Do you sometimes feel completely out of control as if the world has been turned upside down and you can’t find the reset button? Do you fear someone you know is living with the symptoms of Alzheimer’s disease without a diagnosis? Has someone close to you recently been diagnosed with some form of dementia? Do you feel sad, isolated or angry as you search for answers to questions you’re not even sure how to ask?
Today 5.7 million Americans are living with Alzheimer’s disease and related dementias. By 2050 that number is projected to rise to nearly 14 million. Bracing against the disease and standing alongside those diagnosed are family and friends. Those touched by these diseases may find themselves locked in an intricate web of conflicting emotion. Alzheimer’s and dementia were once thought to be the illness of age, now they affect those as young as 40 years of age.
Although movement through Alzheimer’s and dementia engages at least two, the flow can seem disjointed as each shuffles to a different tune while trying to stay in synch with each other. Fundamental to any discussion of these diseases is the recognition that those living with dementia and those partnering alongside someone with the disease will have vastly different experiences.
In the absence of effective treatment, prevention or cure, we have each other. Once touched, we become a community of care supporting each other on the difficult journey through Alzheimer’s and dementia.
Only by sharing our stories will we begin to heal ourselves and help others.
1. Get a diagnosis.
Simply assuming personality or behavior changes are Alzheimer’s disease in the absence of diagnosis is an imperfect plan. It’s critical to seek the advice of medical professionals. Establishing a cognitive baseline can define the appropriate next steps and, although you may begin discussions with your primary care physician, it’s likely you’ll be referred to specialists.
With a diagnosis you can enter a state of “knowing”. With knowing can come treatment (for whatever’s detected), advice, networking with others like you, introduction to information you might not otherwise have access to and steps that may not be available to you in later stages of illness.
The courage to take the first step could lead to living a fuller life regardless of the diagnosis.
2. Involve others in discussion and decisions.
Speaking out loud about changes in your health can be terrifying. Contrast that to suffering alone and afraid of what might be, especially if it isn’t. You’ll have a better chance to have your wishes respected and executed if you’re clear about what you want before facing a crisis. This is especially true if crisis is the kind in which age or illness prevents you from participating.
For all of us death is the ultimate certainty. No one has yet escaped that end. Therefore after any medical diagnosis it’s constructive to devise a strategy together; a going-forward plan that will allow everyone impacted by the diagnosis to live life as fully as possible, for as long as possible.
Dementia Alliance International is an example of an organization committed to advocacy, support and improved quality of life for those diagnosed and living with Alzheimer’s or related dementias. The Alzheimer’s Association, among others, is a resource committed to provide care and support to all affected by the disease including family and friends partnering with those diagnosed.
3. Pace yourselves.
An Alzheimer’s or dementia diagnosis can mean a long or slow journey through the illness. Early stages of dementia may require medication aimed at slowing the progression without other significant changes to your lifestyle. Mid-stages can mean the introduction of lifestyle accommodation, as required. While the late stages of dementia can be debilitating for all involved. Each journey through Alzheimer’s and dementia is distinctly different – for those living with and those partnering in care.
The only constant following a dementia diagnosis is everyone involved will need to set a measured pace. You’re likely facing a marathon and not a sprint.
Pacing may require those living with the disease to develop a work-around for any manifestation. For partners, whether you’re in the same house, down the block or long distance you’ll find yourself needing to be there more as the disease progresses. This support will overlay responsibilities you already have to family, health, work and community.
4. Change your perspective.
Everyone affected by a diagnosis of Alzheimer’s or dementia can find it tempting and necessary to drop into an abyss of self-pity. You’re entitled, but fight the urge to hide under the covers forever. Channel your energy into learning more about what you may experience as you progress through the disease together.
A caution: YouTube videos, TED talks, caregiving articles, blogs and podcasts can focus on the more debilitating mid to late stages of the disease. Consider your work a constructive investment in preparation. Technology advancements in virtual reality now afford the opportunity to experience distorted senses of sight, smell or touch that can motivate disturbing behavior in those living with the disease.
