Posted by Kathleen Pooler/@kathypooler
“we argue again
over nothing important
neither understands
we talk of different pieces
of the same scary puzzle”
Poems That Come To Mind: For those who love someone with dementia
Linda E. Austin, Moonbridge Publications, 2012
Alzheimer’s disease (AD) is the most common form of dementia. The cause and progression of AD are not well-understood and the symptoms are degenerative. Current treatments are limited and only treat the symptoms. The Alzheimer sufferer relies on others for assistance and the disease is known for placing a great burden on caregivers.
My dear friend, Louise, knows first-hand what Alzheimer’s Dementia looks like. Tony,her husband of 48 years was diagnosed five years ago. She started noticing signs of decline five years before his diagnosis was confirmed
Louise is an inspiration to me. I told her she inspired me so much that I would dedicate a blog post to her.
I feel certain she will be an inspiration to anyone who has to face the devastating impact of Alzheimer’s/Dementia on a loved one.
She has a very positive attitude and has simply made up her mind to be happy in her life and make the most of what life has dealt her.
Here she is posing with Audrey Hepburn at the wax museum in London a few years ago.
She tries to maintain a positive attitude as you will see in this recent update:
A new first for me: To get Tony to actually WASH when in the shower, today I got in with him. What an experience! Don’t worry, this isn’t x-rated. I tried to stand behind him and wash his head and ears and back, with lots of yelling on his part and cursing. It wasn’t easy to manage the water temperature this way and though the water never gets really hot, it can get too cool fast. However I managed with a lot of struggle to do a fairly good job and get him rinsed.
Then there was the cutting of the toe nails, finger nails, cleaning hair out of ears and nose and clipping his eyebrows and shaving off the werewolf hair on his neck. After helping him get dressed, I put toothpaste on his toothbrush and instructedhim to clean his teeth really good. Then I made the mistake of thinking he could really DO this. When I came back he was putting the toothpaste onto his face with the toothbrush, like for shaving. So, perhaps another new job is here for me.
This personal care business is something I really wish didn’t need to be done by me. It takes lots of time and energy and being I have so much to do all the time, I barely have an opportunity to take care of myself. I’m going to look into having someone come and do the personal hygiene business and see how that will work.
He still can feed himself though forgets how to use the utensils. We went out to eat the other day and this is rather frustrating so this is another thing we’ll have to give up soon.
I don’t want to think of a nursing home yet, as he really knows people and cares about them. TONY is still in there. It would be like abandoning him if I put him away someplace, and he’d always been a good husband and father and community person, so this doesn’t seem like the thing to do at this point.
I’m also thinking of bringing him to a day-program perhaps once a week for a few hours to try it out. It would be good for him to socialize, even though he really can’t talk, and be with other people besides me, and it would be good for me to have a few hours to myself, to focus on things that need to get done without interruptions, or to just “be” by myself for a bit.
That’s it for now. Life is challenging!
***
While having lunch with Louise before going to a show a few weeks ago, I wanted to share Linda Austin’s beautiful book, Poems That Come To Mind: For Those Who Love Someone With Dementia. Here are my reviews on Amazon and Goodreads.
While I admire Louise’s strength and positive attitude in the face of her husband’s cognitive decline, I can’t help but feel the pain and longing she must feel to have him back again. I felt the need to reach out and offer Linda’s poems to her.
When I read her the poems, I’d look up to see her nodding her head in recognition. For some reason , I felt consoled. Maybe it was the realization that Louise could feel she was not alone.
I feel the loss of the relationship we used to share with them as a couple. I can’t even imagine how Louise must feel.
Reading Linda’s poems was a vivid reminder to me of how we can impact others in a healing way through our words.
With a smile on her face, she thanked me and we went on to see the show.
***
Awareness of what to expect and support for the resulting confusion and heartbreak caregivers experience are essential for anyone who has a loved one with Alzheimer’s Dementia.
Linda lists the following resources for families and caregivers:
Alzheimer’s Association: http://www.alz.org/ 24-hour Helpline: 1.800.272.3900
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste
Creating Moments of Joy by Jolene Brackey
The Memory People Facebook group
How about you? Do you have a friend or family member with dementia?
