Holidays are not always happy for the carer

I was browsing through LinkedIn today and came across this good article. It resonates with me and I hope you find it interesting and helpful as well!

You hear it all the time: everything boils down to attitude. Whereas it’s true that attitude can have a profound effect on your reality, this doesn’t mean that you ignore what you’re feeling. This is when optimism becomes outright denial…

Gaining self-awareness is one of the most difficult challenges we face as human beings. When are we overreacting? When are we “under-reacting?” When are we in that Goldilocks zone of “just right?” And what do we do when we feel like we’re in the middle of the darker parts of our journey? How do we find our way when it’s nearly impossible to even see the path before us?

When a New Year is less than happy

Carers falling through the cracks

Compensating the kindness of strangers

Mary makes $8.40 an hour before taxes — $1.60 below the Massachusetts minimum wage — from the private agency that employs her. She nets $610 a week for 84 hours of work — and makes no overtime, although state law entitles her to time-and-a-half for every hour over 40. Continue reading

Improve the human rights of dementia patients and carers

The government must act to improve the human rights of dementia patients and carers

Few now question the right of parents to stay with children in hospital – so why don’t patients with dementia have similar rights?

John’s Campaign is single-issue and simple. It is for the right of carers to stay with people with dementia if they are admitted to hospital. It is named for the father of my friend, the writer Nicci Gerrard, whose father’s dementia was catastrophically accelerated by a stay in hospital where he was largely cut off from his family.

In the 1960s we had to campaign for parents to have the right to stay with their children in hospital. Few question this right now. So why does the same right not apply to carers of people with dementia?

Source: The government must act to improve the human rights of dementia patients and carers

5 Therapeutic Activities for Alzheimer’s Care Partners

This post comes to us from familyaffaires.com. I came across it on a LinkedIn post by a gentleman I met in a fantastic online course about dementia, Mike Good. Mike Good is founder of Together in This, an online community helping family members caring for someone with Alzheimer’s. Through short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps them take control and have peace-of-mind they are doing the right things.

You can access the original article on familyaffaires.com by clicking on the title, below.

5 Therapeutic Activities for the Alzheimer’s Care Partners

We often hear about therapeutic activities that are beneficial for the person with Alzheimer’s or another dementia but it’s just as important to consider their care partner – the caregiver.

Living successfully with the disease requires that both care partners enjoy therapeutic enrichment that benefits their mind, body, and spirit.

But because the caregiver is often the only person caring for their loved one, it is difficult for them to find time to enjoy activities that are beneficial for them as well.

There are activities that can be done together that simultaneously meet the needs of the caregiver while providing beneficial sensory stimulation for the person with Alzheimer’s or other dementia:

Read the rest of this article at familyaffaires.com

Helpful tech for family carers

This post is about some of the apps out there that are going to be useful and useable for family members and carers of someone with dementia. It’s certainly not a complete list of everything that’s out there, but a summary of the apps that have come across my radar lately.

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This is me – Alzheimer’s Society

I heard of the This is me tool in a recent online course about dementia that I am taking. The information below is taken from the Alzheimer’s Society’s webpage. You can access their page by clicking on the title, below, or on the links in this post.

This is me – tool for people with dementia receiving professional care

Our popular tool, This is me, is for people with dementia who are receiving professional care in any setting – at home, in hospital, in respite care or a care home. It was originally developed for people with dementia who were going into hospital.

This is me is a simple and practical tool that people with dementia can use to tell staff about their needs, preferences, likes, dislikes and interests. Continue reading

Book Review! Come Back Early Today

I recently finished “Come Back Early Today:  A Memoir of Love, Alzheimer’s and Joy” by Marie Marley, PhD.  It is Marie’s account of her life partner’s development of dementia, spanning 7 years but also including a lot of stories from their 30+ years together. It is a story about love and about dementia (and many of the things that those encompass).  Continue reading

10 lessons learned from people with dementia

I was happy to come across this post on Huffington Post. I was just talking with Dan Mogensen from MindBuddy about how I would like to make a documentary that highlights some of the good things about dementia (philosophical views of personhood, perception of reality, changing viewpoints, mindfulness, humor, challenging individuals and society to accept and care for people who have different cognitive processes, increased focus on quality of life, etc. – we talked about a lot of things).

While this article isn’t necessarily focused on these ideas, I like (and think it’s important) that there is a growing trend in not focusing on the doom and gloom of dementia. Life doesn’t end with a dementia diagnosis. A person’s personhood and personality don’t end with a dementia diagnosis. Relationships and social meaning don’t end with a dementia diagnosis. They will take new forms and meanings, and will give new insights if we take the time to notice. Continue reading

Who takes care of the caregiver?

This is a re-post from Jessica Kingsley Publishers. You can also read the article on their website by clicking here.

Shake up your view of your demanding and relentless work so that you can start to put yourself at the centre of your caregiving work. Cheryl Rezek, author of Mindfulness for Carers, has written an incredibly honest blog on why it’s important to say ‘no’, putting yourself first, and being mindful of your emotions as a carer.

