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!”
February 22, 2009
February 16, 2009
From Vickie
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.
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.
February 13, 2009
Barbara's tale of Feb
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.
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
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.
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.
February 6, 2009
Watch out when your friends have dementia in their family!!
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!"
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!"
February 4, 2009
3 Concrete Ideas
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!
February 3, 2009
Support Groups
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
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
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