How does one negotiate change in a family system that no longer works?  I want you to know about a close relative of mine, who is the sole caregiver of her 90-plus-year-old mother, who now suffers from dementia.

The living arrangement worked for many years.  The mother, a single parent, worked throughout her active years and later retired but with only a social security check as income each month.  Her daughter became a teacher in the public schools, never married, and eventually built a home on family land for herself and her mom to enjoy.

Family gatherings in their home were much looked forward to, with both mom and daughter excellent keepers of the family cooking traditions.  I guess, myself included, we thought it would always be this way.

But then the mom’s memory for her special recipes began to fade until eventually the daughter had to pick up the slack for dishes her mom was known for – the baked chicken and dressing, the fresh cocoanut cake, the sweet potato pudding… and on and on.

The one brother who lives nearby stops by to visit.  The second brother, living hundreds of miles away, calls every day.  However, I believe neither has a clue about what really happens behind the scenes – the bed that usually needs fresh linens each morning, the constant vigilance to make sure their mom doesn’t unlock a door and walk out into the night or worse yet fall down the basement stairs, care to make sure the family cats are not fed birdseed instead of their own dry food.

A home health aide does come 25 hours a week to provide some relief for my cousin to get to the grocery and run errands.  But the bottom line of making sure the correct meds are in proper supply and taken at the prescribed times, the running of the home, and meal preparation fall to my cousin.

I have a feeling I am describing a lifestyle that many of you are only too familiar with.

I remember how it used to be when our mom was residing with me in our home in Ohio.  I treasured the moments of solitude, usually late at night, to carve out a bit of alone time.  The respite breaks provided by my brother kept me sane during that year and a half.

Which brings me to offer a suggestion for your gift giving at this special time of year.  A gift of time might just be the best gift you could offer to a caregiver friend.

How about taking that friend’s mother or father out for ice cream or a lunch once in a while if the elders are able.  For my friend who resides locally in a nursing home, once a month on the average we head out on foot, with her in her wheelchair, up the street to a pizza parlor for lunch – even when the weather is less than perfect.  (I just ask for a couple of blankets and out we go!)  The best part of this is not having to ask nursing home aides to lift her into the car.

And for the cousin out of state, a couple of times a year I make the trip and stay a few nights with her mom, making it possible for the cousin to leave town for a day or so.  Will her older brothers catch on – maybe so and maybe not.  What matters is knowing I am helping out a little and also enjoying one-on-one time with a precious aunt.

As you know, caregiver health can break down from stress.  The relief you may be able to offer, if only for a few hours a month, will be most surely appreciated.  And for a caregiver just the realization that he or she is being kept in regard can do wonders for the spirit.

One of my major concerns for our mother in the early days of her dementia was making sure she was taking her meds at the proper time in the prescribed dosages.  Being remote caregivers, my brother and I had a huge problem.

I am writing today to encourage your visit to ALZCOM (www.alzcom.com), a simple and free Internet-based way to gently remind a dementia patient of daily tasks, events and appointments. It is purported to work on any device that has a modern browser, iPad, Android tablet or “cousin Bobby’s old laptop.”  I can imagine this form of communication as being beneficial for a loved one with a mild form of dementia.

Ralph writes, “My partner and I have been using the ALZCOM prototype since 2013 – he in his home with his wife of over 40 years and me remotely with my mother in her home in Berlin, Germany.  Both are suffering from Alzheimer’s disease and both his wife and my mother have had great success with the ALZCOM prototype; but now we need help in order to further develop the solution.

So I’m writing you today to ask for your help in generating feedback for us. We are looking for as many caregivers as possible, along with the loved ones they are caring for, to use the site as early testers so we can get a better idea of any bugs, response times as well as suggestions for improvements. 

The site is free and we want to keep it that way, without advertisements, and we will not share user information. Thank you for your consideration.”

Feedback and questions regarding ALZCOM should be addressed to rj@alz.com.

Alzheimer’s Identity Book

As dementia deepens, your loved one may gradually lose the memory of family and even the identify of self and who he or she was during active, productive years. I would like you to know about a project that young Evelyn Jackson has undertaken to create photo books meant to help Alzheimer’s patients and their families to cope with the disease as it progresses.

