Tag Archives: Alzheimer’s Association

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!”

My novel experience with Alzheimer’s disease – Part 1

Two of my family members were diagnosed with Alzheimer’s or other dementia:

  • My father received a diagnosis at the age of 84 and died of the disease at 89; and
  • Three months after my father’s death, my sister-in-law was diagnosed with mixed-dementia at 65 years of age and died four and a half years later.

With that type of history and personal experience with the disease, I had no choice but to put my thoughts down on paper which has turned into my first attempt at writing a novel. Those of you who have read articles from my blog on an ongoing basis know quite a bit about my caregiver role for my father and my supportive role for my brother’s caregiving journey.  You’re also aware that my work history the past 14 years includes assisted living and memory care work; being a Washington State long-term care ombudsman (advocate for vulnerable adults); and an Alzheimer’s Association caregiver support group facilitator.

???????????????????????????????I’m lucky to have the time and opportunity to work on my craft.  Thanks to my hubby’s generosity, I have no excuse but to write; so I do.  Here’s an excerpt from the very beginning of my manuscript.  I’d like to hear your impressions.  ALL feedback is valuable…

Colleen has just a couple items to purchase at the grocery store, so after picking Patrick up from his morning day program, she secures him in his seat and heads to the mega-grocery store.  “I promise we won’t be too long – we’ll be home in no time at all.”  Patrick doesn’t register any complaints and seems quite content simply sitting and watching the world go by from his seat’s viewpoint.

Colleen is in luck; there’s a parking space not too far from the entrance so she grabs it before any other shopper notices this great find.  With the back-to-school sales in full force, she figured she’d end up in what she calls “the Back 40″ of the store’s parking lot.  “Not this time.  I must have done something right in my life!”  Colleen secures the parking brake, grabs her purse and rushes over to the other side of the car to retrieve her passenger.  “Okay, handsome!  Let’s head into the store.”  Colleen frees Patrick from his seat, and holding tightly to his hand, the two take baby steps across the parking lot crosswalk, requiring other drives to pause in their shopping rush.  As is usually the case in this friendly Oregon town, the drivers were very courteous, even smiling and waving at the two of them.  Colleen is relieved that no horns are honking – a sound that always frightens Patrick.  She and Patrick wave at the drivers, Colleen mouths a “thank you” as they reach the end of the crosswalk, and as she enters the store, she grabs a plastic shopping basket in one hand, and keeps hold of Patrick with the other.

“Let’s head to the toiletry aisle first.  We’re just about out of that bath soap that you like.  How does that sound?”  Patrick breaks into a smile, nods his head, and says, “My soap.  Let’s go!”  Colleen puts one bar in her basket and hands another bar to Patrick and asks, “Would you like to carry this bar for me?”  Again, Patrick breaks into a smile, holds his hand out, takes the bar from Colleen and holds this precious cargo to his chest.

Colleen sees the baby shampoo they need at the end of the aisle and turning to Patrick says, “You stay here.  I’m going to get your shampoo and be right back.  I’ll only be a few seconds.”  Colleen lets go of Patrick’s hand and on the way to getting the shampoo, briefly stops to pick up a couple items, tossing them into her basket.  Now at the end of the aisle, she grabs a bottle of shampoo and places it in the basket with the rest of the items.  Turning back towards where she left Patrick, she says, “Here I come, just as I promised!”  But Patrick isn’t where she left him.

“Oh no, where are you sweetie?”  Colleen quickly walks to the next aisle; no Patrick.  She rushes to yet another aisle; no luck.  “No, this can’t be happening!”  Patrick is nowhere to be found and she doesn’t know whether to go left to the housewares section or right to the grocery section.  Fortunately a store employee notices her distress and asks if he can be of assistance.

After giving the employee Patrick’s physical description, and the fact that he would probably be holding a bar of soap, Colleen and the employee split up, both going in opposite directions shouting Patrick’s name.  In her shouting, Colleen adds, “The time for hide-and-go-seek is long past!  Let me know where you are!”  Colleen makes it to the far right of the store, stumbling into the Produce section, when she hears an announcement, “Colleen Strand, please report to the Customer Service Desk at the front of the store.”

Colleen drops her basket of toiletry items and runs to the front of the store where the helpful store employee and Patrick stand at attention – both with a smile on their face and both giving Colleen the “thumbs up” sign when she reaches them.  “Dad!  I’m so glad this nice employee found you!  I lost you.  I’m so sorry I left you alone.  Are you okay?”

