Reflections on "Life does not end with a diagnosis of Alzheimer's"
What struck me as I was chatting with Dennis Dulniak during Island Treasures’ podcast, “Life Does not end with a diagnosis of Alzheimer’s” was his wisdom and insight. He explained things so clearly, that I found myself not just listening to what he was saying, but learning from what he was saying. He is an engaging speaker and it came as no surprise that he had been in the field of higher education for 40 years.
He and Nancy have been married for 47 years. Before Nancy’s diagnosis, they had an active social life, enjoying cruising, live theatre, musical and sporting events, until it became apparent that the noise and crowds were no longer pleasant for Nancy. Dennis was not willing to give up on their social life and found ways to adapt to a new normal. He was adamant that ‘Life would not end with a diagnosis of Alzheimer’s’.
When Nancy could no longer perform her highly detailed tasks at work it seemed a natural time for her to retire. It was after she retired that she was diagnosed with Mild Cognitive Impairment (MCI). They were shocked to find out that had she been diagnosed before retiring, she may have been eligible for long-term disability benefits. Instead of being upset about missing this opportunity for themselves, Dennis uses their experience to inform others to get tested before leaving their career. He stresses the importance of your friend or family member who may be experiencing memory loss or cognitive difficulties to have a thorough examination by their general practitioner first. Memory loss does not automatically mean a diagnosis of Alzheimer’s or dementia; but it is best to rule out other possible causes before intensive cognitive testing. Nancy participated in 8 medical trials for science research as well as possibly benefiting Nancy.
As the podcast continues, Dennis educates me further:
– On the ApoE-4
– Brain Fitness Progam
– On Dementia-friendly dining. https://www.centralfloridadementia-friendlydining.com/
– On clear face masks particularly during this time of Covid-19 for folks with dementia or Alzheimer’s (email email@example.com)
Dennis recognized the importance for self-care, which for him comes through his participation in service clubs, Support Groups, (both attending and facilitating) engaging with a certified caregiving consultant and accessing resources including the two books he mentioned: 1) UnMasking Alzheimer’s: the memories behind the masks – by Dr. Cynthia Huling Hummel, and 2) Barry Petersen’s book Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s. Dennis described how he anguished over the decision to have Nancy enter care, and to this day has difficulty being apart, especially as Nancy has now tested positive for Covid-19. Dennis continues to be there for her, lovingly, and his wisdom and insight is there for those of us who want to learn from him. Remember, being informed leads to confidence which leads to being an effective advocate for your loved one. I would like to thank Dennis for sharing his insights and for both his and Nancy’s selfless approach to helping others from what they have experienced and their lessons learned.
Advance Care Planning Guide
Written by Alison van Schie and published in Caregiving.com on April 11, 2021.
When it comes to documenting your advance care plans, please remember to consult legal professionals, financial advisors, medical professionals, and other qualified support who can best address the specifics of your situation.
What is advance care planning? It is an ongoing process of preparation that adults use to identify what matters most to them when they consider their future health, dignity, and quality of life. Advance care planning requires a person to thoughtfully evaluate their goals, values, and beliefs and use these preferences to determine and document the type of medical and end-of-life care they wish to receive in the future. Because it is a process, you can revisit your advance care plans and make changes to them as your situation or experiences change–or simply if you change your mind.
If you are a caregiver, you may be familiar with advance care planning if you’ve helped a loved one document their wishes or helped see these wishes through. But how much thought have you given to your own future care needs? Advance care planning is not just for so-called “old people.” Accidents or serious, debilitating illnesses can happen to any one of us at any time, so it’s best to start planning now. It’s never too early to start. Even putting together a first draft of advance care plans should bring some relief. lt’s nice to know that there’s documentation in place that conveys our wishes in the event we are unable to do so.
What are the first steps in developing an advance care plan?
I would suggest doing some reflection on what you want your life to look like should you become impacted by a serious accident or life-changing illness. Think about what matters most to you by answering these questions:
- What gives your life meaning?
- What brings you joy?
- What do you do for fun?
- What can’t you imagine living without?
- Who would you trust to speak for you if you could no longer speak for yourself?
After you have considered the answers to some of these questions, it’s time to start having conversations with your loved ones and making your wishes known. That way they are prepared to respect and honor your wishes. Furthermore, making it clear in advance what you want prevents (or at least limits) possible disputes between family members about your care.
