Caregiving

Denial: Roadblock to better health and better care.

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STATEMENT:  Carol’s having a little problem with her memory.
Initially this might be an accurate statement.  Two years later, it’s a euphemism that doesn’t benefit anyone, the least of which is Carol.

Imagine denying a person’s cancer diagnosis.  There’s no need to treat it.  I just have an uncontrolled division of abnormal cells in my body.  It’s not that bad.  It’s early in the diagnosis anyway and I’m not even experiencing any major symptoms.  I’ll do something about it when it really gets bad.  Ill-advised, right?  Most people would not follow that path.  But Alzheimer’s disease, and other dementia, are no less serious.  As a matter of fact, cancer isn’t always fatal, but Alzheimer’s is.  There is no cure and no potential for one at this time.

Most people would spring into action upon receiving a cancer diagnosis: learning as much as possible about it; taking measures to curtail  the cancer’s effects on their lives.  The sooner one does something about it, the better the chances of successful treatment.  For some reason, when a person receives an Alzheimer’s diagnosis there’s a self-inflicted stigma attached to it; as if the afflicted person brought the condition on themselves.  This is an unfortunate perception and one that should be put to rest.  Whereas clinical depression or mental illness used to be a taboo subject, those conditions are now more readily accepted in the public eye.  Alzheimer’s must be brought out into the open, especially as it affects you or a loved one.

THREE MAJOR REASONS WHY ONE SHOULD ACT ON AN ALZHEIMER’S DIAGNOSIS:

  • The window of opportunity to start early drug therapy can be a very narrow one.

The time to seek medical assistance is when symptoms become fairly consistent and more than just a “senior moment.”  A thorough medical exam should be conducted to rule out any cause other than dementia.  Some medical conditions and/or medication usage can mimic cognitive decline.  All the more reason to act early to rule out what might be a readily fixable temporary condition.

If after the thorough medical exam a cognitive workup is warranted, you’ll have a defined cognitive baseline and can start treatments and/or make adjustments in the household that will minimize the disease’s impact on your lives.  Now you’re in the driver’s seat, regaining some amount of control over the disease.

  • Those close to you need to be informed.

As mentioned in an earlier post, “Caregiving: The Ultimate Team Sport” (article located in the “Caregiving” tab) you can’t assemble a care team if you’re ignoring the needs and challenges facing you and your loved one.  You’ll be amazed at the relief you’ll feel knowing that you’re not battling this disease on your own.  Let your family and close friends know early on what you need from them.  Partner with them to become a formidable force upon which you can rely.  You need support and it’s available from several resources.

  • Join a local Alzheimer’s Association support group.

The Alzheimer’s Association lists support groups in most geographical regions that should prove extremely helpful to you.  Type in your zip code in the “Find Us Anywhere” upper right area of their website and you’ll be connected with the Chapter located nearest to you.  Within that local Chapter you’ll then be able to search for a support group by typing in your city, county,  or zip code.   You’ll find groups for family members who are attempting to support their loved one who has received a dementia diagnosis.  You might also find support groups for patients who are in the earliest stages of their illness.  Both groups can do much towards providing you with confidence and hope when none can be found.  These groups become a practical resource into which you can tap to benefit from others’ experiences in managing the disease.  If by chance there is no nearby Alzheimer’s Association Chapter, check with your local hospitals, community colleges, senior centers, and the like as they oftentimes hold groups that are facilitated by trained professionals.  These alternative groups are very adequate options when no other groups are available.

If you or a loved one has received an Alzheimer’s/dementia diagnosis, you’ve just entered one of the most difficult chapters of your life.  You deserve all the support and medical attention you can get.  Ignoring the condition doesn’t make it any less real so please take the steps needed to manage this stage of your life effectively.

The next article in this “Understanding Alzheimer’s & other dementia” series is : “Driving with dementia: the dangers of denial.”

