It is with deep appreciation and honor that I ask you to join me today over at the EldercareABC website.  EldercareABC is a wonderful community for caregivers, created by caregivers, and one that I respect greatly and enjoy visiting.

Mary Nix is a woman whom I interviewed in 2009 about her caregiving experiences, and she has graciously asked me to share my viewpoint about caring for aging parents on her EldercareABC blog.

You can also check out some other posts while you’re there, such as:

• Protection from Financial Elder Abuse

• The Upside to Elderly Home Care

Or subscribe to their RSS feed so you won’t  miss any of the excellent information and resources they provide to caregivers.

The “ABC” in EldercareABC stands for “About Being Connected.”  Thank you to Mary and the EldercareABC Team for giving me the opportunity to connect with you and your readers.  And please continue doing the great work I consistently find there and assisting caregivers in such a supportive way!

The Path

Every caregiver takes the same path I did — from denial . . . to acceptance . . . to overcoming whatever the unique caregiving challenges are.

I have walked in your shoes. You are not alone!

Here are some of my favorite quotes to help you on each part of this journey.

DENIAL

It’s not denial. I’m just selective about the reality I accept.

~  Bill Watterson

You will find peace not by trying to escape your problems, but by confronting them courageously. You will find peace not in denial, but in victory.

~ J. Donald Walters

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ACCEPTANCE

Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.

~  William James

A wise man adapts himself to circumstances as water shapes itself to the vessel that contains it.

~ Chinese Proverb

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OVERCOMING CHALLENGES

Beginners and outsiders are open to possibilities and don’t make assumptions. By extension, they’re often better at finding solutions the experts have stopped seeing.

~ Michael McMillan

Opposition is a natural part of life. Just as we develop our physical muscles through overcoming opposition – such as lifting weights – we develop our character muscles by overcoming challenges and adversity.

~ Stephen R. Covey

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Photo Credit:  richardefreeman’s photostream

Publicly sharing a true confession earlier this week got me thinking about regrets I have as a family caregiver.  Looking back, there are definitely some things I would have done differently while caring for Mom and Dad.  They’re hard to acknowledge, and I am very sad when I think about them.  I wanted so much to be the perfect daughter and caregiver!

But, I also know I made the best decisions I could based on the situations and the knowledge I had at the time those decisions were made.

I refuse to beat myself up over these regrets.  And I try very hard not to dwell on them too often nor for too long.

What about you?  Do you have caregiving regrets? How do you deal with them? Please share your thoughts in the comment section below.

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Often regret is very false and displaced, and imagines the past to be totally other than it was.

~ John O’ Donohue

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People have to face regrets. Becoming mature means learning to accept what you cannot change, facing unresolved sorrows and learning to love life as it really happens, not as you would have it happen.

~ Barbara Sher

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I have many regrets, and I’m sure everyone does. The stupid things you do, you regret . . .  if you have any sense, and if you don’t regret them, maybe you’re stupid.

~ Katharine Hepburn

There are two lasting bequests we can give our children:  one is roots, the other is wings.

~ Hodding Carter

I’ve always loved this quote!  With just a few tweaks, it applies to family caregivers:

There are two lasting gifts we can give our aging parents:  one is safety and security, the other is as much independence as possible.

~ Linda Abbit

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Photo Credit:  Kthypryn’s photostream

This Associated Press (AP) headline on the computer caused me to raise my eyebrows in surprise:

“News of High Alzheimer’s Risk Doesn’t Devastate”

Could this really be true?

The article summed up the results of a study funded by the National Institutes of Health and published in The New England Journal of Medicine on July 16, 2009:

People who learn through genetic testing that they have a higher than average risk for Alzheimer’s disease are able to handle the bad news pretty well, results from the first major study of this suggest . . . . But they challenge assumptions that people will be devastated by a positive test result and misread it as certain proof they’re doomed to Alzheimer’s. . . .

