Who Ever Is There Decides...

Paranoia or "Who's Watching Me?"

2009-07-15T11:32:00.002-04:00

I corresponded with a woman who recently ordered a book and was reminded that I have not blogged about a topic about which- although my dear Pop didn't have it- I am intimately aquainted.
Virginia and I often remarked about how lucky we were for Pop to be one of those cheerful types- in his worst phases of Alzheimer's he smiled at us vacantly instead of snarling at us vacantly.
Unlike Gramma:
Gramma (his mother) also had Alzheimer's, but in those days the scientific name was "crazy as a loon". But her disease had a scary sidekick: Paranoia.
She covered her paintings with newspaper and when I inquired she explained "Honey, people come in and take my pretty things- so I hide my paintings so they won't know how pretty they are. See this tablecloth? (producing one that was probably more than 100 years old) People came in and took my lovely white tablecloth and left me with this old yellow thing." Even at the tender age of 9 I remember thinking "I think Gramma's 'crazy as a loon' disease is acting up today."
She hid food- we found moldy oranges under her Victorian loveseat, but the BEST story is this one:
My mom and my aunt were going to bake pies for Thanksgiving but could not find sugar. They sent Virginia and me to the neighborhood grocer (remember these? owners lived above the store- they were basically open 24/7) We returned to the house to a HORRIBLE odor. But my aunt and mom were almost collapsed on the floor in laughter. Guess where Gramma had hidden the sugar? She hid it in her oven converted to gas from it's one-time wood-burning status. So when it was preheating, the paper caught fire, dumping 5 lbs of sugar which was rapidly turning to foul smelling burned sugar, but the absurdity had thankfully given my mom and aunt a reason to laugh while cleaning the chaos- it became a Gramma "crazy as a loon" story.
When I interact with caretakers, some of the most heart-breaking stories I hear are how their loved one is accusing them of stealing, or- the most prevalent one!- "my daughter never visits me!" (the most poignant one came from my cousin in law who is the sweetest person on this Earth- she visited and cared for her mother in law up to 5 times per day- and overheard a phone conversation where it was said "oh no- I haven't seen her in weeks")
Sally's advice? See if you can get your sense of humor in gear- there is a book "You Are Not The Target" that helped me in my 20s realize that most human behavior was just simply not about me. But mostly, if your loved one is in a home, go to the support group meetings- seek out other paranoia victims. It is possibly the cruelest symptom out there. See if their doc knows about it- they may have some meds. Then get a cheerful CD like "Rockin to the Oldies" and play it all the way home after a visit. And look for advice from those who are also going through this one! I am a fortunate ignoramous for the most part.

ElderCareRN

2009-07-04T10:34:00.002-04:00

http://twitter.com/ElderCareRN

I found this woman on Twitter (I should say she found me). Anyway, she has GREAT resources, links and advice- http://twitter.com/ElderCareRN

Something she said today is to avoid taking elders to ERs because there is little geriatric rotation that goes on with the docs. She actually said she avoids ERs herself in July! Good advice.

Hope you count your blessings on this 4th- What a country! Those of us who are emersed in the healthcare industry know the whole topic is filled with opinions, heartbreak, frustration and questions. But on this day it strikes me how fortunate we are that we can have all of our differing views on what to do- we can voice them- we can debate them openly- we can work to elect those we approve of- it ain't perfect- but my mom used to say that democracy is like sex because when it's good it's real good and when it's bad it's still pretty good. What a country. Happy Indepence Day.