The best way for all to understand the difficulties that come with dementia is to walk in the shoes of the disease itself. This can be terrifying so approach early investigation with a hefty dose of detached curiosity. Discuss the options you may need to put in place and determine the possible survival strategies you may require for when that times comes.
5. Recognize the significance of this life change.
Following diagnosis it’s essential to acknowledge together how your lives may change given what you learn about the track of the disease. The initial reaction to detection or diagnosis of dementia is denial.
It’s imperative although painfully difficult to refrain from judging the emotion and the fear you all will share about the future. Whether you’re living with or partnering with dementia and Alzheimer’s, it’s crucial to speak out loud about your hopes and fears so that you can continue to have constructive dialogue around your triumphs and frustrations as they come.
In the same way cancer patients learn to disempower their disease through positive language, thought and action, those affected by dementia can work together in the early to mid-stages of their disease. By mid to late-stage dementia, more responsibility will fall to partners in carrying out the wishes of those living with the disease, as they are no longer able to act independently.
6. Find your tribe.
A reality check maybe required here. Whether you are living with or partnering with dementia and Alzheimer’s disease your family and friends may not support your journey in a constructive manner. If they do support you, you’re blessed. If they don’t, you’ll need to find other channels. You must surround yourself with people who will sustain you on this journey.
Search for forums that fit your current need and know those needs will evolve. Many local Alzheimer’s Association Support Groups offer split sessions: those living with early to mid stage dementia join together in discussion while partners convene in a separate meeting room together. These events conclude in a shared session. Forum participants often find relationships which provide sustaining bonds through their journey no matter what role they play.
7. Desensitize from your emotional triggers.
Reflect on what triggers you most when you partner with or live with Alzheimer’s and dementia, your triggers will be distinctly different from each other. A trigger can be a word, a phrase, a facial expression, a recurring struggle, or deeply buried guilt and anger tied to past emotional wounds.
Learn to live in moments.
Pick a simple phrase and when you find yourself under pressure: close your eyes, repeat the phase silently and breathe out through your mouth in a long slow push. Your shoulders should begin to drop while your heart opens to the possibilities you have in this moment. Reclaim your composure and move on without judgment.
In moments of chaos you’ll need an exit strategy allowing each of you to break the tension while maintaining safety for all.
8. Socialize beyond care – it’s good for both of you.
Relationships become destructive when either party believes no one else is capable of stepping into their role. Dementia can easily evolve into a cycle of collaboration and co-dependence for those who share the impact of the disease in close proximity. Sometimes it can feel like walking along a tightrope too narrow to sustain your combined weight.
All parties affected by dementia benefit from social interaction beyond just each other. It’s not only healthy but it’s critical to find time away from each other and allow that time to be devoted to individual self-care.
9. Consider connecting with others through new channels.
You may not consider yourself an online expert however networking sites like MeetUp, Eventbrite, Meetin, GroupSpaces and citysocializer might just provide local opportunities to connect with others who share your interests and your challenges.
Using the internet to find relationships outside the family and friends you’ve always known may seem foreign, but the built-in flexibility of social networking sites may better accommodate your newfound commitments.
Social networking sites can help zero in on the type of support or relationship you need, making it more possible to bypass inappropriate encounters. For those who refuse to embrace your new normal, be selfish with your time and attention. The last thing you need when living with or partnering with dementia is any additional negative energy in your life.
10. Forgive yourself often.
In the wake of a diagnosis you may experience an odd mixture of momentary fulfillment alongside bouts of battering yourself for missteps. Consider the fact that you are facing one of the most difficult challenges the universe can hand to you.
No matter your role, just remember in times of tension it’s the disease not your loved one. And, in moments of joy, it’s your loved one not the disease. Treasure the moments of joy and weather the moments of tension as fully as possible and for as long as possible by bonding with those you hold dear.
In the midst of debilitating brain diseases like Alzheimer’s and dementia there’s no denying all will experience more complicated relationships through the stages of detection and diagnosis. A breakthrough can be possible if you work together channeling the fear, frustration and confusion you feel into the development of an emotional survival strategy you’ll use throughout the journey together.