Evelyn, working on her Girl Scout Gold Award, has created a brochure of clear, simple, step-by-step directions for making an “Alzheimer’s Identity Book” for your loved one. I especially like her suggestions about what photos are most meaningful and how to proceed with simple captions or descriptions easy for your loved one to follow. The making of the Identity Book for a loved one can become a fulfilling activity for family enjoyment.

Thank you, Evelyn, for sharing this excellent resource! To access the Alzheimer’s Identity Book brochure, click on the link below:

EJackson Identity Book_single pages(F)(1)

Are you having to watch your loved one’s financial resources melt away toward care expenses? Have you desired information to be proactive in planning ahead to preserve your loved one’s hard-earned savings? I very recently learned about InsuranceLibrary.com. and want you to have this timely information provided by Founder Justin Blasé.

Expert Answers To Your Alzheimer’s Related Insurance Questions

Have you ever wondered how having Alzheimer’s disease might impact your ability to get life insurance? How about whether or not Medicare is able to cover nursing home care for those impacted by Alzheimer’s disease?

InsuranceLibrary.com is a website that has set out to provide free, professional assistance to those that need to know the answers to these questions and others. Insurance Library was launched in the spring of 2013 and it serves as an online knowledgebase of the most commonly asked consumer insurance questions – and the answers to these questions are provided by licensed insurance agents.

The website has over 20,000 answers to insurance questions – covering a range of topics from health insurance, life insurance, Medicare, long-term care, disability and even property & casualty insurance.

This past spring, Insurance Library rolled out a new section of the site dedicated specifically to insurance questions related to Alzheimer’s disease – which serves as an excellent resource of information for any person or family that is impacted by the disease.

Additionally, if you cannot find the answer to your questions within the knowledgebase, you can easily ask your own question at no cost – and a licensed insurance professional will typically answer the question in less than 24 hours. You can even be notified by email when answers to your questions are posted.

What questions do you have related to insurance and Alzheimer’s disease? Head over to http://www.insurancelibrary.com today to browse the existing Alzheimer’s topics, or ask your very own question.


Justin Blase
Founder, InsuranceLibrary.com

It all began for me with pre-admission testing prior to scheduled thyroid surgery a few weeks ago. When my doctor was going through her list of questions at my exam, one of them was, “Do you snore?”

At that I let out a brief laugh, remembering the night before my younger granddaughter Nikki remarking to me, “Grandma, you’re snoring!” So I had to answer that, “Yes, I guess I do.” (And over the years my husband has remarked about same.)

My doctor was not smiling when she responded, “Pat, you are going to have to pass a sleep study before I can okay you for surgery.” I was told that older people with sleep problems sometimes endure complications arising from undergoing anesthesia.

I had less than a week before the surgery date and time was of the essence, so I went full speed ahead to get scheduled for the sleep study. My doctor’s staff went the extra mile on my behalf to get me in with a private sleep medicine practice the following evening.

Here is how it went. After a lengthy consultation and gathering of medical history in the afternoon, I reported at the sleep study lab that evening around 7:30, bringing with me pajamas and toiletries for the night. A pleasant nurse/tech showed me to my ‘bedroom’ and had me dress for bed. My first thought was how in the world was I going to be able to fall asleep at 10 in the evening, when my normal bedtime is not before midnight. Then and there I began to feel a bit uneasy.

The next step was being taken to an examining room where I got my first glimpse of the many electrodes that would soon be attached to my head and body via a gooey glue paste. The wires were attached to a board that would enable mobility, should I need to get to the bathroom during the night.

I was given an hour or so to ‘relax’, sitting at a desk beside my bed and thumbing through some very out-of-date magazines. Around 10 the tech reappeared, asking me if I were ready for bed. (I really felt more like running around the block a few times than hopping into bed.) But I answered, “Okay.”

I was told that the monitoring equipment was down the hall, but I could call my tech’s name at any time and she would hear me. To pass the test I was told I had to have 15 or fewer breathing lapses during sleep. And should I go over the 15, I would be immediately placed on a CPAP machine for the remainder of the night.

