The Unseen Battle: The Emotional Strain of Caring for Alzheimer’s and Dementia Patients

by Maureen Fearon

Caring for a loved one with Alzheimer’s or dementia is a journey marked by profound emotional challenges with the power to damage confidence, self-esteem and self-worth. This role is not just physically demanding but also emotionally taxing. Witnessing the gradual decline of someone we love or care about, who was once vibrant and independent, can feel wrong, unfair and be a living nightmare. The emotional toll on caregivers can never be measured. It can be devastating, encompassing feelings including, grief, frustration, guilt and isolation. Not knowing precisely how long this role is going to be required, can feel like an endless form of a prison sentence, pausing life, happiness, relationships, careers and more.

Grief and Loss

Grief and a sense of loss can strike from the moment the news is heard. Carers can experience ongoing grief with varying intensities. Alzheimer's and dementia gradually erode the personality and capabilities of the person affected and present “alien” behaviour leading to a type of ambiguous loss. Mourning the gradual disappearance of a loved one’s memory, personality and autonomy can be overwhelming. This anticipatory grief can be as intense as, if not more than, the sorrow felt after the person actually passes away. Each lost memory, skill, or moment of recognition can feel like a small death, leading to a continuous cycle of mourning.

Frustration and Helplessness

It is natural to experience frustration and helplessness when coping with the erratic and often inexplicable behaviours associated with the decline. Simple tasks can become monumental challenges and efforts to reason with the loved one may prove futile. Carers can even develop self-doubt, thinking, “Is it me” who has misinterpreted a situation, forgotten something, or was I harsh, unkind or bullying in my behaviour? Witnessing deterioration, powerless to heal,  can cause helplessness which can easily be inflamed by the unpredictability of the disease’s progression. The services available (or not) and the behaviour of professionals in this sector can cause frustration and helplessness for several reasons.

Adapting to Changes

Not just with the unwanted shocking redirection of life and what the future might look like, the caregiver must constantly adapt to change and new realities, often without any clear guidance, knowledge of this journey or effective support. Most adults prefer stability and predictable living. Frequent change can generate feelings of inadequacy in providing the needed care, which can be deeply frustrating and disheartening.

Adults naturally prefer stability and predictability, which gives us a sense of control and security in life. This resistance to change is rooted in the fear of the unknown, loss of feeling safe and comfortable. Unwanted and unexpected change can trigger panic, anxiety, stress and with repetition can lead to a form of PTSD (Post Traumatic Stress Disorder). Faced with change, adults may experience a disruption of cognitive and emotional balance, leading to discomfort, resistance and even overwhelm. This resistance can harm mindsets and foster negative attitudes, limiting our personal growth, reducing adaptability and hampering our resilience. Over time, an inflexible mindset has difficulty learning, finding solutions and being innovative, negatively affecting our overall well-being.

It may be a tough phase of life being a carer, but there are things we can do to limit the upsets, despair and damage and better manage emotions. Below is a suggestion of a plan for such unwanted journeys. Hopefully, you will never need it but maybe you can pass it on to someone who does need it.

Guilt and Self-Doubt

Guilt is common among caregivers. Lots of good people “do” more guilt than they deserve and have no cause to feel guilt at all! Guilt can be an unwanted gift we learn in childhood and I love to help people explore stopping it. Several years ago, I designed and delivered a brief workshop to help people reduce or stop ‘doing’ guilt. It doesn’t take as long as people expect and can enhance so many aspects of life. We can fall into the trap of feeling guilty for

·      What we have done

·      What we haven’t done

·      Thoughts we have had

·      Thoughts we haven’t had

·      For getting frustrated

·      For needing breaks and time off

·      Feeling like we aren’t doing enough

·      For not being able to heal the loved ones

·      Having a sense of abandoning (even if attending nearly every minute of the day or night, or having sacrificed their life activities to contribute significant time)

·      Not having the health or strength to give more

Decisions about long-term care or assisted living facilities can be particularly guilt-inducing, as carers wrestle with feelings of betrayal or abandonment.