The study measured anxiety, depression and stress levels in 162 healthy adults who were children or siblings of people with Alzheimer’s.  The participants were in the early 50’s, on average. Most wanted to know if they had the gene, and people who already had severe anxiety or depression were not included.

Yes, this was published originally in a scientific journal.  And, it is telling people only that they have a higher than average risk (not 100% certainty) they will get the disease, but I find it hard to believe the participants handled the news that well.

A Response at the Other End of the Spectrum

In Behind the Mask, Helene Moore writes about receiving the news alongside her husband, Howard, that he has “probable Alzheimer’s disease” at age 63.

We are no longer smiling. I feel as though a mule has kicked me in my stomach. Emotions race through me like sand through a sieve. Anguish. Pain. Anger. Terror. Oh my god, Alzheimer’s. Not that! Not Howard!. . .

I swallow my tears as my heart pounds in my chest. I reminded myself to stay clam, strong, and centered. What was my poor lover feeling? Please God, help us.  I feel like Alice in Wonderland, hurtling down a dark spiraling tunnel into a deep void. Could I wake up from this nightmare?

We made our way outside the doctor’s office where we stumbled wordlessly into each other’s arms, both of us trying to shield the other from the force of this cruel blow.

We cried from the depths of our souls.  We cried for a future that was a death sentence for both of us. . . .

I no longer noticed the sunshine nor felt its warmth.  I couldn’t smell the flowers, although I knew they were there.  How could the world be so unchanged while our lives were thrown into intense turbulence?

Moore’s book is the secret journal she kept when she became a caregiver overnight for Howard, and how she handled the unusual caregiving journey they went on together.  It is a fascinating story of love, courage and hope which all caregiver families can learn many lessons from. More information about it is available on Moore’s web site.

My Response to My Mom’s Diagnosis

I was getting ready to play in my first ever doubles tennis tournament one evening, when the phone rang.  It was my Dad giving me the news that their family doctor told him that day that my Mom had Alzheimer’s disease.  (I had observed her memory problems during our cross-country visits, but not knowing anything about dementia or Alzheimer’s, I chalked them up to normal aging.)  What a bombshell for us!  I don’t even remember most of what I said during the rest of the conversation, other than I was as supportive as I could be 3,000 miles away and told him we would get through it together.  I then went out to play in the tennis tournament, but my body just wouldn’t do what my mind was telling it to do in order to play decently.  To this day, I’m sure my doubles partner wonders what the heck was wrong with me that night! Now you know, Diane.

If you or a loved one has received an Alzheimer’s diagnosis where did you fall on this continuum of reactions?

If you’re a child or spouse of an Alzheimer’s patient, would you have genetic testing done to learn how high a risk you are for contracting the disease?

Let’s discuss in the Comments below. . .

I “met” Mary Nix when she left comments here at TLeC and I visited her blog, EldercareABCBlog.com.  In one of her comments she explained she is a caregiver not only for her aging parents, but also for her younger sister.  Since that sounded unusual, I asked if I could interview her about her family’s story.  I’m very pleased to bring you this informative and touching caregiver interview.

How and when did you become a caregiver?  Please tell us about your care recipient(s).

When my younger sister was six years old, she was diagnosed with Cornelia DeLange Syndrome at the Cleveland Clinic. To this day I recall my parents’ conversation concerning her diagnosis and the Cleveland Clinic Doctors’ suggestion to put her in an institution.  They wanted to do what was right by all of their children and their final decision was to keep her with us at home. At the time I was eleven and I recall being greatly relieved by their choice.  Certainly, that isn’t to judge the fact that other families do choose that option, but for me, I just knew I didn’t want my little sister to leave our home. Growing up with a developmentally delayed sibling definitely helped prepare me to become a caregiver in many ways.  You are naturally protective, but you also learn the necessary advocacy skills that protecting the vulnerable brings.