Shower Rather Than Sprinklers

2009-06-24T11:48:00.002-04:00

One of my favorite stories about my dad actually took place before I was born. My sister was about 3 years old. My dad was going to college at University of California at Davis- so my mom worked during the day and he took care of Virginia and studied and tried to arrange his classes for the evenings. They lived in student housing with other young families.
So the story goes that one hot California day the bigger kids in the apartments (ages about 6 to 10) were playing in the sprinklers. Virginia wanted to play too. But my dad knew that she could get hurt- she was just too little for that activity in that crowd. But she didn't understand and became really unhappy. So he used his ingenuity and came up with an idea. He and Virginia put on their bathing suits and got in the shower- he splashed her and she splashed him and they had a fine time. She was one happy little girl because she really was able to play in the sprinklers with her favorite person- her daddy! He kept her safe but let her do something the bigger kids were doing.
When we have caregiver decisions to make, I think that is our most poignant struggle. How do we keep the loved one safe and yet give them the experiences they are seeking? It is a constant challenge to balance what is "good for them" with "what they want". I was in a caregiver support group today and was inspired at the challenges some of the attendees face. One had recently moved her father into skilled care- another has a mother-in-law in deep need, and a couple others have husbands with Alzheimer's still living at home. I know that when I was growing up, my parents got off balance at times- overprotecting or underprotecting!! I am positive I did the same as they aged- I sure forgave them- I think they forgave me.
The desire to play in the sprinklers was part of my sister's journey- my dad happened to make it a small part of his on that day. But I don't think he forgot it was HER journey.
Do your best and remember to allow your loved one to have their journey- it's what they would want to have happen. When my dad was in a state where he seemed to recognize no one, a nurse gently reminded me that he and God weren't done talking- when I questioned what was going on, I would remind myself that his conversations with God at that point were part of HIS journey- not mine. All the hovering in the world wasn't going to change his journey. I needed to keep him as safe as possible and help him when I could understand something he wanted- but had to keep knowing his journey belonged to him.

Who They Really Are:

2009-06-13T10:20:00.004-04:00

This comes from a friend I only recently caught up with after 20 years! His Facebook link is here: John F BaRoss Jr. He recently fell from a ladder and was badly injured enough to require several days of hospitalization (and we all know you have to be on death's door to get 1 overnight stay!) Here is what John said- what a wonderful comment on our loved one's :

During my recent hospitalization I had a 86 year old (WW2 vet) roommate and a neighbor who was 100. Then I came across this poem the other day:

What do you see nurses?
What do you see?
What are you thinking when you're looking at me?
A crabby old man, not very wise,
Uncertain of habit with faraway eyes?
Who dribbles his food and makes no reply.
When you say in a loud voice 'I do wish you'd try!'
Who seems not to notice the things that you do.
And forever is losing a sock or shoe?
Who, resisting or not lets you do as you will,
With bathing and feeding the long day to fill?
Is that what you're thinking?
Is that what you see?
Then open your eyes, nurse
you're not looking at me.
I'll tell you who I am as I sit here so still,
As I do at your bidding as I eat at your will
I'm a small child of Ten with a father and mother,
Brothers and sisters who love one another
A young boy of Sixteen with wings on his feet
Dreaming that soon now....a lover he'll meet.
A groom soon at Twenty, my heart gives a leap.
Remembering, the vows that I promised to keep.
At Twenty-Five, now I have young of my own.
Who need me to guide and a secure happy home.
A man of Thirty, my young now grown fast,
Bound to each other with ties that should last.
At Forty, my young sons have grown and are gone,
But my woman's beside me to see I don't mourn.
At Fifty, once more, babies play ' round my knee,
Again, we know children my loved one and me.
Dark days are upon me my wife is now dead.
I look at the future. I shudder with dread.
For my young are all rearing young of their own.
And I think of the years and the love that I've known.
I'm now an old man and nature is cruel.
Tis jest to make old age look like a fool.
The body, it crumbles grace and vigor, depart.
There is now a stone where I once had a heart.
But inside this old carcass a young guy still dwells,
And now and again my battered heart swells
I remember the joys.....I remember the pain
And I'm loving and living....life over again.
I think of the years. all too few.....gone too fast.
And accept the stark fact.....that nothing can last.
So open your eyes, people ....open and see..
Not a crabby old man. Look closer....see........ME!!

Waiting for Loved Ones

2009-06-10T13:44:00.002-04:00

When I was a little girl, we moved (for the trillionth time) to a new home. We had financial security for one of the only times I remember- but my dad was gone traveling ALL the time (if you wonder what is better; financial security or a dad home- know the latter is the big time winner) and Mother was going to college (something she was SOOO proud of). The college was only a few blocks away and she walked. We had a housekeeper/babysitter of whom I was very fond. But I was only 4 or 5 and my mother and I would watch "As The World Turns" together at noon and I understood none of it but I loved munching my bologna sandwich with her while we both concentrated on what was going to happen next!
I remember standing between the curtains in the kitchen and the window watching for her to walk up the drive. There was NOT a sense of JOY when I would see her. It was a sense of relief- of belonging and of security that would emerge. I think of that with our elders now.

I think we often put a lot of pressure on ourselves because we think our folks feel JOY from our visits (they might indeed). But the truth is that they desire mostly security. When they light up, it is not because we are there and are so much FUN but because our appearance was reassuring. Just like my mom rounded that corner each day and headed up my drive, I was given permission to find joy on my own. She was there- she was looking out for me- she would arrive the next day. Don't feel like you have to "provide" your parent with joy all the time. Just seeing you come up the drive and knowing you will do same in a week or two might be exacty what they need.