This guilt can be accompanied by self-doubt and feeling inadequate or stupid, as carers question their judgment and capability to manage the complex needs of someone with a deteriorating condition.

Isolation and Loneliness

The role of a carer can be incredibly isolating. Few can know what it is like unless they have had experience either as a carer or observer of a carer through the tough days. “Caring demands” consume time which was available for social interactions or personal activities. Friends and family may distance themselves, due to discomfort, dis-interest in helping or uncertainty about how to help. Some, for several reasons may stay away as they don’t want to be involved in the challenging work, the dirty work and the time involved. Sometimes family and friends may misunderstand your lack of time for them and feel neglected or even angry. Until they realise how difficult it is to be the carer there is no understanding of the challenges and sacrifices.

Many carers can feel alone. This isolation can lead to profound loneliness, as caregivers feel disconnected from their previous lives and unsupported in their current challenges. The lack of understanding from others about the daily realities of caregiving can exacerbate this sense of solitude.

Asking for Help

Many individuals find it a challenge to share their struggles, often due to pride, a sense of shame, or feelings of failure. Additionally, asking for help can be a painful, even traumatic, experience. Seeking assistance is a complex process; while many people excel at asking for help from others and are generous in offering support, they struggle significantly when it comes to seeking help for themselves. Sometimes, putting on a façade serves as a form of self-protection, helping to avoid unwanted attention that, deep down, they need and desire. The good news is that we can learn to ask for help with ease. That can be a great relief and benefit in so many ways.

Emotional Resilience and Coping Strategies

Whilst some carers develop remarkable emotional resilience many others do not. Some manage to get through the time with the loved one and then emotionally break down or turn to food, drink or drugs to cope. Support groups can offer a sense of community and shared experiences, providing much-needed emotional support and practical advice. Not all support groups may be suitable and it is important to recruit the best support and evaluate how useful or not they are. A client “confessed” to me that the support group that had been recommended to attend, made her feel worse. The meeting focused on talking about the challenges she was desperate to escape from. She wanted to be bathed in positivity, even have some laughter and a mini break from the challenges.

Professional Help - Respite care services can be crucial, allowing carers to take breaks, recharge and “reboot” the system. It is vitally important to aim to maintain mental and emotional health to perform the best care. Professional help can offer a safe space to express feelings, develop coping strategies and heal emotionally. It is useful to know the difference between the modalities.

Talk therapy - Guided talking can help by voicing thoughts and feelings. It may help to gain perspective, explore coping strategies and give a sense of relief. However, depending on the practitioner and the direction of the discussion, talking can hinder by reopening old wounds, enhancing the sense of hopelessness of the situation, causing an increased sense of doom.

Coaching can be particularly useful as it structurally focuses on what is possible in the most positive way. That can be in terms of how to self-manage, make the best choices or discover your boundaries to positively deal with the behaviour of the person you are caring for.

Emotional Therapy

Emotional therapy, such as Emotional Freedom Techniques (EFT), can profoundly benefit caregivers. EFT helps release negative emotions, reduce stress, and alleviate anxiety through gentle tapping sequences, combined with cognitive reframing. This therapy promotes emotional healing by addressing unresolved feelings such as grief, guilt, and frustration, leading to a sense of inner peace and resilience. By regularly practising EFT, caregivers can experience improved emotional regulation, enhanced self-compassion, and a renewed ability to connect empathetically with their loved ones. The positive changes facilitated by EFT enable caregivers to maintain a healthier, more balanced mindset, crucial for sustaining their caregiving responsibilities.

Access Bars. This therapy involves gently touching 32 points on the head, believed to store electromagnetic components of thoughts, feelings, and emotions. By stimulating these points, Access Bars can help release stress, anxiety, and emotional blockages, fostering a sense of relaxation and clarity. Caregivers may experience a reduction in overwhelm, enhanced mental clarity and increased emotional resilience. This renewed mental state can improve the ability to manage caregiving challenges, maintain patience, allowing for the most positive and supportive environment possible.