Patrick places his free hand on his daughter’s shoulder and says, “I thought I saw someone I knew.  I was wrong, then I didn’t see you, but we’re together now.”  Patrick looks at Colleen’s hands and seeing them empty asks, “Where have you been?  I thought we were going to shop.”  The store employee agrees to stay with Colleen’s father while Colleen retraces her steps to gather up her basket of dropped items.  She uses this time to calm down, and shaking her head she mumbles, “Note to self: never leave someone with Alzheimer’s alone in a store for even a couple seconds; no turning your back; no getting distracted; focus, focus focus!”

The remainder of Colleen’s visit with her father at the assisted living facility in Eugene, Oregon went smoothly and although she remained a bit shook up for a couple days, her father completely forgot about their grocery store caper.  He even complained that it had been a long time since Colleen had taken him grocery shopping.  In this instance, memory impairment showed its upside – her father completely forgetting the mishap for which she still felt guilty.  Nine times out of ten, however, her father’s memory loss only had a downside because the good times they spent together were lost to him as well.

I look forward to hearing your feedback.  I’ll give you another sample, this one from a couple hundred pages into the manuscript, next Tuesday.

 

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.

Medical tourism – Alzheimer’s style

More Alzheimer’s patients finding care far from home | Nation & World | The Seattle Times.  This article looks at the direction in which Alzheimer’s care may be shifting.  There are currently 44 million Alzheimer’s patients globally with 135 million projected by 2050.  Even now, Western spouses and family members are faced with an insufficient supply of qualified nurses and facilities, while other countries provide cheaper – and to some minds, better – care for those suffering from an illness for which very few effective treatments have been developed, and that is always fatal.

An enlargeable relief map of Thailand

(Photo credit: Wikipedia)

The treatment center that is the major focus of this Associated Press article is located in Thailand – the Baan Kamlangchay center.  Additional elder care options in other countries are mentioned, such as the Philippines, Eastern Europe, Spain, Greece, and Ukraine.  Cost is the driving force of those who are “exporting” (not my word) the elderly to these foreign countries.  One gentleman from Switzerland brought his 65-year old wife to Baan Kamlangchay because the monthly cost for her Alzheimer’s care ($3,800) is a third of what he would pay in his own country and he states that the staffing ratios are far better, and the activities more engaging.  In the Philippines, care is offered to Americans for $1,500 to $3,500 a month, compared to the average of $6,900 for a private room in a skilled nursing facility in the United States, according to the American Elder Care Research Organization.

Cost shouldn’t be the only consideration, however, when moving a loved one into Alzheimer’s or dementia care – and that applies to every country in which that care is available.  What are the training requirements for those who will be providing this disease-specific care for your loved one?  What type of governmental or social service oversight is in place to protect and advocate for the rights of those patients who can not advocate for themselves?  The latter question becomes extremely relevant when the patients’ families are not around to observe care on an ongoing basis.  In the previous paragraph I mentioned the man who brought his 65-year old wife from Switzerland to Thailand for care.  He is now faced with the very difficult decision of perhaps leaving his wife of 41 years in the facility, and returning to Switzerland to carry on the rest of his life.

That’s a decision unbearable in its emotional implications.

What are your thoughts?  Are you willing to become an expatriate should this medical need present itself in your life?

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 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.

There’s an App for that!

A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones.  For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.

Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load.  Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.

But does such monitoring invade the loved one’s privacy?  Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring.  Or do they?  What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life.  But I digress.

At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place.  The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly.  If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away.  In reality, however, medication mismanagement might be taking place, carried out by the parent.

Elderly People - sign on Warwick Road, Olton

(Photo credit: ell brown)

The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day.  The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening.  I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it.  HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits.  Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.

I’m skeptical of Comfort Zone but I’m also its fan.  I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation.  My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past.  A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few.  More disease control financing = more cures.

One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences.  So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden.  Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind.  Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible.  I’m sorry to burst your bubble – but it’s true.

President Obama Says the “A” Word: Alzheimer’s

President Obama Says the “A” Word: Alzheimer’s.