How parents always had our backs- now it's our turn

2009-05-19T13:42:00.003-04:00

Ok- I am going to say his whole name- Don Lucas- he is now a rather well-known and popular jewelry designer (Southwest). But at the time I dated him, he was a rather clunky, loud, entertaining boyfriend. My parents ADORED him. This story is more about my mom's honesty, love, and confidence in me than about him. He and his wife are still great friends of mine- they have a million kids (ok- only 5 or 6?) and now grandkids.

I have a hundred "Don Lucas" stories. But this is my favorite. I was babysitting (I did that a lot) for some people 2 doors down with 3 really great kids. I think I was 15. Don went out with his buddies so when he turned up at the house (kids were asleep, all was peaceful) drunk, I should not have been surprised. So I put on my "let's fix this" determination that later got me through college, careers, etc. I instructed him to the back of the house and set a kettle of water to boil. This was combined with instant coffee and I walked him in circles in that backyard, constantly aware that I was leaving the children "alone" (ok- phone was right there- I was no more than 5 feet away). Finally, I thought he was 'good' and he went to the front to catch his buddies as they drove by.

Parents of the kids got home- they were somewhat 'snooty'- immediately asked if I knew the kid "passed out on the lawn". I peered out and realized it was Don. I admitted it was my boyfriend. The mom (looked a lot like Jackie Kennedy with a snarl) said smugly"I am not going to tell your parents, but I think you should."

I slept little that night- the next morning, I sat with my mom and told her the whole story- Don had gotten drunk with his friends, showed up at the door of our neighbors and allowed me to walk him in circles in the backyard, etc. She looked at me very solemnly.

"What do you think I should do?" I asked, weighing the options of a break-up or big scene. She paused and said "I think you should not babysit for those people anymore."

And that is my best story for taking care of our elders- are we watching their backs? Are we tending our gut feelings about who is "on their side"? Are we ignoring what "looks right" and choosing what "is right"?

It is funny to think about that story. My parents put Don on "time-out" and we didn't date the rest of the summer as I recall. But they instinctively knew he was "good people" and they had confidence in me. It all circled back around- I crack up now thinking of my mom's response, but she was right in the "side" she was taking. I pray I took her and my Pop's side in the same way- in the right way.

Barb's Tale of her Daddy

2009-05-13T10:44:00.002-04:00

Hi Sally and all - I haven't read much on your site because I've been pretty busy. But I do have something to share.

As you mentioned, my Daddy passed away last week. I'd like to share some background to get to my point. I had put both of my parents on hospice care since the first of the year. It is a Godsend, particularly for a single caregiver. Anyway, Daddy fell one night at the assisted living place where he lived "down the hall" from Mother. (He had a head so hard that I hope that I've inherited that gene!) Anyway, the hospice nurse came in and said his hip appeared to be broken and he was in a lot of pain. I chose to stop hospice and have him admitted to the hospital. They operated on his hip the next day and also discovered he had fractured his neck, high up in a bad place. I elected no surgery for that. He went into a neck brace and spent the week in the hospital pulling out everything that was attached to his body, from catheters (ouch) to IV's to the neck brace. It was not good.

He obviously could not return to assisted living since they could not provide 24 hour nursing care and I couldn't afford it. Hospice (did I say they are wonderful?) found me a residential care facility owned and run by a former hospice nurse. They had a 24 hour caregiver, and the hospice people would be there daily with the nurse coming twice a week. We moved him into his own room on April 29th.There were only 5 people living there. Where have those places been??? Anyway, they quickly gave up on the neck brace because Daddy kept yanking it off and we were afraid he would do more harm by doing that. They kept him out of pain. We talked over the weekend and he was ok, wanting to see the rest of the house and really liking the folks there. He was having trouble swallowing, something of a problem we had dealt with off and on for a few months. His health deteriorated rapidly. The nurse called me on Tuesday, the 5th and said they were worried about him. On the 6th they said he couldn't get anything down. I went over, taking a milkshake to see if we could crush a pain pill in it. (Daddy and I drank a lot of milkshakes over the past year, always on our drives around to doctors, etc.) When I arrived, I saw he was out of it and wouldn't be able to take anything.

The hospice nurse came and the hospice chaplain came. We were with him for a little over an hour. I told him I'd take care of mother and to please let go. He opened his eyes and I think he knew I was there. And then he was gone.

