married it lasted long enough for him to father two daughters.
A few days ago while on facebook I noticed people saying things to my niece like, " so sorry for your loss", "I will keep you in our prayers.." I went back through the "wall" but could not figure out what  had happened. I emailed Diane Sue and found out the her sister, my 41 year old niece, wife and mother of 5 had been killed Wednesday the 13th by a drunk driver.
I immediately wanted to call Daddy and Mom and tell them. I even had the phone in my hand for a brief second.
Cindy is with the Lord,  she has seen Daddy,  I believe.  I can't tell Mom, she most likely would not know who Cindy even was. My heart once again aches there are so many things that Alzheimer's steals. Even sharing tragedy, is not possible..... My heart has no more tears right now...Night all. God Bless.

More nightgowns

      It seems my main job is to pay her bills and  to purchase clothes for my Mom. The call from the nursing home came last week. "Hi Jewels, the nurses on your Mother's floor said she needs some new nightgowns." I have no problem doing that but where do they go? I wonder if it is that the commercial washing machines "eats"  the fabric after awhile. I have found Lands End seems to have the nicest mid-calf heavier fabric short sleeve and sleeveless collection with nice solids and prints to choose from, for modesty sake.
      My mother  always wore lovely matching undies but no longer wears a bra and sadly is in diapers. Non shear gowns are a must.  I remember when I was a teenager going into my Mom's closet she must have had at least a dozen, if not more, beautiful lace gowns and robes of all colors  and little slippers with heals to match.
      She loved pretty clothes, she was so pretty.  Until she was in her mid 30's she had auburn hair to her waist which she wore in a pony tail.  Daddy and Mommy went to Mexico to the dog-races and some man offered Mom  a thousand dollars for her pony tail. She laughed and said, No!" A few months later her Mother told her she was to old to wear a pony tail and she had her her cut off. That was long before "locks of love" so she was minus her beautiful hair. She should have sold it to the man at least she would have had the $1000. 
        I stopped at the store before going to the nursing home. I added to the bag with the 3 gowns, 3 magazines, a Hershey almond bar, a sleeve of Oreo double stuff cookies  and a coke. All her favorite things.
        Once again I was going to brave the trip to the second floor. BUT I handed everything to her Social worker instead and left. My friend Sami waited in my car. Her mother passed away a few years ago. Her Mom also had Alzheimer's  so she understands the path so many of us take. By time her Mother passed away she also had no clue who Sami or her siblings were. She understood my tears on the way home.
       That is what this blog is about letting everyone in Blogland know it is okay to be angry, and sad. We all cry for what is happening now and what  we thought it was "supposed to be"  like and deep inside we want it to be over.
       Thanks for not judging. I hope on some small level my words (typos and all)  give some comfort. God Bless, Jewels
     

Their loss...

Over the last several days 4 dears friends have had parents pass away. Two very suddenly with no history of major illness. Two whose parents had Alzheimer's, I have shared a few conversations with them about this Horrid disease. The truth of the matter is for them they will miss the fact that their Dads have left this world.They will hurt for what these last years were missing.There will be guilt for the relief of no longer having to deal with the Alzheimer's. I envy the latter...Forgive me God I want her to go home to you and my Dad! I want so much to only think of the good times. The rough times are not the first thing I remember any more. The Lord, time and distance have eased the pain and hurt. I hope and pray for my friends and all of us that with the passing of loved ones each of us will find comfort and peace.

