BEAUTIFUL WORDS
even if it is
a handful of earth.
Hold on to what you believe
even if it is
a tree which stands by itself.
Hold on to what you must do
even if it is
a long way from here.
Hold on to life even when
it is easier letting go.
Hold on to my hand even when
I have gone away from you.”
- Nancy Wood
~ Robert Fulghum
“Hope is the thing with feathers
That perches in the soul
And Sings the tune without the words
And never stops at all.”
~ Emily Dickinson
“If you’re going through hell, keep going.”
~Winston Churchill
“If you can see your path laid out in front of you step by step, you know it’s not your path.
Your own path you make with every step you take. That’s why it’s your path.”
~ Joseph Campbell
“My candle burns at both ends
It will not last the night;
But ah, my foes, and oh, my friends -
It gives a lovely light!”
~ Edna St. Vincent Millay
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”
~ Mother Teresa
“We cannot direct the wind, but we can adjust the sails.”
~ Author Unknown
“When you begin to touch your heart or let your heart be touched, you begin to discover that it’s bottomless, that it doesn’t have any resolution, that this heart is huge, vast, and limitless. You begin to discover how much warmth and gentleness is there, as well as how much space.”
~ Pema Chödrön
“The beach house…
was designed so that in a bad storm
the ocean could have a way
to rush through it
without doing any major damage…
its beauty is in its durability
and its durability comes
not from offering resistance to the power
of the ocean
but in finding a way for the water to pass
through
thereby saving it
and letting it stand strong.”
~ Martha Manning
(On not resisting grief, but letting it out; letting it pass through you.)
“Life is a shipwreck but we must not forget to sing in the lifeboats.”
~ Voltaire
“Of all the powers bestowed on the grieving, the most mystifying is being able to see in the dark. And of all the secrets of the universe that are only visible at blackest night, the most holy is the power of compassion.”
~ Molly Fumia
“We have no right to ask when sorrow comes, ‘Why did this happen to me?’ unless we ask the same question for every moment of happiness that comes our way.”
~ Author Unknown
“The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger, and mosquitoes and silly people.”
~ Ralph Waldo Emerson
“It’s so curious: one can resist tears and ‘behave’ very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer… and everything collapses.”
~ Colette
“I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing.”
~ Agatha Christie
“Courage is not the absence of fear and pain, but the affirmation of life despite fear and pain.”
~ Rabbi Earl Grollman
“Give sorrow words; the grief that does not speak
Whispers the oe’r fraught heart and bids it break.”
~ William Shakespeare
“Death leaves a heartache no one can heal, love leaves a memory no one can steal.”
~ From a headstone in Ireland
“There are things that we don’t want to happen but have to accept,
things we don’t want to know but have to learn,
and people we can’t live without but have to let go.”
~Author Unknown
“Every evening I turn my worries over to God.
He’s going to be up all night anyway.”
~ Mary C. Crowley
“To be interested in the changing seasons is a happier state of mind than to be hopelessly in love with spring.”
~ George Santayana
“In the depth of winter I finally learned that there was in me an invincible summer.”
~ Albert Camus
“I don’t think of all the misery but of the beauty that still remains.”
~ Anne Frank
“Whenever you fall, pick something up.”
~ Oswald Avery
“Since the house is on fire let us warm ourselves.”
~ Italian Proverb
“Hope is hearing the melody of the future: faith is dancing to it today.”
~ Ruben A. Alvez
.
HEAVY
The time
I thought
I could not
go any closer to grief
without dying
I went closer
and I did not die.
Surely God had his hand in this,
as well as friends,
Still, I was bent,
and my laughter,
as the poet said,
was nowhere to be found.
Then said my friend Daniel
(brave even among lions),
“It’s not the weight you carry
but how you carry it–
books, bricks, grief–
it’s all in the way
you embrace it, balance it, carry it
when you cannot, and would not,
put it down.”
So I went practicing.
Have you noticed?
Have you heard the laughter
that comes, now and again,
out of my startled mouth?
How I linger
to admire, admire, admire
the things of this world
that are kind, and maybe
also troubled–
roses in the wind,
the sea geese on the steep wave,
a love
to which there is no reply?
~ Mary Oliver
from “Thirst: Poems by Mary Oliver”
“In the midst of winter, I found there was within me an invincible summer.”
Albert Careb
I adore this and hope you take comfort reading it this winter.
~Char
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“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.
Delicious Ambiguity.”
― Gilda Radner
Love this!
~Char
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Thanks for this quote, Char. I read Gilda Radner’s autobiography, “It’s Always Something”, about her battle with ovarian cancer. Such a brave, funny, adorable woman, and such a good read. I’m so glad she found her true love, with Gene Wilder, before she left us. ~ Jean
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I have read a few articles on both of them, and Mr. Wilder sounds like he was a wonderful caregiver to Gilda. Although frightened, angry and not as well informed (as we all feel or have felt in dealing with our loved ones illness) he still was a caring, supportive, encouraging caregiver, who was with her and loved her until the end. They made one heck of a team, on and off screen.
~Char
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Jean and Char — I always appreciated that Gilda admitted to having 17 root canals by the time she was in her mid-twenties. I figure anyone who can handle that much dental pain is one tough cookie (and dear to my heart as I am the chagrined owner of more than a few crowns myself, and not the good kind).
Laurel
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Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~Leo Buscaglia
Amen ~Char
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I’m Gonna Love You Through It. Please listen.
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Thanks, Joan, for sharing this song with us – so very appropriate for DLH. I could only make it half way through.
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I will keep your sister in my thoughts & prayers Lisa.
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{{Jean}}}, as always.
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Joan,
Thank you for posting the link to this beautiful song. My sister was diagnosed with Breast Cancer almost a year ago. She has since had Chemo, breast removal and 31 rounds of radiation. We pray that the Cancer is gone. She will have her other breast removed around Christmas and then reconstruction. This song will mean so much to her.
~Lisa
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Hi Lisa,
You and your very brave sister will be in my thoughts… how great and inspirational, not to mention meaningful is this song and video… Please let us know how your sister is doing. So many healing thoughts coming her way..
~Char
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Joan,
Thank you, thank you, and thank you… this is simply wonderful I saw/heard a bit of this a few weeks ago, via Robin Roberts… such an amazing song. Must use it this year at my City’ s Breast Cancer Candle Light Vigil… thank you sweetheart.
~Char
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Beautiful! A lovely song I am glad to have now, to share with others. Thanks Joan!
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Joan, I too have a friend who beat breast cancer. This song means so much to so many. The song and video were so beautiful. Loved it! Thanks for sharing, Karen
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What a beautiful song! Thank you for sharing it, Joan. Isn’t is amazing how the blessing of another’s words in song come to us in time of need? One of Dan’s songs that has recently been uplifting me is the one after which this website is named. There used to be a link on the site with the words printed, but I couldn’t find it just now. Your sister will be in thought and prayer, Lisa.
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“If you find it in your heart to care for somebody else, you will have succeeded.”
— Maya Angelou
I would like to think that Ms. Angelou was speaking of care-giving.
~Char
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I stumbled onto this website after reading about your work Jean. I was a big fan of your husband, and his music. My mother recently passed and I know what it means to be there for the ones you love, and to be a caregiver. With that in mind, I have written something that I wanted to share with you and your readers, with hopes that these words may bring some joy and healing comfort to those who are in need.
Don’t Lose Heart
Only Life can tell the story
Only Love can fix the stories end
Only you can be there for your loved one
Only time can help our bruises mend
When the hardest waves are crashing all around us
When the strongest winds are trying to knock us down
When the battle seems to much for us to handle
When the silence of the night is only sound
Know that all you’ve done was for a reason
Feel within your self a somber cause
Believe that Love is stronger than a Lifetime
Let those feelings take a needed pause
Close your eyes and breathe a long deep breath
See that what you have lives on past death
Savor every moment, as a treasure
Realize that time is but a measure
When time stands still, and the past has gone before us
The universe acknowledges our part,
and within our Souls the love we share will bind us
Don’t Lose Heart, Don’t Lose Heart
Daniel W. Leighly 8/5/2011
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Beautiful, Dan. Thank you for writing this for us, and for sharing it here for other caregivers to enjoy.