Rezek-MindfulnessForCarers-C2W Continue reading

European tour for professionals in aged and disability care

European tours for professionals in aged & disability care (Australia)

I came across this advertisement through the Telehealth and Telecare Aware newsletter I receive. I immediately contacted Elizabeth Dodd to see if it was possible I could join in the tour while they are here in Denmark, or if I could be of any help in finding places to visit or contacts while here. After some weeks of email correspondence to work out a price (I wouldn’t be joining the whole tour, and I won’t need any of the accommodation, meals, or transportation), we agreed that I could join the group while they are here in Denmark for 2 days and I will make a webinar for them at a later date in lieu of payment! I am SUPER excited about this!!
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Molly’s Kilt: Another True Dementia Care Story

I came across this article through LinkedIn.

“Kilt:  A costume sometimes worn by Scotchmen in America and Americans in Scotland” – Ambrose Bierce

By , Nurse, Dementia Specialist, author, “​ Kisses for Elizabeth:Common Sense Guidelines for Dementia

May 16, 2015

Sometimes what seems like an insignificant thing can mean the most to a person with dementia. We need to understand this and respect this.

      In 1995 I began consulting with several long term care facilities in Northern Virginia, providing them with education and training in dementia care and assisting with the development of dementia units. One of the facilities was home to a patient named “Molly”, a 63 year old woman who had been diagnosed with early onset Alzheimer’s disease. When the staff told me they were having problems with Molly, it was hard to believe. Molly appeared to be friendly, cooperative and interested in her surroundings. However, ever since her admission, she had worn the same outfit refusing to consider a change to anything else. Since she had been at the facility almost 7 weeks, her clothing had become quite soiled and in need of repair.

Bathing and personal care were apparently not a problem for Molly. She happily allowed the staff to assist her in the shower and had changed into pajamas every night. On the fourth night she was there, however, the staff had taken the sweater and kilt she had been wearing from her room intending to launder and clean them. When Molly awoke in the morning they were not there.

      When people with dementia become upset, their reactions can range from simply complaining to crying or anger, and in the extreme, they can have what we call a catastrophic reaction. This is what happened to Molly. She simply could not cope with what she perceived as someone stealing her kilt and sweater. Molly was hysterical and combative. Although the nursing assistants tried to explain that her clothes were being cleaned, Molly would not calm down. Finally, the staff found it necessary to contact her doctor to get an order for a sedative. After taking the medication, Molly became lethargic and slept most of the day. In the evening her kilt and sweater were returned.

      The staff was now afraid to take Molly’s kilt and sweater away again. Even when she showered, Molly kept them nearby and had taken to sleeping in them at night. Molly had also stopped attending activities and preferred to sit quietly in her room most of the day.  However, when I stopped by for a visit, I was surprised at how articulate she was despite her memory loss and some obvious confusion. We spoke about a few things I thought would not be threatening to her. Although the conversation was a little disjointed at times, she told me about her love of cooking and a dog she had once owned. She also told me a little about her family. Molly was Irish and her parents had immigrated to the United States when Molly was 2 years old. At this point in the conversation, Molly simply got up and walked out.

I asked the staff if they had talked to Molly’s family about her attachment to her clothing but they told me that Molly had been admitted when her older sister Kate had a stroke. Kate had recently been admitted to the skilled nursing unit in the same facility for rehabilitation, but had not yet recovered enough to be involved in Molly’s care. Although the social worker had taken Molly to visit Kate twice since their admission, all the staff knew was that neither of the two women had ever married and Kate and Molly lived together for most of their lives. I suggested that the social worker visit Kate alone and see if she could get more information.

When I returned a few days later the social worker had some information for me. Kate was recovered enough to now visit Molly and wanted to attend her care plans, but she herself would also have to remain in the nursing home for extended physical therapy. The two women were down in Molly’s room which gave me the perfect opportunity to ask Kate about the kilt and sweater.

      As I approached the room, I heard both women laughing, something Molly had not enjoyed for several weeks. Kate was helping Molly recall funny stories about their childhood and both women held hands as they giggled at the memories.
Kate was more than happy to talk to me as she had been concerned that we would not understand Molly’s need to wear her kilt and matching sweater. She told me that the two women decided to celebrate Molly’s 40th birthday by visiting the town where they were born. The highlight of their trip was the time they spent with their father’s brother, “Collin,” who gave them information on their family history. As they were leaving, their uncle Collin had given each of them kilts and sweaters which represented the colors of their family’s clan. He explained that, had their parents survived, they would have been given similar outfits when they reached their teens.

      Kate returned home and hung her kilt in the closet, wondering when she would have the opportunity to wear it. Molly, however, wore her’s frequently saying that it helped bring her a little closer to the parents she could not remember.

      When Molly was diagnosed with Alzheimer’s disease, she became very depressed. The kilt and sweater seemed to comfort her and eventually she started wearing the outfit every day. Kate admitted that she had eventually replaced Molly’s kilt and sweater with her own when they became frayed. Recently she had been staying up late once a week to wash and repair the sweater and spot clean the kilt that was left, making sure to return it to Molly’s room before she awoke the next morning.