The next step, after verbally communicating your wishes, is to look at what resources are available in your area that support what you’ve come up with for your future health considerations. Health authorities, social agencies, and social workers are great resources for this information. Online research is also helpful at this stage. Google keywords like home care or living at home with support, assisted living, residential care, independent living, hiring health care providers, or transportation options.
Have you recently received a medical diagnosis?
If you’re a family caregiver, a personal medical condition or diagnosis can have repercussions on your care recipient and will require an added dimension to your advance care planning. Not only will you need to do as much research as you can for your own understanding of your newly diagnosed condition–about what treatment options would be consistent with your wishes–you will also need to consider how this will impact your ability to continue to provide care. Perhaps there will be times you are unable to perform caregiving duties and you will need to appoint someone to step into your role. Perhaps you will need a caregiver yourself. With many “what ifs” it can be difficult to plan concretely, but it is helpful to give these possible scenarios some consideration and planning.
If you find resources are lacking in your community while researching your condition, now is a good time to advocate for improvements to the options for health care. If your wish is to remain at home, make sure your home environment is safe. Fix those broken door hinges or uneven floor boards while you are still well enough to do so. It is best to be prepared and keep your family and friends updated about your health condition.
What is a health care proxy, and why do I need one?
Advance care planning should also include assembling your personal care team. Which friends and family would have your back in the event of illness or a crisis? Once you’ve made this list, identify the person you trust the most and ask them to be your health care proxy. A health care proxy, also referred to as substitute decision maker (SDM) or representative, is a legally designated person a medical team will communicate with when/if you are not able to. If you regain your ability to speak for yourself, medical staff will resume communicating with you directly. In selecting your health care proxy, consider choosing someone who knows your current health issues, has the confidence and skill to speak to doctors and healthcare providers, and is able to remain calm in crisis.
What forms do I need to document my advance care plans?
Once you’ve had the preliminary conversations recommended above, it’s time to put down in writing the critical services and support you may need. First, make sure to have your legal and financial matters in order. Do you have a will? According to The Conversation, 68 percent of Americans do not have a will. This data is echoed in Caring.com’s recent findings that only one in three have their planning documents in order. The reported number of Canadians with wills is about 55 percent.
When we look at these statistics, we need to discuss why it is beneficial to have a will. When a person dies without a will, the distribution of their estate–which includes their assets and things they’ve worked very hard to accumulate to pass along to their children or other beneficiaries–will be decided by the state or governmental law. Assets may not be doled out the way they would have wanted. Having a will gives you control to say who is to receive that favorite necklace of yours or that antique carpentry tool your father always used. Perhaps it’s really important that some of your money goes to your favorite charity. Without a will to express your wishes, these specifics (or specific designations) won’t happen. It also provides a tangible outline for the family and friends who may have been important to you while you were alive to know your wishes and (hopefully) prevent hard feelings when someone wanted something of yours but it was left to someone else.
It’s also beneficial to have a power of attorney and an advance directive. Power of attorney is a legal document that gives one or more people the power to make financial and legal decisions on your behalf. An advance directive is a legal document that specifies your preferences for medical treatment and care if you are no longer able to express them. These documents go by many different names in different States and Provinces. Some of the advance directives you may hear about are health care proxy, durable power of attorney, living wills, DNR (do not resuscitate orders), five wishes, personal directives, and health care directives.
Advance directives are crucial as they inform medical professionals and your caregivers how and what treatment to provide if you’re terminally ill, injured, comatose, have late-stage dementia, or are nearing the end of your life. They go into effect when you are no longer able to communicate. Have discussions with your doctor so that your wishes pertaining to accepting or refusing health care treatments are written up as a medical order in the Medical Orders Scope of Treatment (MOST), Physician Orders for Life-Sustaining Treatment (POLST), or Medical Orders for Life-Sustaining Treatment (MOLST)–depending on where you live.
To learn more about common health care and legal terms you may encounter as a caregiver or patient, read Definitions for Caregiving Terms.
Advance care planning requires some careful preparation, yet by being prepared you make sure your wishes will be carried out the way you want them. You also simplify the level of decision-making required by your family. They will appreciate your forethought. Once you have your documentation drawn up, make sure to let key decision-makers know where you keep the originals and consider distributing copies to those who are involved in your health care: Your physician, your health care proxy, your family members, and your lawyer. It is helpful to include information about your life insurance policy and funeral arrangements alongside these documents.