Lest you think that Alzheimer’s has nothing to do with you, look at the following statistics provided by the Alzheimer’s Association:

  • By the year 2050, nearly one million new cases will be diagnosed each year – that’s one American developing Alzheimer’s every 33 seconds.  Taken further, that most likely equates to nearly one and a half million new family caregivers each year – considering that at least one family member will be involved in managing a loved one’s care;
  • Ten million Baby Boomers will get Alzheimer’s;
  • On average, 40% of a person’s years with Alzheimer’s are spent in the most severe stage of the disease;
  • The number of Americans that die each year from Alzheimer’s disease has risen 66% since the year 2000;
  • Alzheimer’s is the sixth-leading cause of death in the United States;
  • Today, there are no Alzheimer’s survivors – none.

Please take time to read the article I’ve attached above and consider the following: We are going to pay for Alzheimer’s one way or the other – now, or later.

This is a disease that will affect you, your children, your grandchildren, great-grandchildren, and beyond.  Burying our heads in the sand won’t solve anything.  Please consider donating to the Alzheimer’s Association as well as contacting your state’s congressional leaders asking for greater federal funding for Alzheimer’s research.  Why?  Because of this staggering statistic:

According to the National Institute of Health, the federal government currently spends much less money on Alzheimer’s research, prevention, and cure than on other conditions such as cancer, heart disease, and HIV.

  • $6 billion for cancer;
  • $4 billion for heart disease;
  • $3 billion for HIV/AIDS; but just
  • $480 million for Alzheimer’s disease.

I’m not comfortable with those numbers – are you?

Alzheimer’s: Laughter and Forgetting

Alzheimer’s: Laughter and Forgetting.

The attached article, from the magazine, Seattle Met, is a stellar example of a therapy that is not medicinal or chemical, nonetheless, it’s a therapy that works.  Imagine that – and without drugs???

  • Frye Art Museum, Seattle, Washington

    Frye Art Museum, Seattle, WA (Photo credit: Wikipedia)

    Viewing art at a museum and painting to express oneself afterwards. What kind of wackadoodle therapy is that?

It is a very successful therapy – that’s what!  Here: Now is an arts enrichment program developed in partnership with the Frye Museum, Elderwise, and the regional  Alzheimer’s Association, in the greater Seattle, Washington area.

The above article focuses primarily on the younger onset Alzheimer’s disease scenario, highlighting the experiences of Cathie Cannon and her partner, Sharon Monaghan, the latter who was diagnosed with this life-changing disease.    As the author of the article, Ann Hedreen, states

Art – looking at it, talking about, making it – is powerful medicine, one that gives Sharon a way, however fleeting, to live peacefully in the moment, no remembering required.  Even in its very name, Here: Now is about living in the moment.

So I’m going to let you discover the healing power of art, as told by those who can explain it far better than I ever could: Cathie and her partner, Sharon.

Ambiguous Loss – The experience of caregiver spouses.

Caregivers Of Spouses with Dementia Report Sadness, Loneliness, Less Enjoyment | Alzheimer\’s Reading Room.

The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss.  I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.

The author, Pauline Boss, explains it this way – When a loved one dies, we mourn our loss.  We take comfort in the rituals that mark the passing, and we turn to those around us for support.  That doesn’t happen when a loved one is still alive -  but lost nonetheless.  And this period of loss may go on for years prior to the spouse’s final departure through death.

One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.”  Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia.  But if the “surviving spouse” is able to draw on the memories of their marriage – they find themselves able to love their spouse regardless of the disease.  But the memories remembered, are no longer shared memories; joint reminiscing does not occur.  And your wedding anniversary passes without any possible acknowledgement by your spouse.  And although that’s just one of the burdens that this long period of loss contains, it’s a difficult burden to bear.

Caregiving is a difficult, 24/7  task.  I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.

Getting lost in a “Peek-a-Boo” world.

A fellow Blogger, Frangipani Singaporenicum, submitted an excellent article, “Mom is Back,” about the hurdles experienced when her mother traveled by airplane back home after a visit with one of her daughters.  Frangipani’s siblings weren’t fully aware of the breadth of their mother’s disease so they thought that the mother would be in good hands at the airport because they had arranged for an airport escort to get the mother to her airplane destination.

Unfortunately, what could go wrong did go wrong.  “Frangipani’s” mother has mixed dementia, Alzheimer’s and vascular dementia, and found herself in unfamiliar surroundings when she became separated from the airport employee – a stranger in the mother’s eyes – who was supposed to assist her.  Getting lost in an unfamiliar environment is something that comes quite naturally to those with any type of dementia.   And as often happens when a person is lost, we try to get un-lost.  That attempt brought her mother to another airline terminal where a kind gentleman, noticing her distress, found the assistance she needed to get on the correct plane at the right time.