All of that is just so I can tell you this: The hospice chaplain who sees Mother called to tell me he was sorry about Daddy. He said that by coincidence he had gone to visit the facility that day, and he was actually with my Mother when Daddy passed away. And my Mother, who doesn't talk much and is very quiet, said, "George is around here now." I think - hell, I KNOW - that Daddy was checking up on her one last time. They were married 66 years and that was his job.

Whew. - I love you all. Barbara

Barbara then Post Scripted this today:

I can also add one more thing that a caregiver of Mother's told me yesterday:

Mother is usually very quiet and unanimated. On Wednesday (the day my Daddy died), mother was smiling and seeming to have a conversation with him. She told him it was ok to leave to the light, and she was ok. This aide did not know about Daddy but was really shocked when she found out this took place while he was leaving this earth.

No one at mother's residence has told her about his passing, but I was there yesterday and she seems to be grieving somewhat. It's hard to put my finger on it, but all of her caregivers mentioned it, too. So, she knows, even though she doesn't "really" know. And I don't think she will be far behind.

World War 2

2009-05-13T10:16:00.002-04:00

Hi everyone
I shared this recently with several people but it always strikes me when our loved ones move on after we have worried and fretted over them so I will share it with you:
When I was in high school and college, I was fascinated with WW2- unlike my sister, I was not a rigorous history student. But Pop fought in WW2 in the Pacific- got a Purple Heart and he mostly spoke reverently about the goals and the pride. In college, I went with friends to Europe and in Germany we visited Dachau Concentration Camp. It impacted me deeply (we asked the Germans working there why they had turned it into a museum that so clearly made them look like such 'bad guys' and the answer was "so it will never happen again"- and later I worked in Germany and saw the anger of the younger people towards parents who "let it happen" and experienced the fantastic intelligence, wit, knowledge and caring of these people who I believe will insure it "never happens again"). Anyway during that tour of the museum, it hit me like a thunderbolt- my Pop and all the young men and women who participated in that war HAD NO IDEA HOW IT WAS GOING TO TURN OUT. I had grown up knowing that Hitler was defeated- the world was put in order- the U.S. led the healing, etc- but when it was going on NO ONE KNEW HOW IT WOULD END! I think of that with our care of our beloved elders. We take each day, and we do what we can do and we love them and pray for them, but we don't really know how the ending will evolve. With my own parents, my mom allowed my sister and I to experience a long farewell and for me to be with her when that incredible spirit lifted off. My Pop, on the other hand, grabbed the brass ring and did the exit as quickly as possible- but both of them came to visit a bit right after. I have had a lot of feelings of peace about them because I knew they loved me with few conditions, and I hope they knew how much I returned that love and NOW I KNOW HOW IT ENDS.

Doctor Visits With Parents

2009-05-11T12:04:00.003-04:00

I refer to Yvonne in an earlier entry. She lives in Mobile and is a lifetime friend for me. I recently got to see and visit with her for the first time in many years. She caught me up on her parents. They are in their 80s and still mentally and physically active. Her dad was always an "individual". He did it "his way" continually and could be the brilliant uncle you love to death or the Unibomber depending on the moment or topic of conversation. Her mother is bright, good-natured, a great cook and VERY southern.
When Yvonne told me she did not have copies of their Living Wills and did not know their medical situations very well, I fussed loudly "That's fine today, but tomorrow you might be making decisions for them and you need to be involved!" She had already been pushing, but she went full measure- anyway- she sent me this story. Who can relate? From Yvonne:

I went to the doctor with my mom the other day; first time. She said she wasn't sure she wanted me to go, but when I showed up, she let me go back with her.
So, the doctor says, "Your blood pressure is up a bit". Mama said, "Well it doesn't feel like it".
The doctor said "That's why they call it the silent killer".
Mama said, "well, it doesn't feel high and my blood pressure cuff at home doesn't say that it is."
So, the kind doctor told her to record her blood pressure over the next month and then come back and bring her cuff and they would compare the findings with his.
So, the doctor says "Is there anything else bothering you?"
"Yes, my back." "What are you doing for it?" "I take a Tylenol, sometimes two." "Well why don't you take another one and see if that helps?" "No, that stuff isn't good for you." "You can take up to eight a day. It's easier to take than an arthritis medicine." "I'll think about it."
"Do you exercise?" "I exercise every day." "What do you do?" "I work around the house and in the yard." "You might need to do a different kind of exercise, like walking." "I do. When I go to the grocery store I walk up and down the aisles an extra time." (note from Sally: if you are not LOLing by this time, get me to drop you from the distribution list- you are not nor have ever been associated with a caretaker)