If so, please share your story of how you have been able to cope or help those you love cope with this heart-wrenching diagnosis. I’d love to hear from you~
Linda has graciously offered to give away a copy of her book to a random commenter
On Thursday, April 18: Memoir Author Pat McKinzie-Lechault will discuss her newly-launched memoir Home Sweet Hardwood. A lucky commenter whose name will be selected in a random drawing will receive a free copy.
Oh, Kathy. You know I call my father every morning. Well, he just called me 45 minutes earlier than my time to call him. He did not want me to call and wake Mom up. She had just gotten to sleep. Another “bad night”. He is exhausted. He will be 89 on Saturday. Ma had become unmanageable. He was sobbing as he started to say that he can no longer take care of her himself. He has always promised her she would not go to a nursing home. But it is pretty hard to take care of someone when you are this old and the person frequently does not trust you and will not allow you to touch her. A few days ago I mentioned some facilities in their area. He said he would like their names for later. Later is now. Their 67th anniversary is May 4. Christina
Oh Christina, this is so heartbreaking to hear. Alzheimer’s has such a devastating effect on families as we can see from your story;doubly hard for you as you live in another state from them. I hope your family can find the right place for your Mom. My thoughts and prayers are with you. I hope the resources I’ve listed may provide some support for you and your family. Blessings and hugs, Kathy
Good morning Kathy! I read this article with an interest times two. It was related to medical science and the better attraction is: I might be an early victim of the dreadful disease. I keep telling my doctors that I have been forgetting names( even my doctors’ names), but they think of other things and not the beginning of the dreadful disease. I will ask them in my next visit to refer me to the specialist who can give a verdict. I eat right, rest 8-10 hours at night, body image and vitals are more than fit. I just write down names and phone #s and addresses , and forget after a month or so. I am studying myself. Good memory is a history for me. Sad, but it is a fact of life. Take care.
Absolutely, Smita, get that referral to a specialist for your own peace of mind. Just forgetting names does not necessarily mean Alzheimer’s,but you need to know and if it is early, there are drugs to delay the progression. Hopefully, with increased funding for research, cause, diagnosis and effective treatment of the disease can be identified. Keep taking good care of yourself and please keep me posted. Thank you for sharing your concerns. My thoughts and prayers are with you. Hugs, Kathy
Kathy, it is not just the names, it’s everything and sometimes it takes a toll on me. Lot of my time gets waisted and it aggravates me. This makes me lose my confidence as I forget the directions. Luckily the GPS helps. Yes, I need to ask them directly to see if I can get that patch or whatever, or at least get proper tests done to rule it out. Just remembering names of three objects or copy a diagram or subtract numbers is not everything.
Thanks for your well-wishes.
How frustrating for you, Smita, that you have to fight to be heard. Getting the proper diagnosis is half the battle. You know how you feel. Best wishes on getting what you need. Keep me posted. Hugs, Kathy
What a wonderful way to honor your friend’s compassion and strength in the face of such a debilitating disease. Louise is so courageous trying to permit Tony to retain his sense of dignity as long as possible.
Pat, I was so taken by Louise’s grace and strength in the face of such heartbreak , that I had to share it. She can teach us all a few lessons in courage and I hope her story inspires others facing a similar circumstance to have courage. Thanks for your sharing your thoughts.
My husband of 46 years has been diagnosed with onset Alzheimer last summer. Right now he has mostly no short term memory and asks me the same questions constantly. He does not like to be around people and we do not have any friends where we live because we are in a super conservative super religious area and we are neither. He has no initiative but still his sense of humour. We try to take as many trips, little trips not far even, as he loves to be outdoor. I am trying to learn about the disease as I know he will slowly get worse. I have not much patience so it is hard on me but I try to be supportive and optimistic. It is not easy. I am not originally from this country so it is doubly hard for me as I have no family of my own. We have two grown daughters but they are away in other states. They want us to move closer to either of them but I have to take care of everything and it is hard, alone, to de-clutter a house where we have lived since the seventy’s. Sometimes I wish I knew someone to talk about this but I have ordered two books on the disease so that may give me some good ideas.