Those of us who have children – and please bear with me while I make this comparison – know how easily a child can wander away from our purview.  We make a quarter turn at the grocery store to get a box of cereal off the top shelf and “POOF!” our child is nowhere to be found.  I’m very familiar with this feeling because it happened to me many years ago when my adventurous daughter wandered away – causing me near cardiac arrest – and was subsequently prevented from exiting the grocery store by a Good Samaritan grandmother who knew better than to let my daughter run out into the parking lot.  “But I only turned away for a second!”  That’s all it takes.

So too can a person with dementia wander away because of something that attracted him; or more likely, with your back to him, he didn’t recognize you any more and walked away to try to find you.  “But how can I keep my eye on him at all times?”  You just have to.

SOME TIPS OF THE TRADE. 

SVG restroom symbols

(Photo credit: Wikipedia)

Public restroom challenges.  If you or your loved one needs to use the bathroom, find one of the family bathrooms that now exist in many public places so that your environment is controlled, and everyone’s needs are met.  Don’t think for a second that you can say to your husband, “George, you stay here while I run into the ladies’ room.  I’ll just be a minute.”  Be prepared to call security when you come out of the ladies’ restroom because in George’s mind, you disappeared, and the time frame of a minute means absolutely nothing to him.  And forget about sending your husband into the mens’ room by himself to meet his potty needs.  You’ll be waiting, and waiting, and waiting, and he just a) may not do his business; and b) may not come out on his own.  If no family bathrooms are available, stand at the entrance to the public restroom and announce yourself: “Woman entering with husband who needs assistance!”  You’ll find that those within will cover up what needs covering and not call security on you.

Medic Alert

Medic Alert (Photo credit: Nikita Kashner)

Medic-Alert jewelry.  The Alzheimer’s Association strongly recommends purchasing a Medic-Alert/Safe Return device which provides 24/7 emergency response service.  At least if your loved one gets lost, they will be reunited with you sooner.  This service is available in 50 countries, and in 140 languages.  The service speaks for itself so please check the link attached to research the many benefits of this membership service that, quite frankly, brings priceless peace of mind and provides a healthy dose of safety for your loved one.

Now they see you – now they don’t.  The examples cited above would not be complete if I didn’t add a personal experience from my days of being my father’s primary long-distance caregiver.  My dad lived in a Continuing Care Retirement Community (CCRC) in Southern Oregon.  When first diagnosed with Alzheimer’s he was very functional and remained in the assisted living apartment on campus that he had shared with his wife prior to her death in January 2007.

I stayed at a nearby hotel when I visited my father but spent most of the day with him on outings and/or spending time with him in his one-bedroom, one-bathroom apartment.  At one point during an apartment visit, I announced to him that I was slipping into the bathroom, 10-feet away, and would be just a minute or two.

I was glad to have locked the bathroom door because partway during my “sit” dad was frantically jiggling the doorknob from the bedroom side of the door shouting, “Irene!  Where are you?!  Are you o.k.?  What’s going on?!!”  I was less understanding at the time and returned my own crazed shout of “Dad!!!  Leave me be!  I’m just going to the bathroom!!!”  Knowing what I know now, I would have exited the bathroom and apologized for frightening him, and made every attempt to make him feel safe again.  As Oprah Winfrey often says, “We do better when we know better.”

This unintended  “peek-a-boo” event proved to me that my father did not have an understanding of the passing of time, but more importantly, that if he couldn’t see me, I wasn’t there.  Back to the example of children, but this time, you’re the child.

You’re at play in your bedroom, having just left your mommy gleefully singing in the kitchen while she did the dishes.  Your dolls are lined up on your bed, you’re engaging them in discussion, and all of a sudden you notice that mommy isn’t singing any more.  You toddle out to the kitchen, and mommy isn’t where you left her!!!  “Mommy!  Where are you?!  Mommy – I’m scared!!!  Help me Mommy!!!!!”   Your mother steps out of the adjoined laundry room and calms you down – “Irene, I was just five feet away; I didn’t go anywhere, I’m right here!”  You run into your mommy’s arms and feel safe again.

Alzheimer’s and other dementia are very unpredictable diseases.  What can be predicted, however, is that the onus will always rest on us to compensate for our loved one’s challenges.  As I’ve mentioned in previous articles addressing dementia, we have the ability to adjust to the diseased person’s reality; not the other way around.  It’s hard work for us, but it’s an impossible task for them.