She then said to him, "Bill (Yvonne's dad) didn't like it that he didn't get to come too."
The doctor said "His blood pressure is okay. We need to get yours a little better."
She again insisted "I don't feel like I have high blood pressure."
(Yvonne asks the doc)"Have you ever met anyone in your practice like my daddy?"
"No, never. Your dad comes in here with copious notes and asks every possible question imaginable."
"Then he goes home and does what he wants"
"Your mom, on the other hand, doesn't say much. But she too goes home and does what she wants."
He really was a fine doctor: patient and allowed her time to discuss anything she wanted to discuss. I did not know whether to laugh or cry. I knew that if I laughed, Mama might not let me come back and I needed to begin the process of getting better information. I didn't cry, even knowing that my parents grow more stubborn about their medical care.
Actually, I saw too much of myself. The last time I had my cholesterol checked, I declared unfair advantage in that it was checked right after Christmas and I hadn't had time to study for the test!
Back at home... Yvonne's 83 year old dad was fixing the house airconditioner himself. The motor had gone out. This in-between writing copious notes for his doctor.

Transitions

2009-05-08T11:09:00.007-04:00

Hi Everyone
I am trying to be sure I set everyone up to be able to contribute to the blog if they are not already. If you want to contribute, and don't have password, etc. please email me at Grumbles@bellsouth.net

Now on to recent thoughts:
Lately a couple of our "regulars" had loved ones who have moved on (one is our Barb in a previous entry where she told about her dad- he has now gone on but chose for her to be with him at the time!). I have been touched that they have had the privilege to actually be with their loved one at time of passing. I FIRMLY believe that people make their choices if at all possible (someone on the field of battle or on an exploding airplane I don't believe can always say "Hmmm- I would like my Uncle Harry to be with me" but in most circumstances I think we can choose.- Read Final Gifts- a wonderful book by Hospice workers who would support what I am saying.)
First, I will say that when those we love leave their body behind, it is a SHOCK no matter how "expected" it might be. Therefore when we fawn over those people and treat them as if they have had a "shock" I think it is entirely appropriate. So do all the stuff- take food, send cards, call and let them cry, etc. It is lovely- nowhere is it done better than in the South I think!
I was able to be with my mother at the moment she left our world and it was extremely spiritual. I never was so certain of how our bodies are "containers" for our spirits and how powerful those spirits can be! I don't know if I will want to include my son during my own passing- I am very private (who would know? I'm so noisy!) so may choose to just exit- my dad did that. Nobody was with him and he just said "buh bye" and was out of there! Think he had glimpsed my mom and was going for it!
Anyway- my experiences with the dying and those left behind has never done anything but affirm my faith in our God. But send up prayers for those left behind ok? There are so many moments when it "sneaks up on you" and you are a puddle of tears before you know it. Mine was shopping for Christmas trees because my adorable dad and I always found the "Charlie Brown" one and got such joy out of the tinsel and lights. I have a artificial tree now and haven't gone for the live one in many years because I get so melancholy. Maybe when there are grandchildren in my life! Enough ramblings- if you are reading this, I love you. Sally

Next Topic- Trauma in our lives

2009-04-22T09:23:00.002-04:00

I had a long talk with my dear friend Karen last night. Karen contracted polio at age 3- spent a lot of time in the hospital- told me a heart-tugging story of how her roommate got all sort of gifts and goodies and how Karen's parents told her they would "explain" later as to why this girl seemed privileged- turned out this child had Leukemia and died within a year.
For those who don't know- I was in a very serious car accident at age 16- my face and one leg were very scarred (doesn't really show now, but in my late teens and early 20s it was SO OBVIOUS). I have recently re-connected with my best friend at the time- Stephanie- who was in the accident with me- our church youth advisor was driving- his wife was killed- a drunk driver caused it- Stephanie was very seriously injured- but I was the one who looked the worst- anyway, I think I am going to embark on a project to write a book about trauma early in life- and how it actually creates a positive impact (forgive pun)! You find out that you are mortal- you get to see your parents giving up their lives for you to get through the situation- so at just the time they would "annoy" they become truly people who love you- and it puts the world in perspective which is wonderful for a sense of humor, perspective and inspiration in later life. Karen and I are in the book for sure- can you share something or someone who should also be in there?? Watching our aging loved ones struggle through their later years is also a "trauma". How has this become a source of inspiration where you want to sit at their feet and express gratitude?
I once saw/heard Christopher Reed say when a reporter asked "What do you wish for?..." :"The only thing to wish for is gratitude- with it the smallest blessings in your life are appreciated for the miracles they are- without it, all the riches, talents or accomplishments will never be enough. " Amen