Dear Vagabonde, Your poignant story puts a face on Alzheimer’s too. How difficult it is to try to remain positive and supportive when you are the only caregiver and your family lives far away. Families of Alzheimer’s patients need support, even in the early stages. The National Alzheimer’s organization is a good place to start(www.alz.org). Finding a local support group, often through your local hospital can help you connect with people who are experiencing what you are experiencing. This is not something anyone can do alone. I hope the links in the post will be useful.
Wishing you peace and support on your journey. Blessings, Kathy
Mmmmm… my heart just ached for what AD does to a beloved family member. Thank you, Louise for sharing what many of us can only imagine, though many experience as well.
My grandmother had dementia and it was hard to hear her say things she would have never, ever said. Things she would blurt out and you’d wonder where they came from. But with her I also learned to be patient as she repeated herself often.
I’ve not had a family member with AD, but experienced in doing therapy dog work with my Dachshund, Frankie at a local Alzheimer’s and dementia facility.
I was so scared the first few times to visit, as I was not “trained” in this or what to expect. It was very hard at times seeing the decline of the residents. While at the same time I grew immensely in my own spirituality and appreciating life even more. But I also realized that somewhere, looking into their eyes, somehow, someway they were still there. I learned to just be there, to listen, and to sit. Every now and then a story would come forth of a memory of a pet, which Frankie often stirred in them. Or the residents that would smile when they saw Frankie, sometimes the only time they did.
It inspired me to write a children’s book about Frankie’s visits as I wanted children to try and understand the changes their grandparents may be going through.
Such a touching post. I can’t imagine having to go through this, but I pray for strength if ever I have to. But the work I did for three years at the AD facility certainly opened my eyes and heart to what this disease does to those we love.
Dear Barbara,What a beautiful mission, you and Frankie had and one that lives on through you and Joie–helping Alzheimer’s patients reconnect with special memories just by being present to them in the moment. You have seen the face of Alzheimer’s and witnessed the sense of loss as the person is there in body but not in mind or spirit. To capture even a short moment of the person “being there” is a worthy mission. I appreciate you sharing your story. I think that was one of my favorite parts of your lovely memoir ,Through Frankie’s Eyes
Thank you so much for bring this dreaded disease out of the closet to your blog. I can see from the comments that it has been healing already.
As a home health nurse I, too experienced this disease on my clients and their families. Often I would visit in an assisted care facility and be amazed at the suffering.
Fortunately so far it has not touched anyone in my personal family yet but we are young. I am hopeful that the new program the president has asked for gives the funds for research for this.
I know what you mean, Clar. In my 44 years as a nurse, dealing with Alzheimer’s patients and their families stands out as the most heartbreaking of conditions. I am hopeful, too, that research funds will be allocated to this devastating disease that currently has no clear cause and no effective treatment. We need a breakthrough. Thanks so much for stopping by and sharing your thoughts.
Thank you for the up-close-and-personal insight into this dreadful condition that we all pray we’ll never have to deal with on either side of the equation. My mother did not have Alzheimer’s, but she did have brain dysfunction her last several years, and my father had made that same vow not to put her in a facility. When the doctor insisted because he was becoming unable to function himself due to lack of sleep and strain, he relented, and that nearly did him in. I wasn’t much help, because I lived 2500 miles away. The part about the difficulty of relocating under these conditions really hit home with me. It’s not easy even when everyone still has all circuits in order.
You’re welcome, Sharon. As you have shown through your own story, the impact of Alzheimer’s/Dementia is far-reaching and devastating on many levels, especially for the families. Having to put a loved one in a nursing home is something we all dread and usually doesn’t happen until a point of desperation, especially when most of us would rather die than have that happen. And for the caregiver “who has all their circuits”, it is an agonizing decision. I hope you father has come to a place of peace about his decision. How hard for you to be so far away. Thanks for stopping by and sharing.
