INTRODUCTION
This presentation is being made for residents of Sherman Plaza Condominiums, to support caregivers of friends or family members who are living with Alzheimer’s.
I am grateful to the Sherman Plaza Social Committee for giving me this opportunity.
Special thanks to Kellie Forrester and Lindy Knopke for organizing this event.
The presentation is based on an article I wrote called: “Advice to Dementia /Alzheimer’s Caregiver Newbies.”
It is based on my experiences with my husband Gregory, during his 12 years of living with the disease. He passed seven years ago.
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The story I am about to share with you is a very PERSONAL one. I’m comfortable with crying in front of you, however it is very difficult to cry … and talk at the same time.
So, if I get choked up, I will pause, take a few deep breaths, and be right back, probably before you even notice I have gone.
GREGORY, my husband of over 41 years, was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship. He was 55 years old.
Together, we were on the Dementia Journey for 12 years.
Let me say that I am NOT here today as an EXPERT in the field of Dementia and Alzheimer’s … but rather as someone who has EXPERIENCED it … DIRECTLY and INTENSELY.
Let me tell you a little about me …
I hold a Bachelor’s Degree in Liberal Arts, a Master’s Degree in Education, and an Advanced Certificate in Education Administration and Supervision.
I am an educator, have worked with children in regular education as well as children with special needs.
I was an administrator for a Talented & Gifted Education Programed & taught Jr High Spanish.
I have taught a number of university level education courses and seminars.
I have been retired for 25+ years but have been more than active as an educator, speaker, writer, poet, blogger, actor, opera supernumerary, children’s museum curator, flea circus ringmaster, and Dementia /Alzheimer’s caregiver partner.
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Next, let me tell you a little bit about Gregory.
GREGORY earned a Bachelor’s Degree from Wesleyan University in Connecticut & received his Master’s Degree from Harvard University in Architecture, with Phi Beta Kappa recognition.
He ran his own high end architecture and interior design firm and served as the architect of record for renovations at the Baha’i National Shrine in a suburb of Chicago, Wilmette, Illinois.
Gregory was a writer, an artist, was well versed in music and art history, was a concert level pianist, spoke French, and won many awards for his architecture and interior design skills.
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As I begin this presentation, let me say … that we cannot force someone to hear a message they are not ready to receive, but we must never underestimate the power of planting a seed!
Hopefully this presentation will speak to you in some ways and also plant seeds for the future on your journey as a caregiver for … and loving someone living with … Dementia / Alzheimer’s.
It may seem overly simple, but my message to you today is “You have the ability to choose.
CHOICE is in your hands and you have the ability to CHANGE.
This is important because as a caregiver partner, as the person who does NOT have Dementia/Alzheimer’s, you can change.
The person living with Dementia/ Alzheimer’s cannot.
Much of what you experience as a caregiving partner is or will be frustrating, frightening, overwhelming, confusing, physically taxing, and many other difficult adjectives I could use.
But if you look closely, if you allow yourself to be calm and to sit with your emotions, you will see what lessons they are trying to teach you, hopefully accepting the notion that it is your choice to change, there are also many gifts to receive as well!
Some of those gifts include:
Knowing you have helped a fellow human-being weather one of the worst possible storms one can live through and with which to die,
Learning how to give love without qualification if only because the person with Dementia cannot always return the favor,
Being grateful for and seeing the beauty in the smallest of interactions and experiences,
Becoming more aware of your own strengths and weaknesses,
And discovering what really matters in life and in your interactions with others
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If your relationship with the person living with Dementia has earlier been a good one, supporting them might be a little easier.
If the relationship has been a rocky one, it will be more difficult … if only because you must first overcome your negative feelings and emotions and the baggage which you have carried from the past.
Sometimes a difficult relationship can turn into a loving one and sometimes a loving one can turn into a constant battle.
Relationships will be different if the person living with Dementia / Alzheimer’s is your parent, your sibling, your spouse, or a friend.
Gregory always trusted me and differed to my decisions on his behalf.
He was usually calm and peaceful.
We were both very fortunate in this.
Not everyone is.
I have a friend whose husband strikes out at her, not because he is a violent person but due to his frustrations and lack of ability to no longer use language to express himself.
He was not by nature an abusive person but it is the best he can do to communicate his discomfort, fears, confusion, frustrations.