Rachel earns her Master's Degree

My Daddy dropped out of high school to join the Navy in WWII.I didn't know that until I was a teenager. He served our country for 25 years he retired as a Master Chief (radioman). He went to work for an upcoming computer company called Control Data in the beginning they were IBM's main competition. HE wrote and designed software.After several years there they wanted to promote him, that is when we all found out Daddy was a high school dropout. He very quietly went to night school got his GED and went to college, he got the promotion. Education was so important to Daddy. While I was watching my sweet daughter receive her degree I thought Daddy would be so very proud of her.As Horrid as Alzheimer's is the death of a beloved parent is just as bad. Even though my Mom has no clue what goes on I want to believe that Daddy looked down from Heaven this morning and watched his sweet,smart and beautiful granddaughter get her Master's Degree in Cultural Anthropology. Tuesday (15th) I sat at my doctor's office waiting for a test to be taken. A lovely older woman was talking away to Brad and I. After several minutes I had to ask her (a very tacky question) how old she was. She smiled a beautiful smile and said with great energy, " I am 83 years young!" You in blogland know what comes next...That should be my mother, my plan was so different than our reality. As I am sure for each of you,your plan was to have "happily ever after"...but alas that is not her (our) destiny... My Mother always loved a hot bubble bath when she got home from her shift at the OR. I would run her tub while she would pour herself a cold coke, grab a magazine and then slide into the tub. Sometimes if she worked a double shift half way through her bath she would yell for me. The bubbles covered all but her face and she would ask me about my day, I didn't not appreciate that time until the other day.Once again the phone rang,Cindy the day charge nurse called. Mom was found sitting in a bathtub naked, no water,no bubbles just sitting there looking around.Another thing stolen by the Alzheimer's! Deep sigh of sadness. Good night all, and God Bless.

more flowers

Just another reason for tears. I ordered flowers wrapped and tied with yellow ribbons. I thought all the way to the nursing home I would find the courage to hand them to Mom, myself. I didn't! I tried instead I handed them to the receptionist wished her a Happy Mother's Day and left. I hope you in blogland have better luck staying in touch than I do. Some how writing checks paying her bills, purchasing everything they say she needs, sending flowers frequently just doesn't seem enough. Forgive me for whining right at the moment I am feeling sorry for myself....and my Mother. Good night all, Happy mother's Day and God Bless!

confused

I just spent 30 minutes writing a response to my last replies but I have no clue where it went sigh...I 'll try again later time to take Heather to school

What I miss...

I think for all of us the way things used to be; is on more occasions than not,is painful. After time the bad things seems unimportant and the happy times come to the for front. Mostly I miss my Daddy's knowledge his life experiences made him so wise. Our Rachel is getting her Masters Degree on the 19th, I am so proud of her. She is also getting a divorce after 18 months of marriage. Our youngest is moving up to middle school on June 20th. These 3 events are just a few of the things that are happening with our 5 kids and their families. I so want to share with my parents... I look up on the shelf in my studio and talk to Daddy's ashes and his picture. I try to hear what he would tell me to say about the divorce. When Mom was "here" mentally and physically she and I would go out to lunch then we would shop for the perfect gifts for her granddaughters. I looked for Mother's day cards for my daughter-in-laws, some good friends and yes one for my Mother from Heather. I read several that in the past I would have sent to Mom. I cried. The flowers will be sent again. Again signed,"You are loved!" Oh Lord make my heart stop hurting, please....How many tears are there???

Last Friday I ordered flowers for Mom, she was 87 on the 22nd. The little flower shop I use is down the street from her nursing home. The arrangements they do are not only very pretty but affordable. I no longer sign our names to the card. I simply say, "You are loved." The nurses have told me she thinks they are from Daddy, that is fine with me. I no longer ask if the kids want to contribute,it is hard for them too. A good friend of mine has her mother living with her. Her Mom is about to turn 80 and has lived with my friend for 12 years. Ilene has some health issues but her mind is as sharp as a tack! MY friend, Deb,and her Mom fight all the time. When I stopped in Ilene and I spoke for a long time among the many topics. At one point Ilene told me how pretty she thought her daughter is and how much she appreciates all she does for her. I left after awhile and true to form cried all the way to my house. What I ( or any of us) would give to: A. have a conversation that made since, B. have loving kind words come out of our parents mouth, C. to know that the next time we visited they would remember what was said on the past visit. But alas that is no longer the case.

cindy said...

The good news about nurses is they are honest and sometimes painfully so. Cindy Mom's day charge nurse called to tell me Mom had once again fall and had a bruise so big by so big. At least this time she was not naked. She is okay.
I foolishly asked about the 3 rd pair of shoes. Cindy without skipping a beat said, " I think if we don't tell her you got them for her she might wear them. " Immediately Cindy was quiet then apologized. The more she said the worse it sounded finally I let her know it was okay and I would be fine. Of course that is only partially true I cried.
I feel like a broken record which is why I write here and not on facebook or call my boys. Since Rachel is living with us for a while she hears all about her grandma she sees me cry. I told her today all I ever wanted from Beverly was approval and at 61 that is still what I want .
LET'S FACE FACTS SHE HAS ADVANCED ALZHEIMER"S AND THAT IS JUST NOT GOING TO HAPPEN!

no way...

