Tag Archives: dementia

Victories in Caregiving

This Magic Moment.

Mary's July Visit to Redmond 010The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.

Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable.  Sometimes the unpredictability brings heartache and extreme difficulty.

However …

sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty.  Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.

Caregiver Coaching Services

via Desonier Caregiver Coaching Services.

Click on the link above to read about one man’s journey from spousal caregiver to professional coach of those who are caring for loved ones with Alzheimer’s or other dementia.

My hero - my father: 1918 - 2007

My hero – my father: 1918 – 2007

During my time of caregiving, (my father died in 2007 from complications relating to Alzheimer’s disease) I oftentimes sought out the advice of anyone I could get my hands on who might a) lighten the emotional load I was carrying; b) lead me in the right direction when looking for next steps in the caregiving process; and c) let me cry a river as I pondered whether I was doing enough for the one for whom I provided care.

Way back when I was enmeshed on my caregiving journey, I was not aware that this type of coaching service was available – perhaps it wasn’t.  What speaks volumes to me is that the prevalence of Alzheimer’s and other dementia is such that more and more people seem to be adrift and searching for that beacon of light that might pull them safely to shore.

One thing I know for sure, however, is that if it takes a village to raise a child, it certainly takes at least that when trying to take care of a cognitively challenged parent, spouse, sibling, partner, or friend.

Driving Under the Influence of Dementia: Part 2

STOP signI addressed some of the issues of Driving under the influence of dementia in an article I wrote in November 2013.  Back then I hadn’t planned on writing a Part 2 for this article, but after a couple local incidents involving DUI of dementia, I must provide the following.

Yesterday afternoon in a suburb of Seattle (in Bellevue), an 89-year old woman with early stage Alzheimer’s left her house for her normal daily routine of going to her favorite pancake house, then to several retail locations.  She never returned home last night and as of today, she is still considered missing.  I hope the outcome of her case is better than that of another elderly person with Alzheimer’s who also went on a brief errand, but never came home.  (Update as of 12/28/13 6:45 pm: this woman was found safe approximately 16 hours after she first left her home.  She was found 20 miles away from home.  Unfortunately, she wandered 20 miles away from her normal driving area.)

On Saturday, December 21, 2013, Joseph Douret left his Seattle area home (in Issaquah), to grab dinner.  He was reported missing the next day by his wife who stated that he never came home the previous evening when he left to grab some dinner for the two of them.  Mr. Douret, who was suffering from Alzheimer’s, was found dead in his vehicle on Christmas Eve.  Police indicated that he appeared to have died of natural causes.

Taking away the keys to a vehicle – or getting rid of the vehicle as need be – are both very difficult tasks, but these are tasks that must take place if a loved one with dementia still has access to their automobile.  “But he/she is only driving a few blocks to pick up a couple items; there’s no way he/she will get lost.”  Unfortunately, what should be a routine drive can become a death journey because nothing is routine for the person with a brain addled by dementia.  Nothing looks normal or familiar;  the anxiety ratchets up several notches; panic sets in; and the countdown begins for that person’s last hours of life on earth.  Even if the person is eventually found safe, he or she will have endured a very uncomfortable time emotionally and physically.  The positive outcome of that incident, however, is that it will most likely be the catalyst that spurs people on to remove all driving options from their loved one.

Please make the decision today to take action and do the responsible thing on behalf of the person with Alzheimer’s or other dementia.

Driving under the influence of dementia

It’s the not-so-new DUI that is becoming as rampant as are the increased incidences of Alzheimer’s disease in the world.

RIGHT TURN 15 mphImagine, if you will, being cognitively impaired and trying to maneuver through streets, highways, and the like.  Ever been in an unfamiliar city trying to find your way around?  You slow down, trying to read the street signs while at the same time glancing at either the GPS in your car or your printed-out directions that you’re trying to balance on your lap.  Suddenly you find the street you need but you’re in the wrong lane so you hastily drive to the far right lane so you can make the turn, cutting off – and pissing off – everyone who was subjected to your erratic driving.   Now multiply that by 100 for the person with dementia whose reaction times have slowed down, but the traffic has not.