Later when my future husband brought up marriage, we also discussed that someday my life would involve caring for my sister, so I guess caregiving has always been in the back of my mind.  For many years we searched for a duplex that would meet our needs as my parents and sister grew older and would need more assistance.  Never finding a neighborhood we loved as much as my parents’, eleven years ago, when they were 71 and 78, we added an addition that changed my parents‘ home into a duplex.  Shortly after that, Mom was diagnosed with Colon Cancer and my caregiving duties began when she returned from the hospital after a successful surgery.

Linda’s response:  Your childhood experiences certainly made you aware of caregiving at a young age, and prepared you for elder caregiving later in life.  Those are important insights that many adult children don’t have as they start their caregiving journey.  The description of your parents’ decision about keeping your sister at home with the family reminds me again that placement outside the home is never easy, no matter the age or which family member it’s being considered for – child, spouse, sibling or parent.

What do your caregiving responsibilities consist of on a daily, weekly or monthly basis?

Daily I cook dinner for my folks and run errands for them.  On any given day I may accompany one of them to a healthcare appointment to be an extra set of ears as they don’t hear as well as they used to. I also help them track their medications, refills, socialize with them, track doctors appointments and necessary procedures. If they get ill, my duty lists grows.

Linda’s response:  Being that extra set of ears is also part of being your Golden Oldies advocate for health care.

A couple of times a week I spend time with my younger sister going shopping, looking things up on the computer or just hanging out. It is a nice time for both of us.

When she was tested at the Clinic, it was explained that the part of her brain that comprehends things was fully developed, but one of the areas there was a delay in was communication and the ability to communicate.  I can only imagine how hard it has been on her for part of her brain to truly understand her situation, but the other to not be able to explain it all.   When she was very young we all took sign language, which helped her a great deal.

As an adult, her ability to express herself has improved, she has a great sense of humor and she is really a hoot to spend time with.  One thing I’ve seen over the years is that due to a lack of understanding, many people assume a lot of things about the handicapped.  This includes the field of medicine.  My Mom and I are involved in a group that is headed up by our family Dr. that will be creating educational videos for medical school students and other doctors on how to treat the developmentally delayed population. It is a very exciting project to be a part of and I am thankful that Mom’s lifelong activism continues.

Linda’s response:  In two paragraphs you have opened up an entire world of caregiving I’ve had no exposure to.  It adds another perspective for us who care only for Golden Oldies – and I suspect it is a caregiving experience with more similarities than differences.  I think the medical profession needs to be educated more on how to treat the senior population, and their caregivers, as well.

If you presently work (full or part time), how do you manage the time commitment involved in caregiving?

I work for EldercareABCblog.com, Home Education Magazine and run a web business with my husband.  All of these entail work at home, so I am extremely blessed to be able to adjust my schedule when needed, but I do keep a huge calendar on my wall to coordinate all of our endeavors.  I get up early and go to bed late!

What are some ways your life has changed since you became a caregiver?

I had always considered myself to be organized, but as my caregiving responsibilities have grown I’ve learned to not only organize, but also to prioritize!  I have also learned to let go of the fantasy of a perfectly clean house.

What is the most challenging aspect of caregiving for you?

I have had to learn to relax no matter what circumstances we are dealing with.  I’ve never had an affinity for nursing and medical emergencies always caused me great stress when they came up.  As an adult, I took CPR and Red Cross classes to try and overcome my uneasiness, but it wasn’t until I had to deal with repeated situations that I realized I had better learn to go with the flow.  We’ve had times of quiet when all is well and other times where both my parents were hospitalized.  We also have the situation of my handicapped sister who needs care in the midst of such situations, so it was either sink or swim and I chose to swim. As a caregiver I had to learn when to say no and to take care of myself so I could continue to offer care.

What is the most rewarding or enjoyable part of caregiving for you?