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It is an honor and a pleasure, Dan
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Dan, words so well said, so wise and so true. I am going to forward your beautiful words to my sister-in-law who lost her beloved husband, my dear brother, 5 years ago whom she misses just as much today as she did yesterday, as does his 4 daughters and myself. Thank you for sharing and I know she will enjoy these soulful words as well. Karen
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You are most welcome, it isn’t only how the words make you feel, it is also how the gift of words can heal. Dan
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Dear Dan,
Very sorry and sincere sympathy on the recent passing of your beloved mom.
Really glad you found us @ DLH, and posted your lovely piece, thank you.
~Char
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Thank you so much, Dan
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“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.”
— Maya Angelou
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Below is part of a wonderful poem Audrey Hepburn often quoted when asked to share her “beauty tips”. It was read at her funeral years later. The author is Sam Levenson.
Time Tested Beauty Tips
“For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his/her fingers through it once a day.
For poise, walk with the knowledge that you never walk alone.
People, even more than things, have to be restored, renewed, revived, reclaimed and redeemed: never throw out anyone.
Remember if you ever need a helping hand you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands; one for helping yourself and the other for helping others.”
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Dear Karen,
What a lovely poem, I love it. Thank you so much for sharing with us.
~Char
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As timeless, elegant, and beautiful as its author was. Thank you for sharing.
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Excuse me – there I go half-reading something again. What I meant was as timeless, elegant, and beautiful as the woman who quoted it was.
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Too many good people are doing too many good things for me to afford the luxury of being pessimistic.
~U. Utah Phillips
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“After a While” by Veronica. A. Shoffstall
After a while, you learn the subtle difference
Between holding a hand and chaining a soul.
And you learn that love doesn’t mean leaning
And company doesn’t mean security,
And you begin to learn that kisses aren’t contracts
And presents aren’t promises.
And you begin to accept your defeats
With your head up and your eyes open
With the grace of a woman, not the grief of a child.
And you learn to build all your roads on today
Because tomorrow’s ground is too uncertain for plans.
And futures have a way of falling down in midflight.
After a while you learn
That even sunshine burns if you get too much.
So plant your own garden and decorate your soul,
Instead of waiting for someone to being you flowers.
And you learn that you really can endure…
That you really are strong.
And you really do have worth.
And you learn and learn …
With every goodbye you learn.
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Joan, this is so wonderful, thank you for sharing it with us. I love it. ~ Jean
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Dear Joan,
I concur with Jean: simply wonderful and so full of wisdom. Thank you.!
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I especially love the lines,” So plant your own garden and decorate your soul. Instead of waiting for someone to bring you flowers”.
and “with every goodbye you learn”.
Beautiful and very moving, thank you Joan for posting,
made my day:)
~Char
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Jean, Char and DLH friends,
I thought this was an appropriate place to post this. I have not been posting lately due to family issues. However, an update: things are going much better. Counselling has turned out to be a god send and look forward to it every Monday evening. We have been so very blessed with a great guy and am beginning to see and feel the difference in my husband and our relationship. I wanted to use “beautiful words” because to me, when I was at the bottom of the barrel after this incident, I cherished the beautiful words posted on this site from you all. Just words “caring, thinking of you, miss you” are just that, beautiful words and most welcome and so greatly appreciated. A short story about our cook out this past Saturday, just the spur of the moment kind of get together. My mother, who is 82, me and three of my sisters were all sitting on the deck talking and laughing. We were all getting along, Mom was in rare form. I don’t know how we did it, but got on the topic of sex and out of my mother’s mouth “well, I don’t drink, don’t have sex, but I sure as hell smoke.” We just about died. Never thought I would hear something like that come out of her mouth. And sitting there laughing, grateful for that time together, but also wondering how many more of these talks will we all have with her. To those of you who have lost, I am deeply sorry and my thoughts and prayers are with you. But a heartfelt thanks from me from the bottom of my heart for these beautiful words we share with each other. Spring blessings to you all!!! Susan
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Wonderful to have you back Susan, and to learn that things are going so well for both of you, is just the icing on my cake. Having troubled times, when we think we can not go on, or even want to try, may lead the way to new greater outcomes. It is so hard to see, when we are in the eye of the storm, but once it starts to pass, and we get a cleansing bit of air…. man does it feel great. The story of your Mom seems to have completed your passage, not to mention adding comic relief! I am so happy today to know that you are doing so much better. I missed you dear friend, and welcome you back with open arms.
~Char
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Hi Susan, wonderful news to hear that things are getting along so much better, enjoyed your hilarious story about your mom too. Those are priceless moments aren’t they?!
Blessings to you all in return as well. It was great hearing from you.
Big hugs, Karen
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Jean, about time for another blog from you. I so look forward to them. You have a wondrous talent. It’s always the first thing I check when I log on – to see if you’ve written another blog. And the pictures with the stories, poems, etc. are a perfect match. God blessed you in many ways. Thank you for the solace your many tactics for saying different things bring to me. I’m also happy that in the process, they also bring you some solace, too.
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Hi Cindi,
Jean is presently with her parents, and at times not able to have excess to a computer. Once she catches her breath she will be back posting I am sure, some new and wonderful blog entries.
~Char
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Thanks, Char, I just saw your comment. “Excess to a computer” – that’s me! Caregivers are hereby declared exempt from spelling errors!
Jean
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Jean,
Thank you for the immunity, I would like to say it might have been my excessive access to vino, but it isn’t the truth I am dieting, and off the grape for now
~Char
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I just heard you’re allowed one day off a week when dieting – or was it one hour? one meal? That way you have something to look forward to and you won’t feel so deprived. Therefore, I deem that Char can have one glass of wine this week. What say ye? (Did I just hear you say Yee Haw?) There, my good deed for the day is done.
Lisa
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Love Button!
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Cindy, I’ve been working on a new post, but caring for my mother is incredibly time consuming; if she’s awake she wants something, and if I’m doing something else, she wants to know what I’m doing. Not surprisingly, the post I’m working on is a whiney little thing about how different each caregiver experience can be, depending on the person you’re caring for. My sister and I took Mom into town today: to lunch and shopping and coffee and donuts, and I’m hoping she’s worn out since I’m sleeping with her while my father’s away (she needs help getting up to pee in the night). Last night we were up until 3am then she had a bad dream and woke me with a yell that had my heart thumping in my throat then we were up at 7am to pee again (is this more information than anyone really wanted???!). Dishwasher is loaded, litter box is clean, laundry folded, I’m off to bed, perchance to scream…..
=-/ Jean
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Jean,
As much as we miss reading you, I hope you manage to get some peaceful time and even a good night of sleep. Please take care, caregiver!
~Char
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Hi Jean, my Mom is a very frail, tiny woman and busts her way around on her walker. She pee’s a lot. She has set up a fort at night around her bed. Sits on the side of the bed, walker ready, does a 180 turn with the walker and sits on her potty chair (has handles) with walker ready and does another 180 back to the bed. She does this several times through the night. She wears out the tennis balls on the end of her walker every couple of weeks. She has very nervous energy. Not sure if this type of “fort” scenario will work for your Mom but it sure helps all of us at this point in her aging. My Mom used to yell “help me” when she was dreaming back when I was 16 (25 years ago). I may be finally over that, not sure yet, ha! None of this is funny of course but sometimes when I can turn it around (rarely) in to some simulance of humor I do try to grin if I can. Jean, I read somewhere – it might have been here – that once the caregiver acknowledges that their job is “a caregiver” than things start to mentally turn around. I am working on that one. My thoughts are with you. You are doing great things.