Are you enabling someone in your family by not having the difficult, yet necessary, conversation about driving safety?  “She only uses the car to drive to the grocery store, eight blocks away.”  Oh, is that all?  Well then, nothing could possibly happen that might harm/kill her or harm/kill another innocent driver or pedestrian, or child on his bicycle zooming out of a driveway and into the street.  Right?

In the attached article, Driving with dementia: the dangers of denial,  I go into detail about the hazards inherent with driving under the influence of dementia, so I won’t repeat its content here, but I encourage you to take the time to give it a look-see.  I’m readdressing this issue because of what I witnessed today:

  • A car making an unsafe switch of lanes, barely missing the huge SUV in front of which she maneuvered her car;
  • Then I witnessed this SUV – certainly not understanding the circumstances surrounding this affront to his driving – quickly passing the woman and doing the same to her as had been done to him – abruptly changing back into her lane with nary a few inches to spare between his back bumper and her front bumper;
  • Now I’m behind the impaired driver who stops suddenly at an intersection (we have the green) and she puts her left hand turning indicator on, only she’s not in the left hand turn lane – she’s in the through lane and she’s risking a multiple-car pileup by her actions.  I could not move to the left or right to avoid her so I laid on the horn and fortunately, she proceeded straight ahead, not making her left turn;
  • Further down the road she managed to get into the left-hand turn lane and as I passed her, I clearly saw an impaired and confused woman in her 70′s who appeared unaware of where she was or where she was going.

I was in no position to follow her to assure that she was okay, but I did throw up a prayer that she would get safely to where she needed to be – without harm to anyone else as well – and that her family or someone close to her would do what was necessary to take away her car keys.

Denial about this issue doesn’t solve anything.  Please make the decision today to remove the keys from a person who absolutely should not be driving because of his or her dementia.

You just may save someone’s life.

Sex in long-term care dementia units

Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike.  The attached article is well-worth the read, and I have a few comments of my own to add.

English:

(Photo credit: Wikipedia)

I acknowledge that sexual activities most likely occur in every long-term setting out there.  Consenting adults – even those with varying degrees of dementia – need touch and physical connection.  I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection.  In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip.  Or perhaps a hug and a kiss are involved.  All of these actions are perfectly innocent without harm as long as all touching is consensual.

Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.

What about those patients who are already married to someone else?

English: Gender symbols for homosexuality (les...

(Photo credit: Wikipedia)

It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one.  The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment.  (I think it’s important to not assume that adulterous motivations are in play here.)  Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.

I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet.  And you don’t have to agree with what I’ve stated above.  The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.

One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.”  The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs.  There are no completely right or completely wrong answers.  I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject.  I take comfort in that fact.

Putting a face on Alzheimer’s

One Son, Many Voices – An Elegant Video About Alzheimer’s & Dementia.

The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved.  The toll on the patient – measurable, as you will see in this Shapiro family video.

The toll on the family – especially those caring for a member with the disease – beyond measure.  Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self.  Can you imagine it?

Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.

If you can help monetarily, please do so: www.alz.org.

If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.

Whatever you do, please do something to make a difference.

Alzheimer’s disease is expensive

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.

My father and my sister-in-law, both of whom have died from Alzheimer’s disease in the past five years.

According to the World Alzheimer’s report:

If dementia were a country, it would be the world’s 21st largest economy, ranking between Poland and Saudi Arabia.  In the year 2010, the total world cost for caring for the dementia population was $604,000,000,000 (billion).

By 2050, in the United States alone, the costs for caring for the dementia population will be: $1,200,000,000,000 (trillion).  That’s more than 1,000 x $1 billion.

Are you thinking of making any charitable contributions to a worthwhile organization before the end of the year?

Consider: www.alz.org or www.alz.co.uk

Alzheimer’s disease is a murderer

and I’m as mad as hell about the millions of crimes that it has gotten away with.

