Take a Moment to Take Action: The Time is Now!
Senator Frank R. Lautenberg of New Jersey, on Alzheimer's Disease:
As you can see, the statistics reflect the current status of Alzheimer's Disease and it's implications. While I applaud the efforts, I recognize that more needs to be done, or the impact will be staggering. By 2050, the amount of people who suffer from this illness will have tripled, as the baby-boomer generation grows older. With the help of advocacy groups such as the Alzheimer's Association, and government officials, it will improve. However, we can do more, so let us do it together. Take a moment, write your senator, or any local officials, and make your voice count. This letter was written prior to the passing of my father, and I will not relent until we have found a cure, and neither should you!
In my experience, families of loved ones whom have passed as a result of this disease, react individually. Some feel compelled to get involved while others never speak of it again.
On behalf of our loved ones, please don't leave a trail of silence...
Make a phone call...
Write a letter...
The Final Stage of Alzheimer's and Dementia:
Love is the Best Medicine
Caring for someone in the final stage of Alzheimer's and Dementia from day to day, can be exhausting, frustrating, confusing, and emotional. Determining the needs of your loved one may prove to be the most challenging of all, where at this point, the ability to communicate has most likely diminished, behaviors may have become more erratic or even combative, and the person may appear to be uncomfortable or fidgety. In this final stage, the ability to move, walk, sit upright, etc., are most likely impaired, or non-existent, for that matter.
So, many are left to wonder what they can do to help improve the quality of life for their loved one while preserving their dignity and providing stimulation, aside from meeting their basic daily needs.
I would like to preface this by saying, I am not a doctor or therapist, but I do know what it is like to try to occupy the heart and mind of an Alzheimer's/Dementia patient who is having difficulty relaying thoughts, or understanding their surroundings. Upon reflection of my journey with my father, it has become very clear to me what was most effective in providing him with a sense of peace while assuring him that he was safe and loved, beyond the fundamentals.
Many people have asked questions such as, "What kind of activities did you do with him in that state?", or "What can I do to be there for my loved one?". This is where I feel that a very complicated disease can be simplified, to an extent. We must adapt to them, just as they are adapting to their illness.
Here are some things you may want to consider while caring for a loved one who is in the final stages of Alzheimer's or Dementia, coming from a place of experience:
1. Take care of yourself first. For example, on an airplane in case of emergency, parents are instructed to place oxygen masks on themselves before they place it on their child. The thinking is, you are of no use to anyone else if you have run out of steam yourself.
2. DON'T TAKE IT PERSONALLY! It is likely that your loved ones may have verbal or physical outbursts that may seem like an attack on you, when in fact, it is not. More than likely, it is just a symptom of the disease. Remember that the person that you are caring for has diminished or warped brain capacity in such scenarios. Try to remain patient, and use a soothing tone of voice to de-escalate the behavior, even redirect them with distractions.
3. Pay attention to the outbursts. Because an Alzheimer or Dementia patient has difficulty expressing themselves, sleep disturbances, hallucinations, and atypical dramatic outbursts, may be their way of communicating to you that they have pain, or another complication. In this case, be vigilant of unusual behaviors, and seek medical attention, if needed.
4. Educate yourself on sun-downing, a real condition or phenomena that occurs at sunset with many Alzheimer's and Dementia patients. At this time of day, you may notice that outbursts, restlessness, hallucinations, and fears become exaggerated. Sun-downing is a condition related to a person's circadian rhythm, where shadows may appear more intense as darkness falls. At this moment or just prior, you may want to shut the shades and turn on lights around to help alleviate the fear associated with it, while sitting with your loved one and distracting them.
5. Create distractions that are soothing to your loved one. For example, I have a dog that I found to be a wonderful stimuli for my father. Being an animal lover and owner his whole life, it was impressive to watch him come to life when I placed the dog in my father's lap. His eyes lit up as he his tactile sense of caressing his fur was activated. Also, on bright days, we sat close to the window together and observed the outdoors. All the while, when we did this, I would point out simple colors, wildlife, and noises that existed in nature. But, be very aware of their response. If they seem to get agitated or appear fearful, it's time to redirect. Redirecting is something that you will be doing quite a bit, so be prepared for rapid changes and accommodate accordingly. For example, playing music that they may have once loved at a low volume is a great way to redirect your loved one.
6. Be aware of the volume level, and the amount of people around in the same moment. Alzheimer's and Dementia patients are easily over-whelmed, so be cognoscente of the level of noise or chaos surrounding your loved one and keep the stimulation minimal and simple.
7. Interact, play simple games, and talk to them. Sometimes, it is easy to forget that Alzheimer's and Dementia are still a mystery in some ways. Different schools of thought argue whether or not someone in the end-stages of these illnesses are aware, because patients may appear to be catatonic. My belief is that they are aware, to an extent. So, activities such as simple toddler puzzles, talking to them, singing, praying, or reading to them not only stimulates your loved one, but gives them a sense of self that sometimes gets lost in the illness. Do NOT talk about them in front of them, as I feel it is demeaning and fosters a sense of helplessness.