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Thanks, Melisa, I loved the “fort” analogy, it immediately made me think of Mom peeking out of a tent and saying “I see dead people”. (Can you say sleep deprivation?) Mom’s getting better at standing and sitting but at this point still needs help – the stroke messed with her balance – she thinks she’s leaning forward when she’s actually leaning back. Plus, many times when she wakes up she’s confused about where she is and what each room is. Give your mom a “You go, girl!” for me. ~ Jean
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Just a small addition if it’s also a problem for your Mother to pee once she has settled in to do so. I had extreme difficulty peeing on a bed pan when i had hip replacement surgery a few years ago. Wheneve they would place a very warm or heated washcloth against my genitals for a small amount of time, it would induce me to pee much easier and more quickly. Hope this helps, although I understand the balance situation isn’t easily solved and may affect the other as well. May the force be with you!
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Can I offer one more “potty” story. When my Mom stayed with us for a few days, I caught her trying to pee in the trashcan in the bathroom instead of the toilet. I chalked it up to strange surroundings and the fact she was half asleep. When she moved into the assisted living facility, I had a small trash can close to her bed for tissues and whatever. I discovered, several different times, she had peed in it the night before. I could not figure out the “why” of it. Months later, I heard another lady talking about growing up without an indoor bathroom and no one wanted to go outside at night in the winter time. They used the “slop bucket”. The light bulb popped on. My Mom had the same experiences as a young girl. I firmly believe she viewed the trashcan as the “slop bucket” in her half asleep state. I moved the trashcan mainly because I worried about her falling as she tried to balance herself. She was a fall risk when she was wide awake so half asleep seemed very risky. I learned from the staff they had a couple of residents who did the same thing. I explained my theory and suggested they move the trashcans. I don’t know if they did, but it helped with my Mom. It’s always an adventure. Susan D.
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Susan, as potty stories go, that’s a good one. Makes perfect sense. Thanks. ~ Jean
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Bless your Heart……:)
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I’m so sorry about your Mother – I was unaware of that situation – must have missed the entries. I wish you the best, as well as your Mother, of course. You must be exhausted, so please, despite the fact that I adore your blogs, I also grant you exemption from timely entries because of all your various responsibilies. Besides, I find your blogs so intriguing and enlightening that they are something for which it is well-worth waiting. I hope you find yourself a bit of peace and rest in the next few days or weeks and I pray that your Mother steadily improves each day. And one last thing, I toast your exemption from spelling errors – hooray!
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Hi Jean and everyone, I hope you got some sleep last night Jean and as you always tell the rest of us, take care of yourself!
Well, tomorrow is D-Day; Mom is going into assisted living. I have an out-of-town friend coming in to help and support me tomorrow and another friend is going to bring dinner over tomorrow night. I am so anxious. My wonderful doctor gave me a few anti-anxiety pills to get through the next few days. I have brought up the assisted living place a few times to my mom, but she always forgets a few hours later. I am going to stick with my vacation story and hope for the best. Tomorrow at lunch time I will tell her that we are going away and she has to go for respite care. Her own furniture will be in her room at the facility when she gets there, so I will tell her that they asked us to bring it because the facility did not have enough furniture for her. I hope she buys it.
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Mary, how sweet that your friends are coming over to give you a “Bon Voyage” dinner before your vacation (wink wink, nudge nudge). Good friends are such treasures. I hope this works, I know you feel really bad about having to make up a story to ease the transition tomorrow. I hope she settles in quickly and that you can get back to being just her daughter again; her rested, healthy daughter. Let us know how it goes, we’re all pulling for you. ~ Jean
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Dear Jean and Char,
Whew. (That’s the exhale Char)! It’s been a very long, exhausting day and I am so glad that it is over. Mom did not take the move well and that was no surprise to me. She came up with everything she had to make me feel as bad as possible. THANK GOD my friend Annie was with me or I might have just melted into a big puddle of mush! The staff at the facility were very helpful and reassuring and they told me they have seen this reaction a million times before and that it would be okay. We did not stay too long because it would not have been helpful and frankly, I couldn’t listen to her hurtful words any longer. When she saw her own furniture in her new room she knew that this was permanent and my heart just ached for her. I tried to kiss her and hug her before we left but she pushed me away. She did however let Annie hug her. My mom has always been an expert at laying on the guilt! It’s incredible that she has lost so much brain function with the dementia, and yet has not lost one ounce of her ability to make me feel guilty!!!It was good to come home to my friend Diane (who can almost always make me laugh) and a prepared meal. I am blessed with amazing friends. My poor husband has been sick with a bad cold, due to all the stress I’m sure, so he kind of stayed in the background and my son and his friend moved the furniture. I feel a mixture of relief and guilt. The caseworker said that I definitely have to stay away for at least a week and I am so looking forward to a rest. My biggest fear now is that they’ll kick her out because she’s so nasty!!Unfortunately we had to cancel our vacation due to some issues with our 23 yr. old son, but Paris is just around the corner and we’re not missing that come hell or high water!! Thank you for all your support. Your personal stories of your experiences with your parents and grandparents and your advice helped me through one of the most difficult times I have ever faced. You helped give me the courage to do what was best for my family, myself and my mom even though she doesn’t understand. Thank you a million times!! I’ll let you know how things progress. Love to all you angels! Mary
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Dear Mary, my heart goes out to you, I know it’s such a difficult situation to be in, but take comfort in knowing the hardest part is over now. I feel very confident your feisty little mom will adjust there and she will feel secure and taken care of once she gets used to her new environment. I always thought the fight in them was a good sign that they are still not going down easily with the dementia trying to take them over. When they become complacent it’s more of a sign of depression and resignation I think and we never want them to be in that sad place you know. Don’t worry about her getting kicked out for a bad attitude, as I can assure you the staff are very used to that from dementia patients who get very easily agitated. Your mother is now protected under patients rights and she has a lot of them. I’m very proud of you Mary. I hope your husband feels better soon and you can enjoy your life to the fullest now and enjoy your mom even more now that you can spend time with her as often as you like without having to feed her, bathe her, toilet her, cook all her meals, do all her laundry, take care of all her medication needs and you and I know we could both go on and on with the list! Now there she has a team of specialists to administer to her every need 24/7 and you can be her guardian making sure that all goes as it should and step in when need be and don’t be afraid to do so if necessary either. I will keep you mom in my prayers that she settles in quickly and can enjoy her new home and all its amenities for her. Definitely keep us posted. Paris here you come! It’s Arizona for me next month and believe me, it can’t come soon enough!
God bless you all, Karen
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Dear Karen, Thanks for all your kind words and support. I am so looking forward to being “just” a daughter again. It feels so wonderful to be freed from the exhausting physical care and to have the ability to be spontaneous again. It will also be so great to eat breakfast without listening to my mother praying to die every single morning. Our lives have been so regimented around our parents needs for the last 6 1/2 years and we are truly burned out. But don’t get me wrong; I miss her already. I went in her room last night and cried. I will miss her presence, and we did have some nice days together when she occasionally had a good day.
Thanks also for mentioning patients rights. I don’t know much about that and I will have to read up on it.
I also wish you luck in dealing with the staff at your moms nursing home. It’s not fair that you have to deal with all these issues. Your stress was supposed to be over now and the people who were supposed to help relieve your stress are now causing you more. I pray everything works out soon and that you can relax. Have a wonderful time in Arizona! You sure do deserve it. Mary
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Mary, now you can breathe…just breathe. I hope you do something nice for yourself today.
Your mom and your family are in my thoughts and prayers.
~Lisa
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And, of course, you’re in my prayers, too! (I really need to start proofing my comments before hitting “reply”.
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Okay, the word I was looking for was “proofreading.” I’m going back to bed. TGIF!
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I’ll second that one!!!
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Thanks Lisa. My friend Annie (who helped me out yesterday) and I went shopping today.A new Hobby Lobby opened up and we went to check it out. I decided to do a scrapbook about my grandson and I bought everything I need to get started.
