Tag Archives: Alzheimer’s and dementia

The Gift that Keeps on Giving – until it’s no longer needed.

Rev. Dale Susan Edmonds answers your questions about caregiving.

The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents.  (My mother died in 1994, my father in 2007 – those conversations have long since taken place.)  In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier.  That’s just how it was in our household growing up.  But I’m aware that universally, that is not the case.

In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die.  By now I may have lost some of you, but bear with me.  There’s a reason why I’ve chosen to address this topic.

presenting

(Photo credit: only alice)

GIFTS.  Who doesn’t like receiving gifts?  Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!”  “What, for me?”  Yes – for you.  Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item.  Fun, isn’t it?  Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!

THE GIFT THAT KEEPS ON GIVING.  A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive.  My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death.  I get that – I really do.  So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.

When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended.  I’ll use my father as an example.  My father died at the age of 89 on October 13, 2007.  Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death.  There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying.  His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes.  Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation.  His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.

The legal document, drafted years earlier, was drafted for this specific time.  Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision.  If ever there was a time when dad’s gift was ready to be presented – this was it.  That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad.  Beautiful.

You don’t have to wait until you are 50 years or older to put your wishes in print.  Old people aren’t the only ones dying who require some sort of affirmative decision-making.  Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death.  A forty-year old person could have a stroke and be on that same precipice.  It’s never too early to do something about your exit from this world as we know it.  You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document.  That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go!  Literally.

If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself.  Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory.  Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision.  Who woulda thunk?  Not me.

The Holidays may be over, but the season of gift-giving is not.  Won’t you consider giving your loved ones one more gift this year?

ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room

ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room.

I know that all of us want to see an end to Alzheimer’s disease.  Many of you have Alzheimer’s or other dementia, and even more of you are helping to take care of your loved ones.

Rarely has there been an opportunity to provide input in such an international forum.  This survey can be completed around the world.  It is not just intended for one country.  The primary topic of the attached survey revolves around the stigma attached to dementia.  You will be asked questions about how your loved one is treated, how you are treated as the caregiver for your loved one, etc. Your responses are entirely anonymous.  You will not be asked to provide your name, nor a physical address, nor your e-mail address.

I hope you’ll consider filling out the online survey.  It was VERY quick, so you need not spend a lot of time on the survey.

The results of this survey will appear on the Alzheimer’s Reading Room website on World Alzheimer’s Day – Sept. 21, 2012.

Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage

Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage.  Please check out this link, as well as those that I offer in my commentary below.

The above link provides a great article about a woman caregiver who found success using the confusion of Alzheimer’s to her advantage.  (For background information on the people referred to in that link please look at  an article about a talking parrot who in essence was the Assistant Caregiver for Dotty, a delightful woman with Alzheimer’s.)

The Alzheimer’s Reading Room article posted at the top of this page  mirrors my own thoughts as provided in my article: Honesty is NOT always the best policy.  If you’ve never been faced with the communication struggles associated with caring for someone with Alzheimer’s or other dementia then you may be unnerved by the approaches offered in my article and the article linked at the top of this page.  If you have been faced with those struggles, however, you’ll probably support any communication methods that make your caregiving job easier.  The caregiver benefits, and the one being cared for receives the outcome of those benefits.

BOTTOM LINE: It’s all about entering the world of the person with Alzheimer’s, rather than trying to force them into yours.

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.

Baby Boomer + Aging Parent = a changing paradigm.

Planning for a wedding?  FUN!!!!!

Putting together an extended vacation to a tropical paradise?  EXHILARATING!

Figuring out how to help mom and dad with their increasing care needs?  UNEXPECTED!

Logo of NPR News.

(Photo credit: Wikipedia)

A recent National Public Radio (NPR) Story: Preparing for a Future that includes Aging Parents addresses the unexpected, and the unplanned for.  Whether because we’re kidding ourselves or we really believe it, we oftentimes can’t imagine our parents as anything but the energetic, robust, independent mom and dad with whom we grew up.  And if we don’t live near them, we’re falsely sheltered in our assumption that mom and dad are doing just fine; at least they were the last time we saw them during the Holidays!  If we’re honest with ourselves, however, we’ll admit that our infrequent visits with the parents shock us greatly as we notice a bit of feebleness in their manner, because as the above story states, “time does what it does.”

Surprisingly, only 13% of some 4,000 U.S. workers surveyed for the 2011 Aflac WorkForces Report considered that the need for long-term care would affect their household.  We love to live blissfully ignorant, don’t we?  We have so many of our own stresses and pressures associated with running our family household, we’re just not going to entertain having to be on-point with our parents’ needs as well.  Guilty!

Taking a walk with my Dad.