That doesn’t make it OK, just a little easier for the caregiver partner to understand and with which to deal.
AGAIN, you CAN change, they CANNOT!
You can change anger to love, fear to gratitude, anxiety to calmness, frustration to understanding, confusion to order, and I could go on.
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Scott Stabile; an inspirational, self-help writer and speaker; has said:
“We have more control over our thoughts than we tend to believe. If a movie you don't like is on TV, you change the channel.
If a song you can't stand is on the radio, you change the station.
And yet, when we're thinking thoughts that make us feel like crap, we often keep thinking them.
We lock ourselves in to the misery.
It is possible to change the channel on our thoughts.
You can tune to a station that feels better, that is rooted in love or creativity or beauty or anything that feels more uplifting.
Why not practice at it?
Why not play with giving ourselves more good-feeling thoughts as often as possible?
The mind is powerful, and it can feel impossible to shift its trajectory, but it's not impossible.
In fact, it's entirely possible, with focus and intention.
That doesn't mean it's easy, but misery isn't easy either.
I would rather give effort to feeling good, at loving myself and others, and at reveling in all the beauty in our world.
Not from a place of denial, either, but from understanding that there is so much more than darkness and pain here.
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Now back to my comments … My strongest advice to you, is that the person with Dementia is no longer his or her true self.
Slowly hey are no longer in control of their day to day life, actions, emotions, or thoughts.
They are not responding to you as the same person you used to know.
They are doing their best but since they slowly are losing control of self and cognitive abilities … their best often seems like their worst.
As the disease takes over and the person diagnosed with Alzheimer’s is slowly disappearing and changing, some days seem close to normal, others far from it, and some days in-between.
Cognitive abilities come & go, return as normal, often return diminished, & eventually disappear.
Every time you think you have something under control, know how to deal with a situation, how to distract a behavior, etc, it changes and you have to discover and create new ways of dealing with the same situation or a variation of it.
In the end, Gregory no longer had control of his bodily functions (eating and elimination,) no longer had any functional language at his command.
He no was longer mobile, so was always in his wheelchair, napped there, and needed to be mechanically moved from chair to bed to be cleaned up and at bedtime.
When he would become overly anxious, confused, or fearful … drugs were able to help him be more relaxed.
Use of anti-psychotic drugs get a bad rap! When used carefully they can benefit the person with dementia.
We were very careful to minimally dose his meds, monitor them closely … and never, ever used them as an excuse to make our job or our life easier.
One of the possible side effects of using these anti-psychotic drugs is that the possibility exists that the drugs can cause death, but honestly, and this is difficult to consider, since the disease only gets worse, in my opinion death is not the worst thing that can happen to a person!
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Moving on, know that as a caregiver partner you will be angry, frustrated, confused, frightened, exhausted, and more.
Know that these difficult feelings exist in your mind, in your reaction to what is going on around you.
If you can take a few seconds or minutes to take a few deep breaths, you can begin to change your mindset and move on … if only this time. Hopefully it will be a little easier to move on the next time!
Also, forgive yourself if you lose your patience, say something hurtful, or strike out … but always try to be quick to apologize.
When I lost control with Gregory, I would apologize saying: “I am so sorry.
"That was not the real me! It was my frustration or fear speaking.
'I love you and I am here for you.
"I will try very hard not to do that again! Please forgive me!.”
Sometimes, after a difficult interaction and apology, Gregory and I would hug, and rock, and cry into each other’s arms.
It would not necessarily make the next difficult time any easier but it would help us get over the current difficult interaction.
I tried to keep my sorrows to myself because I did not want to make Gregory feel bad, it was not his fault but the disease which was causing my sorrows.
When you need to cry, do so … privately … but only for a few minutes … then pick yourself up and carry on.
I learned how to cry in bed without waking Gregory, and if I needed a really good cry, I would take a shower since it would be private and I would get wet anyway!
No matter how much you hate what is going on, no matter how much you want things to get better, no matter how much you love the person, or perhaps no matter how much you dislike the person … you cannot change the trajectory of the disease.
You can only change yourself and your reactions, your responses, your thoughts.
When you are sad, try to laugh.
When you are worried, try to smile.
I find that one cannot be sad and laugh, or worry and smile, at the same time.
