Tag Archives: caregiving

A normal day, caregiving style

Approaching The Final Destination.  The attached article focuses on one caregiving journey that is coming to an end.  Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination.  Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.

Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards.  I’m sure most family caregivers can get in touch with that.”

Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced.  The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.

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 died from Alzheimer’s.

My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old.  In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.

Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination.  Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives.  I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.

Normal?  What does that mean?  And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care.  What liberation!  What freedom lies on the horizon!

No, that is not what the caregiver is thinking.  He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.

But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.

What we all would give for just one more day of abnormal normalcy with our loved ones.

But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.

Freedom from pain; freedom from physical and cognitive restrictions.  Let it be.

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.

Adult children who parent their parents

A LIFE BEYOND | SOUL BIOGRAPHIES.

The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother.  The same could have been filmed of a spouse-caregiver because the message is the same.

Please make every effort to watch this film straight through without distraction.  I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.

There is no denying that caregiving is extremely difficult.  But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.

One of many walks my father and I took.

One of many walks my father and I took.

As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life.  I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.

I feel blessed to have been on the caregiving journey with my father.  And my, oh my, do I still miss him.

Alzheimer’s Answers; Are you ready to be a caregiver?

Alzheimer’s Disease: Your Questions Answered | PBS NewsHour.  We need all the help we can get in order to make well-informed decisions about any caregiving journeys that might occur in our future.  The attached article shows a snapshot of one adult daughter’s 24/7 caregiving journey with her mother.

Perhaps you’re saying that you don’t anticipate your parents requiring any caregiving assistance in their frail years (perhaps your parents have already passed so no need exists there.)  Do you have any siblings? close friends? a significant other?  If you answered “yes” to any of those designations, the possibility exists that you will be called upon – or you’ll volunteer – to be of assistance to someone who needs help with their activities of daily living (ADLs).

Taking care of a loved one is no easy task.  It doesn’t matter how much you love the person, your patience and your abilities will be tested.  I truly admire the subject of this PBS article.  Rebecca Wyant is the full-time caregiver and guardian of her mother, Mary Wyant, who was diagnosed with Alzheimer’s at the age of 65.  Mary moved in with her daughter in 2006, is now 74 years old, and Rebecca is in her seventh year of personally providing her mother with full-time care.

How does Rebecca do it?  She thought she was prepared for the task but soon discovered that finances, and creative ways of managing her mother’s care, are dwindling resources.  With that said, however, Rebecca states that she is the only person who can provide the care that she can.  She agrees that professionals could provide the care, but absolutely no one could possibly care for mom as Rebecca can.  That part of the video disturbs me a bit, and I’ll tell you why.

Dad, myself and one of his caregivers.

Dad, myself and one of his caregivers.

I was an Alzheimer’s Association caregiver support group facilitator for several years and heard the voiced concerns of those daughters, sons, and spouses, who carried a great deal of guilt on their shoulders for not being able to keep up with the care of their loved one.  They did provide the care initially, and then found their abilities wanting – and their health declining.  They eventually made the very difficult decision to place their loved one in an assisted care setting.

Here’s the story of “Constance” and “Robert.”  Constance first came to my support meeting at the age of 80 having already taken care of Robert at home for the previous three years since his diagnosis.  Constance’s health started to decline due to lack of sleep – Robert’s dementia had no respect for the clock.  Added to that dilemma was the fact that she had no existence outside of her house.  She was trapped!  Her friends abandoned her, all the social activities in which she had participated fell by the wayside, but she refused to move her husband into an assisted care setting, even though she felt they had the finances to support such a move – many do not and have no choice but to provide 100% of the care.  “No one can take care of Robert like I can.  I would never do that to him – placing him in someone else’s care.  That’s my duty as his wife; a duty I take seriously.”

Fast forward one year later, and Constance had no choice but to place Robert in an adult family home with five other residents; it was either that, or she would have been forced to relinquish her caregiving role because, quite frankly, she ran the risk of dying before Robert.  Once she relocated Robert to a care home, the well-trained staff provided all the assistance Robert needed, and Constance could now have the sole role of being his wife.  She visited him almost daily until the day he died one year later.

Constance admitted that she wished she had moved Robert to the adult family home earlier than she had because she realized that being a committed wife didn’t have to include caregiving that risked her own health.  She relished her reprised role as his loving wife when she visited him – none of the other care staff could fulfill that role but her – and the staff did what they do best, providing all the care her husband needed.

This is the nugget I want you to come away with from my above commentary: guilt and obligation are normal emotions that might prevent you from making decisions that may very well be in your best interests and those of your loved one.  Please believe that allowing someone else to take care of your loved one does not equate to you shirking your familial duties.  It does, however, tell me that you know your limits, and you know what is best for your personal situation in the long run.  Additionally, it shows that you value your long-standing role as a daughter/spouse/partner/sibling, more than any new role as a care provider.  There’s something to be said about retaining your given role in a relationship.