I became a long-distance caregiver in the Seattle, Washington area for my father who lived in an all-inclusive facility called a Continuing Care Retirement Community (CCRC) in Southern Oregon.  The first eight years he lived there were worry free because my father was one of those robust parents who was on the path towards living to a ripe old age.  He did live to a ripe old age, dying at the age of 89, but from the age of 84 until his death, Alzheimer’s invaded our family’s peaceful existence, and I found that even as a long-distance caregiver, I was on-point 24/7.

Caveat: my parents had purchased long-term care (LTC) insurance so none of us three offspring were financially responsible for my father’s care.  But anyone who has been a caregiver for a loved one knows that care isn’t always equated to monetary expenditure.   In my case, the constant need to travel to Southern Oregon to monitor his care and be the designated (self-designated) sibling best equipped to coordinate his care with the facility’s staff, lead to my decision to temporarily leave my career, which was, coincidentally, one in the long-term care housing industry.  By the way – the answer was not to move him up to the Seattle area.  His financial investment in this CCRC up to that point rendered that an untenable option.

Even though I absolutely relished this opportunity to give back to my father – and I truly did – it was very difficult on my household and me.  My health temporarily suffered.  Everything I did revolved around being available for my father and hopping on a plane at a moment’s notice.  I lived in a five year period of dreading the ringing of my home phone or mobile phone because it most likely meant that something needed tending.  And getting home and finding NO voicemails in our phone system was cause for celebration.

  But enough about me.

Are you prepared for the eventuality of attending to your parents’ care or are you already on that journey?

Or maybe you are already caring for a spouse with medical or cognitive needs.  How are you managing that difficult task?

Let us hear from you.  Not talking about it won’t make it go away.  It’s time to face the piper and be as prepared as we can for the inevitable.

Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com

Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com.

An excellent article on ambiguous loss suffered by those who have a loved one with Alzheimer’s or other dementia.  This is a loss that occurs in many stages and is no less traumatic than what one experiences with an unexpected, unanticipated loss.  Perhaps such a loss is even more devastating.

What are your thoughts on this matter?

Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room

Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room.

One of the most frequent stresses I hear from those caring for a loved one with Alzheimer’s or other dementia is having to REPEATEDLY answer questions for which an answer has been given – numerous times.  This article provides some tips on communicating with someone who is literally not on the same wavelength as you.

Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia.

The 7-year-old child says, “I don’t want to visit Grammy anymore.  She doesn’t remember me and she scares me!”

My daughter in 1st grade. Would she have been able to handle visits with her Grandpa at that age?

This is a major dilemma with adult children whose parent has dementia.  It’s difficult for the adult to reconcile their parent’s disease progression – and they have a fairly comprehensive understanding of the disease that is robbing them of their parent.  Now imagine a child’s inability to comprehend the disease.  All they know is that Grandma seems upset when the child visits and on top of that, no longer recognizes him.  When one considers that adult children sometimes dread visits with their mother or father with Alzheimer’s or other dementia, it seems easier to just let those visits slide for the younger members of the family.  My daughter was an adult when her Grandpa was diagnosed with Alzheimer’s.  I can only proffer a guess at what I might have tried in order to make her visits with him a comfortable experience.

Should parents force their children to visit the person whom the child has started to fear?

Forcing anyone to do anything isn’t always the best strategy to follow.  In these circumstances, it could almost be considered cruel.  My grandparents lived in a different country than my family.  Us three kids saw our grandparents maybe six times before they died.  Having the opportunity to live near an older relative would have been a novelty for me as I’ve always envied those who grew up with Grandma and Grandpa nearby.  With that said, however, I acknowledge that close proximity alone in this situation is not a sufficient motivator.

How can grandchildren still maintain a relationship with their Grandma and Grandpa?

The distracted visit – visiting but doing his own thing as well.  If the parents are able to provide some sort of distracting activity while visiting Grandma, the child might get more accustomed to their grandparent’s behavior.   The child casually observes how mom and dad interact with Grandma – while still being able to watch their favorite video or play with their hand-held electronic game – and gradually feels more secure being there.  Over time, but certainly not immediately, he may realize that Grandma is no longer someone to be feared and may attempt his own interaction with her.

Parents visit without the child and provide engaging updates to their child when they get home.  Parents can keep their child connected by telling him the funny/cute thing Grandma said that day when they visited and also making the child aware of the positive things that are happening in Grandma’s life to balance out the overwhelming negative that pervades it.  Who knows, this reporting tactic might actually lead to the child’s “distracted visit” next week.  Curiosity may be just the ticket that gives the child the desire to see Grandma.

There’s SO much more that needs to be said on this topic.

I haven’t even addressed the issue of early-onset dementia that thrusts young children and teens into an extremely challenging relationship with a parent whose disease robs their children of the guidance that their parent might normally provide during their adolescence. What can you, the Baby Boomers and More Blog audience, contribute to that very unfortunate, and ever-increasing reality, in today’s world?

I’m very much looking forward to what you can add – successes and failures – that will benefit those of us searching for advice and guidance.