I’m very proud and happy to announce that my article, “Daily Activities for Late Stage Alzheimer’s Disease Patients,” has been selected as the winning entry in The Great Alzheimer’s Blogging Competition run by The Disabled Shop Blog!

These are the flattering comments the judge wrote about my post:

An excellent blog – Linda identified a need for more information about caring for someone with dementia in the later stages and answered that need with a compassionate and revealing blog. It strikes a great balance between practical advice, realism and a touching personal account of how dementia fundamentally affects a person. This is a brilliant post.

Please also take time to read the other contest entries while you’re over at The Disabled Shop Blog. They each share different and important perspectives about this horrible disease.

My greatest wish is that a cure will be found soon so that no more families have to live with this progressive and debilitating disease.

Shameless Plug  :-)

Please remember you can hire me to write for your blog, business or organization.  Click on the Writing & Editing Services link above for further info. Thanks!

Related posts:

1. Daily Activities for Late Stage Alzheimer’s Disease Patients
2. I’m an Official SOB and I Couldn’t Be Happier!
3. Family Caregivers Communication Class — The Language of Dementia, Part 1

[This post is  an entry for the Alzheimer's Research Blogging Competition at The Disabled Blog Shop.  The deadline to enter is March 31, 2011 so there's still time to get your entry in. Please read how to enter here.  You can help raise awareness of this horrible disease plus raise money for a great cause.  Let's work together to find a cure!]

A Little Background

My mother lived with Alzheimer’s disease (AD) for over ten years.  In the early stages, I was a long-distance caregiver, mainly providing information and support for my father who was her primary caregiver.  As time passed and the disease progressed, I provided more hands-on assistance for both of them, and then became her sole family caregiver after my father passed away in 2005.

There is much written about how to interact with Alzheimer’s patients in the early and middle stages, but it’s more difficult to find information for caregiving in the later stage of the disease when the patients’ abilities have severely declined.  I “winged it” in some ways as my mom reached the late stage, relying mainly on my instincts and what I thought I would like done if I was in her shoes as an AD patient.

Some think that because a patient’s abilities to think, remember and even speak decline greatly, there is no longer a “real person” in there looking out. I never agreed with that perspective and continued to operate as if my mom was a full participant in our activities.  Even if she didn’t remember the activity minutes after she experienced it, I chose to believe that while she was immersed in it, it created a better quality of life for her.  I realize that some would say I’m an eternal optimist, but a whole lot of good and very little (if any) harm comes from this thinking and the resulting actions.

Our “Activities To Do” List

I observed my mom’s abilities (or lack thereof) carefully, and also relied on what I knew her interests and hobbies were during her lifetime to create quality times we could share together. Here are some of the things I did with my mother while she was in the late stages of Alzheimer’s disease:

• Nature Walks.  I took her for walks to the park in her wheelchair when the weather allowed. She couldn’t walk or speak, but as I pushed her around the park near her home, I could see her eyes taking in all the surroundings.  The sunshine on her face and body, seeing the tress and flowers, watching the children play on the swings and playground equipment — each of these sensory experiences would bring a definite, albeit passing, smile to her face. She’d always had a “green thumb” and could make anything grow, so I believe the park with its seasonal changes was an environment she definitely enjoyed.

• Arts and crafts.  OK, she really couldn’t do even the most basic arts and crafts projects in the late stages of Alzheimer’s disease, so I would do them for her.  While I was creating a collage from magazine clippings, felt, buttons and other odds & ends, she would watch attentively, often reaching out to hold the raw materials I would be working with.  {Note: I was always on guard to make sure none of these materials ended up in her mouth!}.  When I would draw or color, she held on to a crayon or marker.  She couldn’t use it, but she would still grasp it in her hand as she sat next to me at the kitchen table.  She was a Girl Scout leader who did arts and crafts projects with our troop and at home with me, loved oil painting, all needle crafts and was a fabulous seamstress, too!