Alzheimer’s and other dementias are unfair to the one diagnosed and to all those involved in that person’s life.  The unfairness unfolds with the worst day of that person’s life – diagnosis of a disease for which there is no cure – therefore it is always fatal – and it is a disease where little progress has been made in treatment options.

Let me introduce you to two fabulous people who are no longer with us because this disease killed them.  Yes, Alzheimer’s murdered them.

My hero - my father: 1918 - 2007

My hero – my father: 1918 – 2007

My father, Don, was born in 1918 in Toronto, Canada.  He married my mother, Patricia, and they had three children.  They became U.S. citizens in the late 1940′s/early 1950′s.  My father was an extremely distinguished, courteous, humorous, and dedicated family man.  He received his Alzheimer’s diagnosis on June 3rd, 2005 and I was there by telephone conference, having attended his initial neurological evaluation a couple weeks earlier.  He died at approximately 12:10 a.m. on October 13th, 2007.

Nancy, an adoring daughter-in-law to my father, seated in front of her.

Nancy, an adoring daughter-in-law to my father, seated in front of her.

My sister-in-law, Nancy, was diagnosed with mixed dementia just a few months after my father died.  Nancy was born in 1942 in Quincy, Massachusetts.  She graduated from UCLA with a degree in flute performance and used those skills in many venues throughout her life.  Nancy had three children from her first marriage – children of which she was very proud.  Nancy was an extremely talented interior designer, opening her own design business in 1987 – the same year that she married my brother, Don.  Nancy died from mixed dementia, that also included Alzheimer’s, at approximately 11:05 a.m. on July 4th, 2012.  Just two and a half months later, my brother and sister-in-law would have celebrated their 25th wedding anniversary.

Saturday, September 21st, 2013 is World Alzheimer’s Day.  One in every three seniors dies with Alzheimer’s or other dementia.  If you do not die from Alzheimer’s, you die with it.   From Alzheimer’s Association 2013 Facts and Figures.

Won’t you consider making a monetary donation in the hopes of capturing this murderer?

U.S. website for the Alzheimer’s Association: www.alz.org

International website: www.alz.co.uk

Other countries have their own dedicated websites as well.  Please find those sites through any search engine you would normally use, and let’s slap the cuffs on this criminal disease.

Coffee is not hydration

Dehydration and Dementia.  The attached article is a very thorough look at the importance of hydration in the elderly, and how to assure that a person with dementia – who may no longer feel the thirst response and/or does not know how to express his or her thirst – is properly taken care of.

in a hike

(Photo credit: Wikipedia)

My husband and I went for a hike last summer during which we encountered a gentleman who I would guess was in his early 80′s.  It was a warm, muggy day and my husband and I each had a 20 oz. bottle of water for our 3-mile hike.  The gentleman was reviewing his hiking map and we stopped to chat with him about the fork in the road and which path lead where.  “Sir, do you have a bottle of water that you can drink while on your hike today?”  “No – not needed; I have a thermos of coffee waiting for me back at my car.”  “I wonder, sir, with it being so hot and humid, if you might benefit from taking one of our bottles of water.  I would be happy to give you one we’ve not used yet so you’ll be comfortable.”  “That’s very kind of you, but I’ll be fine.”

So he went on his way but I told my husband I wasn’t comfortable with this fellow being on his own and could we please follow him at a distance to make sure he gets back to his vehicle.  And so we did – and he returned to his vehicle, and no doubt partook of his thermos of hot coffee.  Not very refreshing.

Coffee cup icon

(Photo credit: Wikipedia)

Although hot coffee and tea certainly contain water as part of their preparation, straight water – or even fruit juice – are a better option because of their lack of caffeine.  Years ago, when I would visit one of my aging family members, you could always count on him holding that quintessential cup of coffee in his hand throughout the day.  Regardless of the weather – no glass of water reached his lips – except perhaps when he took his daily vitamins or medications.  This message is directed to those who provide care for the elderly, those who have older family members, and perhaps this message is also directed towards you.  Drink good ol’ H2O.  It doesn’t have to be packaged in a fancy bottle, you don’t have to purchase it, it’s always available at the touch of the nearest faucet, and you can access 100% water faster than making a pot of coffee.

