Tag Archives: dementia

Helping an Alzheimer’s Caregiver

Want To Help Someone Who Is an Alzheimer’s Caregiver? Here Are Some Tips.

Attached is a very worthwhile read by blogger, Kathie Ritchie.  The article includes her suggestions as well as those of caregiver adviser, Marie Marley.  (Note: the links provided for Marie Marley appear to be broken, but Kathie includes Ms. Marley’s input within the body of her own blog article, making the content easily readable.)

Painting courtesy of Mary Riesche Studios

Painting courtesy of Mary Riesche Studios

Additional articles that will provide information and suggestions to non-caregivers on how they can help their neighbor, co-worker, besieged family member:

The above will give you more than enough material to provide readers with helpful suggestions.  If you don’t take the time to read the attached articles – and I sincerely hope you do – I’ll leave you with one suggestion that I hope you do follow:

If a caregiver doesn’t ask  for help while on his or her caregiving journey, don’t assume they aren’t in need of your assistance.  Offer specific assistance to them; don’t force them to come up with a suggestion on how you can help. 

Examples: “I have some individual frozen leftover meals I’d like to bring over for your household, what’s a good time for me to drop them off?” or “I’m headed to the grocery store, what can I pick up for you?”  or “It may sound crazy, but I enjoy working in the yard.  I’ve completed my Spring yard cleanup, I’d like to come over and help you with yours.”

Like Nike says, “Just do it!”

Teenage advocates against Alzheimer’s disease

Alzheimer’s Foundation of America Teens (AFA Teens) brings hope that is sorely lacking from the Alzheimer’s medical community.  The younger generation is doing something that many of us older adults are not: bringing more awareness to a disease that most of us have been exposed to, either peripherally or specifically.  “AFA Teens, founded by a teenager, seeks to mobilize teenagers nationwide to raise awareness of Alzheimer’s disease, and to engage, educate, and support teens and their families.”

My family in the 70s. My dad died from Alzheimer's, and my brother's wife died from Alzheimer's.

My family in the 70s. My dad died from Alzheimer’s, as did my brother’s wife.

As adults, we are affected because the person with the disease is our spouse, partner, sibling, or older relative.  But what about the cousins, nephews and nieces, children, and grandchildren out there?  Children and teenagers are also exposed to this disease.  The challenges faced by teens who are actively involved with these relatives – living close enough to have frequent interaction with them – are challenges that adults have a hard time grasping.

“How come Pappy doesn’t recognize me any more?”  “Why does mom always forget the things that are important to me – like my birthday!”  That’s right; some teenagers have mothers or fathers with early-onset disease.  What should be one of the most exciting times in their young lives is instead spent as a co-caregiver with their other parent.  (I addressed this unfortunate family dynamic in my article, Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia.)

I strongly encourage you to visit the AFA Teens website.  I know you will be encouraged by the efforts being made by these young advocates.

World-wide epidemic on your doorstep

A May 15, 2014 New York Times article, Alzheimer’s, a Neglected Epidemic by Ginia Bellafante, provides a keen look at a fatal disease that many still assume is one that only other people get.  Maybe my coworker a few cubicles away from me or the neighbors down the street will have to deal with some sort of dementia, but not our household – right?  You wish.  Alzheimer’s is a world-wide epidemic and it’s knocking on your front door.

In 2010, Alzheimer’s was the underlying cause in 500,000 deaths in the United States.

Let’s look at another epidemic with horrific fatality totals.  Remember the AIDS crisis?  As of the year 2010, in thirty years’ time, AIDS was responsible for 636,000 deaths in the U.S.   And yet Alzheimer’s – a very unpopular disease that is erroneously characterized as just an old person’s disease – racked up almost that many deaths in just one year.

Alzheimer’s isn’t just for geezers any more.

That’s the title of one of the chapters in my manuscript – a work of fiction that centers on the lives – patients and their family caregivers – affected by Alzheimer’s or other dementia.  A couple of my characters are in their 80s but there are three characters ranging in age from early 40s to mid 60s whose disease journey began when they were no longer considered young – but definitely not considered old.

What will it take to push people out of denial and into activism?

In the New York Times article linked above, AIDS activist, Peter Staley, is quoted as saying, “The hidden blessing of H.I.V was that it hit a community, my community, a community of mostly gay men.  We had a base of organizing that came out of Stonewall.”  [1969 demonstrations by members of the gay community in response to a police raid at Stonewall Inn, in Greenwich Village.]  And then he goes on to say, “Alzheimer’s hits old people.  There is no real organized community beyond AARP.”

I’m not happy with Mr. Staley’s characterization of Alzheimer’s as an old person’s disease because it perpetuates a myth that is simply not entirely true.  But I fully back his advice to all of us:

How does a large, affected community get the country to care?  It means playing a strong inside game: These family members need to organize effectively; they need to find their allies in Congress; they need to show up with sick people in front of key members of health communities.

Right on.

Alzheimer’s struck my dad in his mid-80s and my sister-in-law in her early 60s – both now deceased.

Who’s next?  Me?  My daughter?DSCF0511

You?  Are you doing your part to shine a spotlight on the hideousness of this fatal disease?  At the very least, have you made a monetary donation to the Alzheimer’s Association in your country – a donation from which you will personally benefit?  United Kingdom; Alzheimer’s Prevention; Alzheimer’s Society of Canada; Fight Dementia – Australia – to list a few.

Dog bite statistics and novel writing

If you have been bitten by a dog you’re in good company.  I read the following statistics in the May 16, 2014 issue of the Seattle Times newspaper:

  • In 2013, 4.5 million Americans were bitten by dogs in the United States;
  • The above total includes more than 2 million children and almost 5,600 U.S Postal Service employees.

Gee, statistics for 2014 will include me in the number of Americans bitten in the United States.  I seem to have greater potential for becoming part of those statistics than making a name for myself as a published author.

Future Margarita rewards for when my manuscript gets picked up.

Future Margarita rewards for when my manuscript gets picked up.

The title for this article is my shameless attempt to keep my novel-writing in the forefront of everyone’s minds.

I’m pretty excited however – not by the dog bite episode of May 7th – but by the status of my manuscript.  I’ve almost finished reading it through – for the zillion’th time – and thus far I’m pleased with the cohesiveness of the storyline.  I’m still making edits in grammar and punctuation – semi-colons and hyphens/dashes are really stymieing me – but I’m hoping if I do my very best, a copy editor will do the rest.  I am 100% certain that an agent will want to represent a book that throws a personal and touching spotlight on those who are living with Alzheimer’s and dementia.  There’s not an agent or publisher out there who hasn’t been affected by this disease – either peripherally or specifically.

Please stay tuned as I will be providing updates in an effort to keep me on my toes, keep me honest, and get this d@*#mn book published.

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.