My heart goes out to Louise and all who are dealing with Alzheimer’s. I highly recommend joining the Memory People Facebook group Kathy has linked to. It is a place to cry, to support others, and to offer advice based on experience. I had to place my mother in a nursing home for her last 3 years, and though many of us who have to do this feel guilty, there comes a time when we have to for the safety and well-being of our beloveds and because the care is affecting our own health, our families, or necessary jobs. I visited my mother almost daily, and we were lucky to find a great home full of “earth angels.”
I love Barbara’s post about growing spiritually and recognizing there are beautiful people hidden behind the face of AD. The poetry from my book grew from finding the funny, sweet and sad moments with my new AD-affected friends. Doggy visits were a welcome treat at my mom’s nursing home – for visitors, too! Thank you, Kathy, for this post spreading Alzheimer’s awareness, and for your good words for Poems That Come to Mind.
Dear Linda, Your poetry book, The Poems That Come to Mind and all the links you have provided for Alzheimer’s resources are a source of information and consolation to all of us. I appreciate how you have reached out to others by sharing your own personal story of your mother’s battle with Alzheimer’s. It is my pleasure to spread Alzheimer’s awareness through your book of poems. I love how both you and Louise share the “funny, sweet and sad moments.” I am very touched as well by Barbara’s story of finding the beauty in the people she and Frankie visited in nursing homes. Thanks so much for stopping by and for offering to give away a copy of your book to a random commenter. Sharing your poems with Louise was one way I could reach out to her and I am grateful for that.
Kathy, what a wonderful service you’ve given to those struggling with this diagnosis. Like almost everybody on the planet nowadays, I’ve known families with a member who suffers from Alzheimer’s. It’s hard enough at first, when the disease hasn’t ravaged body and mind, but it tends to grow progressively worse. And because these poor souls tend to wander off, sometimes it’s best to put them in a specialized facility where they can get the 24-hour care they need (and their weary family can get a break from care-giving). It must be just awful, looking into the eyes of a loved one and knowing their “essence” isn’t there. How courageous and loving of Louise to do what she can for her husband, while she can.
Thanks Debbie for your insightful comments. Indeed, courage and love are essential ingredients in dealing with a loved one with Alzheimer’s as Louise has shown us through her story. It is hard to imagine the depth of pain and loss felt by those who have loved ones with this dreaded disease. Safety becomes the main issue in the decision to place a loved one in a specialized facility. No one wants to place a loved one elsewhere but there comes a point when staying home is not an option. How difficult that must be to be forced by circumstance to make that decision.
This disease seems so cruel. And both you and Linda are so full of compassion. You moved me to greater understanding, and most of all you opened my heart to all that suffer in this way.
Every day we are given health is a day to rejoice. And every day others we love suffer is a day to extend acts of kindness.
Thanks for your kind comments, Shirley. Increased awareness and education are the first steps in realizing the impact this disease has on families. Understanding of this will help us reach out to those who suffer. I’m honored to hear”your heart was opened to all that suffer in this way.” I agree, health is a gift and a blessing. I appreciate you stopping by and sharing your thoughts, as always. Blessings, Kathy
My mom has alzheimer’s and is declining pretty rapidly. It’s doubly harsh because for 20 years she was a nurse at her privately owned and operated assisted living facility and cared for such patients. She knows how it goes, and is terrified. It’s worse for my dad, perhaps, because he doesn’t know how to deal with it. Terribly depressing. They are trying to close up “shop” with their facility due to her illness, and will be losing income and her memory both. I’d like to help my dad and all of us to respond to her in the best way possible.
Dear Angie, Thank you for having the courage to share your story. You have captured the essence of the heartache of this disease. My heart goes out to you for all you and your folks are enduring now–loss on so many levels and the frustration of not knowing how you can help. How terrifying for your mom who after all those years of caring for others now finds herself with a diagnosis she knows too much about. I hope you can find the right support for what you need. Starting with the National Alzheimer’s Association may be a good place to start. All the links that Linda provided may offer you support and guidance. Blessings to you and your folks. My thoughts and prayers are with you.