• Magazines and Photo Albums.  My mom was always an avid photographer; not in the professional sense, but as a recorder of family events, trips, and special times of our lives.  So I would plop a family photo album in her lap and she would slowly look through and turn the pages, often stroking the photos lightly.  I would talk at her (since holding a two-way conversation was impossible) about the people and scenes before her, even if she didn’t remember who the people were.  You may think I’m dreaming, but I truly believe she was taking in my words and absorbing the images before her.  The same activity prevailed with magazines I’d bring — “Better Homes & Gardens” and “Woman’s Day” were always her favorites, before and after she was diagnosed.  Decorating and antique hunting were other life-long hobbies of hers, and those magazines may have somehow been fulfilling that which she could no longer do.

• Story time.  She instilled a love of reading in me from early on, and I read to her until close to her last day on earth. I think she cherished the books I’d share with her.  Even when she couldn’t read the words, she still enjoyed the photographs and illustrations in books.  I bought an over-sized coffee table book filled with huge, detailed photographs of flowers that she looked at until the book fell apart.  I also read to her like she did to me.  And when her comprehension of what I was reading disappeared, I switched to children’s books, such as “Horton Hatches the Egg” by Dr. Seuss, “Caps for Sale” by Esphyr Slobodkina and “Goodnight Moon” by Margaret Wise Brown.  Sometimes she’d look at me with an amused expression that seemed to say, “Why are you reading this little kid’s book to me?”  But then she’d fix her eyes on the pages and never closed the book nor stopped me from reading it to her.

• Music.  I know my parents both loved music! We had a piano in our home, they took me to Broadway musicals starting when I was in elementary school, and they often had records playing to sing along with.  Again, we were not close to being music professionals, but I knew music was valued highly in our family.  I would bring CD’s over to play for her based on what holiday was coming up or around a theme, such as patriotic songs, Big Band music or favorite musicals.  We’d listen and I’d sing along.  Her eyes would simply sparkle during music sessions together.  I would also sing lullabies to her that she had sung to me as a child.

I believe in my heart of hearts that she got joy from the various activities we’d “do together,” and the quality of both of our lives was vastly improved by sharing them — even if they felt somewhat one-directional on my part at times.  I wouldn’t have missed these experiences for anything!

If your parent, friend or relative has AD or dementia of any kind, why don’t you try the above ideas or variations on them? Or, come up with different activities based on your unique knowledge of your loved one’s level of functioning and interests.

Take-aways from my Story

Being a family caregiver has heartache in it, but also love-filled and special moments if you keep your eyes and mind open to the possibilities.  Please don’t think that because a loved one’s abilities decline as a result of Alzheimer’s disease or dementia they can’t continue living a life filled with sensory richness and beauty each and every day!

No related posts.

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. . .

No related posts.

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

Related posts:

1. Family Caregivers Communication Class — The Language of Dementia, Part 2
2. Family Caregivers Communication Class — The Language of Dementia, Part 1
3. Family Caregivers Communication Class — Part 5: How to Talk with Aging Parents When They Can’t Speak

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

Related posts:

1. Family Caregivers Communication Class — The Language of Dementia, Part 1
2. Family Caregivers Communication Class — Part 1: Think Before You Speak
3. Family Caregivers Communication Class — Part 2: Speaking Easily About Difficult Topics

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

Related posts:

1. Family Caregivers Communication Class — Part 1: Think Before You Speak
2. Family Caregivers Communication Class — Part 5: How to Talk with Aging Parents When They Can’t Speak
3. Family Caregivers Communication Class — Part 4: Talking with Hearing Impaired Aging Parents

There is a question I am asked very often when I tell people my mom has Alzheimer’s disease.

They ask, “Does she know you?”

I don’t know how to answer them. And it is a very hard question for all caregivers of dementia or Alzheimer’s patients to answer.

People ask that particular question because it is the one major fact the general public has heard most about Alzheimer’s disease — eventually the patient may not recognize his or her loved ones. There has been more information about dementia made available in the last ten years due to the work of the Alzheimer’s Association, celebrity spokespeople, books, movies and the mainstream media. For that I am very glad. But this increase in knowledge turns out to be a double-edged sword for me, because it leads to that dreaded question being asked over and over again, “Does she know you?”