I called the facility this morning to see how my mom was doing. She gave them a hard time; she didn’t want to get dressed or take her pills or walk to the dining room for breakfast, but they firmly encouraged her to do it and they said she talked with her tablemates. Later in the day while I was out they called to say she fell, but she was alright. She is rather weak from sitting all the time so they are going to do some physical therapy with her for which I am glad. She was always asking me to bring her things instead of getting up to get them herself and I think that weakened her. Thank you for your prayers! Mary
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Mary, it sounds like you handled everything as well as could be expected, in large part because of your excellent planning. Having friends there for support, your son and his friend to move the furniture, etc., was so wise and forward thinking. I’m sure your mom will settle in like everyone else there – humans are very adaptive. I don’t know that she’ll ever totally forgive you, and she’ll probably play the guilt card for as long as she can speak (and any compassionate, loving daughter or son is susceptible to parental guilt so it will work) but you’ve done what’s best for her, and you, and your family for the time being. Time to get the rest of your life back on track, rest, and have a little fun. Just a little fun, though, because if you have too much fun you’ll feel guilty that your Mom is stuck in a place she didn’t want to go to because you weren’t GOOD ENOUGH or STRONG ENOUGH to do EVERYTHING for EVERYONE, EVERY DAY. So just a little fun, and no laughing. :-} Jean
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Dear Jean, Thanks for your comments. My husband Mike and I and my two dear friends went to a huge craft show yesterday and then to Dinosaur Barbecue for dinner. I must confess, I laughed!! But it’s hard not to laugh with these two friends around. I felt so light and carefree not worrying about what was going on with my mom at home and not worrying about having to rush home to her. And yes, the guilt still creeps in now and then and a bit of anxiety about how its going for her, but having a carefree time yesterday reminded me of what I’ve missed these past 6 1/2 years. It was so unfair of her to expect me to spend my every waking moment sitting here at home with her. She could never understand my need for friends or my need to get out of the house and do things and have some fun. (She was like this even before dementia set in). But anyway it’s over and I hope that when I go to see her 4 days from now, she won’t spit at me!!!
I’m so thankful for my 2 friends who stood by me through this whole ordeal and for all the support, prayers advice and good wishes from DLH! Thank you, Mary
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Mary, Good for you to get out in the world with the people you love…Fun is a great way to cope and unwind.. Jean hit the nail on the head about parental guilt. I always found the hardest part about visiting my mother was the ending of the the visit and saying goodbye . Hoping you have smooth visits.
Thinking of you, Joyce
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Thanks for thinking of me Joyce. Yes, parental guilt is a powerful thing! I just don’t understand why it doesn’t work on my (three) twentysomething children!! Hmmm…I guess my mother must be better at it than me!!!!!!
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Hi Mary,
Well today is Thursday, and the start of your new way of life. I know it will not be easy, so it’s great you will have a friend to lean on.
You can bet I will be thinking of you and cheering you on from the sidelines and hope to hear you exhale very soon.
~Char
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Hi Jean and DLH Friends, just wanted to send a hello. Jean, I started getting tired all over again reading about your day remembering my days too when I had mom at home with me. I’d be up and down the stairs until the wee hours doing the wash trying to get it all caught up before the morning when it would start all over again with the wet sheets, clothes and blankets etc, etc. I’ve been planning on writing in soon where I left off with my mom’s current rocky situation at her new residence but I’ve been completely involved and distracted fully for the last several months working on my moms affairs & it’s been extremely stressful! There’s been a great deal of sleep lost over it believe you me. I feel like I’ve aged 10 years and I’m mentally exhausted, but things have lightened up some lately. Her Medicaid went through recently but not without being instructed incorrectly by our caseworker who caused her to lose 2 months of paid Medicaid months as a result, a story for another time. The nursing home nurses on duty during the week are still complaining about my mom but don’t call me as often. She had a bad reaction from the drugs they wanted her to be on at this place and when I informed the geriatric psychiatrist over the weekend about her swelling in her face and rash that I noticed while stopping in to visit her one Friday late afternoon, he didn’t believe it was from the drugs and was very rude & condescending to me about it. After the nursing home medical team looked at her on the following Monday & determined it was from the drugs, he called & apologized to me, but that’s another story for another time too. I went in to see her tonight and she was fine, but the nurse on duty gave me an earful of all the nuisance things she does. I wanted to say to her that’s why she’s here in this expensive nursing home in a “locked unit,” but instead I just said “Well, I guess she just sort of stands out because she’s not like most of the patients here that are sedentary because of advanced age and in wheel chairs.” They do not like the fact that she is busy and gets in to things she shouldn’t sometimes, but the problem for them is that she also has done nothing to harm anyone or herself so they know they can’t legally kick her out. But I could definitely tell by the way she was wording things that she was making a case that made her seem like she didn’t belong there. Time to call the Ombudsman tomorrow. All I can do right now is keep records of these conversations. So, long story short for now, I don’t have complete peace and ease of mind yet. I am constantly worried and having to either go to bat and in some cases to battle as with the doctor conversation or having to go in there with an Ombudsman in tow with me. Next time, I will bring my friends, husband and wife, both doctors with me for a visit and if push comes to shove and I have to, an attorney with me as well I guess at any future formal meetings they request. I don’t know, what do you think? Do I sound apathetic at this point, or what? I am, it’s just that it’s a terrible feeling of constantly being made to feel like she’s constantly in jeopardy still.
So enough of all that for now, back to you, be comforted Jean, your mom is at home still surrounded by her family who loves her. She can still communicate with you, that’s so wonderful. I know you’re giving her lots of hugs and love. I worry that the patients at the nursing homes don’t get enough of that. Touch is so important. I sat with my mom’s roommate for about 15 minutes while she was in her bed tonight and we grasped hands and she held mine so tight and didn’t want me to go. She would try and talk but she couldn’t. I looked at her family picture by her bedside with her husband and 3 daughters and she was a striking woman in the photo. We’ve had a connection ever since I went to say hello to her in her bed one night and as I was saying goodbye to her, she winked at me! Poor thing she can barely walk and she can’t talk and I think she may have some Parkinsons, but I can tell she still wants to communicate with people if they give her attention and she always seems so quiet and lonely when I go in there. I never see her family there, but they probably come when I’m not there. I’m going to start volunteering to spend some extra time there at least once a week and read to the patients if they like.
Just wanted to let you know I’m thinking of you and your mom and so glad you are there with her right now and sending hugs to you both across the miles Jean. It always makes me feel good inside when I know you are with your family. I know it’s such a great feeling for you to have your parents safely near you when you’re with them.
Be well, Karen
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Karen, that’s terrible. You went through so much agonizing and effort to find a good place for your mother to reduce the stress in your life so you could get your health back, and now these “professional” caregivers are putting stress right back on you, worrying that your mother might get a bad reaction to a medication and the staff would ignore it, or that they’ll try to kick her out because she’s too much trouble. What are they being paid for?? Maybe I’m wrong, maybe this is some special kind of facility that only takes in people in the last stages of life? In that case though, why did they accept her in the first place? It would be so good of you to volunteer to read or spend time with some of the patients there, it sounds like it might not be the most comforting environment. And maybe, once the staff gets to know you, they’ll be more accepting of your mother as well.
Oh yes, Mom can still communicate with us! 11pm last night, halfway to the bedroom, she communicated that she would like a snack. The next 10 minutes rivaled any U.N. negotiations, with me reminding her that she needs to lose some weight; eating before bed is bad; donuts are not a major food group, and her acting like I was depriving her of one of her constitutional rights. She won, of course, but she had warm milk and a piece of multigrain toast, NOT a donut. But then we had six glorious hours of sleep before she was up again. Better living through chemistry – thank goodness for the Oxybutinin!
Jean
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Hi Jean, I was happier last night when the nurse called me and told me she got an order for a sleeping pill vs. Seroquel which the N.P. discontinued, but today she called me telling me the sleeping pill didn’t do anything to slow her down so today the N.P. wrote an order for Risperdol, another anti-psychotic to help “slow her down” instead. I know she’s had a reaction from that drug in the past too, so the nurse said they would try the Xanax instead that they haven’t been using. They really want her on meds at this particular facility. My friend and I were talking about the situation at lunch yesterday, she’s an MRI tech, and she brought up that the fact that they have so many sedentary patients that are in wheel chairs there in this locked unit that only has 20 beds. In other words, is a locked unit really necessary for patients that don’t wander? After all, a locked unit is specifically meant for dementia patients that wander and get into things they shouldn’t and not all of them are wanderers. Today’s complaints were: she went back into the nurses station and opened doors back there. If they don’t want patients wandering back there then they need a door like the many other nurses stations that I’ve seen. But this is the type of stuff I hear.