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Understanding Alzheimer’s & other dementia

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There are diagnostic tools in place that try to make sense of the symptoms of Alzheimer’s and other dementia; some are conclusive, while others are simply an educated guess because knowledge of this disease is evolving day by day in the medical and scientific fields.  And for certain, no two people with the disease have the same manifestation thereof.

Whether or not an actual diagnosis is presented, you as family members, or perhaps as the patient, are struggling with this new reality and are attempting to carry on as normally as possible.

In the days ahead I am going to submit four articles addressing some of the challenges inherent with this disease.  I am not an expert – I have no PhDs and no medical degrees – but what I do offer is advice gleaned from my own practical experience and from that of those with whom I have been fortunate to be acquainted.

The four articles will be as follows:

  1. Denial: Roadblock to better health and better care.
  2. Driving with dementia: the dangers of denial.
  3. Long distance caregiving (provided in two parts.)
  4. Preserving your loved one’s dignity.
My wonderful brother Don, and our dad in June 2005, a year after dad's Alzheimer's diagnosis.

As Charles Darwin once said: “It is not the strongest of the species that survive, nor the most intelligent.  It is the one that is the most adaptable to change.”

I hope that ALL of us will have something to offer as these four articles are presented.  I covet your input and hope that you feel free to provide it.

Transportation challenges with Mom and Dad.

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Because of your flexible work schedule, you are the designated driver when it comes to taking Mom and/or Dad to doctor appointments.  Well, the older your parents get, the more feeble their bodies, and the more potential for aggravating factors such as cognitive decline.  What should have been a 2-hour outing has become an all-day event.

Remember the good ol'days? Neither do I.

I’m quite certain that many of you reading this article have struggled in your efforts to drive Mom or Dad to their many doctor appointments.  Getting Dad into the car is one thing, but getting him out?  My goodness – through no fault of his own, he’s forgotten the process and you don’t have the strength to lift him out.  With Dad’s cognitive decline, his understanding of what it means to sit or stand on command has decreased.  The ol’ “Ally Oop!’ maneuver or the “1-2-3 Stand!” command just won’t work any more.  What’s a person to do when you are not able to exert the strength to facilitate such an action on your father’s behalf?

Dad and I on a picnic, Spring 2005.

When I visited my father in the long-term care (LTC) facility in which he lived, my goal was to get him out of the facility as frequently as possible.  I took him on picnics, on walks around a park’s perimeter, up and down the aisles of a supermarket – anything to provide a change of scenery for him.

As my father’s dementia increased, however, these outings became less and less practicable.  I was not blessed with a strong back so my attempts to lift him out of the car or onto a park bench were met with horrendous failure.  I grieved the cessation of these activities but I just couldn’t manage my father’s body any more.  And not being able to go on these outings really curtailed the enjoyment of our visits together.

Had I lived in the same town as my father, another person could have accompanied me who was capable of assisting with the transfer of my father in and out of the vehicle.  Unfortunately, my father lived in Southern Oregon and I live in the Seattle, Washington area so calling upon a friend to go along on these outings was not an option for me.  If you, however, live near your loved one, do yourself, and your loved one, a favor by bringing another family member or a friend who has the ability to assist with the mechanics of transporting Dad on outings.  Not only will the physical assistance help, but you’ll have someone else with whom to visit when the conversation with Mom or Dad lags due to cognitive decline – or hearing difficulties.

Another benefit of having an additional person with you is that you are introducing your friend to the unavoidable process of aging.  This may sound like a negative benefit, but truly, it is not.  You will open your friend’s eyes to the future that awaits us all while also providing him with a lesson on how to enhance the life of someone whose world has been drastically reduced in size.

See?  It’s a win-win-win situation!  You receive the help you need, your parent gets a change of scenery, and your friend learns a valuable lesson.