I am inspired by the courage and the efforts that Linda has taken in caring for her husband in his Alheimzer’s Disease. My mother has early on-set dementia and has virtual round the clock care while she continues to reside at her home of over 60 years. She has her good days and then there are days where she asks the same question and even asks about how my brother is, despite his recent death in December. God is merciful to give my mom the comfort of being in her home and to be surrounded by those who love her. It is an eye-opener to realize that we must depend on our Lord and others when we are helpless and cannot “fix” our loved one’s condition. Relying on the Lord in every situation is the key to continuing in the care and ministry to loved ones who suffer dementia and AD.
Hi Kathy, Thank you for sharing your story with us. You have shown us how important it is to find your own source of strength to cope with such a difficult situation. To be able to see the blessings in the midst of the deterioration is truly a gift of your faith. You and Louise, and all those caring for loved ones affected by this disease are a source of inspiration to all of us. Blessings, Kathy
Kathy, I type this blinking back the tears as there were so many reminders of Bob’s brother Jim’s decline. The “werewolf hair on his neck” is a vivid memory of Jim for me, not to mention the struggle that shaving and other hygiene activities became as his illness progressed. Louise’s words about time for herself is the issue so often forgotten by others. These caregivers need respite as much as their loved one needs their care. And yet, leaving the loved one or as Louise mentions moving them to a care facility equates to a sense of abandoning them. Such a difficult position to find oneself in and it happens so often in our society today. Thanks for sharing Louise’s story. I will admit I had to wait and steel myself for what might be written here. Our wounds is still young and raw.
Blessings for your sharing of life stories,
Sherrey
Dear Sherrey, You bring up a very important point–spoken from your own recent lived-experience with your brother-in-law–about the need for caregivers to be supported. It is a grueling, exhausting and painful battle for families to watch their loved ones slipping away. Thank you for stopping by and sharing your story. As I recall , you and your husband were right there to offer support for Bob and his wife and I hope that brings you a measure of consolation. Blessings, Kathy
Sherrey, I meant to say Jim instead of Bob. Sorry!
Kathy, thanks so much for putting me in your blog! I’m enjoying Linda’s book of poems, which I slowly read and think about at night before bed. The day-care didn’t work for Tony; he just wouldn’t cooperate. He seems happiest right at home. To be honest, though, he’s been slipping away so very slowly, for about 13 years now, so I am often not very inspiring at all. I often feel bored and resentful of constantly being with someone who I can’t converse with, who has no initiative and does not have language, as well as all the personal care he needs. He is very stubborn, and at this point absolutely refuses to wear Depends or such, and will scream at me and slam doors if I bring up the subject. It’s very hard to realize you can’t use reasoning with people with AD. I realize though that the simple act of giving him a hug and a smile, a glass of wine, seems to make him content. Thanks again, and to all those who responded with compassion and understanding.
My Dear Louise, Just by sharing the day-to-day realities and frustrations you are living through is inspirational. Finding the little things you can do that seem to make a big difference, i.e., ” a smile and a glass of wine” is so poignant. You have touched us all with your story. Thank you so much for stopping by and being willing to share your thoughts so openly. So many thoughts and prayers are with you. I hope the resources provided will help you as well as knowing you are not alone. I’m happy you find Linda’s poems so consoling. Trust me, you are an inspiration.
Blessings and Hugs,
Kathy
I don’t know what to say that hasn’t been said in this wonderful thread in response to a thought-provoking article. So, what comes up for me in contrast to all this courage and support is the Boston tragedy … some give so lovingly and others destroy, maine, and kill. Blessings to those who show others respect and compassion.
Lovely, Belinda. Thank you.
Thank you Kathy and thank you, Linda! This was such a touching and poignant story! I will look for the books soon. Hats off to all caregivers, family members, and especially to those who suffer from AD.
The April issue of Sun Magazine has a great story entitled “Side by Side” by Mally Z. Ray, being a friend of someone who succumbs to AD.
Heartfelt blessings to you for writing this.
Thanks, Sue. I’m happy you enjoyed the story. It’s a tough one to face but awareness and education for the loved ones who are dealing with this are so important. Thanks for the information about the Sun article. I’ll be sure to check it out. I appreciate you stopping by and commenting.
Blessings,
Kathy