Counting Blessings Despite Dementia
Dementia is often incorrectly referred to as a disease rather than as a diagnosis. The term “dementia” is broadly used—there are 10 types of dementia—but it’s really an umbrella term to describe a range of varying symptoms, which include memory loss and cognitive impairment. These are perhaps the first two symptoms that come to mind when thinking of the dementia diagnosis. Other symptoms will accompany depending on the specific dementia disorder that an individual is diagnosed with. What is common in all types of dementia is the fact that an individual’s symptoms will get worse over time leading to both physical and mental decline—interfering with both daily physical activities as well as communication and executive functions. Oddly, one constant through the dementia process is that the symptoms of the process will affect each person uniquely.
I have been asked multiple times, by families of patients and clients, “how will my loved one be affected? Will the process be quick or will it be slow?” Families want to know if their loved one will still recognize them, will they still be able to eat, swallow and recognize their grandchildren. Clearly the thought of their loved one experiencing any one of these scenarios range from concerting to downright terrifying.
I recently made a wonderful friend in Carol*. Through the course of conversation I came to learn that Carol’s husband was diagnosed with Fronto Temporal Dementia when he was 57—he is 60 years old now. Fronto Temporal Dementia accounts for 2 – 4% of all dementias and is also called Pick’s Disease. With this type of dementia cognitive and executive functions are primarily affected. I was teary as Carol described how her husband was affected. I told her how sorry I felt for her. Carol responded with a warm smile and told me not to feel bad for her, she is thankful for each and every day she has with her spouse. Some days are more challenging than others but she chooses to not feel, as she said, “victimized,” by this situation. Instead she shared some of the truly funny, and off-the-wall things her husband has had to say. We were both teary eyed—from laughing.
Carol is a very blessed and fortunate person. She views her life as a glass half full rather than half empty which, given the challenging circumstance, is admirable. Carol chooses to nurture a grateful spirit. It is a task that takes work, persistence, and a joyful attitude despite the hurdles that life is throwing at her family. Instead of Carol counting losses, she is thankful for the 37 years she has had, and continues to enjoy, with the same loving man. Her children are supportive and loving, and while living lives of their own, they complete the family circle of love and understanding. Extended family and local friends who love and support Carol and her husband in a variety of ways round out the experience. Carol and her husband are supported by a team of earthly angels who help them over hurdles and celebrate the little victories.
Who are you? Are you an earthly angel to someone going through the hurdles that the dementia process is throwing at them and/or their loved one? Are you living with one of these diagnoses or a caregiver to someone with one of the dementias?
Whatever role you find yourself in, be kind to yourself, to the individual you care for or the family that you may be an angel to. Learn as much as you can on the specific dementia process that the individual has been diagnosed with. Education is empowering and can help us cope with the uncertainties that life brings. Carol shared that as she looks back on her career, there are positions she has served in that have helped to prepare her for this experience with her husband. Carol feels her current role in hospice will prepare her better for what will eventually come down the road. As Carol’s, and her spouse’s journey continue, they take one day at a time and continue to find gratitude in the little joys in life.
* name has been changed
Older Americans Month
May is designated as Older American’s Month. What does that mean to you? What does that mean to us as a society?
This month should ideally provide an opportunity for our older citizens to connect with each other in their generational cohort as well as to connect with individuals of other age groups. The Administration for Community Living (ACL), who leads the nation’s observance of Older American’s Month, announced this year’s theme for the month as “Connect, Create, Contribute”. Older Americans are encouraged to connect with those individuals who are important in their lives and to contribute to causes that resonate with them. They are encouraged to create by taking part in any variety of activities that promote wellness, enjoyment of life and enrichment. Finally, they should take part in activities in which they share their knowledge, talent and life experience with others, they contribute to the betterment of others and society as a whole.
As a freshly minted nurse, I found myself working in a long-term care facility, what is often thought of as a “nursing home.” This is not where I wanted to be. I did not relate to the residents there, I could not see what I had in common with them or what I could give them. On my first day out of a brief orientation I was assigned to a hall on which Helen M. was a resident. Helen must have seen the frustrated young woman and nurse that I was. She quickly befriended me and over the days that followed, shared her life story of coming to this country from Europe, working for a wealthy family by cleaning their house, eventually meeting a man, getting married, having a family of her own and then grandchildren. She shared her dreams as a young girl and her life experiences—I was enthralled. To this day, I wonder if I gave Helen as much as she gave me. She connected with me and supported the young struggling nurse that I was. She gave of herself by doing all she could to help me grow my new talents. She created a warm environment for me every time I entered her room to give care. On this day, and every day, I celebrate the fact that she came into my life and shared so much wisdom and joy with me.