My mom's sayings

2009-04-21T16:24:00.002-04:00

And so it has been some time since I have been in the blog- I have heard that the book has been quoted several times lately- that pleases me of course. But it was my mom's birthday yesterday (she would have been 98-I read of a woman 100 who still bowls. wow)- AND we are having our house re-roofed (horrible hail damage in Atlanta- we had hail the size of softballs) so amidst the chaos and memories I thought an entry might be in order. While my parents were aging, they created chaos quite often. But they both had wit and dignity. I have always loved my mom's sayings: "it's not who you go with, it's who you see when you get there" was her urging to go out with the less-desirable boy- I used it to stress to salespeople that a sales call does not ever need to be a waste of time- meet new people! My other favorite of her's was "don't listen to what they say, watch where their feet are pointed" which is quoted by friends many times- the message is obvious- people show you their intentions- just watch. Remind me to tell you the Don Lucas babysitting story next time. I love all who read this and many many more- am very lucky. Sally

Ann's Mama

2009-02-22T18:07:00.002-05:00

To give a bit of background- my friend Ann has a mother who was always VERY close to her and her husband and her sister: a really special lady known for the sign in her kitchen that says "Old age is not for sissies". She and my dad were in the same nursing home as her Alzheimer's progressed as did his. He died several years ago but she continues on in the same home. I invited Ann to take a look at the blog and contribute if she'd like. This is a good one: From Ann:

"I’ll let you post this one if you like. Remember the Valentine’s Day breakfast we enjoyed together? I brought you, Nancy, and Vicky each a box of Russell Stover candy. Loyd and I took Mama a big box of Russell Stover candy, too. While she was enjoying eating some of the candy, I asked her, “Mama, you remember Russell Stover candy don’t you?” She smiled and said “Hm, mm (yes)!”

From now on, if anyone asks me if Mama knows who I am, I can say “No, but she knows Russell Stover Candy!”

From Vickie

2009-02-16T10:59:00.004-05:00

Vickie and Wanda's mother is an adventure! Let's hear what Vickie has to say- for those of you who get those precious "glimpses" of your loved one- it always reminds me of the story about golf- "Hit- sh-- I hate this game- Hit- sh-- I hate this game- Hit- It went in! I love this game!"

One evening my mother went for 15 minutes in an actual discussion with me about her cousin and family! After 2 years of no response. I left that nursing home in a haze of joy. With my dad, it was a occasional "glimpse" of shining eyes. His humor would show through in his eyes. I only got these glimpses very few times, as did my sister Virginia. The urge was to say "You're here with me Pop! I miss you and love you and want you to stay awhile!" But he never would.

So let's hear from Vickie- I am working on "easy" ways to blog directly- for now, please send your sharing to grumbles@bellsouth.net and l will be sure to post. We all love the stories! Here is a beautiful one from Vickie!

"Loved Barb's story. She just has a way of making you laugh. Did not know how to add this to the blog:
Another week taking care of mother. Let me see ...this week I received a call three of four days....oops...let me check my cell phone to be sure that is not four (the day is young.) It seems my sweet meek and mild mother has found another way to escape a restraint of which we never wanted to resort. She has a new name around the home...Houdini. The best part of all of it is to know that others know exactly how I feel!! However, there are wonderful moments occasionally. My visit yesterday seemed to be routine. Almost as if having an outside body experience, I see a picture of a fragile, confused little lady that seems to be in a lonely world very far away. Then coming back to reality I make small talk as she has conversations with herself. Then as I begin to plan my exit she looks up and says.."Thank you so much for helping me." These are rare precious moments that will energize me for another day. God does know what He is doing. My mother is still teaching me.