How to Break the News When It’s Alzheimer’s

How to Break the News When It’s Alzheimer’s.

It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge.  A dementia diagnosis is SO difficult for everyone – including the one with the disease.  I think this article is very well done and provides a perspective of which many need to be aware.  Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away.  Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.

Communication Tips from Individuals with Memory Loss Alzheimers Reading Room

Communication Tips from Individuals with Memory Loss Alzheimers Reading Room.

It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips.  Please take the time to listen to this person’s voice.

Alzheimer\’s Reading Room: \

Alzheimer\’s Reading Room: \.

This article is a delight to read.  It describes one family member’s perception of having been “chosen” to be the caregiver for his grandmother.  As a result of that choice, he developed a product that can be, and is, used widely in assisted living and dementia care units.  What a terrific outcome for everyone!

Blogger Awards for You and Me!

Thank you “Let’s Talk About Family” fellow-blogger for nominating me for the Versatile Blogger Award.  That’s the kind of feedback I like!  More importantly, everyone should check out her Blog because her insights into the ups, and downs, of caring for parents is very insightful and well worth following.

I have been so blessed by the input I receive from the many Blogs that I follow.  I’m going to use this opportunity to make some nominations as well! (I could list many, many more, but to begin with at least, I’ll list just a few that always stand out to me.)  First of all the steps that the nominees need to take to award others who are worthy of singling out:

  1. Thank the person who nominated you for an award;
  2. Copy & paste the award logos in your blog, as well as in the sections devoted to your nominations, below;
  3. Be certain to link the person who nominated you for an award; in my case, you’ll see that I’ve linked “Let’s Talk About Family” when I thanked her for nominating me;
  4. Nominate your own choices for awards;
  5. Place links to their Blogsites so that others can view their fine work;
  6. Say a few things about yourself so that others understand a bit more as to where you’re coming from – and where you’re going:
  • My first name is Irene and I live in the Seattle, Washington area.
  • I’m a Baby Boomer who loves to share knowledge about the challenges, and delights, of being in this age group.
  • My working background of the past 20 years includes being a paralegal in law firms as well as for corporations; an Executive Assistant and Office Manager for a senior housing company; a Business Manager in an assisted living/dementia care facility; an Alzheimer’s Association caregiver support group facilitator; and a certified long-term care (LTC) ombudsman for the county in which I live.
  • I became a LTC ombudsman in 2008, thereby leaving the senior housing industry, because in my mind one can never do enough for the vulnerable adults who live in long-term care residential facilities.  In order to assure that vulnerable residents experience a dignified existence and a high quality of life, I had to switch sides and become their advocate.
  • I will always try to write something about which I am familiar and that I have also experienced.  I’m not an expert, but my goal is to always provide input that I hope will prove valuable to others.
  • My mother died in 1994 and from 2004 thru 2007  I was the primary long-distance caregiver for my father who lived in an assisted living community’s dementia care unit.

Now onto the award nominations!

Versatile Blogger Awards:

Day by Day with the Big Terrible A (Alzheimer’s, of course.)  This blog is very reader-friendly.  This blogger is a wife who is taking care of her husband.  Her mini-entries very clearly reflect the struggles she, her husband, and her family face but she also makes room to celebrate the little victories that sometimes are hidden within the caregiving struggle.  I think all of us can find comfort in this woman’s efforts, and her ability to describe those efforts deserve 5 Stars!!!

My Simple C.com.  This blog is an online community that seeks to connect professional caregivers with family caregivers.  The resources and suggestions are quite good and are provided without the intent of selling anything.  Virginia Lynn Rudder works for a company called Simple C, but she clearly has a goal of providing information in an easy to read, comprehensive, and supportive manner.

Elder Advocates.  Lark E. Kirkwood experienced something that no one should ever have to experience.  A guardianship was put in place limiting access to her father who was suffering from Alzheimer’s disease, and who has subsequently passed on.  Please visit her site because she provides many valuable resources relating to a prevailing problem for vulnerable adults: elder abuse & fraud.

BEAUTIFUL BLOGGER AWARD.

Flickr Comments by FrizzText.  This Blogger really knows how to take a photo and knows how to find them so that we can take a break in our very busy days and simply enjoy his view on our world.  Please make a point of stopping by and you’ll be representing one of the more than 100 countries that partake of his Blog site.