Caregiver

Victories in Caregiving

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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.

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Caregiver Stress – no one is immune

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Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP.  The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving.  A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”

My dad and I, five years before I became his caregiver; 13 years before he died from Alzheimer's.
My dad and I, five years before I became his caregiver; seven years before he died from Alzheimer’s.

Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment.  Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing.  She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.

In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second.  “No way,” you say, “my mom/dad/spouse come first; they need me!”  You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them.  That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.

Most of us learn the hard way.  We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno.  Do yourself – and your loved one – a favor.  If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself.  You will benefit from such care, and so will your loved one.

Finding respite in the 21st century

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Dissecting disconnection: Why I’m taking the week off tech.

Monica Guzman, Seattle Times writer and blogger, is going off the technical grid for a week – thus the article attached above wherein she analyzes our habits and impulses when it comes to us feeling the need to be instantaneously on top of matters.  She’s not disconnecting from all technologies – she intends to watch television and might use a real camera – but she’s staying away from “the ones that know me.”

Ah, respite – what a delightful concept.  Lots of us Baby Boomers equate respite to receiving some sort of relief from our caregiving tasks.  For example, we might be taking care of a parent, sibling, partner, or spouse and we look for every opportunity for a reprieve from our caregiving chores – or at least we should be.  Please see my article Caregiver: put on your oxygen mask first.

Darth Gimp Cordless Phone
Cordless Phone (Photo credit: Wikipedia)

Respite, however, also relates to resisting the compulsion to send someone a Happy Birthday greeting by sending an e-mail, or going to the honoree’s Facebook page, or sending a Tweet on the person’s Twitter feed – and instead, deciding to call that person for a conversation that lasts longer than it takes to type a 140 character greeting.  OMG, MIK?  (Oh my god, am I kidding?)

No – I’m serious.  I could make it harder on you – and myself – by suggesting that we send a birthday card that would require us to purchase, write, post, and drop the card through the slot of a postal box.  I think that would be a great idea, mind you, but that’s not what I’m proposing.

Rejoice in the fact that Facebook reminded you of that person’s birthday.  (I know that you received sufficient notice not to miss that person’s birthday because truth be told – that’s how I remember many of my acquaintances’ birthdays each year.)  But please resist the urge to send an instantaneous electronic greeting.  Think of yourself – I know you can – and think of what it feels like to receive fun mail, such as a birthday card, or simply a “there’s no reason for this card” card.  You liked that feeling – didn’t you?  Now I want you to also think about how it feels when someone calls you to personally wish you happiness – just you and the person that called you.  That’s a one-on-one attention connection.

Drop a note, make a call, but leave the 140 characters for some other important message, like:

I had a glazed doughnut and a cup of coffee for breakfast then washed my hair and can’t do a thing with it! Isn’t that just the worst thing ever?

Go ahead and count – there’s 140 characters there.

Baby steps towards Alzheimer’s diagnosis

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Amyloid Scanning Protocols Fail to Get the Nod from CMS.

I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.

Stillness gets us no where.  Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias.  During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.

Caregivers – this message is for you!

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No Matter What, I Simply Cannot Get Sick!.

Fellow blogger, Don, talks about his caregiving journey with his wife in which he swore off getting sick because – quite frankly – he couldn’t afford to be sick when his caregiving duties required that he be healthy and available 24/7.

One could argue that just being worried about getting sick might make one sick, but fortunately, that was not the case for Don.  Having read many of his articles, it appears that he knew what was required of him as a caregiver – the same thing that is required of all of you who are still on your caregiving journey: assemble a team, spread out the duties, and seek emotional and physical support in whichever form you need.

First and foremost, please read Don’s article attached above.  After you have done so, I hope the three articles below will also prove beneficial towards providing direction on how one might assure a successful medical and mental health caregiving journey.  When you take care of yourself, you’ll be better equipped to take care of your loved one.

Caregiving: The Ultimate Team Sport

Solo Caregiving

Caregiver: put on your oxygen mask first

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

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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.

There’s an App for that!

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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.