You may feel comfortable consulting with a reputable attorney or elder law attorney (for those of you who are advancing in years) to help with your planning. If you can’t afford to pay for legal advice, there are options available for non-profit legal and even gratis services. By doing online research, or contacting a social worker, Area Agency on Aging or the Alzheimer’s Society, you may find affordable options to help with your advance care or estate planning needs.
The most important piece here is to take the first step and start thinking about your care wishes and how you plan to share these wishes with others. Advance care planning is both an act of self-care and a gift we give to those who care about us. Your efforts now will help ensure that your future health care aligns with your wishes while simultaneously preventing family members from disagreeing with each other if they are put in a position to make a life-saving decision on your behalf. Don’t miss the opportunity to make your wishes known and your voice heard while you’re still well enough to do so.
How Social Workers Help Caregivers
Written by Alison van Schie and published on Caregiving.com on March 10, 2021
I am retired from social work, but during my career I had the opportunity and privilege to provide a variety of services within the profession. I rounded off my social work career in a residential care home which led to private practice. This was my niche. I quickly realized there was a huge need to provide services and support to caregivers. I remember once when a caregiver looked directly into my eyes with a look of loss, fear and desperation. It was at that moment I realized my calling was to step up and step into the world of supporting caregivers.
For a long time, people have associated social work with child protection, welfare (financial assistance), and adoption services, but these professionals do so much more. In fact, there are many social workers who work specifically with caregiving families. They may not be the first professional you would think to seek out throughout your caregiving journey and, yet, they can offer so much support. Overall, social workers are great listeners who can help you find and access the resources you need to care for a loved one.
Social Worker Definition
The National Association of Social Workers (NASW) defines social work as a practice that, “consists of the professional application of social work values, principles, and techniques to one or more of the following ends: Helping people obtain tangible services; counseling and psychotherapy with individuals, families, and groups; helping communities or groups provide or improve social and health services; and participating in legislative processes.”
The simplest definition of a social worker–how I used to describe myself–is professional gap-filler. They are resourceful people who help clients find what they need to reach their maximum potential at every stage of life. They do this by using their knowledge and training, all while upholding the Social Workers Code of Ethics and Standards of Practice. Basically, when a client–an individual, family, or community–is struggling or feeling lost, the social worker’s role is to shine a light on the client’s expertise, innate strength, and resources so they can progress toward their goals and reach their maximum potential.
Social Worker Duties
Social workers are big-picture thinkers who perform psychosocial assessments to determine what systems are affecting a client and how to best apply services based on their identified strengths and specific needs to help them reach their goals.
Role of the social worker in elderly care.
Geriatric social workers focus on elderly clients and their families to ensure they receive the mental, emotional, social, and familial supports they need while connecting them to resources for supplementary support. (See? Gap-fillers.) Geriatric social workers adjust their services to a senior’s ever-changing circumstances. They can assist with completing documents, and their knowledge of the aging process enables them to detect and address mental health concerns such as anxiety or depression.
Where to find geriatric social workers.
If you are in need of a geriatric social worker for your caregiving journey, you may find them in hospitals, community health clinics, hospice settings, long-term care homes, outpatient services, adult protection services, faith based communities, private practices, rehabilitation centers, referral centers, and government agencies.
What to expect when meeting with a geriatric social worker.
Once you meet with a geriatric social worker, they will perform a comprehensive psychosocial assessment to determine your loved one’s mental, emotional, and social needs and any medical conditions relating to their wellbeing. They will explore: Past and present mental, emotional and medical health; behavioral challenges the senior may have exhibited or is experiencing; and family background and dynamics including education, occupation, social, and financial factors. All this information is obtained while respecting the fragility of life situations and meeting folks where they are at.
I maintain that those receiving social work services are the experts in their own lives and this expert status should never be minimized. By obtaining a total picture through a psychosocial assessment, the social worker can help the senior, family, and multidisciplinary team design the best care plan possible. Every life is valuable and deserving of dignity and respect, and every voice needs to be heard. This is easy to say from the keys of my laptop, yet the reality of diminished cognitive abilities, failing health, family dynamics, dysfunction, injustices, poverty, substance abuse, mental illness, racial inequality, gender biases, LGBTQ experiences, and associated stigma are never far away. These are the places where you will see social workers exercising their skills as: Advocates, activists, assessors, community-builders, life-enrichers, de-escalators of volatile situations, resource-allocators, educators, facilitators, counsellors, and more.
