We don’t think, when we’re raising our children that we may become caregivers for those who once cared for us.  We don’t make plans for this and it often hits unawares.

Auntie became my responsibility after my mom could no longer care for her.  She lived with my parents for more than a year when another relative couldn’t cope with Auntie’s Alzheimer’s forgetfulness and wandering.  Then Father died and Mother’s Alzheimer’s became more pronounced.

Because Auntie was a widow with no children, she became my responsibility.  I suppose I could have ignored the situation, but somehow it was something I couldn’t do.  During most of the time she was my responsibility, she was in a nursing home, so I didn’t have the “hands on” care I did with Mother.  But making decisions when she was ill or in the hospital, keeping in touch with nurses (I lived 275 miles away), and visiting whenever I could did become my role.

I cared for Mother in her home, in our home, and was responsible for overseeing her care in a nursing home for 8 years.  During this time I was helping my children with grandchildren.

However, all of them, no matter what age or generation, brought rewards to my life midst any frustrations.  Realizing that parenting encompasses more than caring for children will help you as you assume parent and elder relative care.

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Parenting More Than Our Children

  When I read Carol O’dell’s blog post, Did I Attract Caregiving? where she relates about caring for her mother, it touched a cord.  I began to wonder: 

Did I attract caregiving when it became my responsibility to care for Mother and Auntie, both of whom had Alzheimer’s.  Somehow I also became responsible, along with a family friend, for my uncle who never married. 

“What would have happened if I said I couldn’t care for Mother?” I once asked another friend. 

“But everyone knew you’d do it,” she said.  So I guess it was a non-issue as the “everyones” went on with  their own lives.

However, there are rewards, as Carol relates, in caring for one’s mother.  The spiritual rewards, the personal growth, the understanding of Alzheimer’s and now the reaching out to encourage others through writing and speaking would never have occurred.

Do you wonder, too, as you pursue your caregiving tasks, “Did caregiving find me?  Or did I attract it?”

No matter which…remember there are rewards midst the frustrations. 

(c)2008 Mary Emma Allen

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Caregiving – Does It Find Us or Do We Attract It?

I was excited by the invitation to write another guest post, Should We Track Alzheimer’s Patients Electronically, at AGIS CareStation.  This is a blog where you’ll find information and resources to help family and caregivers cope with aging, disability, and eldercare issues.

I’m pleased to share with their readers and think this also is a resource Alzheimer’s Notes‘ readers will find helpful.

My previous post at CareStation was Resolutions Aren’t Static in an Alzheimer’s World.

(c)2008 Mary Emma Allen

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Mary Emma Allen’s Article Featured at AGIS CareStation

 It’s difficult enough when you family member has no health problems other than Alzheimer’s  But when there are other issues, such as diabetes, their care becomes more complex for family caregivers and for staff at a nursing home.

Here are 7 tips which hopefully will make diabetes care for Alzheimer’s patients a bit easier:

 1. Learn about diabetic diets, especially if you’re the one preparing the food.

2.  Learn about your family member’s  medical needs.

3.  When your family member resides in a nursing home, make sure you note this on the forms you fill out.  Diabetes should show up in their health records, but be sure you have it documented.

4. Coordinate with caregivers at the nursing home and make sure they know your family member has diabetes.  Monitor diet at a nursing home or with a caregiver in the patient’s home. 

5. You’ll find a diabetic becomes forgetful about medications and diet.  They eventually won’t know why their diet is restricted and may rebel against this.  So..don’t take it personally when the patient gets upset with you as they lose the ability to comprehend diet and medication.

6. Seek advice from the patient’s physician about their care.  Being informed makes it easier to cope.

7.  Remember you aren’t expected to know and do everything, only the best you can.   

When I  cared for Mother and Auntie, both of whom had Alzheimer’s, I had some experience with diabetes.  Although Mother didn’t experience this complication, her sister, Auntie, was a diabetic.  When she lived with Mother and I cared for both of them there, I had to watch Auntie’s diet.  For some reason, she craved sweets like she never had before. 