Allow the Older Americans in your life to share their knowledge and life experiences, not just in May, but be mindful of their contributions to us individually and to society every day. Older Americans have volumes to share with us.
To read more about Older American’s Month, visit the Administration for Community Living.
Empowering Seniors: Who’s on your team?
When I launched my business in early 2013, 97% of the people reaching out to me were being reactive to the aging process, not proactive. What does that mean? It’s like your life is a snow globe and someone is shaking it and when that’s happening, it’s hard to think clearly because you’re under a lot of stress. Years ago, when I was an admissions director, a woman came to me because her mom had just suffered a massive stroke and this poor daughter just sat there and dissolved to tears. Her snow globe was being shaken so hard she didn’t know which way was up and it broke my heart. It’s in situations like that where you’ll have wished you had a plan, that you had been proactive, so you or your children don’t have to be reactive to the situation, instead they can enact the plan that’s already in place.
That’s the goal here, to be proactive—to have a plan in place as you age. While some of this may seem like common sense, many people haven’t taken the steps to put a plan together.
Below is part of a “To Do” list I’ve shared in a blog before, but I wanted to break it down even further because it’s so important. Recently, I discussed this list and several other important topics at an educational seminar at the Westlake Porter Library. I’m hoping the following short videos from my presentation will help you tackle steps 1 and 2 of my proactive aging to do list!
Why do we research refrigerators and not an aging life plan?
In the market for a new refrigerator? What’s the first thing you do? You head to the computer and start searching and searching and searching some more. As you begin to realize the number of options, you start to feel overwhelmed. How hard is it to find a refrigerator/freezer combo that keeps your food from spoiling, that’s all you want, right? Well did you take into consideration:
Do you want a French door style?
How about the color? Did you think about that?
Black stainless steel?
Are you going to have it delivered? Installed? You know, those are all extra fees!
While you may feel overwhelmed, you’re in a good place. Your current refrigerator is still fully functional, and you have time to do this research and go into countless stores and look. But what if you don’t? We’ve all been there before. You come home from work and see that the refrigerator stopped working. Now you’re calling your neighbors or maybe your adult children to see if you can put what food didn’t rot into their freezer or refrigerator. Now it’s all hands-on deck as you ask your family and friends to clean up this mess in your kitchen while you and your spouse head to Best Buy, Home Depot or Lowes (whichever one is open past 7 on a Wednesday night) to find a new refrigerator ASAP.
Now, what if instead of a refrigerator, it’s your health we’re talking about. Wouldn’t you want to take the time to research your options before something goes wrong and you’re forced to make a quick decision? Or have someone else make that decision for you? Asking your adult children or friends to help clean up rotted food is a lot easier than asking them to make crucial decisions about your health. Decisions that you could have had time to make and decide on. This is why it’s important to be proactive. To have a plan. To do the research and make an educated decision about your aging health.
Take charge: Of your life, your health, your today and your tomorrow—because tomorrow always comes! Will you have plans or regrets?
Need advice and guidance on making these decisions? I will be speaking at the Westlake Porter Library (27333 Center Ridge Road, Westlake 44145 ) on April 4, 2019 at 7:00pm. My topic is: Empowering Seniors: Steps to take to proactively plan for the aging process. Contact Trina Thomas at 440 250-5466 to sign up or register here.
February is the Month to Love Others and Yourself!
Continuing with Seasons of Change mission of EMPOWERING SENIORS AND THEIR FAMILIES with education and encouragement to be proactive, I want to take this opportunity to encourage you to LOVE YOURSELF and those in your life by addressing your HEART HEALTH.
February is upon us and is thought of as the month for lovers and for expressing our love. The color we associate with February is RED and we symbolize February with HEARTS. Following that theme, February is designated as HEART HEALTH MONTH and on February 1st many of us wore RED to increase awareness of heart disease. On February 14th, of course, Valentine’s Day, we celebrate our love for those special people in our life. So while we are celebrating love and symbolic hearts let me take a quick minute to throw out some hard facts about your heart.
Did you know that heart disease is the number one cause of death for women world- wide? Sadly though, many women are not aware of this fact or educated to the symptoms that signal a heart attack. The symptoms that women experience can be different from the “crushing chest pain” that is often associated when men experience a heart attack. Although women can experience the crushing chest pain their symptoms are often much more subtle. Those symptoms can include nausea, shortness of breath, pain in their neck, back, or jaw. Often these symptoms are ignored by women.