I love hearing the stories of the antics from our elderly parents. I find them so endearing and cute. Yes, I know all about what sweet tooths they become in their upper years. My parents used to have a whole cache of candy bars in a basket in their kitchen that my mom would be offering everyone when they came over. Stolen candy bars, that is! Yes, when Shirley, our original caregiver in FL, would take her to the grocery store my mom would swipe candy bars if you weren’t watching her every move. I caught her in the act before too and she was really good at sneaking it in her purse. She would slip it in without looking down at what she was doing so as to not draw attention, or so she thought. That phase passed in time too. You have to find the humor in them, otherwise you’ll be crying constantly instead.
I need to talk with my Ombudsman about the latest because I know she doesn’t like the idea of them trying to chemically restrain her there. I’m sure tomorrow’s call will be how the Xanax didn’t work and she needs to start on the Risperdol. The N.P. didn’t even start it at a low does of .25 or .50 she went right to a 1.0 mg dose, usually they’ll start low and increase gradually. So when I brouht up my concern about that too, the nurse suggested trying the Xanax. I’m not trying to be difficult I want to work with them, but if there’s a safer chemical route to go, I prefer they take that one if possible or at least try it out for awhile before defaulting to the black box labels.
Hoping for another 6 to 10 tonight for you all tonight! “Good dreams” as my mom used to say she had when she was on Paxil. I have such “good dreams” used to freak me out when she would tell me that, but she thought it was the greatest thing at the time!
Karen
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Karen, Wow! You are still being put through the wringer! I am so sorry… I understand what it is like to have the staff greet you at the door with ” behavior updates.” The staff also wanted my mother on Xanax etc. and she refused. There was nothing I could do… My relationship with my mother was complicated and that created another layer of guilt for me. If I was friendly with other residents she got angry, and she got angry if I talked with the staff. My talking with the staff was trying to play peacemaker. Stories for another time… I am so sorry that this facility continues to be resistant to your mom’s needs. You bring everyone you need to the facility to support your mom and you. I believe that there are people who are doing their job and caring for your mom. It just may not be noticeable among all the negative comments. I hope that you can stop feeling like you are walking on egg shells with the facility. That is too much stress for you! I am hoping for you that all of this will get easier.
I am thinking of you,..
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Hi Joyce, I didn’t see your comment until just now, thanks so much for your compassion and understanding. You are always so supportive. Yes, I wrote the latest down below back to Lisa. They definitely continue to keep me up at night worrying, but as for mom, she seems to be doing great. Everytime I see her she’s happy to see me. She smiles and rubs each one of my ears and then fixes my hair back over them. She’s probably still thinking like she always used to tell me, that I need to cut my long, (stringy) hair! But she walks around with a big smile on her face and I didn’t see that happy face at the last depressing facility she was at. So she’s doing great and they keep the place immaculate. It never smells back where she’s at, b/c it’s such a small unit and more staff ratio. There’s always housekeepers around. I’ve seen them cleaning the carpet at night when I’ve left with a huge push machine. So I still need to tread carefully with them, I don’t want the nurses I have issues with to ‘up the ante’ due to their intolerance threshholds especially if they feel threatened by me, but mom being on drugs that she’s having reactions to is not acceptable either.
So Joyce now you have all our mouths watering for chocolate covered tart cherries. I may have to make a special trip to the Godiva store tomorrow now!
Hugs! Karen
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Jean, Hope you and your mom were able to get some sleep last night. Thank goodness you can reflect with us with a sense of humor. Your snack story makes me think how life goes around full circle. It must be such a role reversal to encourage your mother to eat toast over a donut. I had to stop bringing my mom chocolate when she was in assisted living, even though she really wanted See’s candies. My mom would be the one to try and limit my chocolate intake when I was a kid. If only she knew that I would cave in to her repeated requests and buy her chocolates before my visits. I was so torn up about the mixed emotions that I ended up eating all the chocolates all in the parking lot!
Thinking of you and hope all is going smoothly as possible. Joyce
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Karen, you are beyond amazing – with all you’ve been through and continue to go through, you’re still able to see a need and find a desire to try to fill it. You are already dealing with so much, yet you’re able to consider carving out time to volunteer. You’ve been blessed with a deep well of compassion, a very loving heart – and – as the administrators and staff are finding out – are very strong spirit! May you receive many blessings in return for all you do.
~Lisa
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Hi Lisa, thank you! I have to tread very carefully in these waters because the last thing I want to develop is a battle of the wills between myself and someone there at her facility whether it be a nurse or doctor, so that’s actually kept me away more so than I would have liked initially, but I really do want to spend some time there more often volunteering in my mom’s unit, so I think I’ll read to some of them in the evenings and on the weekends for now. I really appreciate your kindness and compassion Lisa. Lifts me up greatly!
Love, Karen
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Hi Karen,
I was thinking of you today when I went to a nursing home to visit a dear friend of mine. I saw so many patients without visitors. I thought the same as you…perhaps I could volunteer some time. So many needs in this world…I’m sure every little bit of time spent makes a positive difference – even if it’s only in that moment. I do understand your need to stay under the radar a bit – a frustrating reality, eh? However, I have total confidence, based on all you’ve been through (and conquered – truly mind-boggling how much struggle is involved in simply trying to care for your loved one!) you’ll find your way. Thank you for all you’ve shared on this site. I’ve learned so much. My thoughts and prayers are with you.
~Lisa
P.S. My gosh, I think I got through this note without one typoe (I’ve had sew many in my recent posts – perhaps it’s time for glassess.
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Hi Lisa, so sweet of you to think of me. I know, I was just at my mom’s facility last night and they moved her roommate who was a perfect roommate for her to the other section of the nursing home. I don’t know why they moved her, but I did ask the nurse if it had anything to do with my mom and she said no (thankfully!). I was sad about it too, b/c she was so sweet and she couldn’t talk anymore like my mom, but she was further along and not able to walk, but I could see in her eyes she was still there and wanted attention. She loved it when I would hold her hand and talk to her. She will get even less attention over in the other section as there are lower patient/staff ratios there. It doesn’t make sense to me why they would move her out of the memory care unit. My mom’s new roommate is in a wheelchair from a sister facility where she was not in a locked unit b/c she’s not a wanderer. She’s lucid and can speak, so I’m not sure there’s any real dementia issues there, but she does have Parkinsons. I met her son last night, he’s a very good son, they just wanted to get her closer to where they live, totally understandable. His mom is also on oxygen and the nurse all ready told me my mom tried to do something with the oxygen machine. It’s very loud. She’s definitely not a suitable roommate for my mom, so it just makes no sense to me. If there’s any problems, I’m going to blame them, not my mom. My Ombudsman tried to reach me today while I was out, but will get in touch with me next week since she missed me. I have a lot to talk to her about. I observed my mom for 2 hours last night and she didn’t do anything unusual at all and unusual to them is her going into other’s people’s rooms, trying to open the refrigerator or taking things off the nurses cart like the water jug. These are the types of things she is doing that they claim warrant black box label drugs for her to be on and the psychiatrist called me last week and started her on a new one. He’s contracted with them, so he feels compelled to “write” prescriptions when the day nurse tells him all the things (annoying to them) that she’s doing. I pretty much feel at this point, there’s a conflict of interest that exists, so I’ll be addressing that soon with my Ombudsman and how to proceed. Her cheeks were swollen again last night and I pointed it out to the nurse and she agreed, so I just have a feeling something bad is going to have to happen eventually that is going to (I have news for them) get them, not my mother, in a world of trouble. Maybe they feel if something bad does happen, that will be their ticket to get her kicked out. Again, I don’t think they should be in the habit of keeping the same nurses in the memory care unit year after year, it gets too difficult and it requires a lot of patience and a special understanding of dementia patients. It’s a beautiful facility; all her needs are being met there; and it’s close to home, but there are serious nurse/staff issues resulting in me being continuously nervous about the situation there. I’ve met nurses in other facilities she’s been in that would tell me things like “I just adore her” and would enjoy how animated she was telling me about all the cute things she does. It doesn’t seem to be the case at this place! Sigh…the beat goes on, we shall see…
I hope your friend is doing well Lisa. You’re an angel to go visit her. The last few visits I had my son with me so I couldn’t stay and read to any of the patients, but I’m going to take a book with me when I go in the daytime. They’re all just so sweet. I can also bring Wendy, our English Springer Spaniel, with me too if I like. She would make an excellent therapy dog because she just adores people so much. I just have to convince my husband to let me bring her. He’s worried she might pick up some bad germs in there! He’s just being protective of her, he loves that dog like a child, plus she sleeps right up against him every night. They need to make shoes for dogs! LOL!