Mother was concerned and tried to control Auntie’s diet when I had to return to my home in another state.  However, because she was in the beginning stages of Alzheimer’s herself, she wasn’t always aware what Auntie ate…or managed to sneak from cupboard to her room.

However, we must have managed fairly well, in spite of not being perfect (see tip #7 above), because Auntie lived to be 88 years old.

(c)2007 Mary Emma Allen

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7 Tips for Care of Alzheimer’s Patients With Diabetes

 By Guest Blogger – Yvonne Russell

Australia’s 2007 National Dementia Awareness Month runs from 17 September to 17 October. This is Alzheimer’s Australia’s national community education campaign. Let’s mark the occasion, by sharing one of Australia’s most famous and best loved picture books, which deals with Alzheimer’s.

  Wilfrid Gordon McDonald Partridge & Mem Fox
Australian author, Mem Fox, is world renowned as a great picture book author. Her award winning, Possum Magic is Australia’s best known children’s book. My favorite, though, is Wilfrid Gordon McDonald Partridge, which is a beautiful story about Alzheimer’s and reliving precious memories.

This would be a great book to share with a child who has a loved one or neighbour with Alzheimer’s. For a school group it’s a chance to heighten awareness, especially as they sometimes visit old people’s homes as a class outing.

Mem Fox says that of all her books, this is the one which adults love the most. To truly relish it, you’ll need to read the whole book, but let me give you just the essence of this beautiful and touching story.

The Story – What Is A Memory?
Wilfrid Gordon McDonald Partridge lived “next door to an old people’s home and he knew all the people who lived there…But his favourite person of all was Miss Nancy Alison Delacourt Cooper because she had four names just as he did. He called her Miss Nancy and told her all his secrets.”

He was puzzled to hear his parents saying Miss Nancy had lost her memory. Wilfrid Gordon wanted to know what a memory was so he asked each of his friends in the old people’s home one by one.  He asked Mr Jordan who played the organ “What’s a memory?” “Something warm, my child, something warm.” Mr Jordan replied.

Gathering Memories
Wilfrid Gordon asked each of his old friends in turn. Something from long ago, something as precious as gold, something that makes you laugh, something that makes you cry were some of the responses. He set off to find some memories for Miss Nancy as she had lost hers.

He gathered together in a shoebox, a shell he’d found long ago, a puppet which made everyone laugh, his Grandfather’s medal which made him sad, a football that was as precious as gold and a fresh egg from the hen house.

Sharing Memories
He sat down with Miss Nancy and gave each thing to her one by one. When she picked up the warm egg she told Wilfrid Gordon about the tiny speckled eggs she’d found in her Aunt’s garden as a child. As she held the shell to her ear, she remembered going to the beach long ago and “how hot she felt in her button up boots.” Each memory was shared and “the two of them smiled and smiled.”

This simple and touching story is illustrated in soft watercolours, by Julie Vivas who also illustrated “Possum Magic.” 

Wilfrid Gordon McDonald Partridge was sparked by Mem Fox visiting her grandfather in an old people’s home. Her father later suffered from Alzheimer’s. This heartwarming book may be a catalyst for discussion and for sharing memories.  

For the story behind the book and more from Mem Fox about Wilfrid Gordon McDonald Partridge, visit the author’s site. Mem Fox has also contributed stories to “Memories”, a book produced to raise funds for Alzheimer’s Australia initiatives and research.

© 2007 Yvonne Russell

Yvonne Russell is an Australian freelance writer who works closely with allied health, social services and education professionals. She blogs at Grow Your Writing Business.  She recently became a co-blogger with me at b5media’s Home Biz Notes .)

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Discover an Australian Picture Book Focusing on Alzheimer’s

People react to the death of a loved one in many ways. Lauren Kessler’s way was to try and understand more about the disease that killed her mother. To do so, she got a job as a caregiver at a residential Alzheimer’s facility in Oregon. Her book, Dancing with Rose, documents her time spent there as a caregiver to patients with various degrees of Alzheimer’s.

Read these essays by Lauren…

Bridging the Gap

Seeing Instead of Watching

Check out these book reviews…

Life in the land of Alzheimer’s

Seeing Mom’s Humanity First, Instead of Her Disease

“Dancing with Rose” more heartening, thought-provoking than painful

Can you see why I think this book is worth reading?