How Social Workers Support Caregivers
As a caregiver, you may be in a place where you feel stuck and need resources. You may even be feeling burned out. Social workers can assist. They will listen to you and help you identify what it is you need even if you are struggling to put things into words.
Whether you are caregiving at home or your loved one is in residential care, social workers can:
- Access the financial resources you and your loved one may be eligible for such as Medicaid, pensions, insurance, Veteran’s Affairs, or governmental assistance programs.
- Identify services that enhance your experience as well as your loved one’s experience, such as respite care, day programs, transportation catering to special needs, and affordable medical equipment, such as hearing aids or mobility aids.
- Help your family talk about difficult topics such as end of life, funeral planning, and advance care planning and make recommendations on accessing information on advance directives, wills, representation agreements, power of attorney, etc. They will help you get a clear picture of what your loved one’s wishes are along with your own.
- Address family dynamics. Not all families function optimally, in fact dysfunction may be the norm within some family systems. A social worker can provide non-judgmental attention to each and every family member while keeping their radar finely tuned to what is going on within the family. When the social worker’s radar detects a problem, they can identify the action that needs to be taken to address and process the problem for their client’s safety and wellbeing.
- Work with the guardian and trustee for those who have had power imbalances that required intervention to safeguard the elder and their assets.
- Provide bereavement or grief counseling when your loved one has passed away and beforehand as you experience the losses that come with aging and dementia or chronic illnesses. They help families talk through the emotional and practical issues they encounter.
- Liaise and collaborate with the medical team as treatment plans are developed and updated (physicians, nurses, psychologists, occupational therapists, case managers, and other healthcare staff) and manage a discharge plan from hospital if need be. The social worker can relay a family’s wishes to the staff in long-term care, i.e. if the family feels their loved one could benefit from a special type of intervention and therapy or has a preference that the staff should know.
- Set-up care conferences, facilitate family meetings, and assist when the family is in a different province or State.
- Be the approachable link between the care community, the resident, and their family.
- Locate support groups that may help your specific situation. You will find the social worker is often a facilitator of support groups.
- Provide information and education on the disease process and what to expect.
- Provide comfort and help you feel less alone.
- Find the right channel to help you voice complaints when necessary.
- Manage a crisis and help fortify existing coping skills.
- Provide clarity for future planning.
Social Work Month 2021 Theme
March is Social Work Month, and the theme for 2021 is “Social Workers are Essential.” Social workers do a lot of work behind-the-scenes. As a result, their impact can get overlooked, but they are a powerful force guided by a Code of Ethics and Standards of Practice. When you start collaborating with a social worker, you will see just how essential they are. If you know a social worker, Social Work Month is a perfect time to tell them how much you appreciate them. Saying thanks by sending them a card or a note or giving back to your community, like donating to a food bank, are both actions you can take to let them know how much you value their work.
Tips for Preventing Caregiver Burnout and Managing Stress
Written by Alison van Schie and published in Caregiving.com on November 22, 2020
When I think of caregiver burnout I think of overwhelming stress that builds to the point of crippling exhaustion. I think of the pressure cooker analogy where steam continues to build and, if the venting valve is blocked, the cooker blows rendering it useless with a disastrous mess to clean. When a pressure cooker operates effectively, the pressure valve allows steam to be released regularly.
Caring for your loved one involves so much more than providing care; it includes your worries, anxieties, losses, anger, and guilt. It also includes your time, your energy, and often your finances. Caregiving needs can vary from support with daily activities and chores to more complicated levels of physical support and supervision (as is the case for dementia caregivers who are tasked with monitoring all activities for safety and to prevent wandering). All of these care scenarios can take their toll on you, dear caregiver.
I would not wish the pressure cooker situation on any family caregiver. Fortunately, it is entirely possible to prevent caregiver burnout and stress. By looking at each unique caregiving situation, we can identify where “steam” can be vented.
I recently asked a group of caregivers for their tips on preventing caregiver stress and burnout. Perhaps one or more of their self-care strategies could apply to your life:
- Be honest about your feelings.
- Share your feelings with someone you trust.
- Ask for help.
- Get out of the house and do something else; get away.
- Participate in a fitness class.
- Give yourself permission to take a break. This could mean not going to visit your loved one in care, or finding someone to stay with your loved one while you go out.
- Have a glass of wine. (But please drink responsibly.)
