Caregiver

The Silent Cry of the Caregiver – AARP

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Challenges of Providing Care for Spouse or Parents – AARP.

A 2012 issue of AARP The Magazine contained an exceptional and gritty article about caregiving.  The focus is primarily on the role a spouse plays in taking care of a dying spouse – in this case, a wife with ovarian cancer – but the caregiver may also be attending to an ailing spouse or parent with a debilitating disease such as Alzheimer’s or other dementia.

Sick woman in bedIn the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife.  The first paragraph of the article will grab you:

It’s the one vow that can really come back and bite you in the butt: “…in sickness and in health.”  On your wedding day the phrase conjures up visions of tiptoeing into a sun-drenched bedroom with lunch on a tray for your wife…What you don’t expect it to mean is crouching in the harsh fluorescent glare of a hospital treatment room and holding her head to yours, trying not to faint as a technician inserts a large needle between her ribs to suction two liters of fluid from her lungs.”

The role of a caregiver is one that not many will be able to avoid.  Currently across America 43.5 million people are caring for a loved one who is 50 years or older.  I’ve done it.  My brother’s done it.  Chances are, you’re doing it too.

AARP Caregiving Resource Center  is a magnificent tool for all of you who are involved in caregiving.  If you’re sitting there saying you don’t have time to check out this caregiving resource, you need it more than you can imagine.

Please start taking care of yourself and check out the resources that have been developed just for you.

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New ad campaign portrays caregivers’ call for help

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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.

Ambiguous loss – the experience of caregiver spouses

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

Painting courtesy of Mary Riesche Studios
Painting courtesy of Mary Riesche Studios

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 the 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 the losing occurs 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.  Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs.  Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one 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.

Seattle Times: Seniors for Sale, Part 5

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Part 5, of Seniors for Sale: Hiding Harm: the human toll, is one example of the lack of reporting that goes on in some assisted living residential settings – in this case – an Adult Family Home (AFH).

When you watch the video link above, you’ll be shocked at how a particular accident happened – and its after effects on the victim –  and you’ll be horrified at how long it took before it was reported to the police.

Perhaps this statistic will provide a partial explanation:

only 16% of all incidents of elder abuse are reported.

The Seal of Washington, Washington's state seal.
The Seal of Washington, Washington’s state seal. (Photo credit: Wikipedia)

Not only are many caregivers not reporting incidents of abuse that occur; surprisingly, family members fail to get beyond the denial stage when they discover that their loved one just might be in danger in the very location entrusted to his/her care.  They can’t believe that the caregiving solution they found for their loved one has turned out to be disastrous in every way.

The police investigator for this case states the following:

We don’t tolerate domestic violence, but that’s not always the case with elder abuse.

The final episode of Seniors for Sale will be submitted tomorrow, Saturday.

Reminiscence and reminiscence therapy

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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.

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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.

The unpredictability of Alzheimer’s.

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Curtain #1

The link above is a blog entry by a delightful woman who is taking care of her husband.  Being a caregiver of someone with Alzheimer’s or other dementia is challenging in so many ways but this blogger truly knows how to find the silver lining in her experience as a spousal caregiver.

“Curtain #1 beautifully portrays a day’s challenge as an adventure, not unlike the game show Let’s Make a Deal.  You never know what will be behind the curtain – a prize, or a zonk – but this wife’s way of looking at each experience is very refreshing.  I don’t think I would handle the circumstances nearly as well as she does.  I hope she knows that having a bad day, and one with less-than-perfect attitudes, is more than o.k. because we’re only human, after all.  Until we reach perfection, we’ll just have to do the best that we can with what we’ve been given.

I think she’s doing just fine.