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Book: ‘Dancing with Rose’ by Lauren Kessler.

Balancing freedom and safety becomes the issue.  If someone has cared for a family member with Alzheimer’s or some form of dementia, they would be more likely to favor a tracking monitor.  If a person never has, they might consider this restrictive and repressing the person’s freedom…a form of unnecessary control.

We had a friend, in the mid stages of Alzheimer’s, who left his wife at the beauty shop and never returned to pick her up.  He simply drove off.  About two weeks later, he was found, dead from exposure, in a woods, about 100 miles from home.  He somehow had driven off the main road, onto a road in the woods, gotten stuck in the mud, and wandered off.

My aunt disappeared from my mom’s house one morning, slipping out when Mother thought she was in the bathroom.  After about an hour of searching the neighborhood, a friend told Mother she’d seen Auntie a mile or so up the road, trotting along in her orange bathrobe.

In both of these cases, a monitoring device would have been a great help.  Mother could have found Auntie sooner.  Our friend might never have died of exposure.

Discussion in this article presents many pros and cons of these monitoring devices for the elderly and dementia afflicted

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Should Alzheimer’s Patients Be Electronically Tagged?

Should a family member receive payment or some type of compensation when caring for a parent with a disease like Alzheimer’s?  Some people would say, “Absolutely not!  They should do it out of love.”  However, often the sibling or relative stating this doesn’t want to interrupt their life to be a caregiver.

In other instances, family members would realize the amount of work and often sacrifice of job and family life that is involved.

What do you think?

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Should Family Caregivers Be Paid?

“Lights out” time came to mind when an elderly gentleman mentioned he could no longer stay up until 2 A.M. doing genealogy research or writing at his computer.  He now lived with a daughter and her husband who insisted on “lights out” at 11 P.M.  When he visits another child, her husband wants the lights off by 10 P.M.

When my mom was still in her home, she was up and down all night.  However, when she began to wander outside at night and early morning, no matter what the weather, I had to move her to my home.  I tried not to let her nap too much during the day so she’d sleep at night.  After a certain point,though, this didn’t even work because her conception of night and day, light and dark seemed no longer to exist. 

In the early days, though, as long as they’re not wandering outside but staying occupied at some task or hobby, wouldn’t it be easier for everyone if the Alzheimer’s patient had control of “lights out” time in their room?  Sometimes, too, you need a dim light on in their room so they aren’t frightened or can see if they decide to get up.

The frustrating part is when they do get up during the night, open the refrigerator, take all the leftovers out and make a meal for the cat.  One night I woke from a doze (you don’t sleep soundly when caring for someone with Alzheimer’s) and discovered Mother and her cat enjoying a feast of leftovers. 

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When Do You Insist on “Lights Out” for Alzheimer’s Patients?

This isn’t an easy decision.  Most of the time there isn’t a convenient answer.  Families usually aren’t set up to care for someone in their home.  Perhaps both work outside the home.  There may be children to consider.  And the increasingly dependent person wants to remain in their own home.

However, at some point, a person with Alzheimer’s or other type of dementia, cannot continue to live alone.  When my mother slipped out of her house one cold, snowy morning while I was visiting, I knew I certainly couldn’t leave her there alone.  Even though we were planning eventually to bring her to our home in another state, Jim and I knew the time was NOW.

So we had to make arrangements immediately, since I didn’t have anyone who could be with her full time.  Even with me there, she’d slipped out to look for her cat while I was sleeping.

I’d left her in her home longer than was convenient for us (since we had to travel 275 miles to care for her) because of sibling pressure.  However, Mother’s safety, not other’s desires, had to be the focus now.

Current discussions, at the Caring for Elderly Family Members group (http://groups.msn.com/CaringforElderlyFamilyMembers ),about when and how to move a family member from their home, brought this topic to my mind again.  I realize the situation and decision is different for everyone.  Getting input from others who have been through it or are going through this challenge often helps. You know you’re not alone.

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Alzheimer’s Patients Living Alone – When to Move Them