My parents and sister are kind, passionate and fun individuals to spend time with, but I think the most rewarding part of our journey has been the daily interaction my boys enjoyed growing up with that unconditional love and input from them.

Linda’s response:  I love the multigenerational interactions your family situation created.  There is a special bond between grandparents and grandchildren that is unique and precious.  Also, Mary, you are modeling for your sons how to be an extraordinary caregiver!

What do you do to take care of yourself to prevent caregiver burnout?

I’ve certainly experienced burn-out, so I’ve learned the hard way that if I don’t prevent it, I’m only hurting myself and my family. I’ve learned to advocate for myself, to take care of my health, exercise and to make time for my interests and hobbies.  I learned this after the time both parents were hospitalized and I felt like I was at the end of my rope.  It’s a real balance, but I sought and found support and learned more about resources that were available to us.

Linda’s response: It’s too bad you had to reach that low point. Can you elaborate on the support and/or resources you found when you reached burnout? Not everyone may have the same resources available, but perhaps it will spark ideas for support they haven’t thought of yet.

My husband and kids knew I was reaching a low point, so they kept on me.  I did look into going to a local support group, but I found that every time there was a meeting we either were in the midst of a crisis or had an appointment that could not be changed.  I found a great deal of moral support from visiting different online caregiver groups and by talking to friends who were in similar situations.

Our family doctor at that time was proactive in my care as well.  He helped me to learn to accept those things I could not change and to seek out and find the resources I needed to change those that I could. He and my husband both encouraged me to talk to my parents about my limitations.  This was difficult for me, as I did not want them to feel that they were a burden in any way.

I finally did approach my Mom and as often has been the case in my life, she was my biggest advocate. I told her that as often as we joked about us switching roles and me mothering them, I didn’t want that switch. I loved providing care, help and nurturing, but I still wanted and needed them as my parents. Maybe not in the role they had always played, but their wisdom and guidance were still very much needed. They were relieved that I had brought my being burnt out up, as they had been seeing my stress and that caused them to feel like a burden, even though it was not my intent.  By discussing our situation, it freed us all up to be more frank, to set boundaries and to know when we needed outside resources and when we did not.

Linda’s response:  I suspect those frank discussions with your Mom (and Dad) were difficult to have, yet so important and powerful in their outcome, both for your well-being and theirs. Just reading about it, imagining the conversations, brought tears to my eyes, Mary.

There were times that I did not understand some of my sister’s occasional issues, which added to my burn-out, so I contacted a group called Welcome House that my Mom helped to create in the 70’s. Welcome House provides group homes for handicapped adults and they offer training for their caregivers. They generously allowed me to sit in on some of those classes and I learned some great caregiving and coping skills from them that also eased my burn out.

Linda’s response:  Wow!  How ironic it is that your mother helped to create this group, not realizing that her other daughter would be a recipient of her benevolent efforts so many years later.

What, if anything, do you use for inspiration or motivation during the more difficult times?

I try and count my blessings and remind myself that I can’t control everything.  I was shocked into reality in June of 2004 when my 52-year young husband suffered a massive heart attack.  I can remember almost every moment of that night, the ambulance ride, my children’s faces and the E.R. doctor who told me my husband’s attack was called a widow maker and most individuals don’t make it through.  We were prepared for our lives to change drastically, but we were blessed to have some of the best surgeons in the state and they just happened to be finishing up another surgery at midnight that evening and saved my husband’s life.  That night profoundly changed me.  It was no longer my parents who were immortal, but I saw what ‘could’ have happened to my husband and I saw that the little irritating issues were no longer important.

Linda’s response:  I am so sorry your husband and family had to deal with this scary health crisis and glad it had such a happy ending!  Things like this do put things in perspective, that’s for sure.  May his good health continue for many years to come!

What is the best caregiving advice you’ve ever received?  Given?

Take care of yourself so that you can care for others.