What are you waiting for?  Go get a glass of refreshing water!

Dementia: a shortened good-bye

Dementia and Suicide.

The attached article, written by a blogger in the UK, is straight-forward and thought provoking – it should be.

I live in Washington state, and I am glad that Death with Dignity is a legal option assuming all the legal requirements are met.  This is a very personal subject matter, as is the choice that individuals will make to seize the opportunity, or to reject the opportunity.  There is definitely a separate element of this option when the law is utilized for those with dementia. When is someone still capable of making the decision?

A non-profit in my state, Compassion & Choices of Washington, is an excellent resource for materials and information. They have even developed an Alzheimer’s Disease and Dementia Mental Health Directive – a first-of-its-kind directive that allows people – while still competent – to document their wishes related to who will provide their care, where care will be provided, how it will be financed, how to deal with difficult behaviors that may arise, and many other matters that both caregiver and patient face.  Bless all of you who face this horrific disease that has no effective treatment, and certainly no cure.

Evil undercover: Alzheimer’s, Abuse, and the Elderly

Alzheimer’s and the Elderly.

I’m attaching the above article from a fellow blogger.  He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being.  The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.

Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens.  Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities.  Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.

Worse?  Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse.  I know that you and I are quick to say, “Fantastic!  What a great relief that would be if the person no longer lived with his or her abusers!”  We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings.  These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.

These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me.  Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.

That makes me mad.

The New Yorker Magazine Talks About Dementia

The New Yorker Magazine Talks About Dementia.

I’m thrilled about the above Blog article that just happens to have been posted today, my 60th birthday!  There is a lot of substantive content in my fellow blogger’s posting: a link to a New Yorker Magazine article by Rebecca Mead, titled A Sense of an Ending; Phillip Toledano’s photographs of dementia; and, of course, the Blogger’s own contribution to the topic.  The aforementioned blogger, Kathie Ritchie, maintains an exceptional blogsite, http://www.mydementedmom.com.

I hope you’ll visit all of the above – and be better off as a result.

The Morning After

The Morning After: Caregivers Experience of Loss and Their Struggle for Identity.

Morning face

(Photo credit: Wikipedia)

Perhaps you read the brief title of my article and before delving into its content you’re wondering: The morning after a night of drinking?  The morning after doing something regretful – perhaps synonymous with the previous question?  The morning after a horrific news event?

None of the above.  In the attached article, a fellow blogger writes about his experience of waking up the day after his wife passed away; a day in which he felt the full impact of the loss of his wife and the cessation of his role as her caregiver – his identity for so many years.

Unless, and until, you experience this type of blurry identity, you can’t fully understand the feeling.  Those of you who devoted any amount of time caring for a loved one prior to their death understand all too well the emptiness and lack of purpose that oftentimes follows the end of the caregiving journey.

I was the long-distance caregiver for my father after he was diagnosed with Alzheimer’s disease.  He lived in a memory care unit of a Southern Oregon continuing care retirement community (CCRC) while I commuted from Seattle by plane, by telephone, and by 24/7 worrying and thinking.  By choice, I left my full-time job and for the next four years, dedicated my time to managing his care and being the primary on-site visitor.  Many of you worked full-time at your “real” job while being a caregiver for a loved one and I respect and honor you for somehow juggling all of those responsibilities.  I knew my limitations, however, and reached that limit quite early in the process.  The emotional and physical toll of caregiving was more than I was capable of handling on top of my other job, so with my husband’s blessing and encouragement, we did without my financial contributions while I carried on as my father’s care person.