I want to encourage you to check into local resources that provide suggestions on how to be the best caregiver you can be.  For example, your local chapter of the Alzheimer’s Association is a very valuable resource. They have numerous articles within their website and a 24-hour Helpline 1-800-272-3900 to ease you through this process.  There’s one thing on which all of us caregivers can agree – we can’t do it all by ourselves.  Reach out to receive the assistance that you so richly deserve, and that others are willing to provide.

Adult children: taking care of an abusive parent.

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When an adult child’s earlier relationship with a parent has been wrought by abuse, how does the child manage to provide care to this parent who reigned verbal, physical, and/or sexual abuse upon him/her?

  • Is it possible?  Yes.
  • Is caregiving required of an adult child in this circumstance?  No.
  • Is the child wrong to turn his or her back on a parent requiring care and attention?  Absolutely not.

Every individual’s situation is unique due to the extreme nature of this type of family dysfunction.  There truly is no textbook answer that fits each circumstance.  Not only is the situation unique but we’re talking about emotions – and how one deals with those emotions.  We’re talking about the balance of how the previous harm has been handled and whether or not contact of a caregiving nature may prove newly damaging to the adult child/victim.  For the purposes of this article, we will assume that the adult child has decided to participate in her abusive parent’s caregiving.  CAVEAT: Anything I offer in this article is not based on personal experience, but rather, experiences that have been relayed to me through my work with adults who are also caregivers for their parent.  I’m not an expert, I’m only an observer.  I covet any input that my readers may be able to offer.

The caregiving well is shallow.

More likely than not, the well from which the child can draw may be very shallow.  If the adult child has chosen to keep her distance from the abusive parent for many years, being suddenly thrust into one of the most difficult jobs she will ever perform could be a next to impossible task.   Let’s say that she has decided to give it a try but she has been wise enough to set up an escape route that she will follow when the going gets tough.  I don’t necessarily mean an actual, physical escape route.  Rather, she has established the upper limit that she will bear should matters get out of hand emotionally or physically.  She makes a commitment to herself that sets a comfortable threshold after which she will walk away, guilt free, knowing she made a valiant effort.  She is strong enough to acknowledge that at some point she may need to cease all caregiving efforts.

As I mentioned in a September 2011 Blog entry, “Deathbed promises and how to fulfill them,”  (found in the Caregiving category of this site) even adult children with a fabulous relationship with their parent struggle greatly in their caregiving efforts.  Whether you end up being a hands-on caregiver (providing the care in your parent’s home or yours) or you find yourself as the primary family contact with the staff caring for your parent at a long-term care (LTC) facility, you are pulled into the intimate aspects of a parent’s life and it is not an easy role in which to function.

Feeling obligated vs protecting oneself.

Too often, we do things out of a feeling of obligation rather than heartfelt compassion.  In the situations outlined above, obligation will either be the only thing that places you in the caregiver role, or it will convince you that you’re not emotionally available to walk down that rut-filled path.  I am an advocate for vulnerable adults – I live by that mantra – but in this situation I feel that the person needing the most advocacy is the adult child who still struggles with the effects of a past abusive relationship with a parent.  If you are not able to provide the caregiving, please know that there are others who can do so in your place.  You don’t have to be “it” ‘in this situation, and having someone else step in could very well be the best caregiving scenario for you, and your parent.  If you ever find yourself in this role, please do not act alone.  The community around you: churches, local government health service organizations (such as that found in Washington State), organizations that protect the abused, are an absolute required tool in your toolbox to be an effective caregiver, and an emotionally protected adult child.

Anyone out there who has been in this role or is currently in this role of taking care of an abusive parent?

Your input is very valuable and could very well help those struggling with this scenario.  If you feel strong enough to share your story you have my thanks for opening up on this Blog.

Caregiver: put on your oxygen mask first.

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passenger-362169_640The airline flight attendant gives pre-flight safety instructions:

“In case of a loss of airplane pressure, oxygen masks will drop from the overhead compartments.  Put mask on yourself first before assisting children or those not able to help themselves.”

Why?  Unless the able-bodied person is fed oxygen, he won’t be able to help any one else.