8. LISTEN TO THEM, EVEN IF THE SPEECH IS SLURRED OR UNINTELLIGIBLE. Everybody likes to feel that when they speak, they are being heard. But, with AD or Dementia, understanding your loved one can be difficult, especially when speech is impaired or limited. But, TRY...show them that you are trying! Make eye contact with them, smile, nod, whatever need be, just listen and show interest. This is a great way to not only show that you care, but that you are listening, and are somebody that can make them feel safe.
9. Set routines, while creating choices. Nobody likes to feel helpless. So, once you have established a daily routine (which provides a sense of security), implement choices as well, but not too many (two are sufficient). By providing meal, clothing, or even seating choices, you are also furnishing your loved one with a sense of empowerment and independence. This ensures that the dignity of our loved ones stays intact, even when all else may be failing.
10. Finally, the most important thing you can do...is LOVE THEM! Be affectionate, never underestimate the power of love, a hug, touch, or loving words. Sit close, caress their hands, hair, and face. Make them know that everything will be okay. This is the one thing, out of all of these suggestions, that I cannot emphasize enough. Tell them how much you love them, show it, and give them a sense of peace with your gentility. Ultimately, this will be the one thing you will be so glad that you did, as your love will provide comfort and safety to the heart of the person you adore.
These ten suggestions are centered around the idea of fostering love, respect, safety, and comfort, in an effort to not only preserve the dignity of your loved one, but to provide them with a sense of peace in the final stages of Alzheimer's and Dementia.
Care-giving can be very challenging, but it can also be rewarding as well. Learn what works for you and take it one day, one hour, one minute, at a time. Educate and take care of yourself throughout this process, and remember that there are resources available to you through ALZ.org 24/7 at 1-800-272-3900.
Finally, I would like to dedicate this to my mother who was my father's primary caregiver, and an inspiration to us all.
I love you mom, and I'll never forget you dad!
Processing to Progress
The guests have gone home, the flowers are gone, and the phone calls and condolences have ceased...what to do now?
Most of us know how difficult it can be to lose someone that we love. After the trauma, after the outpouring of emotion, we are left alone to answer the age old question, "Where do I go from here?".
Grief can be very overwhelming, and isolating, for that matter. So, processing your way to progress is very important, and a way to begin healing the heart, mind, body, and soul (all of which needs attention).
First off, allowing ourselves time to grieve, and understanding its purpose, is an essential tool to moving through our pain. Like any emotion, grief is a process, taking on different forms. Remember, no two people are the same, so this may vary from one individual to the next. The current basic model for grief, is comprised of 5 stages.
The five stages of grief, and coping with them:
1. Denial (or Isolation): Sometimes upon learning that someone that we love is passing, or has passed, can be overwhelming, to say the least. We may not be ready to process the gravity of the event. So, as a defense mechanism, one might refuse the news as true. This is a temporary fix that will soon be over-shadowed by reality.
2. Anger: Anger is one of the most primal emotions, especially in sadness. It is sometimes easier to be upset with God, doctors, even family members, in an effort to deflect the onset of pain. In any case, talking about these feelings with somebody you trust can be very therapeutic.
3. Bargaining: This is the stage, I like to call the "Should have, Would have, Could have" phase. In the stage of bargaining, questioning everything, and how doing things differently "might have" changed the outcome, is quite common. We must remember this, "The past is behind us, and we cannot take responsibility for the way life unravels. Surrendering is key."
4. Depression: This is the stage where a sense of hopeless/helplessness tends to surface. Many who hear this word, immediately attach a negative connotation to it. In this case, it is considered not only "normal", but, essential and inevitable to the road to recovery. Allowing ourselves some time for the pain is healthy, in my opinion, to a point. Endpoint being, that one is stuck in the sorrow and losing faith in life. This stage can be very tricky, as some of us may have a history of depression, or even suicidal ideation. If you fit into this category, my advice is to remain vigilant, and if necessary, seek the help of a professional. The strongest people in the world are those who are humble enough to ask for help when it is needed.
5. Acceptance: Acceptance simply means, that we have now accepted the circumstance. This stage can be another deceiving one as some may think that accepting something means being it's "all better". This is not necessarily true. However, at this point, hopefully, you are having more good days than bad, or you can see light again...sometimes. At this point, it is time for a new version of normal. Finding that new version of normal can be the most challenging part of this entire process.
After the process is said and done, prepare to process some more. Here are some ideas on moving forward when the dust settles. Since sadness can cloud judgement, talking to others who have been where you are, can be very helpful. This will allow you to help deduce logical thoughts from useless, invasive ones.