Can you talk about what types of caregiving living choices exist where you live, which one your loved one(s) chose and why? For example, in California, there are a range of assisted living arrangements that Golden Oldies may select from if they do not move in with their family.  They range from independent living, to some assistance, to board & care homes, dementia care, and nursing homes.

There are independent living communities here that offer full independence, to some assistance and are usually attached to a full-fledged nursing home. They seem like a nice choice as individuals can move from one level to the next within the community.  I haven’t heard of any board and care homes here, but we do have a nursing home a couple of blocks from here that is a beautiful facility. One half is the nursing home and the other is the dementia facility.  We chose to build our duplex to help my folks live here as long as possible and to be here to help care for my developmentally delayed sister.

The group I spoke of above, Welcome House recently built a new home, the Michael T. George Center that is designed to serve the aging developmentally delayed population.  We were there for the groundbreaking and visited its grand opening and I wish EVERY home for the elderly could be built this way.  It is so homelike that it seems more like a resort than a nursing home.

Linda’s response:  I must admit, being focused on caring for aging parents and relatives, I never thought about the resources our country, and the world, must create for the aging developmentally delayed population as well.  Thanks for raising our awareness about this very critical arena!

Do you have any other tips or resources you would like to share with the TLeC community?

Just as our children are not born with an accompanying guidebook, neither are our aging parents.   When I was a new Mom I found great support within the La Leche League Community.  I always suggest that caregivers find those in a similar situation near them or online to get the support and ideas needed to help them along the way.    Whether caring at home or in assisted living – these issues take time during an already full time in a caregiver’s life.  With a little planning, community and tips and tricks from others we are able to move forward successfully caring for our mature family members.

Thank you for being so open and honest about your life from childhood to the present day.  I’m certain your experiences and wisdom will help other family caregivers in many, many ways!

Thank you for inviting me.  I have done many interviews, but I have never been interviewed before!

Although my boys are both in college and no longer homeschooling, I continue to do a bit of writing for Home Education Magazine.

The majority of my time is spent working with EldercareABC, Inc. It is a wonderful group that has been created by Steve and Sandy Joyce.  Steve and Sandy helped care for Steve’s folks in Ireland for ten years and Sandy’s Mom before she passed away.  Although we have never met in person, they offer a great deal of support to me as well. Their site truly is created by caregivers for caregivers.

Please write your questions and/or comments for Mary Nix in the Comment section below.

This is Part 3 in a 3-part series.  Please click here to read Part 1 which contains the background ideas these lessons are built on. Also read my brief “Word of Warning” in Part 2 to keep from “shoulding” all over yourself and for a prior lesson in the language of dementia.

I hope you are starting to get the hang of communicating more effectively with your aging parents who have memory loss, dementia or Alzheimer’s disease (AD).  The very first step is becoming aware of what words we choose and how these words can help us reach the goal of making daily life with them as stress-free as possible.

Have you been practicing this “new language” in conversations with your Golden Oldies?  Can you see why we’ve identified some things as Don’ts because the words used can trigger anxiety and/or arguments with our care recipients? Are you starting to apply some of the Do’s that encourage peaceful and more fruitful verbal exchanges?

Remember, learning a new language takes time and repeated practice so be patient with yourselves.  Now on to a few more Do’s and Don’ts in this lesson.

Don’t Reason or Argue

It is hard to break our “normal” patterns of communication.  When someone asks you a question, you answer it logically — right?

Well, not when it comes from a memory-impaired individual.  Here’s an example:

Golden Oldie with AD: “What doctor’s appointment? I don’t need to see the doctor.  There’s nothing wrong with me.”

One response:  “You’ve been seeing Dr. So-and-So every three months for the past year. It’s on the calendar and I told you about it yesterday and this morning.”

Instant Replay:  “It’s just a regular checkup.  I’m sorry if I forgot to tell you.”

Some Do’s illustrated by the above exchange are:

• Give short, one sentence explanations.

