#stillhere: Attaining Peace Of Mind With Cathy Hurd
My husband Boz has dementia, and Im still here. Im a born caregiver, so its hard for me to look at my own needs as separate from my husbands needs.
The thing is, I get peace of mind when Boz is well taken care of: when hes happy, Im happy. Right now, its all about himI always enter into his world so we can manage life together. We wake up every morning with a smile and a kiss and we look forward to what the new day will bring.
I recognize that I should do more for myself, like getting back to the gym. I get respite through provincial programs, but it only allows me enough time to shop and clean. I think more supports need to be made available through government funding. That would allow me and others in my position to continue caring for their family member at home without having to put them into care something I would never do to Boz.
I get together informally with other caregivers when Boz is in his support group at the Alzheimer Society. Its very comforting. We share stories, and its not always about the hard times. We talk about the positives, too its life giving to share these things.
Also, I got some respite recently when my sister-in-law and daughters kidnapped me. They took me out for dinner, and we got a hotel room, just for fun. I slept for 12 hours straight! I was well rested when I got back to caring for Boz.
#stillhere: Enriching Life With Gary Quinton
I have Alzheimers disease, and Im still here. When I was diagnosed in 2012, I took a positive approach and said, Okay, this is who I am its part of my life. I decided to maximize what Ive got rather than be depressed about it.
I also chose to be physically active because early in life I learned that physical activity raises my spirits. I got back on my bike, and I even ride in the winter its exhilarating! I can honestly say that giving up my drivers license enriched my life because I became more aware of the seasons and the large scale openness of the landscape.
With other people, I use candor. If someone doesnt know me, it helps to put my cards on the table and tell them I have Alzheimers disease then they wont feel snubbed if I forget their name. My attitude is, if theres a problem, dont pretend its not there. Lets analyze it and find coping strategies and cures. The Alzheimer Society is doing a really good job of getting the word out so people understand.
I had a lifetime teaching career, and I have supportive friends who I taught with for years. I meet them and we go for coffee or bike rides. These outings keep me in touch with other people and get me out. I want to stay open and see all the possibilities my goal is to live life to the fullest as best I can.
#stillhere: Sharing Ideas With Don De Vlaming
I have Alzheimers disease, and Im still here. I attend a support group at the Alzheimer Society of Manitoba for people with dementia. We share ideas and relate to each other beautifully by talking about peoples interests. When I look around the room, it doesnt seem like anyone has dementia because we are all just friends talking.
But out in society, sometimes people have expectations that we cant meet, and we are treated differently. They dont realize that while we live in the same world, our world is not quite the same as theirs, even though we are still the same people inside.
In reality, in our group, we have more ability to communicate amongst each other than many families. The reason is that in families, people can take things for granted. In our group, we cant. We have to work on things and we have to be good listeners. We are all still functioning maybe not in the same way as the rest of society, but we are enjoying the socialization.
The biggest killer for us is loneliness. We are all friends in our support group, but my hope is that people out there will include us and encourage us. If you find topics we are informed about, well talk about them. If you ask us about our talents, well share them. Just like anyone else, we want to be included and respected.
Nicole Bell: What Lurks In The Woods: Struggle And Hope In The Midst Of Chronic Illness
Nicole Bell was determined to find out the cause of her husband Russ Bells early-onset Alzheimers. In the book What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness, she uncovers how Lyme disease became the prime suspect for triggering his Alzheimers, and the challenges that her family experienced in the search for effective treatments.
Im an engineer and Ive worked with lots of really complex systems, Nicole told Being Patient. Theres always a reason. Theres always a root cause.
Read on: Being Patient spoke with Nicole about Russ early symptoms of Alzheimers and why she believes that Lyme disease could be responsible for his unexpected diagnosis of Alzheimers.
Books For Memory Loss
Research has shown that people who read are less likely to decline cognitively as they age. A study in 2013, , found that reading into old age reduced memory decline by more than 30%, compared to other forms of mental activity. An analysis published in JAMA Psychiatry found that doing intellectually stimulating activities like reading and playing board games every day can lead to a lower risk of dementia and memory loss in older adults even if they start in their later years.
So the evidence is clear that its never too late to make reading part of your everyday routine. In this blog our memory care team looked at the benefits of reading for those with Alzheimers or other forms of dementia and suggest books for dementia patients. For additional information about memory care contact us today.
Stages of dementia and book suggestions.
Many people in the early stages of dementia retain their ability to read, although they may lose focus or become easily fatigued. Some helpful tips include:
- Read along with them.