Just in case you are curious; the jogging shoes that were the right size and rather pretty are also a NO go. Mom let them know she would never were such ugly looking shoes and in fact slippers are all she is ever going to where. 6 hours of phone calls, 2 trips to the home and $260 later I am left just shaking my head.

3 pairs...

I get a phone call Mom needs regular walking shoes for her physical therapy when it begins. I spend 2 hours and finally found the shoes she wore as a nurse for years and ordered them in black...I spent an extra $25 to have them arrive the next day. (total $94.14) They arrive at the nursing home the day she starts therapy, oops no longer an 8b. I get a call she needs the same in a wider size , another $97.14 , again on my charge card, also overnight delivery. The second pair arrive at the nursing home , they don't fit.
The online company email mailed a Fedx label ,so I didn't have to pay shipping. I drive down, pick up the 2 pair and mail them to Fedx. I will not be refunded the $50 spent so far to ship them to the nursing home.
The PT person wants her to have a Jogging type shoe extra wide toe box. I again call the online store (shoes.com , very nice and helpful) after several hours a pair with an extra extra wide shoe box that will ship overnight. This time they understand the problem and do NOT charge me the $25 to ship overnight.
Now it is Monday the shoes arrived Friday I have not heard anything. I think shoes must be okay must fit....WRONG!
I just called to be told by the charge nurse my mother REFUSES to even try the shoes on. The charge nurse says she will once more attempt to get my mother to wear them. If not she will box them up and give them to Anneka and I will return them to the company.
I am DONE! I just want to scream! I truly hate the disease Alzheimer's is not just Horrid it wipes out those of us who just want to help. Things that should be simple are anything BUT...because she is so far gone I am not able to take her out and to be honest am not emotionally equipped to do so...so what can I do?? Cry.....and I am...pray, yep I do that to....cry some more...

annual review

Once a year or maybe twice I meet with the staff at Mom's nursing home. I am given information on all the basic stuff: her weight, teeth, bathroom habits, sleep,and eating too. They give each resident a question and answer test to see where they are in the reality, 15 questions Mom got 5. One was what is the year?Mom's response was, " In don't know and I don't care!
She crochets all the time and is mostly pleasant until sundown then she becomes nasty. Mom talks about Daddy...today would have been their 52 anniversary.
Once again they reassured me, I still cried....I hope you in blogland are doing well. God Bless.

awww

Hurting her ankle 2 weeks ago led to a trip to the ER showed it was sprained, which resulted in an ace bandage. That did not work the orthopedic doctor Mom in a walking cast in hopes to help her ankle heal.
The staff is trying to keep her down and in a wheel chair but since she can not retain why she is wearing a cast nor why she can not walk it is not easy.
I found a pair of shoes that other than being in black were the ones she wore while a nurse. I ordered them and had them sent to the nursing home. HOWEVER since they are now attempting to keep her from walking; the shoes will be placed in her closet until she heals.
I have her review next Tuesday...it is always rough.

Doesn't stop or change

Well somethings don't change. I am not sure if that is good or bad. The paperwork got done, some of it made no sense at all. Some of it is multiples of others stuff, I was told most of it is now going to be repeated every year.
Mother fell and severally sprained her ankle. She was taken to the local ER, it was ace wrapped and she was sent back to the nursing home. Sadly and yet not surprising, she couldn't remember why her ankle hurt, therefore Mom would not use her walker or crutch. Back she went to orthopedic doctor and they put a walking cast on her foot.
I cried.Why? My mother was an OR nurse for years and yet her mind is so far gone she could not remember why she had an ace bandage on her ankle. She does not know why she has a cast on either but at least her ankle will heal.
Then a few days latter I was called because her fragile skin "peeled" and she was bleeding. Her arm was covered with Neosporin and bandaged.
These are events that can't be helped. I am glad she is in a place that can take care of her because I would be lost as to want to do or how to handle these things. This is one of those times that I know in my heart I am taking good care of her by having her in this nursing home.
I do love you Mommy.

will it ever stop???