Whether you are actively providing care to your loved one or you are the point-person managing that care, you are stretched thin.

Your reserves are low.

Your tank is nearing empty.

You’re on the path to caregiver burnout – or you’ve already arrived.

You love to think that you can do it all:

  • have a full-time job, and a full-time family;
  • have numerous duties in your own household that obliterate any “idle” time during your day;
  • you’re on the community board or other volunteer activity; and, oh yah
  • you’re responsible for your aging parent’s, or spouse’s, day-to-day maintenance.

Not only are you burning the midnight oil; you’re burning the candle at both ends and about to self-destruct.

“But I have to do this.  I have a lot of people counting on me to take care of dad.  If I don’t do it, who will?  I won’t be a dutiful son/daughter, if I walk away from all my responsibilities!”

Oftentimes what happens in these situations is a person ends up being of no good to anyone.

  • You’re taking more and more time off from work either due to your own illnesses or to attend to the needs of others;
  • Your spouse and children are suffering from the constant stress that your over-extension of commitments places on the household;
  • The project for which you volunteered at the PTA or Boy Scouts, or FILL IN THE BLANK, is dead in the water because you don’t have the time or energy to devote to the cause; but
  • Your loved one for which you provide care is doing just fine because he/she is receiving all of your attention.

Keep this up and you’ll be no good to anyone because a vehicle doesn’t run on an empty tank and neither can you.  It’s time for you to attend your own “care conference” to come up with a realistic plan of how to direct your own health and well-being.

The “To Do” List vs the “Don’t Do” List:

You weren’t put on this earth to help everyone and despite your well-meaning belief that you can do it all – you can’t, and you’ll never be able to do so.

  • Write a list of everything you currently feel obligated to do each week.  Now cross out a third of that obligation list.  Do what you can to delegate duties and/or designate other willing people to carry a third of your burden.  You should already start feeling better.
  • Now eliminate – or temporarily withdraw from – another third of your obligations. You won’t offend others by doing so if they know you well enough to understand your reasons for stepping back a bit.  I’m certain they know that they will be able to count on you later when your life situation isn’t so acute.  You’re not dropping out, you’re just putting yourself on pause.
  • Reconnect with the family in your household. Don’t risk losing your family.  You need them on your team and they need you.  They will be around long after the loved one for whom you’re providing care passes away.  You want your family with you now, and you’ll want their support later.
  • Assemble a caregiving team. In my blog entries: Caregiving: The Ultimate Team Sport and Solo Caregiving I address the importance of reaching out to others and tapping into resources that will help you stay sane and healthy while on this caregiving path.

You owe it to yourself, and your loved one, to start taking care of yourself.  So place your own well-being at the top of your priority list.  I can pretty much guarantee that you won’t regret it.

I sang for my Dad today … January 30, 2011

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I sang for my Dad today … January 30, 2011.

I am so pleased that I FINALLY figured out how to post someone else’s blog entry and I do so with this one by Lark Elizabeth Kirkwood.  How wonderful that Lark was able to have that musical connection with her father at that time in his disease.  One of the last songs I sang to my father, a couple hours before he died, was “Aloha Oe” which is a good-bye song in Hawaiian.  I know he heard the song as he rode on the wave of departure from this Earth. Reading Lark’s many posts about the positive effects of music on those with dementia or brain injuries is so timely as I am still reeling from the positiveness of Diane Sawyer’s 20/20 program on ABC that was broadcast earlier this week.  Her story of Gabrielle Giffords and Mark Kelly was  inspirational on so many levels.  Music had, and continues to have, an AMAZING healing effect on Congresswomen Giffords recovery from that horrific gun shot injury on January 8th, 2011.

8 Rules for New Caregivers

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8 Rules for New Caregivers.

Caregiving is one of the hardest jobs any of us will ever undertake. Please take time to read this article that I have added to my Blog that originally came from an AARP posting.