Take care Lisa, Hugs, Karen
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Karen, thanks for sharing so much with us, and in such detail – it’s so informative, and I find myself looking forward to reading your and Mary’s comments, to see how you and your mothers are doing. ~ Jean
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Thanks Jean, it’s good for me to vent and get it off my chest especially until I get a chance to talk with my Ombudsman about everything next week. Hope you and mom and family are all doing well. Hugs, Karen
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Karen, I’m sorry things haven’t settled down for you and your mom yet. It has to be very frustrating for you because you are just trying to make sure your mom is getting the best care possible.
I brought my dog Molly to my mom’s facility yesterday and she was a huge hit! Everyone wanted to pet her and she brought a smile to the faces of all the residents and the employees. I intend to bring her as often as possible.
Well, hang in there and hopefully everything will fall into place for your mom soon. You certainly seem to be on top of it all! Mary
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Thanks Mary, I know, I hope so too. That is excellent news that you are happy with the facility and your mom is being treated it sounds like with patience, dignity and respect for her condition by what seems like compassionate & well-trained staff. I’m curious, is your mom on or ever been on anti-depressants, Paxil, etc? They are often used on dementia patients to keep them in good spirits. In fact, I recently found out the facility my mom is at has her on one too, which they are following from an old FL2 form from her original doctor that prescribed it for her from when she first moved here with me. She had been taken off of it in the interim and wasn’t on it at the last facility either I don’t think (but I need to double-check that) and it’s led me to wonder if this is what is contributing to a happy, often smiling Barbara and may also be in turn causing her to be more curious and hence busy, which we know they don’t like the “busy” part of her personality. I’m just glad she’s not walking around like a zombie, but we’ll see once they get her juiced up with the new drugs to “slow her down a bit” how she tolerates these. My mom went through similar sounding phases like what your mom is going through and those phases do change. My mom used to call me all day long upset that she couldn’t have a car anymore, etc. She was really upset too even late stage when I moved her from FL to NC with me and she would repeat “North Miami” all day long to me meaning she wanted to go back. She hasn’t lived in North Miami in over 30 years though (she lived in another part of FL). But I’m relieved for you knowing that you are feeling good about it all now and that you realize the move was in the best interest of all. I really think your mom is going to do just fine there once she adjusts and that can certainly take a little while. But I’m just wondering about the use of an anti-depressant to help with her depression maybe? Or, maybe she’s on one all ready? So glad to hear you brought your Molly, sounds like she brightened up many faces there.
Hugs and a special nose rub for Molly too! Karen
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Hi Karen. Yes, my mom is on amitriptyline. I don’t think it does much for her though. She has tried virtually every antidepressant out there and has had 3 rounds of ECT. Each round of ECT lasted for about a year and then she would sink into depression again. I think I may try to talk to the psychologist who visits the facility about maybe trying something different again. It sure couldn’t hurt!
I hope your right about my mom going through other phases, because this one is not pretty!!Hugs to you and your Wendy too! Mary
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Hi Karen;
Just a couple brief thoughts:) Just wanted to suggest calling Wendy’s vet and asking her opinion about visits to your Mom’s facility. I assume Wendy’s vaccinations are up to date? While there are infections/disease with can pass between humans to dogs (reverse zoonosis), after taking a quick poll, a couple of my veterinarian friends said they had never seen it in 10-20 years of practice. (They explained the most common is having the animal transmit ringworm to the humans:) I understand why he is protective though; my two miniature pinschers were my children! It is amazing though to watch senior’s eye light up when they see a friendly, affectionate dog! You are very kind:)
Also, if the staff is so intolerant and nuts, surely there must be a history of complaints against the facility?! Ask the ombudsman how to research formal complaints which have been filed. There must be a state or federal organization which formally monitors and tracks. Indiana has a special department which tracks complaints and abuse. The Center for Medicare and Medicaid (CMS) might also be an option; I believe they have a compliance unit. Just random thoughts! Good luck!
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Hi Lynn. Just wanted to let you know that the facility my mom is in required me to bring in my dog’s vaccination records. Mary
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Hi Lynn, great tips, thank you. I think Wendy would be OK too. We’re probably just a little gunshy about the idea b/c Wendy is such a paw licker due to allergies she’s had and we’re also probably remembering my husband’s sister who is a vet telling us in the past not to bring our dog to places like Petsmart to walk around, like everyone does first thing when they get a new puppy and they want to bring them inside there for the novelty. She says the vets don’t recommend that b/c the puppies aren’t completely vaccinated yet making it a prime place for your dog or a puppy to pick up ringworm, etc. – a different situation altogether though we realize then the nursing home where you can’t bring them in unless they have an up-to-date record on file of all their vaccinations, like Mary did with her Molly. So those rules keep the little guys at least out of there for awhile. Tara also gave us some great shampoo that has anti-fungal & anti-bacterial agents and I’ve been using it on her paws only whenever they get dirty or she’s been at a vet or somewhere germy and that combined with her eating a hypoallergenic Royal Canin dry food diet has improved her allergy paws almost 100%. BTW, I love mini pinchers and think they are just the cutest little dogs. My friend had one and she used to carry him around in her apartment only in a baby sling on her chest because he was so small! I’ll never forget, it was the cutest thing. I remember one day Rebecca who come to think of it resembled Jean a lot was showing me all her cool artwork that she had everywhere in her neat apartment and I realized she was carrying him around in a baby sling under her sweater! It was so funny seeing his little face peek out, he was totally at home there. What can I say, we all love our animals!
I know that my Ombudsman, in fact the two of them, the former one as well, both mentioned the facility my mom’s at does have a history. What I would like to get my hands on though is written guidelines for locked units and patients they’re designed for. I found something similar online for another state, Minnesota, and would like to see something similar for NC. So if you Lynn or anyone else has any information on such guidelines please forward to me. It’s another topic I’ll be addressing this week with Jennifer. I know she has mentioned to me all ready that they dislike it immensely when the “surveyors” are called in to investigate what’s going on and I’m pretty sure that’s what they got worried about when they saw her with me at that meeting. She basically told me that if it ever comes to that unless my mom has done something to hurt herself or someone else they will laugh at their complaints they’ve been listing, as they are completely typical of many dementia patients and not just cause to send her somewhere else. Yes, I have my hands full with this place. Remember, I mentioned the last two facilities she stayed at, there was not a peep. They were both more than happy to keep her there and never recommended any addt’l meds. One was a very expensive facility she stayed at for respite too. The other, was not a 5-star facility at all, but the staff there were very kind and she was there for 5 months until I moved her closer to home. I will definitely ask Jennifer how I can legally research those former complaints that she’s all ready alluded to me about. Good advice Lynn, thanks much. Hugs! Karen
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Hey, I will try to do some research with CMS for you. However, it will only apply is Medicare is covering some of her stay. If she is all private pay the guidelines differ, at least in my state. If you do not want to post financial info and wish me to investigate, feel free to email me with her payment info at the private conversations email.
Aren’t dogs wonderful?!! I used mine for play therapy with young children; I miss them terribly:(
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Hi Lynn, my mom has been Medicaid approved and is no longer considered private pay as of April.