- Choose books with photos clear, large text and humor.
- when reading, write down notes about the plot for easy review.
- make books, magazines and newspapers readily available.
- What the Wind Showed to Me
- Down by the Meadow
Book suggestions:Dovetale Press adapts classic works of literature and makes them accessible to people with cognitive impairment, including these six titles:
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Why Do Short Sentences Work Better In Dementia
That can make it very difficult for someone with dementia to listen, understand, and respond appropriately to normal conversation.
Thats why using short, direct sentences with only one thought per sentence is recommended.
It makes it easier for someone with dementia to understand what youre saying. Thoughts that are long or complex can be overwhelming because its too much to process.
This technique might feel strange at first because were used to using friendly conversation to fill the silence, let someone know whats happening, or to show that we care.
But combining fewer words with a warm and positive tone will be less frustrating for seniors with dementia and is just as kind.
Poems About Alzheimer’s Disease For Alzheimers Awareness Month
The Alzheimers Association has wonderful resources on their website about signs of Alzheimers, tips for living with the disease, help for caregivers, information on research and getting involved with support groups.
Whether you have been diagnosed with Alzheimers or have a loved one fighting this disease, we hope these poems will remind you that you are not facing this alone.
Be sure to check out our other Aging Poems.
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The Long Hello: The Other Side Of Alzheimers
Cathie Borrie, 2010.
Stettinius: A lyrical, poignant story of how Borrie cares for her mother for seven years. Though her mother has Parkinsons and Alzheimers, Borrie describes her as one hundred percent of who she is. Borrie writes down or tape records their conversations over these years. I read this beautiful book in one sitting. It reminded me so much of my own conversations with my mother as her language has grown more elliptical, and of the mixed emotions we often feel as caregivers.
Creating A Life Story Book
An integral part of any relationship is the shared history between two people and when one of those people is living with dementia, that shared history slowly becomes lost.
We encourage the use of life story books to help preserve the memories of those with dementia. A life story book, filled with photos from the past, can bring joy to a person with dementia and help them to rediscover a sense of belonging.
They are also a wonderful way for family members, friends, and support workers to connect with a person living with dementia.
How to capture your loved ones life story
A life story book is a wonderful way to bring back memories for a person living with dementia, and at the same time provide useful information to caregivers about that person.
It can be as simple or as complex as you wish to make it.
Start with photographs of the person and a description of their history. Keep information positive, avoid tragic events or memories that may cause the person distress or emotional upheaval.
Organise the information into a photo album, scrapbook or by using an online photo book service. Include a variety of photographs from the persons past and present.
These are some of the things to consider including in your loved ones life story book, or for more detailed instructions you can download our 14 page guide.
What should I include in a life story book?
Inside The Dementia Epidemic: A Daughters Memoir
Me: One of the best Alzheimers dementia memoirs I have yet to read. While other best sellers left me uninspired, I looked forward to sitting down with Stettinius and her Mom every night and learning more about their personal journeys. Many of the vignettes resonated so strongly with me that I found myself nodding in agreement, laughing and crying all the way through.
My Mom Is Taking Care Of My Dad With Alzheimer’s And I See Her Becoming More Easily Frustrated I Can See That Being A Caregiver Is Stressful What Can She Do For Herself And What Can I Do To Help Her While She’s Taking Care Of My Father
You have hit the nail on the head. Caregiver stress and burnout are among the most important factors that lead to institutionalization or even maltreatment of older adults with Alzheimer’s. There are a number of steps which must be taken. First, your mom needs to seek professional help herself. She may be experiencing a major depression, which can be treated with a combination of medications and psychotherapy . In addition, your mom needs a break. If it can be arranged, she should be able to get out of the house a couple of hours a day by herself . She should also be able to get away for more extended periods over the weekends, such as a Saturday afternoon and perhaps an opportunity to attend a religious service on Sundays if she has been a regular attendee in the past. A major problem that creates stress for the caregiver is sleep deprivation. If your dad does not sleep well, a medication to improve his sleep might be useful. Keep the doors of the house locked so your dad cannot walk out during the night and your mother may be able to sleep with more security about his safety. Bottom line is that your mom needs help for whatever symptoms she is displaying AND she needs a break from the care of your dad.
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A Place Beyond Words: The Literature Of Alzheimers
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I was a twelve-year-old home-schooler, hungry for friends, when my grandmother bought a one-way ticket to stay with us in Texas.
So! Nana said, as she clapped her hands after a round of hugs at baggage claim. Lets go home!
What about your bags? I asked.