• Accept the blame when something’s wrong in the memory-impaired person’s mind, even if it’s a fantasy.

OK, it’s true confession time again.  Here’s a conversation I had with my mom when she was in the earlier stages of AD:

Mom:  “I can’t find my purse.  Someone must have stolen it from my apartment.”

My reply:  “What?  Don’t be ridiculous, Mom!  No one has burglarized your home. You must have misplaced your purse.  Let’s look for it.”

Instant Replay:  “That’s a scary thought, Mom.  I’ll make sure the alarm is working properly.  Would you help me fold the laundry?”

The Instant Replay response (if I only knew then what I know now) is preferable because I:

• Respond to feelings (fear or anxiety), rather than the words.

• Am being reassuring and patient.

• Distract them to a different subject or activity.

Simplify, Simplify, Simplify

Open-ended questions are very hard for a memory-impaired person to process as well as reply to, and can create anxiety in them. For example:

Son:  “Dad, where should we go today?”

No response.

It is wiser to give them a simple choice between two things, or even direct their choice, such as:

Instant Replay #1:  “Dad, should we go to the park or the library today?”  OR

Instant Replay #2:  “Dad, it’s so warm and sunny outside, let’s go get some ice cream.”

Allow lots of time for comprehension; then triple it in all conversations.

Try to repeat instructions or sentences in exactly the same way.  Even changing one or two words can confuse a person with dementia.

Spouse: “Please drink your milk. (pause) You need to drink all your milk.”

Instant Replay: “Please drink your milk. (pause) Please drink your milk.”

Keep in Mind

Our goal is to keep our dementia care recipients as calm and anxiety-free as possible every day. This will help to increase their quality of life tremendously.

Memory loss progresses daily, so please do not take it personally if your care recipient speaks hurtful words to you.  Try putting yourself in their place and imagine how afraid you would feel.

Practice compassion and generosity in your words and actions daily.

How are you progressing in mastering this new language?

If you have challenges you need help with or have examples of verbal exchanges you’d like to share, please leave them in the comment section below and I’ll be sure to reply.

Outside Resource:

Compassionate Communication with the Memory Impaired by Liz Ayres

This is Part 2 in a series. Please click here to read Part 1 which contains the background ideas these lessons are built on.

It isn’t easy to change our way of communicating with our memory-impaired aging parents, but in order to make their lives (and ours) easier, it is helpful to follow some basic Do’s and Don’ts.

A Word of Warning

As I cover some “Don’ts” about using the language of dementia, you will most likely feel guilty because you will be hit with the horrible realization you’ve been doing them. Don’t beat yourselves up — we have all done them! And done them many times. And are still doing them — yes, even though I’ve been a family caregiver for over 10 years, I still screw up and communicate poorly sometimes when in theory I know better.

But just like learning any new language, begin with the basic underlying “grammatical rules” and start using them in your next conversations with your Golden Oldies who have dementia. It takes time to become fluent in a new language, so cut yourself some slack. Use each subsequent conversation as a practice session and see how you do. Just the fact that you’re aware of these better ways to communicate with your Golden Oldies is a wonderful step in the right direction!

So, put the guilt aside, read on and learn.

Don’t Remind Them They Forgot and Don’t Question Recent Memory

I recently wrote a post explaining why I don’t like being asked the question, “Does she know you?” when I tell people my mom has Alzheimer’s disease. There is another side to that issue when family caregivers speak with loved ones experiencing memory loss or dementia. I’ll explain . . . .

My mom and I were sitting in her board & care’s living room a few weeks ago with another resident who has dementia. (I will call her Sally, but that is not her real name.) Sally’s sister arrived for a visit with another couple. They all greeted Sally with hugs. Her sister then said, “Sally, do you know who this is?” referring to the other couple. When she didn’t respond right away, the gentleman visitor said, “Of course you do, Sally! I’m your brother-in-law, Joe, and this is your sister, Mary. Don’t you remember us?”