The positive response usually rules.
With Gregory, I realized well into his Dementia/Alzheimer’s, my main job became making sure that he always knew WHO he was and WHERE he was.
That he was in the RIGHT PLACE, doing the RIGHT THING, at the RIGHT TIME.
And if lost; physically or emotionally, that I/we would always find each other.
As often as I could, I told him I loved him and that I was there for him.
This always made him feel better even in the midst of some of our most difficult times.
It also made me feel better.
He felt safe with me and knew that he could trust me.
But that was in part due to my control of my own behavior.
As often as I could, I did not allow my real emotions to rise to the surface because I did not want to make him feel bad, especially since he was not causing my emotions to surface on purpose but rather the disease speaking.
He was doing the best he could so I had to do the best I could!
A final piece of advice … they say free-advice is worth what you paid for it … but hopefully you will consider the importance of this advice … as a caregiving partner be as good to yourself as you can.
Don’t be afraid to ask others for help, get outside help or respite care to relieve you of your overwhelming day to day responsibilities.
Make sure you keep yourself healthy, go to your own doctor appointments, try not to get into too much anxiety eating, avoid overuse of drugs and alcohol if you can.
Remind yourself often that your partner is no longer who they were, that it is the disease talking, not your loved one.
Don’t take what they say personally (unless it is true) then consider it.
Friends & family would always ask me, “Are you taking care of yourself?”
I would dash off some reply to appease them but deep inside would be feeling so sad, helpless, at times depressed, confused, overwhelmed, frustrated, angry etc, that it would be hard to imagine “taking care of myself.”
I felt that I would never “feel better.”
But slowly I was able to take care of myself and I did feel better.
I hired college students (majoring in psychology or medicine) who stayed with Gregory a few times a week; while I ran errands, or went shopping or to the movies, to a weekly full hour massage, to hide out in the library or a coffee shop with a good book, or just for a walk along Lake Michigan (six blocks from my condo.)
I say that you need to take care of yourself becausestatistically, many care giving partners neglect themselves so badly that they in fact die before the care getting partner.
That is sad for both parties.
So again, I cannot emphasize enough, no matter how impossible the advice seems:
TAKE CARE OF YOURSELF. BE A LITTLE SELFISH … BECAUSE IF YOU CAN BE A LITTLE SELFISH, YOU WILL HAVE MORE TO GIVE!
• • •
Let me highlight just a few more points from my article titled “Advice to Dementia /Alzheimer’s Newbies.” The full article can be read on my website.
I will address a dozen and one half of the suggestions in the article.
1 Be gentle with yourself. Forgive yourself.
To be a successful caregiver partner, you must know that you will not always be successful.
You are the one who can, must, and will change and adapt; they cannot.
2 Know that each day will be a new one.
Each day you will get a new chance to “make it right.”
Try not to feel guilty or carry yesterday’s difficulties into today.
Chances are your loved one will more easily be able to be forgiving and to start each day anew then you are.
Take advantage of beginning fresh each day, often your partner will not remember what happened yesterday.
3 Respect the person.
No matter what changes they go through, find a way to help them continue to keep their “personhood” even as their abilities fail.
Help them to find alternative abilities to replace those slowly leaving.
4 Validate comments and seek clarification.
If your spouse expresses worries about financial matters, repeat their words to validate their concerns, and then tell them what your plan is.
“Oh, so you’re worried about finances? I am pretty sure we are okay, but I’ll check in with our accountant to make sure.”
5 Try to maintain a team approach.
Make sure to include them in most decisions which affect them, as their ability allows.
If their ability to participate in the decision-making process is diminished or does not exist, offer the alternatives in bite size pieces which continue to respect that they are or once were part of the team!
For example, if you are purchasing a new item, show them two similar items and ask which they prefer.
Load the questions a little by offering, “I really like this one best, what do you think?”
6 Be patient with the person.
Their processing and understanding of the day-to-day activities of life, both mental and physical, are changing.
The cognitive abilities are slowing down and the connections are no longer as easily made.
Abilities may come and go, may return in reduced form, and eventually no longer exist.
When asking a question, give the person a chance to process what you said.
Asking another question or clarifying too quickly only serves to create more confusion.
7 Control your anger, as best as you can.
Sometimes your frustration can cause anger. Sometimes their behavior can cause anger.