Caveat: as I indicated above, finding affordable care outside of ones home is no easy task, and you may have no choice but to provide the needed care for your loved one.  But if you are able to find trusted family or friends who can “spot” you from time to time so that you can enjoy a needed time of respite, please do so.  You’ll be far more able to carry out your caregiving task if you take care of yourself first.  See my article: Caregiver: put on your oxygen mask first.

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.

Being a caregiver or being cared for: there’s really no escape hatch.

In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come.  I also talked about caregiver statistics.

One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds.  In actuality, the stats are far greater than that.  Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one.  I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.

The following statement is attributed to former First Lady of the United States, Rosalynn Carter:

There are only four kinds of people in the world – those who have been caregivers,

those who are currently caregivers,

those who will be caregivers, and

those who will need caregivers.

I really don’t think there’s any way around it.  How about you?  Have you dodged the caregiver or being-cared-for bullet yet?

A Touch of Completion

2/6/13: Me & Mom.

A very brief blog entry from a fellow blogger.  Some of you on your caregiving journey – or those who have recently ended that journey – will understand what is being said here.

New roommate paradigm: adult children & their parents.

Historically, it’s the adult children who move back into the parents’ home, oftentimes because of financial issues.  Apparently that is no longer the sole definition of multi-generational living.

In a USA Today article, Who’s moving in? Adult kids, aging parents, Haya El Nasser writes, “(A)bout one in seven say they already have a ‘boomerang kid’ – an adult child who moves back home – or elderly parent living under their roof.”

This brings about two unexpected events:

  • The parents who enjoyed their empty nest and started to reestablish themselves as a couple, instead of just as parents, suddenly have an adult living with them who just happens to be the kid they gave birth to 30 years ago; or
  • The adult child who strove to establish his home with his spouse and their 2.5 kids suddenly have a parent living with them requiring just as much attention, if not more, than the young children they themselves brought into this world.

The USA Today article above focuses on a rising trend towards families deciding to purchase larger homes than they would have previously considered with the anticipation that it would be more economical to have other adult family members living in – and contributing to – the same household.  Talk about a paradigm shift!  Stephen Melman, director of economic services at the National Association of Home Builders says, “I remember when I was in college, no one wanted to be near their parents.”  That thought certainly resonates with me.  When I was single in my 20s and early 30s there was no such luxury of renting a place on my own and living-at-home was definitely not an option.  At one time I had two roommates so all three of us shared the same bathroom, kitchen and common living space.  Inconvenient and not as private as we would have liked?  Certainly – but the only way to afford housing and have the ability to put away money for our future was to split costs with other like-minded adults.

A Pew Research report earlier this year showed that “the share of Americans living in multi-generational households is at its highest since the 1950s.”  OMG!  As a Baby Boomer who was born in 1953, I just have to repeat, “OMG!!!!!”

My focus today is on the caregiving issue – that adult children and/or Baby Boomers find themselves with the added responsibility as caregiver to a loved one.  In my article Start your retirement – start your job as a family caregiver I address the caregiving aspect of Baby Boomer retirement which sometimes evolves into multi-generational living.  Our quality of life definition tends to change as family caregiving is added to our lives.  But it’s a fact of life for many of us and one that very few can escape.  But herein lies the problem…

Most of us aren’t prepared for that eventuality.  Those of us who are counting the days until retirement kid ourselves into believing that caregiving happens to others, not to us.  And our adult children find it difficult to wrap their minds around that type of living scenario whilst in the midst of their hectic career development and ever-changing family dynamics.

So what happens?  We find ourselves in an emergent situation that requires immediate action that may not be well-thought out because we don’t have the time to make a well-informed decision.  We all know that the worse time to make a life-changing decision is in an emergency.  There is a wealth of information available at our fingertips – the worldwide web is replete with helpful resources.  Even this website has many articles written on the subject.  As you browse through this website’s categories, be sure to enter a search term in the “Search My Site” box located at the right-hand side of each content page.

I’m not suggesting that you finalize plans that might not be implemented until many years down the road – or at all.  What I am suggesting, however, is that we all become aware that a) these issues exist and could very well happen in our own lives; and b) we’re going to do what we can now to make wise decisions later.

I Can’t Win.

I Can’t Win.

For those of you who have not experienced the stresses of caregiving, or being the point-person for a loved one with dementia or other debilitating disease – please read the above-linked article.  It will give you a wee taste of:

a) the toll that caregiving takes on loved ones;

b) the toll of being a spouse with someone with dementia; and

c) the extreme frustration of trying to communicate with professionals while coordinating care for your loved one.

Please read this article – it will give you a healthy respect for your coworker, neighbor, family member – who is on duty 24/7 with caregiving tasks.  Whether the caregiver is performing these tasks long-distance, as was the case for me in relation to my father’s care, or performing them on-site, the task is monumental and deserves a great amount of respect and understanding.

What A Difference A Year Makes.

What A Difference A Year Makes.