Thanks much, Karen
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I marvel at Mary and Karen, and the countless other caregivers out there, in the way you have been able to deal with the difficult and demanding health care situations, you are presently going through. I read your comments and your knowledge, and patience is something I extremely admire. It is my hope that someday I may be able to handle a similar situation, with the wisdom, grace, understanding and most of all patience, which you have displayed.
~Char
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Hi Karen,
Am hoping you’ve been able to meet with the Ombudsman so you’re able to get some of this “off your chest.” As I was reading your post I thought two things: I wonder if you keep a journal, so that you can get all these thoughts on paper and refer back if need be (or perhaps this site offers you that outlet) and are you able to fit in exercise to try to alleviate the affects of all the stress. Believe me, I know how difficult it can be to fit that in, but it’s so important, especially with all that’s swirling around you on a daily basis. Your efforts in providing care for your mom just bring tears to my eyes, Karen. You’re an amazing daughter. I hope all works out with the facility where your mom is staying. A big hug from CA.
~Lisa
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Hi Lisa, thanks for the very kind words, because I sure don’t feel very amazing these days, so I really appreciate your support. It’s funny you bring that up about keeping notes or a journal as I keep sort of reminding myself I shd at least keep a log, but I’ve more or less either e-mailed my ombudsman as things play out, or yes, vent about it on DLH. I’d really like to not think I’m making a 2nd career out of this management & worry of her well-being, but things will be quiet for awhile and then they’ll call me and it starts all over again with the unsettled feeling of what’s going on over there causing me a lot of anxiety. I actually was planning on bringing that up to our ombudsman as well about the best way to keep track & if the
e-mails were sufficient documentation. I just need to be in a habit of printing them and keeping them in a file (can you hear the whine in my voice)!
Thanks for your good ideas and encouragement, Karen
P.S. yes, I’m trying to exercise more often, but not on a regular schedule yet, but it’s important to me and I think over the next few months things will get better in all areas, I’m going to be optimistic for that to happen. Right now I’m also studying up on vegan dieting, as I am leaning into it never being a big meat eater. We’ll see! Check with me in a few months on that and we’ll see how I’m doing in that area! wink!
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Dear Karen,
I am sorry you are still going through all of this with you Mom, and her care. It is maddening that you have to be on your toes at all times, isn’t it? Your Mom is in this facility for a reason,I am sure the staff is overworked, but it is their job. I am not surprised to hear you are stressed beyond belief; you need a break from these individuals with
horrible bed side manners. Your tenacity will win out here. Volunteering at the facility, I think that is a fabulous idea, for so many reasons. Please let us know how it goes, when and if you have a second to write.
In the meantime, my thoughts and prayers are with you, and your
family.
~Char
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Hi Char! Thank you, you’re always so understanding. Yes! It is maddening! But you all are lifting me up and telling me to not give up I’m hearing here, so I find renewed strength from all my dear friends here that I am definitely leaning on during these rocky times!
Love to All, Karen
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Hi Karen, Your Mom is so lucky to have you as her eyes & ears. You are an amazing advocate for her. We as caregivers dream of having everyone on the team of helpers to be the best that they can be and the scary part is that some people in the medical profession just don’t, for whatever reason, come close to a high standard of care. I think it is because many healthcare professionals haven’t experienced what it’s like yet. I also feel there should be monthly training for all healthcare professionals on bedside manner. Don’t get me wrong, there are heroes among them. You being top of the hero list in my book. You help me to be even stronger as an advocate for my boyfriend. My Mom also has some extreme issues that we will be managing in our future. Keep writing. I am learning. I also wish there was something I could do. What I can do is let you know you are important. With love, Melisa
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Melisa, you are so sweet, thank you so much for your understanding. I couldn’t agree with you more and that’s a great idea about the training. I’m going to ask my Ombudsman about those things. There is definitely a need for training and to remind staff it’s not about them and how to make their jobs easier, but how to care for the patients properly with dignity and respect for their conditions. You do a great deal for my heart just by acknowledging someone like me and listening and lending your compassion to the situation and I hope I can do the same for you when you need us here too.
Much love, Karen
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Jean, My heart is touched to learn that you are now taking care of your mother. Life is certainly not for the faint of heart! I had the honor to be there for my mother as she transitioned from a young 92 year old who was still playing bridge and golfing 4 days a week, to a tired 96 year old who was ready to go on to her next life. It was a slow, gradual process. Her hearing started to go, then her balance and slowly the activities that kept her young at heart started to slip away. I was very lucky to have an amazing brother to share this journey with and when one of us was at our limit, the other one was there to lighten the load. We all spoke openly about what was coming, got the finances in order, talked about who should get what family heirlooms. And she was more than ready to go as she was tired, and the indignity of old age was making it exhausting to keep up the dignity that exuded from this classy lady. Mom prayed every day that today would be the day and we were all “prepared” for the inevitable conclusion…Or so I thought. But when that day came, the reality of it hit me to my core. I miss her every day and I wish I didn’t take the days she was with us for granted, even though many of those days weren’t easy. Now that she is gone, I realize what an honor it was to be there for her when she needed us the most. I am grateful for her every day.
I found this website because I was a huge fan of Dan’s and was looking to learn more about his life. After reading your poems, seeing your photographs and learning your story through your work on this website, I see that Dan was not the only thoughtful, insightful and talented artist in the family. Your love, kindness and compassion for others shows through so strongly in your work and I admire you for all you are doing to help others. You are an amazing woman. I wish you much patience and strength as you are loving your mom through this difficult time.
Ellen xoxo
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One of my favorite known men of quotes is Ralph Waldo Emerson. While it is quite true that “do the thing you fear to do and fear is certain”, I much prefer his quote, “He has not learned the lesson of life who does not every day surmount a fear. …” How appropriate in what we do each day. Both a challenge and a reward.
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Ew!!!!!!!!!!!! It should read “do the thing you fear to do and the death of fear is certain” for the first quote! I’m so sorry. It must be bedtime.
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Cindy,
Don’t sweet or should I say sweat the small stuff, I make typos all the time, the mind is working faster that the fingers… Thanks for your posting, no matter what time of the day or nite:)
~Char
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Thank you, Char. You are as awesome as Jean in speaking with others and I adore your sense of humor. Perhaps I’ll mention my 18 year old daughter again, but I feel very selfish hurting so badly over a young, vibrant woman or girl when there are so many on DLH who have immense grief and strife with which to deal. Sometimes, just reading the stories lift me up even though they make me despondent as well. Isn’t that an oxymoron? Well, it’s true. At least one knows that they are not alone and that’s a very good thing to know at times. Thank you for your kindness and please keep me smiling or laughing although the M&M’s at the funeral are a hard one to beat! Now that Bev is a woman who enjoys life to the fullest!
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My husband had this on a slip of paper he had been keeping in his wallet for years, I just love it, not sure of the author,
but felt is should be shared @ DLH.