Conversations gone awry can cause anger, especially when you have been used to successful conversations for most of the time during your relationship.
Imagine that the person diagnosed is slowly living life backwards, losing what they have learned.
Count to ten. Or leave the room (don’t just walk out, say “I’ll be right back.”) also breathing deeply can help.
8 Remember, they are NOT children.
What complicates the matter is that mentally, it appears they are becoming a child again, but the fact is, they are NOTchildren.
They are adults, in an adult's body, with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them as the disease progresses.
9 Realize it is the disease, not the person who you are continuing to love and trying to help.
If they get angry with you, it is the illness.
If they strike out, it is the illness.
If they need you to repeat something for the hundredth time, it is the illness … not the person!
10 Try to see beyond the behavior.
Perhaps the person no longer can express themselves using language, perhaps they are no longer aware of what is troubling them.
Maybe they are in pain but do not recognize it, let alone have the ability to let you know about the discomfort.
At times thirst and hunger are no longer recognized let alone how to satisfy those basic needs.
You must learn to be proactive in these situations.
11 Things are not always what they seem.
At times a dark, reflective window can be a vast empty frightening place that is home to demons.
A dark area rug in front of a door can be a deep hole in which to fall!
If the memory fails, a loved one can erroneously become a stranger … and a trusted friend can become a dangerous enemy.
Change Sun Downing Time, which occurs for some people when the sun sets, into time for coffee and cookies.
Close the shades at sunset, remove rugs, arrange furniture so it is not in the way of the route to the kitchen, bathroom, or bedroom.
Put yourself in the person’s place. Work hard at imagining what might be troubling them.
Then see what you can do creatively to correct, distract, and/or remove them from the situation.
12 Tailor the environment.
As a person’s needs change, so must the environment in which they live. Be careful about rugs that may cause a fall or furniture that may not support their weight.
Keep sharp and dangerous items out of sight or under lock and key. Make it easier for them to find what they might need and try to keep everything in its place.
13 Meals can become complicated.
When eating at a restaurant, help guide them through the choices depending on their cognitive abilities which as they become less cognitively aware, can range from “What do you feel like eating today?” to “Do you want chicken or fish?” to “Oh, this chicken dish looks good, shall we try it?”
Meals at home, if causing difficulties, can be served one course at a time, be easy to pick up with fingers, be easy to chew and swallow.
Sometimes the color of the table, table cloth, and/or dishes can soften dinner time difficulties.
14 Be flexible.
As the diagnosed person's needs change, so must their activities and environment change.
Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc.
15 Be aware of medical changes.
Some of the changes may not be apparent, so if you see a change in behavior that is not explained by anything obvious to you, and that seems to last for an inappropriate period of time, maybe it is time for a visit to the doctor for some tests.
Infections, digestive problems, physical injuries, infections, and constipation are just a few that might be happening but not visible to you.
16 You can do this!
What choice do you have, really?
Hopefully, with support from family, friends, your religion … if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room – you can provide a support system that works for you.
You will be strong and find resources to keep going.
Love will help.
Kindness will help.
Being good to yourself, even though you are devastated, will help.
17 Talk about death.
Hopefully it will be acceptable to everyone participating in the discussion including the person living with Dementia / Alzheimer’s.
Having conversations about death with the person affected, while they are still able to express themselves, helps them to die with dignity & helps you to serve them in ways that follow their wishes as closely as possible.
There is no one, right way for these types of conversations to take place.
They may take place easily or they may be a very scary and difficult topic to broach, for some or everyone involved.
You must determine whether to continue these conversations depending on how your loved one reacts or if they let you know they do not wish to have these discussions!
You might drop the subject and try to bring it up again at a later date.
AND FINALLY
18 YOU ARE NOT ALONE!
You can do this! Believe in yourself! It will not be easy but it can be done well!
A diagnosis of Dementia/Alzheimer’s does not have to be a death sentence but rather can be an invitation, not necessarily an anticipated one, to live life to its fullest!
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IN SUMMARY:
Again, one cannot force someone to hear a message they are not ready to receive, but we must never underestimate the power of planting a seed!
Hopefully some of these seeds will grow for you into fruit bearing, flower bearing, gratitude bearing trees.
THANK YOU