Data collected from studies show that even when women are aware of the high risk of mortality from a heart attack, fewer than half of these women see the high risk to themselves of developing heart disease or suffering from cardiovascular disease processes. According to the American Heart Association, an individual dies from cardiovascular disease every 38 seconds. But, did you know that 80% of heart related deaths could be prevented? PREVENTION BEGINS WITH EDUCATION. EDUCATION IS EMPOWERMENT.
Please take the time to click on this link and view this humorous 3 minute educational video from the American Heart Association that covers the symptoms of heart attack.
We have loved Elizabeth Banks’s humorous acting chops in many movies and TV shows. Here her portrayal of a woman having a heart attack, while causing us to chuckle, will strike a cord with many women. While you are there, take the time to look around the site and thoroughly educate yourself to the symptoms of cardiovascular disease and prevention strategies.
“I DON’T HAVE TIME TO EDUCATE MYSELF, IT WILL NEVER HAPPEN TO ME”, you may be thinking. To that comment I would wonder if you have any idea how much time it takes to recover from a heart attack? Hospitalization, cardiac rehab, follow up physician appointments, time missed from work, using all your PTO time with recovery. Trust me when I say that it will take far less time to educate yourself to the risks, warning signs and strategies to live a healthier life. You will thank yourself and your loved ones will thank you!
For even more information on heart health LOVE YOURSELF and visit:
Three Tips to Maintain Self-Care as a Caregiver
How much time do you spend doing things for yourself? That could be reading a book, watching your favorite TV show, getting a manicure, etc. When was the last time you did something for yourself?
Being a caregiver is a difficult, time consuming and often stressful job. Each day seems to bring with it new highs and lows, and sometimes, progress and regress. As a former caregiver, I understand this roller coaster. For over a year, I was a caregiver, alongside my mom, for my 87 year old grandfather. We cooked for him, did his laundry, helped with his medications, helped with household tasks and basically anything and everything he needed, no matter how big or small. Days blurred one into the next with the same routine of school, work and caregiving. My grandfather lived next door to us so the only way to totally get away from caregiving was to leave the house, and feel terribly guilty in the process.
We would be on the go for what seemed like 20 hours a day with no downtime. The minute there was the opportunity for down time, we found something else that needed to be done whether at our house or my grandfather’s house. We were constantly burned out and stressed, feelings that are not helpful for anyone. After he passed away in February of 2018, my mom and I began to realize just how long of a year it had been. We realized how much we didn’t do for ourselves.
With that in mind, I am challenging you to be proactive with your self-care in 2019. Don’t wait for life to get out of hand to try to implement self-care practices. For the New Year, I’m personally challenging you, as a caregiver, to make time for your self-care. As you embark on this self-care journey, keep these tips in mind:
1.Self-Care is not Selfish
It’s so easy to feel that even 5 minutes of down time is selfish because there’s always more than can be done. Don’t let that little voice in your head convince you of that. Instead, change your perspective. We’ve all heard the phrase, “you can’t pour from an empty vessel.” You need time to relax and rejuvenate because caregiving is so draining. Ask yourself, “How can I provide the best care for my aging loved one when I’m running on empty?” The answer is, you can’t. You need to be at your best before you can do the best for someone else.
2. There’s only so much you can do.
You are not faster than a speeding bullet. You are not superman or superwoman. You have limits and running constantly on little sleep while being filled with stress is not a good combination. In fact, I think the real superheroes are the ones who know their limits and when to say no to others in order to say yes to themselves. As a caregiver, you may be faced with tasks that you can’t do for your aging loved one. Know your limits and when to call in for help, whether from another relative or from a professional.
3. Be intentional with your self-care.
Set goals for your self-care like you would for work. Set a goal to go to bed at a certain time or make sure to eat breakfast. It may be silly but take time to watch your favorite TV show or read another chapter in the book you’ve been trying to finish. Being intentional about your self-care and making time for those little things will make a huge difference in your overall health and outlook.
Be proactive in 2019 with your self-care. Start with good habits and intentional activities before you’re burned out and trying to fit in self-care time.
For more tips on self-care as a caregiver, visit the Family Caregiver Alliance National Center on Caregiving.
January's blog written by guest author, Sabrina Plumb, Communications Coordinator.