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.
July 15, 2009
July 4, 2009
ElderCareRN
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.
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.
June 24, 2009
Shower Rather Than Sprinklers
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.
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.
June 13, 2009
Who They Really Are:
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!!
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!!
June 10, 2009
Waiting for Loved Ones
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.
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.
May 19, 2009
How parents always had our backs- now it's our turn
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.
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.
May 13, 2009
Barb's Tale of her Daddy
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.
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.
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