I congratulate Chris MacLellan, the Blogger whose article is linked above, for coming to the realization that:

  • caregiving is a noble and worthwhile job; and
  • caregiving can be bad for one’s health.

All of us at one time or another have turned the focus away from our own well-being onto that of others to the detriment of our emotional and physical health.  That doesn’t mean that we shouldn’t attend to the needs of others – we must if we’re to be a supportive society – but it’s important to be aware of what we personally need in order to remain healthy.  It’s a difficult balance to reach, but it can be done.

My article, “Caregiver: put on your oxygen mask first” addresses the mistaken notion that we can do it all.  We can’t.  Our reserves will always run low and our fuel tank will always near empty unless we feed ourselves with that which sustains us.  Chris discovered what he needed to do.  I hope we all come up with the winning formula that allows us to take care of ourselves while we take care of others.

Free Caregiver Resource eBook: 8/26/12 Only!

Free Caregiver Resource eBook: 8/26/12 Only!.

I should have posted this earlier than today, but I hope anyone needing this valuable resource – and it’s FREE today Sunday, August 26th!!!!! – will be able to take advantage of it.  I know I will.

Thank you, Kelli, for being generous with this offering.

 

 

New ad campaign portrays caregivers’ call for help

New ad campaign portrays caregivers’ call for help.

A recent NBC Nightly News story focused on the role of caregiving as adult children take on the parental role vacated by their parents.

Imagine, if you can, handling all that you normally do in your hectic life and adding between 20 to 60 more hours to your workload.   Haven’t arrived at that point yet?  Of this potentiality you can be certain – all signs point to that being in your future.  Whether your involvement is characterized by general care for an aging family member, or specialized care for a family member with cognitive decline, caregiving is most likely a task to which you have not devoted much attention.

It is said that 1,200 people per day are diagnosed with Alzheimer’s or other dementia.  Let’s re-categorize that statistic: 1,200 caregivers are created every day.

The new ad campaign, a joint project between AARP and the Ad Council, was created to address the impact of family caregiving with the graying of the population.  This ad campaign seeks to provide resources for those who are thrust into this role for which they are ill-prepared.

“Although they often don’t identify themselves as ‘caregivers,’ more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate.  It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.”

Taking a walk with my wonderful Dad in 2007.

And as many of us who have been in that caregiving role can attest, ones’ active role goes on and on when behind-the-scenes caregiving occurs, dealing with finance and insurance issues and the like during  our alleged “free” time; a time when others are settling down to watch their favorite TV show or to read a good book.

This extraordinary AARP/Ad Council project is broader than another effort that is part of the new National Alzheimer’s Plan that can be found on the federal government’s website, www.alzheimers.gov.  But both of these projects address the loneliness inherent with the caregiving task when so many caregivers feel, and become, isolated and adrift in an ocean of frustration and despair.

FINALLY some resources are being directed to the tidal wave of caregiving issues that Baby Boomers face.  It may be too little too late, but it’s more than has been available up to this point.  My hope is that the generation in which our children live will have sufficient resources to deal with us Baby Boomers because if our children think this caregiving task is going to jump their generation, they’ve got another thing coming to them.

And I apologize ahead of time for what awaits you.

Alzheimer’s Reading Room: Joy vs Grief.

The Alzheimer\’s Reading Room is the number one source of life news for the entire Alzheimer\’s community.

via Alzheimer\’s Reading Room.

The attached article reflects the sentiments of Bob DeMarco, a son who took care of his mother Dotty for over 8 years during a difficult Alzheimer’s journey.  He rarely complained – which is stellar, but not required – and now a few weeks after her death, he’s falling back on the memories and finding joy amidst the grief.

Reminiscence and reminiscence therapy

Reminiscence and reminiscence therapy.

I found the attached article very interesting and promising.  Anyone who has been a family caregiver, or a professional caregiver, knows the seemingly insurmountable struggle to engage with someone who has Alzheimer’s or other dementia.

My work path in life always includes those with dementia so I will definitely look into this therapy.  But let’s face it – as us Baby Boomers move onward into our future, we’re already looking for ways in which to brighten our memories when what we’re searching for may be on the tip of our tongue, but it refuses to jump off!

Moving Mom and Dad – or your spouse.

Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine.  Statistics on aging are astounding, and scary.  “By 2020 some 6.6 million Americans will be age 85 or older.”  That’s an increase of 4.3 million from the year 2000.  Time to celebrate – right?  We’re living longer – and in some cases – thriving in our older age.  The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.

The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility.  The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.”  Nice sentiment – but not always possible.

I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one.  Below are links to each of those articles.  I hope they prove beneficial to you.

Deathbed promises and how to fulfill them.

Caregiving: The Ultimate Team Sport.

Selecting a Senior housing community – easy for some, not for the rest of us.

Avoiding the pitfalls of selecting Senior Housing.

Adjustment disorder: a long-term care facility side- effect.

Be an advocate for your aging loved one.

Visiting a loved one at a long-term care facility.

Caregiver guilt.