“Not one day in anyone’s life, so her father taught, is an uneventful day,no day without profound meaning, no matter how dull and boring it might seem, no matter whether you are a seamstress or a queen, a shoeshine boy or a movie star, a renowned philosopher or a Down’s Syndrome child. Because in every day of your life, there are opportunities to perform little kindnesses for others, both by conscious acts of will and unconscious example. Each smallest act of kindness-even just words of hope when they are needed, the remembrance of a birthday, a compliment that engenders a smile-reverberates across great distances and spans of time, affecting the lives unknown to the one whose generous spirit was the source of this good echo, because kindness is passed on and grows each time it’s passed, until a simple courtesy becomes an act of selfless courage years later and far away. Likewise, each small mean-ness, and thoughtless expression of hatred, each envious and bitter act, regardless of how petty, can inspire others, and is therefore the seed that ‘ultimately produces evil fruit, poisoning people whom you have never met and never will. All human lives are profoundly and intricately entwined-those dead, those living, those generations yet to come-that the fate of all is the fate of each, and the hope of humanity rests in every heart and in every pair of hands. Therefore, after every failure, we are obliged to strive again for success. “
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Those are beautiful words, Char. Thank you for sharing them. This is my first time to post something on the DLH site. I’ve read the comments, stories, poems on several occasions but have never stopped and taken the time to write. Where do I start? Jean, I wrote to you last year before the Memorial weekend in Peoria and told you of how I turned to Dan’s music to get me through the toughest times in my life. His music got me through the days after Hurricane Katrina when we had no electricity and a houseful of relatives that were dancing on my last nerve. My “escape” was to sit in my car with the A/C turned on and Dan’s beautiful music playing on my car stereo. It was pure bliss. But those days paled in comparison to 10 years ago when I lost my 10 year old daughter, Lauren, to congenital heart disease. Like my other two children, Lauren grew up listening to “Mr. Dan’s” music being played at home. I turned to his music to help me through the darkest days. On the 5th anniversary of her death, I used a line from “Icarus Ascending” on a memorial card that I mailed out to friends and family…”there is no darkness in this place that we’re bound, love is the only thing that matters”. On April 28th it will mark 10 years that Lauren has been gone. That’s so hard for me to believe. Once again, I’ll be sending out a memorial card for Lauren. This time, I asked my good friend, Suzette Boulais (who designed the line drawing of Dan that was used as part of the Memorial weekend) to design a card for me. Not surprisingly, Suzette created a card that is so beautiful, so simple, so Lauren. I can’t wait to mail them out this year. I find that it helps for me to dive into a project like this. It helps to focus on creating something to honor Lauren’s memory. The worst feeling for me is that, over the years, people will forget about Lauren. I don’t want that to ever happen and if it takes me coming up with memorial cards to honor her memory every five years, then that’s what I’ll do. Lauren was a very special, happy, funny, loving, 10 year old girl who was so full of life. She loved nature, cats, the beach, dragonflies, and “Mr. Dan’s” music….just like her mom!
–Peace, love and Happy Mardi Gras ya’ll!
Pam
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Dear Pam,
Thank you for taking the time to write, so glad you liked my posting on “beautiful words”.
I was unhappy to read of the loss of your beautiful, Lauren at the age of ten. I can not begin to imagine the pain associated with losing a child. I love your idea of memorial cards, what a beautiful way to honor such a sweet, young, girl who loved life. I agree with you, getting involved in a project, not only helps you, but countless others too, in so many ways. Suzette is truly amazing, and her talent is a gift she shares.
It is my hope that you come back to DLH often, and let us know how you are doing. Until such time, you are honoring your daughter every day and in every way, just by being you. Stay well, and my thoughts are with you.
~Char
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Dear Pam:
What a touching story! I am grandmother to a beautiful boy who will turn 10 in two weeks. I can’t imagine life without Austin (my only grandchild) and know I can’t imagine what life was, and is, for you and your family without Lauren. She is now in the memory of us here at DLH and I know that I, for one, will not forget your story, or her! I hope you will post photos of your memorial cards (last one and this one too) for us to see! Blessings to you and yours – and to all at DLH. I am here much more than I post. And am moved so much more than I post as well! Thanks to all. I’m grateful you’re all here.
Dorothy T
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As Char said, I cannot imagine the pain of losing a child:( What an incredible way to honor Lauren’s memory! I am happy you have joined us. I believe you will have a a special and unique perspective for some of our Caregivers. Welcome; Jean has created a safe and supportive environment with this blog! Glad you are now part of it:)
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Pam, you and your family are the living legacy to Lauren and I know she will live in your hearts, and the hearts of the friends who loved her, until the end of your lives. If it helps your heart to send out your cards expressing your grief on the anniversary of her passing, that’s great – I totally understand about not wanting your loved one to be forgotten. We do what we can to heal. Finding a way to make something (anything) good come from our loss is the best therapy. Something else you might find helpful: perhaps next April 28, or on her birthday, or this Christmas in lieu of gifts, you can make a donation to a worthy local charity in Lauren’s name. Or you can start a fund somewhere in Lauren’s name. Each Christmas I get a card telling me that a donation to the Judy ***** Fund was made in my name. I only met Judy once, but I think of her every December now and remember her with gratitude for the good her husband is doing in her name. We’d also be happy to post a photo and a story about Lauren in our In Memoriam section here…I’m sure we’d all love to see her sweet face. We’ll support you in your grief, but we’ll also help you celebrate the little miracle who graced your lives for 10 years. Jean
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Thank you Char, Dorothy, Lynn and Jean for the very kind welcome that you’ve given me. I’ll work on getting Lauren’s photo and the memorial card on here, along with her story in the “In Memoriam” section. For now, I just wanted to express my heartfelt thanks for the kindness you have all shown me. You are all very special people. And, Jean, thank you for creating this site and for your generous spirit. I love the idea of donating to a charity in Lauren’s name. Over the years, people have done just that to various organizations such as the Humane Society (Lauren loved animals) and Texas Children’s Hospital (where she had her open heart surgery and gave her 10 happy years with us). I’m not sure that this is the right place to write all of this down but as I become more familiar with this site, I’m sure I’ll figure it out!
Peace and love,
Pam
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It’s all good, Pam. Post anywhere and we’ll move it if we need to. If it’s about caregiving, there’s really no “wrong” place. Jean
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Thanks for sharing this Char – I love it too. My sister got in tonight with family back from Hawaii (again!) The funeral is Saturday – Thank you so very much for your love and support – You, Jean and so many others here on this site have kept me going these past few months especially.
I still am processing all that has happened these past two weeks – more to share – moving forward slowly but surely. Angels DO exist and you are earning gold for your wings!
Hugs! Marietta
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Mari,
Glad you are doing ok, and taking baby steps in dealing with your grief. My thoughts will be with you all on Saturday.
~Char
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(((Marietta)))
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“Be a rainbow in someone else’s cloud.”
— Maya Angelou (Letter to My Daughter)
Love this…. it really says it all.
Happy, Healthy 2011 to All
~Char
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Char — thank you for posting that quote. Blessings to you in 2011.
And the best to everyone at DLH in the New Year!
Laurel
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Thank you Laurel, and all the best to you and your loved ones in this brand new year.
~Char
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Wishing you all a most Happy, Healthy New Year filled with much Faith, Hope, Love and friends. This year has been very trying and yet I have been so blessed to have had the support of this site and all of you. It is something that no amount of words will express my gratitude. Looking forward to 2011 with all of you!!! Love and Blessings!! Susan
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Susan, you know we are all here with you, and at all times, good and bad.
Your blessings for this site and all of us, coming back to you.
~Char
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Of course you would say this says it all, Char, because you do it so well. YOU ARE the rainbow in so many of our clouds.
Thanks,
Betsy
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Dear Betsy,
We all have our clouds, don’t we? At DLH it is all about being there. Thank you Betsy for being there and always having a kind word to say.
~Char
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“Aspire to Inspire Before You Expire.” Author Unknown.
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Divide and conquer, in our world, must become define and empower.
Audre Lorde
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This is a wonderfully written “ode” in my opinion. Enjoy!!
~Ann
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OOPS…Here it is!!
http://www.heart-2-heart.ca/sensitivity/
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“Walking with a friend in the dark is better than walking alone in the light.”
~Helen Keller
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Wow Ann, thank you for this post, HK to me was and absolute genius. This is so very moving and meaningful know matter how you look at it.
~Char
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This is interesting ……
A palindrome reads the same backwards as forward. (Like the name BOB, or the word RACECAR.) This video reads the exact opposite backwards as forward. Not only does it read the opposite, the meaning is the exact opposite.
This is only a 1 minute, 44 second video and it is brilliant. Make sure you read as well as listen…forward and backward.
This is a video that was submitted in a contest by a 20-year old. The contest was titled “u @ 50″ by AARP. This video won second place.. When they showed it, everyone in the room was awe-struck and broke into spontaneous applause. So simple and yet so brilliant.
Take a minute and watch it.
Lost Generation
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Here we go:
http://www.youtube.com/watch_popup?v=42E2fAWM6rA
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WOW backwards is WOW! Thanks for sharing this video, Ann.
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