It is simply hard (if not impossible) to know if our care recipients with dementia still know who we are. And it’s painful to have to face this possibility every time it is raised.

The Answer Changes Over Time

While she was in the early stages of Alzheimer’s, I do believe my mom knew who I was. No worries then.

When she declined into the middle stages of Alzheimer’s disease, I wasn’t sure if she knew who I was. When I’d arrive for a visit, she would respond to my greeting and embrace with smiles, hugs and the appropriate words — “Nice to see you,” for example. But she didn’t use my name in her greetings or conversations. I began to suspect that if any other person came in and greeted her warmly, she would provide them with the same exact friendly response. The replies may have been her good manners and graciousness kicking in.

The question began in my own mind then, “Does she still know me?” You can imagine how painful those thoughts were for me and are for all family caregivers!

After a while I started to greet Mom with, “Hi Mom! It’s Linda,” assuming she’d know who Linda is — after all I’m her only child, her daughter! I thought certainly she would always know the name “Linda” signified me! At least in my heart I wanted to believe she would.

Then one day in the last year, with her now in the late stage of Alzheimer’s, it dawned on me that she really might not know who “Linda” was in her world any longer, as much as I wanted her to. So I changed my greeting to “Hi Mom! It’s Linda, your daughter.” Since she has aphasia and rarely speaks now, I have no way of knowing if adding these words helped or not, but in my heart I still believe when we look into each other’s eyes, she knows who I am.

I guess there will always be some level of denial for me. I don’t want to admit that she doesn’t know who I am. I console myself with the thought that even if she doesn’t know I’m her daughter any longer, hopefully she knows I’m a woman who visits her, spends quality time with her, and cares deeply about her well-being.

When people ask family caregivers if their care recipients know them it is a very hard, and painful, question to try to answer. Yes, people ask out of concern, but honestly it’s better if they don’t ask family caregivers that question at all!

Have you been asked this question? How have you responded? Did you have a hard time answering it? Please share with us in the comment section below.

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Photo Credit: -bast-’s photostream

Related posts:

1. Family Caregivers Communication Class — Part 5: How to Talk with Aging Parents When They Can’t Speak

I just got back from decorating my mom’s room at the board and care cottage for Hanukkah. While she was being fed lunch in the kitchen, I played a CD of Hanukkah music as I cheerily put up the decorations. For about two-thirds of each day now, Mom, age 99, is in bed in her room, so I decided it was more important to put the decorations up in there rather than in the living room and kitchen which I have done in previous years.

If you are planning to do some holiday decorating for your aging parents (and I hope you are), here are things I realized as I went along. The results look somewhat different than how we normally decorate at our house.

Decorating Changes I Made

Since Mom spends most of her time in bed, I put the majority of the decorations on the walls closest to her and lower down on the walls, so when she is lying on either of her sides they will be at eye level. I also put a few on the far side of the room, but I’m not really sure how well her eyes focus for distance, so the majority of the decorations are on the walls and closet doors closest to her or in her line of sight. I thought of the perspective as the “Bed Cam!”

I used the large-size decorations with bold colors on them because I think she will be able to see those more clearly than some of the smaller, daintier, pastel ones.

I bought a new stuffed animal to add to her stuffed animal collection — a cute Hanukkah bear that she can hold or cuddle any time.

Instead of real candles in the menorah (see photo above), I brought over an electric menorah that plugs into the wall and lights up. I don’t want to create any fire hazards in the board and care cottage!

I didn’t overdo the decorations; keeping it simple because Alzheimer’s disease patients could be agitated by too much stimulation (or changes in their rooms). Although at this late stage I’m not sure how aware my mom is of her surroundings, except for what is directly in front of her face.

I set the volume on the CD player a little louder than usual to insure she could hear the Hanukkah music from bed. (Years ago we had to take away her hearing aids because she would pop them out of her ears and start chewing on them, not knowing what they were.)

