Family issues

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.

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.

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.

When your loved one with Alzheimer’s no longer recognizes you.

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Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you.  As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room.  Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you?  Why are you here?”

You can’t imagine this scenario unless, of course, it’s happened to you.  I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.

Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church!  Kind of funny, right?  But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.

My dad's final resting place - one month after my last visit.

I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.”  Needless to say a) I’m his daughter; and b) my name is Irene.  My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.

Did it feel weird for him to call me a name not mine?  You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first.  Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer.  What I would have given for many more opportunities to have passed off as his friend Jim.  It was not to be.

The loss we experience with non-recognition.  I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history.  No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique.  Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same.  Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive.  That’s a difficult pill to swallow to be sure.  There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.

I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive.  A caregiver can’t take your place; a well-intentioned volunteer can’t take your place.  Only you can transmit the familial love that will make a difference in your loved one’s life.

Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life.  If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.

Caregiver Guilt

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Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.

The local caregiver.

Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.

Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.

At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.

Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.

Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life.  No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.

The long-distance caregiver.

One of many walks my father and I took around his facility

My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.

I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience.  I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.

As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be.  Cut yourself some slack and don’t be so hard on yourself.

Do your best – that’s all that is required.

Solo Caregiving.

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My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support.  When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.

Garage Sale fundraiser for the local Alzheimer's Association.
Garage Sale fundraiser for the local Alzheimer’s Association.

CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.

Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing.  Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance.  Now is the time to be very transparent with them and tell them what you need.

Having dinner with my dad and his late-in-life Bride.

DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.

There is no shame in inviting yourself to dinner.  If these are true friends/acquaintances of yours, they will welcome you into their home.  Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis.  Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so.  Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.

My wonderful Dad, circa 1960’s, being a jokester.

ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!

I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs.  Let’s look at the difference between the following offers of assistance.

  1. “Hey Sam, call me if you ever need some help.”
  2. “Hey Sam, could you use a little extra help around the garden?  I’m all caught up with my yard work and would like to help you in any way I can.”
  3. Hey Sam, we always cook for a crowd and always have some leftovers.  I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”

In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help.  You’re basically forcing him to ask for help.  In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out.  If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night.  How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”

Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs.  Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver.  If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.