Barbara's tale of Feb

2009-02-13T17:08:00.005-05:00

Barbara shared this on my email- she tried to get it on the blog- instructions later how to do that- but anyway how much can we all identify with this!? I love all of you living in the "wonderland"- I am out of the rabbit hole now, but my poor wonderful son will follow the white rabbit at some point and look wide-eyed as I sing "A very merry unbirthday..." I hope he keeps his sense of humor as he grows to the size of the room and then can shrink to the point where he burrows through the key hole.
This from Barbara:

"So, last Friday we were able to move my father back into the Special Care Unit of the assisted living facility where my mother resides. On Sunday, the SPU head called to see if I would come over and "deal with" my father - he apparently decided and announced that no one should take their meds because they were being poisoned by the staff! And he was using pretty x-rated dialog to describe the caregivers. When I arrived and asked him, everything was lovely. He was laughing and all was well. He had no knowledge of talking like that. So, I sat down to lunch with the table of residents, between my parents. My mother got into a "mood" and told me she wanted to pour her juice on me, and then started banging her spoon on the table, then her arms. The aid came to take her to her room to calm her down and mother said she wanted to fall down and break her hip and die, but she wished she had a gun so she could shoot everybody. Wow! It was an interesting day.

On Thursday, the SCU head decided they needed to put my parents into separate rooms because it wasn't working out in one room.

We also now have hospice looking in on both of them, although I don't think either of them are ready to go yet. Hospice has taken a burden off my shoulders already.
So, the moral of my tale is that every day is an adventure with loved ones taking this journey of dementia. I try to remain upbeat and laugh about it (usually after I get back home and have a glass of wine).Thanks for sharing.

Valentine's Gift

2009-02-13T11:05:00.006-05:00

My friend Vicky always chides me for thinking my mind will go in my 70s and knowing (she actually acknowledges this to be true) that she, my husband Roy, son Tyler and our many friends will have great laughs as they witness my feeble brain delivering more and more funny lines. She sort of challenges me "so what if you stay somewhat rational ?"(ok so is this like the old joke about the guy after his stroke 'Doc- will I be able to play the piano? Cause I never could before')
A neurologist evaluating my father once turned to me solemnly and said "If I have the choice of losing my mind and keeping my body like your dad or losing body and keeping mind, I think I would choose your dad's path" And recently I had a chance to think about this.
I visited my friends Yvonne and Tim- they told me of a great friend they loved and admired. He was very social and was always inviting people over for BLTs (he made great ones). One evening, Tim went over and was treated to this scrumptious delight and his friend ate his, walked to his chair in the den and was suddenly gone. After EMTs and life-saving efforts from all parties, they were forced to bid a loving farewell. I remarked "Wow- now that's how I want to go!" I want to be cleaning dishes (as if- more like gazing at the messy kitchen in confusion and disbelief) one second and discussing "do-overs" I wish I had with God the next.
If you are helping your loved one down their path- bless you. But never forget it is THEIR path and THEIR journey. Allow it to be THEIR'S. It would be a Valentine's gift.

Watch out when your friends have dementia in their family!!

2009-02-06T15:00:00.003-05:00

I had dinner with a wonderful friend recently. I seem to attract the highly organized and focused into my life while I seem to zig and zag to an inevitable Alzheimers end. She and I snow ski every year together (our husbands hate the sport and she shares my passion for it). We are going at end of Feb and I am sure she is already packed while I will throw items in a suitcase the morning we are leaving.
So anyway, I had received a temp airline reservation she had made by email just a couple days before for the trip. Here I thought her reservations were already made! But this looked really good! So at dinner I told her I was trying to duplicate her reservation. She looked at me incredulously and said "I never sent you a email like that"- I could feel the blood draining from my face. I tried to be pleasant but endured the rest of the evening thinking "so maybe it's time to get reservations at an Assisted Living place". The MINUTE I got home I looked on email and there it was- the reservation email I had referred to- I forward it to her and talked by phone hearing her "Oh- Sally, I forgot- I had set this up under a different email address and they delayed the send-out- if I had realized the email you got it from I would have known what you were talking about." Then today a lady from my church called to say "You know- you were right- you DID give me all those Health Fair records- I found them today- so sorry I looked at you like you were crazy". This comment followed me spending a day turning my attic space office and guest room closet into rubble because I just KNEW I had given them to her or still had them. But I figured if she told me I didn't deliver them then I didn't.
I don't know what this is leading to in terms of advice- just if you are one of those "so organized I never lose or forget anything" people, be careful when you look at your poor friend who comes from a long history of Alzheimers and say something like "That's completely wrong" and instead say"why don't I check?" Can't tell you what a "dear friend" thing this would be for someone with my DNA- and lots of us are out there! I am also telling myself- "It isn't always YOU Sally- keep a sense of humor!"