CPAP stands for continuous positive airway pressure. Its function is to provide a continuous mild air pressure to keep an airway open, typically used for people who have breathing problems such as sleep apnea. I was told the CPAP is the most effective treatment for obstructive sleep apnea, which I now know I have.

I had absolutely no idea I had this condition until I undertook the sleep study. However, I do remember my mother’s interrupted breathing and my tensing, waiting for her next breath.

Getting back to my sleep study experience, once the light was turned out, my room was pitch black except for the red outline of the video camera trained on my head. Even though the bed was most comfortable, sleep would not come. How does one fall asleep on command?

After a half dose of Ambien, calling for a glass of milk, and consuming a few munchies I had brought along, mercifully I did drift off around 2:30 or 3:00, I learned. When I awoke sometime around 6:00, I realized I was not wearing the CPAP mask and felt good, believing I had passed.

But around 3:00 that afternoon I learned from the sleep doctor that I had a very poor showing, averaging 45 breathing lapses per hour and a blood oxygen reading down in the lower 60s. My doctor was not going to certify me for surgery; and what more, I had not slept long enough to try out the CPAP machine. Hence, I was scheduled for a redo of the study the following week.

I went through the second night of sleep study four nights ago, using the CPAP the entire night. Again, falling asleep was a challenge. This time, however, I had an average of only 18 breathing stoppages per hour, but my oxygen level fell again to the low 60s. Yesterday I met with the sleep doctor to discuss the second study results.

I was told that wearing the CPAP did help. I will be given a CPAP machine. It will be calibrated to run on Auto — that is, the air pressure will increase automatically as my breathing need warrants. My oxygen reading will also be monitored at home for a couple of days. Should I need it, I will receive a CPAP that also delivers oxygen.

You may be wondering why I am going into such detail about the sleep study. Since all of this began, I have learned that recent research suggests that ongoing sleep deficits can take a considerable toll on the brain.

From the article “Sleep Well” by Amy Paturel, M.S., M.P.H., appearing in NEUROLOGY NOW (Feb/Mar 2014) I read that, “Recently, scientists have started to link longer waking time with increased risk of cognitive impairment and a higher risk of developing Alzheimer’s disease.”

From the same article I read that, “In a 2009 study of mice published in the journal SCIENCE, researchers found that sleep deprivation increases the concentration of harmful plaques in the brain.”

Further quoting from “Sleep Well” in NEUROLOGY NOW (Feb/Mar 2014), “For centuries scientists and philosophers have debated what our brains do during sleep. Now, for the first time, researchers have solid evidence that a good night’s sleep may literally clear the mind. In a study published in the journal SCIENCE, researchers found that the space surrounding brain cells — called the interstitial space — may increase during sleep, allowing the brain to flush out toxins that build up during waking hours. Previous research shows that proteins linked to neurodegenerative diseases, including beta-amyloid, build up in the interstitial space.”

According to Dr. Adam Spira, Ph.D., assistant professor in the department of mental health at the Johns Hopkins Bloomberg School of Public Health in Baltimore, MD, “These findings provide a potential mechanism for the link between poor quality sleep and greater cognitive impairment,” (again quoting from “Sleep Well”, NEUROLOGY NOW from Feb/Mar 2014).

Same article, quoting Dr. Rashid Deane, Ph.D., research professor in the department of neurosurgery’s Center for Translational Neuromedicine at University of Rochester Medical Center in New York, “The restorative function of sleep may be due to the switching of the brain into a state that facilitates the clearance of waste products that accumulate during wakefulness.”

Again, credit for the article, “Sleep Well” in NEUROLOGY NOW from Feb/Mar 2014 goes to Amy Paturel, M.S., M.P.H. I hope you will access this article and do further looking on the relationship between sleep deprivation and buildup of beta-amyloid.

How many of us have sleep apnea and do not realize its possible ramifications!

As most of you know, one of the big issues for our loved ones who are dealing with dementia/Alzheimer’s is a problem with balance.

Falling is a terrible hazard for people affected by dementia. My mother had numerous falls. She was living independently in her own home in rural Virginia. One particular time she fell at the edge of the driveway. She was wearing her Alert necklace at the time but could not process that she could press the button for help. She yelled as best she could until her sister down the hill could hear her.