Paper work keeps coming: VA, DFAS, Medicaid, Medicare, TriCare, The Nursing Home! UGH!!!

"they"called

This picture was taken September of 2009. That is me (as a blond) behind Mommy and Heather. There were moments before the disease ate her brain up and we had Norman Rockwell moments.It didn't last long.
I suppose the part of being an optimist is just that no matter how bad/sad or mad I am about the whole Alzheimer's thing, deep inside I still have hope.
I was enjoying some quiet time reading Friday afternoon, the phone rang, caller ID is a wonderful thing. IT was the nursing home. I have 2 ways of feeling panic or hopeful. For a moment I thought just maybe she is having a great day and they want me to rush down and see her!
But alas; it was her case working giving me a shopping list of what my mother needs: 2 pairs of slippers no elastic size 8 1/2, 2 new nightgowns, some slacks and tops, new undies. My mother has always been a size 8-10 always weighed between 124-132 lbs. Now she is 168 lbs. Her once beautiful smile is missing most of her teeth; she refuses to see a dentist. And really at 87 with this disease being so advanced would she or does she even remember how to take care of her teeth.
Today is one of those days. I miss the dream, I miss the "Supposed to b's, " I miss my Mommy and Daddy, I miss the calls, the emails I miss my parents. I really really hate ALZHEIMER"S!
Do you think the tears ever stop??? Do you think your heart ever heals? Please, Lord God make my heart and soul quiet. It is the only prayer that ever helps.

the paperwork continues

PS I find it amazing how much paperwork is involved getting my mother her money. Also how true the saying, "the right hand doesn't know what the left has is doing" is the understatement with the VA and DFAS. I faxed and snail mailed more forms yesterday. I won't hold my breathe as to how long or if what I sent was even right. Social security is much easier than the military. OF course Mom has no clue about any of this her world is simple and safe. I do take comfort in knowing that she is wrapped in a world that has no concerns. I am attempting to be comforted knowing I am keeping my promise to take care of her that I made Daddy.Hope you in Blogland are having a good 2012 so far.God Bless.

VA and money

Before I ramble on let me tell all of you in blogland this little known fact. When your relative develops dementia /Alzheimer's it is not just about keeping them home or placing them elsewhere. IT is about MONEY TOO. In NY state Medicaid has a form to fill out that includes 24 different items that need to be presented upon the time of application for services. Those 24 items totalled 150 pages of paperwork.
Not everyone will accept your POA, family caregivers are NOT legally responsible for your loved ones debt. IF you foolishly do what I did which was to notify the creditors ( and sadly there were many) those creditors will call you and drive you crazy. I can't tell you the number of hours I have spent since Daddy died taking care of their finances.
That being said let me tell you about the VA pension which is different than Daddy's retirement pension from DFAS. The amount is $90 bucks a month and it originally came from the Railroad widows fund. It is supposed to be used for the extras of old age.
My mother's medicaid rep told me about this when I met with her for the first time 2 years ago.I applied for the pension in Feb of 2010, it has taken me 23 months to get this taken care of for Mom. At last and after who knows how many phone calls I met with the VA rep. at the nursing home yesterday. He had to meet with Mom's Social Worker then the 2 of them went to the floor she is on looked at her chart to make sure she was really there.
Rachel came with me just because I was nervous. We did not go see Mom we stayed in the lobby. When the rep. returned he had me sign a pile of papers. The most bizarre part of the whole thing is this; I have to open another bank account with me as her fiduciary agent. Why? You ask. I already have one as her POA that the other pensions go to. This is just plan stupid. The VA funds can NOT be commingled ( his term not mine) with DFAS and other funds.
There is retro funds which will help pay off her debts including her funeral expenses which I want to cover before she passes.
WE have had a few other friends whose parents have passed over the holidays . A few who have joined the ranks of caregivers whether tending their family member at home or placing them elsewhere. I am the one who passes all this not so great information to them. They are shocked because no matter how you cut it this is not what any of us wanted. All of this is just plain HORRID!