I know, you’re probably thinking no big deal, but I cringed when I heard her ask “Do you know who this is?” Sally is aware enough to understand the question, but based on her blank stare and lack of a reply, she probably did not remember who the other couple was (even though they were relatives but ones she doesn’t see too often).

I know the visitors meant no disrespect to Sally, and used the words we all use automatically when greeting people. But with that exchange, Sally might have felt embarrassed that she didn’t know who they were, especially when she was then told they were family members. She also could have been upset that she didn’t remember who they were. I cringed again when her brother-in-law said “Don’t you remember us?” Ouch!

It is not kind to someone with dementia or Alzheimer’s disease to point out their memory loss (which is a disability like any other) over and over again. It may take a minute or two of thought before speaking to avoid doing this, but the words we use matter a great deal.

Instant Replay: Instead of saying to Sally “Do you know who this is?” it would be kinder to say, “Sally, look who’s here to visit you today: Mary, your sister and her husband, Joe.” Immediately identify who is visiting, rather than putting the memory-impaired person in an awkward or embarrassing situation.

In addition, try to avoid using these questions in conversations:

• Do you remember when we ________?

• What did you do today?

• How was lunch (or any recent activity)?

True Confessions

Another example comes from my own experience. And believe me, I look back and regret doing this, but I didn’t know any better at the time.

One of the first signs my mom had Alzheimer’s disease was that she repeated the same question multiple times within five minutes. It could have been something as simple as, “Is today Thursday?” I would answer her sweetly the first time, but then every time after that when she’d ask the same question, I’d say something like, “Mom, I just told you that. Yes, it’s Thursday.” She would look at me with a blank stare or sometimes say “You did?” Then she’d shrug and we’d go on. I had very little patience for her repeated questions, and looking back I realize how unkind I was by pointing out her memory loss repeatedly. And then compounding it by speaking in a frustrated tone of voice or rolling my eyes when my patience was completely shot. UGH!!

Here’s another example of how to not remind them they forgot:

Golden Oldie: “Steve hasn’t called for a long time. I hope he’s feeling OK.”

Don’t say: “Steve called yesterday and you talked with him for quite awhile.”

Say instead: “You really like talking with Steve, don’t you? Let’s call him when we get back from lunch.”

Kinder Solutions

If your Golden Oldies repeat the same question multiple times they are not trying to annoy you. They truly believe it is the first time they’re asking you the question. Our job is to reply as if it’s the first time they’re asking the question. This isn’t easy and it takes a load of patience to accomplish, but try your best! Remember, their reality is now different than ours. Reminding them they forgot won’t change this fact, and will only make them feel worse.

Keep in mind this new language will take lots of practice to become comfortable with! So hang in there and keep practicing in everyday interactions with your aging parents.

Have you had these type of conversations with your Golden Oldies with dementia? Can you add any tips you’ve learned?

Please write them in the comment section below. If you’d like an easy guide on how to leave comments on the TLeC blog, click here.

Outside Resource:

Compassionate Communication with the Memory Impaired by Liz Ayres

Many of our aging parents (or Golden Oldies as I prefer to call them) will eventually develop some type of memory loss. It usually starts as the forgetfulness we have come to expect with normal aging, but then it may progress to dementia or Alzheimer’s disease (AD for short, which is the most common type of dementia). I’ve witnessed the full progression of memory loss with my mom as she has lived through the stages of Alzheimer’s disease so my perspective is that of a family caregiver for an aging parent with AD.

We Start by Changing Our Mindset

If you keep the following things in mind, it will help in the ways you think about and communicate with your aging parents:

• Our aging parents’ memory loss is a disability. Asking them to remember is like asking a blind person to read, or a person confined to a wheelchair to walk.