Remember to talk to yourself, as well, as this is one of the most important conversations one can have. How we talk to ourselves is very important. For example, try to tell yourself that you are worth it, and that your loved one would want to see you thrive, not surrender to pain.
I have found it crucial to stop, think, and sometimes do the opposite of what I think I want, replacing it with what I need instead. For instance, I have replaced my desire to isolate by embracing those around me, and surrounding myself with love and encouragement. Ask people that you trust for help. Remember that you are worthy of care too, accept it, and be in the moment of love.
Sometimes, sitting alone with our thoughts can be therapeutic, but in times of fear, it can be debilitating. Be aware of your thoughts before you sit alone with them. However, if alone time is being used constructively i.e. meditation, staying in the moment, smelling the roses, than you are on the journey of processing to progress.
Less than one month ago, my father passed away from complications of Alzheimer's Disease. He fought a long and arduous battle that lasted nearly 10 years, only to succumb to a bought of Pneumonia in his final days here on this earth. And, even though his death was imminent, the after-math was still quite shocking. From his cerebral passing, to the passage of his soul, I have learned that saying goodbye is never easy. Whether dying is a long, drawn out process or a sudden occurrence, I have found that learning to cope is key to moving forward. So, in an effort to try to understand and make sense of it all, I took action. I decided to speak at his funeral, and memorialize his life, rather than dwell on his death. I knew this would be a challenge as I was grief-stricken, fearful, and overwhelmed, but also determined. I made it my mission, not only for myself, but for my father, to carry the message of his life to others through my spoken word.
And so, I would like to introduce you to the man who was my first real love in life, as a little girl, my daddy...
"Back in 2008, I was fortunate enough to take a trip to Italy with my father. On our way there, we had a blast. We knew we had a long trip ahead of us, and in an effort to avoid jet-lag, we made a pact with one another to stay awake for the duration of the trip. Along the way, there were many unanticipated delays, and we stayed up for 48 hours straight! We kept each other awake for the entire trip, with our shared gift of gab, laughing, joking, and teasing one another...we had the best time together!!
On a layover in Germany, we had to switch planes to reach our final destination. And then, I saw what he called... "our airplane"....
Well, it looked like more of a toy to me, than something that could carry us over the Swiss alps.
I really thought he was kidding me at first, and he kept acting as if it wasn't our plane. But, it was...
It was this retro-looking, tiny thing, with a propeller on each side.
The airline was actually rejecting passengers bags because they were too heavy to fly with us!
I was a nervous wreck, and my dad knew that, as he held back his laughter.
His face read like a book...
He had this amazingly sweet smirk that he would use to keep from hysterically laughing, where he would purse his lips tight, with a smile in his eyes, that was soothing to the soul.
When we boarded the tiny aircraft, the teasing escalated.
He was in the row next to me,
and every so often he would tap me stoically and say, "Nicole...the propeller on my side has stopped"!
It was so funny, and he was relentless.
But, he was always so brave, full of courage, never afraid...
He had this amazing way of using his incredible wit to let me know that we were going to be okay, as he so often would, and it worked, as it always did.
I knew that we would be just fine.
There was a lesson in everything that he did, even in his humor.
That trip was ALSO a very pivotal one, as he had revealed his heart to me in a way that I had never expected, and it was absolutely beautiful!
Something inside him told him that he was ill, and one night, before going to bed, he asked me to come and sit with him in his room. He wanted to talk to me. With a tear in his eye, he asked me if I would make him ONE promise:
He said, "Nicole...promise me that you will always remember me, because I might not remember you, but it does not mean that I do not love you.
So, I did. I promised my father that I would ALWAYS remember him, and that he was unforgettable. He smiled, and thanked me for my words.
And this is why I stand before you all on this day. I am here to ask that you honor his memory by doing the same.
Please remember my father for the amazingly brilliant, remarkably sympathetic, funny man, father, husband, brother, uncle, cousin, friend, and glorious soul that he was, and will always be.
Please try to cherish and emulate, his great strength, wisdom, generosity, and honor. Know that he was a man of humility, respect, kindness, and dignity, who persevered with gentility, class, and an amazingly contagious smile.
Let us remember him as he wished to be remembered, and keep his legacy alive through our thoughts, words, actions and smiles, as he would not want us to cry.
For he will live in our hearts forever.
Daddy, I love you always, and I will never forget you, just as I had promised!
You are my hero and I hope that I have made you proud, and continue to do so until we meet again."
Delivering these words was a difficult task, but also very therapeutic in my own grieving process. In fact, this particular form of coping, for me, has been integral in beginning to heal and move forward. In loss, my pen is my sword that staves away fear, so I will continue to write about my journeys in hopes that I can provide solace for others who find themselves in a state of perpetual grief. I hope that others can find purpose in sadness, as I feel that I have. And this is why I am returning to my true calling, writing, just as my Father had hoped for me, and I have always wanted.
I have found purpose in my pain, and hope that others will as well. -Nicole