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My subject for today is not directly related to Alzheimer’s disease.  I am concerned about families who may have a loved one being treated for depression, for some form of mental illness, or even frontal temperal dementia who may find themselves in an emergency situation where their loved one is in harm’s way for having stopped taking their medication or who may have never sought medical care in the first place.

Though it has been 55 years since a particularly stressful time for my family, I remember those days in late May of 1960 as though they were yesterday.  Our dad had experienced depression and was having great difficulty fulfilling his responsibilities as a United Methodist minister.  His doctor recommended he take some time away to rest for a few weeks, perhaps to the seacoast where he might relax and renew his spirits.

Though money was tight, our mother was in favor of the trip.  And so our dad took a bus the 400 miles to the South Carolina coast where he stayed at a B&B our family had enjoyed the year before.  He had been gone less than a week when the B&B owner called my mother to come get him, that she could no longer keep him as a guest.

I had just gotten home from my first year in college when the call came through.  That very day my mother, 12-year-old brother, and I quickly packed a few things and headed for the coast.  In those days my mother did not have a driver’s license, so the driving was up to me.  We did not stop, driving all night, and pulled into the B&B around 8 the next morning.

Our dad was totally out of control.  I remember how distressed and helpless we felt, not knowing where to turn.  After a couple of days of unsuccessfully trying to coax our dad to come home with us, our mom finally called our dad’s brother in Virginia, who hired an ambulance.  An emergency physician was picked up from the local hospital to administer a powerful sedative to get our dad back to Virginia where he received treatment at a psychiatric hospital.

I now know our dad was suffering at age 46 from frontal temperal dementia.

Recently when a friend confided in me her distress regarding the well being of her adult son, who suffers from mental illness and lives away from home in another part of the state, I remembered how it was for our family when my dad was ill.

A state licensed physician specializing in psychiatry in our city has this recommendation for families who may have a loved one in need of emergency psychiatric care who will not seek help voluntarily:

The family can call their county Probate Court and ask for the Mental Health Desk, who can advise regarding the next step.  If there is an agency like Netcare, then the family can call them and request a Prescreener to go to the patient’s residence and evaluate him or her for possible hospitalization.

As an alternative the family can file an affidavit of mental illness with the probate judge.  If the affidavit is accepted, the judge will authorize the sheriff to pick up the patient and take him to an emergency room or other screening facility for evaluation.

I am sorry to be unable to make any suggestion for readers living outside the United States.

A Long Distance Hug

At this time of year with spring in the air, I am remembering how my mom loved this season.  In Tennessee back in the 50’s she would have already planted the vegetable garden and we would be enjoying spring lettuce, radishes, and onions.  If I think about it, I can yet smell the freshly painted bedroom from that spring of 1954 when we were expecting family to visit from Virginia.  This was not an easy time to have company or to be painting rooms, as my mom and dad were caring for my younger brother, who was recovering from several weeks spent in the hospital with a newly diagnosed heart condition.

Besides her many cares my mom saw to it that I had a new dress to wear that Easter (which she made).  A few years ago when organizing household things after her death, I discovered hundreds of dress patterns saved over her lifetime for outfits she had made for me and for herself.  Even after she was unable to sew anymore, she would each spring slip a check inside my Easter card to go toward something special.

It wasn’t just the clothes.  Our mom and dad saw to it that my brother and I had the best dental care available in those days on a pastor’s salary.

Today I am especially remembering those loving acts, as I am to be fitted with hearing aids.  I have chosen to use the funds for this expensive purchase from my share of my mother’s modest estate, feeling again loved and cared for as I used to.

As a caregiver give yourself a hug by remembering some special way your loved one had of showing their love for you in the days when they were able.

As many of us caregivers realize, reaching the point when we can no longer safely care for a loved one at home and entering that loved one in managed care can be a gut wrenching decision never taken lightly. Actually, we may hold on much longer than is good for either our loved one or for ourselves as caregivers.

As the movie “Still Alice” captures an Oscar for its fictional portrayal of Alzheimer’s effect on a woman and her family, I would like you to view a video about a man who opens up about his feelings the day his memory-impaired wife moved into a dementia care community in this real-life story.

Click to view An Alzheimer’s Love Story: “First Day of the Rest of My Life”.

Appreciation is extended to Scott McCaskey and Silverado Care for bringing this video to our attention. For more information go to http://www.silveradocare.com/johnandkerry.

Life Changes

Dear Readers,

Since my last writing a dear friend has slipped away, the one I have told you about from time to time, the one I enjoyed taking in her wheelchair for pizza outings whom I could trust in confidence with anything.

It happened two days after Christmas.  She had enjoyed breakfast in the nursing home dining room and was in good spirits I was told.  Within the space of a half hour she was gone.

It had been three weeks since our last lunch, and holiday preparations for family arriving took precedence for my time. I kept getting inner nudges that I needed to go over if only for a brief visit, but I did not make it.

Life is what it is. I would have appreciated one more visit.

Her sons brought me into the intimate family circle to be a part in planning her memorial service. However, early on the morning of the day of her service my husband awoke with a paralyzed right side. He was having a stroke.

I called 911. Our EMS arrived within minutes and rushed him to the hospital where he was able to receive in time the special ‘clot-buster medication that brought the feeling back to his limbs.

Both experiences have impressed upon me ever again the preciousness of life and its opportunities.

Stuck

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)

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