      We now knew why the kilt and sweater were so important to Molly, but the outfit was deteriorating and losing it might be a problem for her. The answer came from Kate who was able to give the social worker the addresses of their cousins who still lived in Ireland. By sending them a picture of the kilt and sweater, the social worker was able to help Kate purchase an additional two outfits that were almost identical to the set that Molly owned. When they arrived a week later the staff set up a rotating schedule for the clothing. Molly would now always have a clean set to wear.

      I had the opportunity to visit the facility again to provide some training the following year. Remembering Molly, I asked the staff about her. Once again I found both women in Molly’s room but this time, Kate was able to walk and had moved back home while Molly had declined. Molly was silent. Her dementia had progressed fairly rapidly which was not unusual for early onset Alzheimer’s disease. Kate was there to hold her hand, still telling her stories about their childhood, but there was no laughter. Instead there was perhaps a flicker of recognition in Molly’s eyes while Kate’s were full of tears.

      I sat with Kate for a while.. She was facing life without her sister and talked about how much she would miss her. They had been very close all of their lives and had no other immediate family. Kate had always watched over Molly. As I was leaving, Kate made a point of telling me how grateful she had been for the understanding way the staff treated Molly and her need to wear her kilt and matching sweater. I made a point of letting them know this before I left.

What we learned:
Most of us have something from our past that is precious to us. When people suffer from Alzheimer’s disease or other dementias, the memory loss problems can be devastating. Immediate and recent memories are affected first, and eventually only the earliest memories remain. For these individuals, specific items may become extremely important. For Molly it was her kilt and sweater. Using a common sense approach, we found a way to let Molly have her treasured kilt and sweater without having to wear soiled clothing.

Molly’s story is one of 40 that can be found in the book “Kisses for Elizabeth: Common Sense Guidelines for Alzheimer’s and Dementia Care” available on Amazon and the website: Kissesforelizabeth.com

8 companies that are changing aging

This article comes from CNBC, and is a topic I am particularly interested in as I also like studying and being an entrepreneur in the gerontology and gerontechnology field! Aging2.0 is a GREAT program that is helping to launch many innovative and socially-beneficial companies, all focused on making life more enjoyable for aging adults! I had the pleasure of meeting with Stephen Johnston, the other co-founder of Aging2.0, when working on launching a start-up focused on making it easier to find a helpful and useful Assistive Technology. You can read more about that on my page on Adventures in Entrepreneurship in Dementia Care.

Tapping into the longevity economy

—By Julie Halpert, special to CNBC.com
Posted 08 April 2015

The longevity economy, representing all economic activity serving the needs of Americans over 50, is expected to top $13.5 trillion by 2032, according to Oxford Economics. This opportunity isn’t lost on savvy entrepreneurs.

Out of a total 290 entrepreneurs who attended the annual Boomer Summit last month in Chicago, 40 percent were entrepreneurs hoping to pitch their products to potential investors and get ideas on how to best appeal to this demographic. That was twice the amount as the previous year, and for the first time, they came from many different countries.

Katy Fike, co-founder of Aging2.0, a start-up accelerator program, and founding partner of Generator Ventures, a venture fund focused on aging and long-term care, said the industry is attracting graduates from top-tier business schools. Some entrepreneurs have already developed particularly successful products geared toward the demographic shift. Many of these ideas sprung from a personal experience and a desire to solve a problem endured by a loved one.

Here are 8 business owners who have already found millions in the longevity economy.

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Dementia and the Caregiver Guilt Trip

Dementia and the Caregiver Guilt Trip

Posted by Kay H. Bransford on  in A Day in the Life of Dementia

I’ve been feeling overwhelmed by the ongoing journey with mom. Two weeks ago, I sat and observed her in the community center before going up to say hello and she looked so sad. I left wondering if we are doing right by mom and was in a funk for days over it. My mom told me for 30 years she never wanted to be a burden to her children which is why they moved into a Continuing Care Retirement Community (CCRC). A quick tour through my blog will tell you a very different story. I am honored to be able to advocate for her, but when she goes through periods asking me to take her with me, my stomach drops. I feel guilty that we should have moved her in with us, not into this memory care community.

In an instant my funk is lifted thanks to a comment by a woman I met at a business function. She told me her mom has dementia and her dad has been telling her over and over “If I go first, your mom is going to beg you to let her move in with you. Don’t do it, she would never have asked for that. It’s the disease, not your mother talking.” In an instant, this woman helped me realize what I knew, but emotionally got mired in guilt, and could not recognize.

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Alzheimer’s Reading Room

If you haven’t checked out the Alzheimer’s Reading Room, I recommend heading over there after you finish reading my blog. It was founded by Bob DeMarco, who is a noted leader in the Alzheimer’s community, having done many lectures, speaking engagements, and building the Alzheimer’s Reading Room to educate all.

The goal of the Alzheimer’s Reading Room is to Educate and  Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s community.

At its core the Alzheimer’s Reading Room is about helping members of the Alzheimer’s Community understand, cope, and communicate with persons living with Alzheimer’s and related dementia.