What Happened Next — Ta-Dah!

When she was finished eating, the caregiver brought my mom to her room to see what I had done. Unfortunately, she was already tired out and her eyes were closed as they wheeled her wheelchair into the room. Even though her eyes were shut, I told her I was there and had a surprise to show her . . . but she didn’t open her eyes. I stayed another 45 minutes, hoping she would wake up, but she didn’t.

Was I disappointed that I couldn’t share my splendid decorating job with her? I sure was!

Did I shed a few tears that we couldn’t share the fun of this together? I sure did!

Did I know I needed to change my expectations for the holidays as my mom aged? I sure did! And I thought I had this part down pat, but obviously I don’t.

So I’ll go back there tomorrow morning when she’s more likely to be awake and alert, and give her a “tour” of her decorated room then. One “plus” side of Alzheimer’s disease is that the decorations will be “new” to my mom every day during the holiday season!

Have you had to change your holiday traditions due to your parents aging? In what ways? How did you cope with it?

_________________________

Photo Credit: mamamusings’ photostream on Flickr

Related posts:

1. TV Watching and Our Aging Parents – Part 1
2. Role Reversal or Becoming Your Aging Parents’ Parent
3. The Roller Coaster Ride of My Life

This is Part 5 in a series. Please see the bottom of this article for a link to the first four parts of the Family Caregivers Communication Class.

We take talking with our parents for granted . . . until our aging parents can’t speak any longer.

My mom gradually stopped speaking and since October 2007 she only utters a few words or phrases occasionally. When she does speak, the words are often unintelligible, don’t make sense, nor relate to the conversation around her. I didn’t know it at first, but this medical condition is called aphasia. I thought it was just part of the progression of her Alzheimer’s disease.

What My Instincts Told Me To Do

As my mom became less talkative, I found myself looking for different ways to connect with her. These are some of the techniques I’ve used successfully:

Have eye contact with your aging parent before you speak. This helps my mom to focus on my words and facial expression.

Talk slowly, enunciate clearly and keep your sentences short. Put only one thought into a sentence. When I do this, Mom seems to follow some of what I’m saying.

Aphasics haven’t lost their intelligence, just their ability to speak. They are like a baby who understands and responds to language even before they can say words, phrases and/or sentences. I think my mom understands more than she can express.

Be inclusive when you speak. I tell my mom about all family news, events and contact from friends far and wide. I’m not even sure she knows who I’m talking about due to her memory loss, but I share happy things with her all the time. In my heart, I think she understands. I also avoid sharing bad news, either local or global, because why upset her? In my opinion, it’s just not necessary.

Add nonverbal communication into your conversations. Many times I “cuddle her up” which means lots of hugging, kissing, and massaging. Even if we don’t talk, she can feel my love for her through the sense of touch.

Watch your Golden Oldie closely when talking with them. While they may not verbalize, be alert for other ways they are “speaking” to you. My mom will nod ever so slightly or move her head side-to-side in response to a simple “yes” or “no” question, such as “Do you want to look at this book with me?” Sometimes she’ll look away, and I take that as a “Not interested” response. She also communicates in different ways with her eyes — raising her eyebrows at people at times, or closing her eyes tightly when she doesn’t like something.

Even if the words are gibberish, the inflection in her voice makes me think she’s saying something important to her. I reply in a similar tone to reassure and encourage her. Sometimes I say, “Mom, I didn’t quite understand you. Can you repeat it please?” But she isn’t able to.

Bring visual aids to enhance your “conversations.” I often bring cards I’ve gotten in the mail, some flowers, a stuffed animal, picture books, or photos (both old and new) to share with her and focus our attention on together. Seeing something she likes will spark a few words at times.

What I’ve Learned About Aphasia

Aphasia is an impairment in the ability to speak and understand others, and people with aphasia may have difficulty reading and writing, too. While it is most common among older people, it can occur in people of all ages, races, nationalities and gender. The most common cause of aphasia is stroke; about 25-40% of stroke survivors acquire aphasia. It can also be a result of head injury, brain tumor, or other neurological causes.