• While what they do may seem crazy to us, it isn’t. They do or say normal things for a memory-impaired person. For example, they don’t hide the house keys, they put them in a safe place (in their point of view) and then forget where that is. If they were deliberately trying to exasperate us, they would have a different diagnosis.

• People with memory loss are scared all the time. As a result of the fear, they may become passive, uncooperative, hostile, angry, agitated, verbally abusive or physically combative — or all of the above at different stages of AD. As a result of our understanding and use of the language of dementia, we can alleviate many of their fears and resulting behaviors.

• Put yourself in their place and raise your level of patience, generosity and graciousness.

• We can’t control memory loss, only our reaction to it.

It’s not the person with the memory loss that learns a new language. It is you and I, their loved ones and caregivers, who have to do so in order to maintain their dignity and quality of life. In the coming lessons, I will cover some do’s and don’ts for communicating with our AD care recipients through the language of dementia.

Have you changed your mindset by being a caregiver for an aging parent with memory loss?

Can you add more ideas to the attitude adjustments above?

If you’d like to leave a comment but aren’t quite sure how, follow the easy step-by-step guide by clicking here.

Outside Resource:

Compassionate Communication with the Memory Impaired — Liz Ayres

“How can I possibly find time to write in a journal?” I said, thinking of my already never-ending “To Do” list.

In this brief and encouraging book, “You Want Me to Do What? Journaling for Caregivers,” author B. Lynn Goodwin shows caregivers how we can make the time — starting with just a few minutes once a day as a “goal, not a mandate.” And why it is worthwhile to keep a journal for our own mental health and stress relief.

How Do We Begin Keeping A Journal?

Goodwin includes ten short writing tips to refer to. I’ve already used them and a few I’ve found very helpful are:

1. Start where you are. Start with the mood you are in. Start with what you see and hear. Start with what needs to spill out.

2. Feelings ebb and flow like the tides. Write what is true for you in the moment. When your truths change, write different things using the same sentence start.

3. Write about specific thoughts, worries, and dreams. Write about the day you will be free from this phase of your life.

What is a Sentence Start?

The book includes many interesting beginnings for sentences to complete to get started writing. For example, in the chapter entitled “Thoughts About Me,” some sentence starts are:

• Sometimes I wonder . . .

• I don’t like to brag, but . . .

• If I let myself cry . . .

The chapter called “Thoughts About Caregiving” include these:

• When I came into your room this morning . . .

• If I could change one thing in our routine . . .

• When do I get to . . .

And here are a few of my favorites from the other chapters:

• I love you, and . . .

• I wish I understood . . .

• It will be fun to . . .

• Parents and children should . . .

• I want other caregivers to know . . .

Why Is the Time Spent Journaling Worthwhile?

In Goodwin’s words:

This journal is your personal record of your emotional truth. It is a place to heal and grow. Don’t judge away your negative thoughts. They are only thoughts — not actions . . . . Get your story, your nuances, your frustrations, your hopes and your love on the page. Your story is buried treasure.

Caregivers need to make time for self-care, and keeping a journal is one excellent way to accomplish this. I find writing about my caregiving experience helps me clarify the questions rattling around in my head, as well as get my deepest fears and worries out onto paper. And sometimes answers or a new perspective about these questions come to me, often long after the writing session is over.

I don’t plan on sharing my off line journal with anyone, so it is a safe place for me to vent about both the good and the crappy parts of caregiving. In doing so I am creating a record of my unique caregiving journey. And by looking back at things I’ve written days or weeks ago, it has already provided me with a sense of how issues and my feelings about them ebb and flow.

The time I’ve written in my caregiving journal so far has been brief, but it has been very therapeutic. I know I’ll continue to chronicle this stage of my life.

Why don’t you give it a try? Let me know how it goes for you.

Do you keep a journal now? Is it about caregiving or something else? What do you get from the journaling experience?

Please share your comments below.

More information about B. Lynn Goodwin’s book and journaling for caregivers can be found on her website WriterAdvice.com.