Another time she fell taking some food scraps to the edge of her woods (yard). Calling was to no avail. She crawled to the house several yards. It goes on and on. One time I happened to be visiting her and she lost her balance within feet of me. I could not reach her in time. While visiting my brother she lost her sense of direction during the night, trying to find the bathroom, and fell, breaking her hip. That was the end of her ability to walk and the beginning of life in a nursing institution.

I would like to share with you some timely tips on preventing home accidents, which I have obtained from Dr. Mario Trucillo, Managing Editor at The American Recall Center.  Dr. Trucillo writes:

“Did you know that falls are the second-leading cause of unintentional death? Not many people do. Since June is National Safety Month, we’ve made it our mission to educate and encourage safe behavior with hopes to help prevent slips, trips, and falls. In doing so, we’ve created a graphic that outlines a few simple tips on how to prevent these type of accidents from occurring.

You can read more about it here: http://www.recallcenter.com/prevent-slips-trips-falls/

Together we can limit safety hazards and encourage healthy living among our friends and loved ones.”

The flurry of Christmas preparations and family visits just over, my husband and I made a trip to Cleveland, Ohio for overnight just after New Years 2007.  We had enjoyed a terrific concert by the Cleveland Orchestra and splurged with a lovely meal and night’s stay at Stouffers. 

The call came early next morning.  Now, my aunt rarely if ever called me and certainly not early on a Sunday morning.  Her voice was urgent and her words were serious.  “Patsy, your mom overdosed on her medicine again.  Our family can’t keep going on this way, worried about her and trying to take care of her.  She needs more than we can give.” 

I remember thinking after that call my life as I knew it was about to change.  My step up to the plate was about to begin. 

On February 1st of that year we brought my mother back with us to Ohio.  I must say I did not know what lay ahead or how we would manage.  But day by day, sometimes hour by hour, we managed.  This was in part thanks to caring support of a neurologist who specialized in gerontology and an Alzheimer’s support group that I attended each week plus respite breaks provided by my brother.

I have never mentioned much about my husband in the care-giving arena.  He was enjoying his retirement and happy with life, pursuing a hobby of ancient history.  Characteristically impatient and sometimes with a short fuse by personality, he could have been a big problem in this new threesome. 

However, he never hesitated when I broached the subject of my mom coming to stay with us.  Over time I was deeply affected by his gentleness and general good company to my mom over the year and a half that she resided with us.

We care givers, I believe, become a bit more sensitive and perhaps more empathetic to friends and family going through similar experiences.  This adjustment, sometimes very sudden, that may require more than we ever thought we could give, I am going to call “stepping up to the plate.” 

I want you to know about two families that I know, who have encountered their own challenges in this area.  The two sons in Family A are both fully employed.  One is single, having moved back home from another state to be with his mom after his father passed.  Living in the home, he has been an eye witness to the gradual changes in his mother that required more care and supervision. 

Since his mom is a good friend of mine, I have seen him stepping up to the plate, gradually modifying the way he communicated with his mom – developing his own way of heading off conflict.  His brother, who at first hedged against too much interaction, gradually came to see that his brother can’t shoulder everything alone and then stepped in for emergencies.  There were many trips to the emergency room for their mother’s chronic respiratory problems.  As time has passed, the second son (who has a family) has also stepped in to support his brother and mom.  The brothers are now a team.

The second family, I will call Family B, a mother and her three adult children.  The daughter in this family has lived with her mom all her life except for a few years.  She has gradually assumed the full care of her mom, who has been slipping into dementia over the past two years.  She has part time assistance from Home Health for her mother four days a week. 

For the daughter to assume her mother’s care has been comfortable and seamlessly normal for her brothers.  Her one brother lives a fourth mile away and will sit with his mom for a couple of hours at a time.  After a few hours, however, he starts calling his sister, asking when she plans to be home.

Her second brother lives out of state and comes once a year for a visit.  This leaves the daughter with no easy options.

What can other family members or friends do, who want to help. One option can be to step in for a few days, shooing the daughter out of the house for a much needed respite. Will her brothers step up — to be continued.


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