Nana pulled a worried, contemplative face.
I forgot to bring anything, she concluded, just before her familiar plaid suitcases scraped down the carrousel behind her.
The summer before, a neurologist had diagnosed Nana with probable Alzheimers disease, but with a family history like hersboth of her parents lives had faded out in a fog of dementiathat probable seemed unnecessary. My grandmothers forgetfulness that autumn was alarming. Often she would panic at the wrinkled stranger in the mirror and ask us how old she was. No! she would reply, aghast, when we told her. She sometimes forgot that my mother was her daughter, and she inquired why I called her Nana. Its just what I call people I love, I told her, and she gave me a long hug, a wet kiss on the forehead. There was a new effusiveness to her affection.
This is her true self, my mother said, noting the undeniable improvement in my grandmothers mood. The happy her behind all the sad things that happened in her life.
Where were you going? I asked.
She took a baffled look around and told me that she didnt know.
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Read Aloud Activities For The Elderly
This is one of many free activities.
Reading aloud is an activity that most people are familiar with. Reading storybooks to children and grandchildren is a time for bonding, warmth and love. However reading aloud is not only for children adults enjoy it too.
For the elderly who loved to read all their lives, listening to someone read to them can bring profound comfort and joy. Sometimes read-aloud activities are lacking in nursing homes and assisted living facilities – however this can easily be changed.
Why not start a Read-Aloud Readers Group activity at your facility a Book Club with a difference! Read-aloud activities are an intervention well worth pursuing.
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Our Favorite Books And Novels Designed For People With Dementia
For booklovers, the attraction to literature never grows old. Reading is a fulfilling way to keep your loved one engaged and to help pass the time. And while the ability to absorb complex plotlines or focus for long stretches wanes with Alzheimers or other forms of dementia, joy still can be found in reading. Or being read to.
Books for dementia patients is a growing category of literature. These books address the increasing challenges their readers have struggling with plot and character details.
For people with memory problems, reading can become increasingly challenging. As your loved one struggles to recall details, a pastime that was once pleasant can become frustrating. Turning to childrens books might be an option, yet this can be disconcerting and even humiliating for an older adult. Fortunately, there are wonderful options for the booklover with memory problems and reading issues.
What Do Researchers Suggest
Fundació ACE is a nonprofit foundation in Barcelona, Spain, serving people with Alzheimers disease or other dementias and their caregivers in the fields of diagnosis, treatment, research, training and awareness. Marina Guitart is a psychologist and coordinator of the foundations Day Care Unit. She observes that many people with dementia retain their ability to read but lose focus or become easily fatigued. They give up on reading because of the effort involved in keeping the thread of the story.
Dr. Guitart advises, Dont stop reading. Reading every day helps preserve language and memory longer. But be sure to choose reading materials wisely for loved ones with dementia. Find books with photos and clear, large text.
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Implications For Practice And Future Inquiry
Who is that person now? What remains of what that person once was?
What does my caregiving behavior say about the kind of person I am?
What is the moral value of my actions? Is what I am doing right or wrong for the impaired person, the family or the caregiver?
What is enough? What are the limits to sacrifice?
What is the meaning of my experiences to my life as a whole?
Like Gordons story, Rubinsteins study showed how family caregivers bring to their experience autobiographical and family memory, tensions and conflicts in family relationships, and moral codes derived from socially sanctioned public meanings. These combine to construct how they gave meaning to events and make decisions about care. Rubinsteins informants told stories not unlike Mr. Cassidys, with the same dilemmas and fears of not living up to their preferred self-narratives.
#stillhere: Staying Positive With Rachel Smith
My father has Alzheimers disease, and Im still here. This was not something I expected to go through at age 26. It seems like just a few days ago I was a little girl and he was taking care of me. Now, I am taking care of him.
The role reversal started the day we got the diagnosis. Both my parents were in shock, so I was the one asking the questions. Now, even though I am the youngest in my extended family, many of my relatives come to me with their worries, and I have become a good listener. Taking on a mature role like this is also something I never imagined would happen.
I hope that one day Dad will be able to walk me down the aisle and hold my future children in his arms, but I fear that he may not be able to when the time comes. But instead of worrying about the future, I have decided to appreciate every moment I have with him. Despite what my dad is going through, he still has a positive attitude and a smile on his face. I cherish each story he tells and conversation we have. My time spent with him transports me to a time before the disease.
I share my feelings openly, and I have written about our situation, keeping a positive light on the many challenges we face. By sharing and focussing on being still here, I find I am able to enjoy the moments that we still have.
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