3 Concrete Ideas

2009-02-04T15:36:00.002-05:00

I had a conversation with a dear friend today and it jogged my memory for 3 concrete ideas for managing your loved ones day to day in professional facilities: 1) I put together small binders with a picture of my parent's wedding picture on front and inside 2 or 3 pages of narrative about their lives as working people, family people, but mostly a PLAIN ENGLISH narrative of their medical history: "Pop had his first clue of dementia in 1994- he was prescribed XXX- after we moved them to Assisted Living, he was prescribed xxx and the reaction was terrible- he was almost catatonic and slept all the time..." You wouldn't believe the reaction from caretakers and medical people! "I loved the binder- I learned more in that 5 minutes of reading than I ever could have in HOURS of wading through (gesture to 5 inch binder with form after form for all their patients) all of that!" Medical people and caretakers seldom are able to "hear the whole story". They and your loved one will benefit. 2) Put a picture of your loved one when they were vital, working, happy, etc in a shadow box on the wall or on the bedstand. This will remind caretakers that this is someone with a life and interests and not just a sick, staring and weak patient! 3)Office Depot has "Memo books"- There are white pages followed by yellow- 2 memos to a page. Instead of telling the caretaker what should be done for your loved one, write it down- the white one should be torn out and given to the caretaker and the yellow one is for you to have a copy of what you asked to be done. Other concrete suggestions? Click "comment" and write them out!

Support Groups

2009-02-03T09:33:00.002-05:00

I have done several support groups lately. It must be my years in sales where I developed a very thick skin- but I am actually able to listen to the challenges and stories of people experiencing caretaking issues or just the heartbreak of watching a loved one struggle with health problems (or the healthcare system!) without becoming emotional or too vividly recalling my own painful experiences.

Anyway- there was recently a support group environment where it became so apparent how MANY people are dealing with this topic. There is often a lot of pain and hearing others say "me too" helps the loneliness a lot. I also found a (somewhat) humorous side effect. I commented to one of the participants that she had not talked or shared and she remarked "Are you kidding?? After hearing all of their stories, I realized I've got it real good- I just need to thank God at this point."

If your place of worship or care location for a loved one has support groups or wants to have one, I will volunteer my time to facilitate a program. If they are more than 1 hour away from Atlanta, I will ask for expense reimbursement. Otherwise the only monetary benefit I will hope for is book sales. If you have heard me talk or seen me facilitate one of these programs, please comment on the value. Thank you!- Sally

Stories We Hear

2008-09-15T09:38:00.002-04:00

Since writing our book, WHOEVER IS THERE DECIDES, my sister and I continuously hear stories of aging parents, excrutiating decisions, supportive or non-supportive spouses, siblings and friends/relatives. I hope this blog allows a forum for people to clearly hear the "you are not alone" messages- so please contribute!

We jointly wrote this book as a way to share our ideas of how to manage the sibling relationship while managing care during family illnesses or the issues of aging. We have often commented on the fact that our business dealings with each other while the book was under construction was our greatest challenge! BTW- don't look for a book from us on getting along with business partners!!

But we shared a vision and passion for the care of our parents. We had our love-hate relationships with them, but our love for each other somehow transcended most all of it. AND we kept running into people and situations supporting the need for a dialog on the subject.

Example: My sister Virginia was in a security line at the airport and witnessed a daughter struggling with getting her confused mom through the process. The TSA people were just as confused as the situation emerged! Virginia noted the fact that small children were managed excellently with strollers, diaper bags, etc. But no one seemed to be prepared for this able-bodied woman who did not mentally understand what was going on and her agonized daughter who was trying to explain and assist. Virginia reached out with a "you are not alone" message and she said the gratitude from the daughter was huge.

I have heard touching stories from those who purchased the book. One gentleman was grateful because his beloved sister was shouldering all the responsibility 2000 miles away and he wanted to learn how to support her. Another reported a "rebirth" of her sisters attitude after she read (and reread) our stories and advice and saw how unloving her actions had been when she really only meant to LOVE her parents. A psychologist reported that many mental tortures her patients continually describe involve siblings, aging parents and agonizing decisions. Another situation was the wife of a beloved husband who was struggling to do the best for his parents without "forcing" them to move to their city. His guilt about his sister shouldering the load was overwhelming.

Will you please share your thoughts, strategies, actions and stories? We all have a lot to learn on this topic. Thanks! Sally Grumbles

Getting Started

2008-09-02T19:28:00.001-04:00

Based upon feedback received in various presentations, some of you are interested in hearing about my experiences dealing with aging parents. So I've started this blog.

I expect to be actively contributing to this in the next month, so stay tuned for updates. Thanks to everyone for their interest and support.