- Follow your pre-COVID routine as closely as possible.
- Take care of your health first (i.e. eat a healthy diet, get enough sleep, breathe deeply, monitor your own health, listen to your doctor, etc.).
- Let your loved one do the things he/she can still do for him/herself. Even if it takes longer and may not be done to your standards, it has a two-fold benefit: to maintain their skills and to make it so there’s one less thing for you to do.
- Pray or meditate.
- Listen to music.
- Share tasks with others when possible.
- Stay involved with things that interest you even if it has to be scaled back. For example, if you love to travel the best you can do now is to take a ‘vacation in your mind’ by looking through travel magazines.
- Join a support group either online or in person.
- Find respite care either formal or informal. Time away can help you better manage your stress and be a better caregiver.
- Find caregiver resources in your community, and access the ones that relate to your situation.
- Let go of housework. Instead, use any time you would spend on household chores doing something that brings you pleasure (unless vacuuming or dusting brings you pleasure). Read a book, make a phone call, take a bath, tinker in the garage, do whatever it is you like to do. And finally;
- Focus on the good moments.
Are you providing care alone? Or are you so immersed in your caregiving that you are unable to modulate your worries? If you answered yes, it’s time to ask for help. It can help to get someone else’s perspective on your stress level. And it’s more than okay to talk to someone about your innermost worries and feelings.
Asking for Help to Relieve Caregiver Stress
Written by Alison van Schie and published in Caregiving.com on October 27, 2020.
“If there’s something I can do to help, don’t be afraid to ask.”
This is a courtesy friends and family often extend to you as a caregiver. You thank them, but then how often do you follow up? What is it that’s holding you back from accepting their offer? Perhaps it’s because you think it’s just a nicety or aren’t convinced they mean it. Maybe you just have a hard time asking for help. Either way, ignoring the various signs of needing help can put you at an increased risk of injury and stress.
I understand the tendency to avoid asking for help. When I recently tried to grab an item on the top shelf at the store, my fingers barely touched it. Rather than heed the sign that recommended shoppers contact store staff for assistance getting items from the top shelf, I instead stood on my tiptoes straining to reach the item with my right hand. In the process, I pulled something in my shoulder which caused me discomfort for several days. I got the item down on my own, but at what physical cost? Why didn’t I do as the sign suggested and contact a salesperson to assist me? They have ladders and stools (and insurance in the event that an employee falls or causes themselves injury). Reflecting on this experience, I came up with several reasons why I found it hard to ask for help including:
- I didn’t want to wait;
- I didn’t want to inconvenience anyone;
- I didn’t want to look weak or incapable;
- I didn’t want to feel inadequate or needy;
- I wanted to be in control and do it myself.
Do these introspections sound familiar?
What I realized is I didn’t think beyond the immediate situation. It never occurred to me that my action would have painful consequences. My example can be applied to you, dear caregiver. When life situations change and you step into this role, either gradually or suddenly, you find yourself facing many new demands on your day. How do you fit all these new and possibly unfamiliar tasks into your already busy day? Responsibilities seem to double, and yet the hours in the day remain the same and your energy reserve hasn’t changed. It only seems natural to add these tasks to your to-do list as you want to be there for your loved one–fitting their activities for daily living into your life–but at what cost? You need, and deserve, help.
How to Ask for Help
Remember that question from the beginning of this post? Accept their offer! If it turns out your friends and family weren’t genuine, you will quickly find out. Whether it’s picking up groceries or medications, mowing the lawn, shoveling the walk, or doing some cleaning or laundry people are generally sincere about their desire to help. These may seem like simple tasks, but by asking for help you will take an important first step to reducing your stress and saving yourself from injury or burnout which, in turn, has positive effects on your loved one.
It may seem foreign to ask for assistance, but once you start you will become more comfortable making requests and others will know that you are open to receiving their help. I challenge you to give it a try by asking someone to bring you a meal today and see what happens!
As a caregiver you likely don’t have time to reflect on your reasons for not asking for help, but you need to take the time to start asking for help. Self-reflection can come later. Your commitment to care for your loved one doesn’t mean you have to do it all yourself. It’s quite likely that your loved one may appreciate someone else’s cooking for a change or companionship for an hour or two and you will feel better knowing you’re reducing your risk of injury or burnout.
Even though asking for help may seem hard, there are definite and often immediate benefits for you. Enjoy that meal, and remember that help is out there. You just have to ask.