After my father’s October 13, 2007 death at the age of 89, I returned to Seattle having spent the last hours of my father’s life at his bedside; then several days wrapping matters up with the funeral home; with the bank trustee, and with the facility in which he had lived for close to thirteen years.  Although there would be many weeks of tying up loose ends upon my return home to the Seattle area, I was effectively unemployed – laid off from a job to which I was extraordinarily committed.  As the blogger in the attached article mentioned – those in this position wake up the day after, and the day after the day after, feeling as though they have lost their purpose.  Additionally, the identity which defined them for several years no longer applies.

Grieving and re-purposing our lives can take place during this time, a process which may take months or years; a process that is as individual and unique as ones fingerprint.  As the blogger wrote in his article, he appears to be transitioning in a way that utilizes his years of being the primary caregiver and advocate for his wife.  He’s recreating his working life; reshaping it to fit the caregiver role in which he flourished.  Like this blogger, I too quite naturally segued into employment positions in which I could continue on the path that I had started years earlier with my father: elder advocacy, Alzheimer’s Association volunteerism, and most recently, putting all of those past and present experiences down on paper in the form of a novel.

But that is not necessarily the norm.  Some of you may have felt the need to totally disassociate from anything remotely related to the caregiving or care managing roles.  I understand that decision and I agree 100% that it’s the right thing for you to do.  Again – how we recover and/or regenerate after the caregiving experience is a distinctive aspect of our ongoing lives.  What we do have in common, however, is that we have all experienced the morning after the end of our caregiving journey.  Whether we’re relieved, angered, aggrieved, or a combination thereof – the morning after is unavoidable.

In closing, I want to celebrate you – the caregiver heroes who are ordinary people, who did the ordinary right thing, at an extraordinary time.  You are a hero to many, and you are a hero to me.

Do Not Ask Me To Remember

Walk in Their Shoes… Just for a Minute.  The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.

Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us.  We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia.  If we could, we would shriek at what we see and experience.

So we get frustrated – understandably so.  We raise our voices in anger – and feel guilty immediately thereafter.  We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!

English: PET scan of a human brain with Alzhei...

PET scan of a human brain with Alzheimer’s disease (Photo credit: Wikipedia)

Do not ask me to remember is a loaded statement and one which should give us pause.  We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born?  Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question?  Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with.

Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.”  And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?

Because they don’t remember.

Wanted: new caregiving skill – mind reading.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?.

Being a mind reader would greatly benefit every parent of a newborn baby, and all caregivers of those with Alzheimer’s or other dementia.  The article attached above, by Blogger Kathy Ritchie, is a thoroughly relatable article that is raw in its presentation, but wreaking with truth because of that rawness.

Will Arnett at the premiere of Baby Mama in Ne...

(Photo credit: Wikipedia)

Reading Kathy Ritchie’s article I was instantly reminded of a line from the television series, Up All Night, wherein new parents, played by Will Arnett and Christina Applegate, fail miserably in their efforts to get their infant daughter Amy to fall asleep and stay asleep.  They try everything they can think of to address the baby’s distress: diaper changing, giving her a bottle, reading stories, making funny faces – you get the drill.  In desperation, Will Arnett finally says to his infant daughter, “We’re on your side!”

When you can’t force understanding on someone you’re taking care of, you wing it or you pull every trick out of every “How To” book written on this task of caregiving.   Yet more often than not, even with all the resources available at your fingertips, you make little headway in your attempts to meet the emergent needs your loved one presents to you.  Or what works one day (or hour) may not work the next day.  Why?  Because Alzheimer’s and other dementias are very unpredictable diseases; and people with dementia are unique individuals, equally as unpredictable.  There is no one formula for how to respond to any given situation.

As Kathy states in her article, “You have to work very hard to find the funny.”  I think many of us, given the choice, would settle for finding all the right answers and do without finding the funny – but the funny incidents are a great addition to ones day.

Caregivers of the world – you are not alone and if you need someone to tell you what a great job you’re doing, I’m telling you right now – YOU’RE DOING A GREAT JOB!!!

Your journey is filled with speed bumps and ruts in the road, but you continue on that path anyway because of your commitment to your loved ones.  After all, they had no choice in the matter when they ended up with Alzheimer’s or other dementia.  You’re both innocent victims.