Aphasia affects about 1 million Americans, or about 1 in 250 people. More than 100,000 Americans acquire the disorder each year. As in my case, most people have never heard of it until they are facing it with a loved one.

There are many types of aphasia. Some people have trouble speaking, while others have a hard time following a conversation. In some people aphasia is fairly mild and you may not notice it right away. In other cases it can be severe and will affect all communication skills — speaking, writing, reading and listening.

Through my research I’ve found the additional tips below from the National Aphasia Association for communicating with our aging parents who have aphasia:

• During conversation, minimize or eliminate background noise (such as TV, radio, other people) as much as possible.

• Other modes of communication can include writing, drawing, and gestures.

• Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.

• Keep communication simple but adult. Reduce your own rate of speech. You don’t need to speak louder then normal, but do emphasize key words.

• Don’t talk down to the person with aphasia. Their intelligence is still intact; don’t let others assume they are mentally retarded or mentally ill.

People who have aphasia as a result of a stroke or head injury may recover their ability to speak and communicate in time.

Aphasia and Alzheimer’s Disease

The impact of aphasia on relationships varies from family to family. My mom’s aphasia is part of her progressive brain deterioration due to Alzheimer’s disease. She will never recover her ability to speak, because the ideas and thoughts that she could express are disrupted along with her ability to communicate.

When my mom speaks I wonder if she’s thinking “What the heck happened to me?” because her words don’t come out right. Or does she think she’s communicating perfectly clearly? I’ll never know the answer to these questions. She doesn’t appear frustrated, so in my heart I hope she’s not.

What has been your experience caring for someone with aphasia?

What are your tips on how we can better communicate with them? Please write them in the comment section below.

Click here to read the first Four Parts of the Family Caregivers Communication Class.

Related posts:

1. Family Caregivers Communication Class — Part 1: Think Before You Speak
2. Family Caregivers Communication Class — Part 4: Talking with Hearing Impaired Aging Parents
3. Family Caregivers Communication Class — Part 3: Dealing with Pessimistic Aging Parents

Missing children grab headlines, but missing senior citizens are far more common. In the United States there are currently more than 5 million people living with Alzheimer’s disease and that figure is expected to grow to as much as 16 million by 2050.

According to an article by Alex Johnson, an MSNBC reporter,

“About 60 percent of such patients wander away from their homes or care facilities at some point, according to the Alzheimer’s Association; about half of those who are not found within 24 hours suffer serious injury or even death.”

The North Carolina Center for Missing Persons instituted the Silver Alert program in November 2007, inspired by Amber Alerts for missing children. Of the nearly 40 alerts issued in North Carolina, all but four of the missing persons were found alive, the Department of Crime Control and Public Safety said. The numbers are almost identical in Texas, where a similar program was also implemented last year.

Rep. Tom Latham, R-Iowa, who cared for his own father as he struggled through the final stages of Alzheimer’s, noted that few states have senior alert programs — only 11, with others considering them. At the time of my writing, there is a bill on the Senate floor sponsored by Rep. Lloyd Doggett, D-Texas, which would establish a national Silver Alert communications network to coordinate search efforts and give grants to states to take part.

Police and policy-makers said they would welcome the help, saying in general, it is harder to find a missing senior citizen than it is to find a missing child. People may think it odd if they see a child walking alone and approach them, but most people may not think it out of the ordinary if a senior is walking alone. Or they do not want to embarrass the Golden Oldie or invade their privacy if they’re outside on their own.

I’ve recommended before as part of a Senior Safety Net for Golden Oldies/our aging parents that they wear MedicAlert ID bracelets. These are also used in conjunction with the Alzheimer’s Association Safe Return program. Silver Alerts would take this concept to an even broader level of action and response.

I’m hoping this important program will be implemented quickly nationwide and prove to be as effective as Amber Alerts have been!

To read the original article which contains the 11 states that have implemented the program, please click here.

Related posts:

1. How a Bus Stop Helps Prevent Wandering in Alzheimer’s Patients