The Carers Seven-Step Plan

1. Educate Yourself

Understand the Disease: Learn about Alzheimer’s and dementia, their progression, symptoms, and treatment options (both medical and holistic). Knowledge empowers you to anticipate challenges and manage them effectively. The more we know, the more the choices we have

Seek Training: Attend workshops or seminars on caregiving skills, communication strategies, influencing skills, and stress management.

2. Build a Support Network

Identify the family members and friends that can be involved in caregiving tasks. Share responsibilities to avoid burnout. Maybe learn how to delegate especially to those who may prefer to avoid their responsibility. (sadly, that happens more often than expected).

Support Groups: Seek out the most suitable support group(s) to share experiences, gain emotional support, and receive practical advice from others in similar situations.

3. Set Realistic Goals and Expectations

Learn how to set goals. Most are not taught the basics of how to set and achieve goals. Prioritise Tasks: Identify essential caregiving duties, delegate non-essential tasks when possible and timetable your recovery time (even if it is a twenty-minute window, plan how to best make use of that precious time).

Accept Limitations: Recognise your limits and be realistic about what you can achieve in your care role. Forget perfection, instead focus on doing your best.

4. Practice Self-Care

Physical Health: Maintain a balanced diet, exercise regularly, drink plenty of water and ensure you get adequate sleep (you may have to learn how to master sleep through challenging times).

Mental Health: Identify and engage in activities that relax and rejuvenate you, such as hobbies, reading, or meditation. Learn how to use techniques such as EFT so that you can perform emotional therapy when needed and is good for you. The basic routine is easily learnt and has helped many carers to cope with not only the unwanted emotions, but also physical pain and fatigue, when they need it. Of course explore professional help. Not everyone can afford private practice, which can be highly effective  and there may be free services through support organisations. It is worth exploring.

5. Use Respite Care Services

Temporary Relief: Utilise and embrace respite care services to take regular breaks from caregiving duties. This can include in-home respite, adult day care centres, or short-term nursing homes. Embrace what is available. You need to be looked after too.

Plan Breaks: Schedule regular time off to recharge, ensuring you return to your caregiving role with renewed energy, patience and positivity.

6. Leverage Professional Resources

Healthcare Professionals: Work closely with doctors, nurses, and social workers to ensure comprehensive care for your loved one.

Legal and Financial Advisors: Consult with experts to manage legal issues, such as power of attorney, and financial planning for long-term care needs.

7. Maintain Open Communication

With the loved one: Keep the lines of communication open with the person you are caring for, respecting their wishes and involving them in decision-making as much as possible.

With Support Network: Regularly update and communicate with your support network about your needs, challenges, and any changes in your loved one’s condition.

By following this seven-step plan, caregivers can effectively manage their responsibilities while protecting their mental, physical and emotional health. Building a strong support network, setting realistic goals, practicing self-care, utilising respite services, and leveraging professional resources are all crucial components for maintaining a balanced and sustainable caregiving role.

Engaging in self-care practices, such as regular exercise, meditation, and hobbies, can help mitigate the emotional strain. It’s also essential for caregivers to seek and accept help from friends, family, and professionals. Recognising the importance of their well-being is a critical step in ensuring they can continue to provide compassionate care for their loved one.

In conclusion, the emotional challenges faced by caregivers of loved ones with Alzheimer’s and dementia are profound and multifaceted. The journey is one of deep emotional labour, marked by grief, frustration, guilt, isolation and more. However, with support, self-care, and resilience, caregivers can navigate these challenges, finding strength, meaning and solace in their love and dedication.

Being a carer can be a seriously challenging time. Often unsung heroes who deserve much applause are hidden in the background. Let’s look after them wherever we possibly can.

Thank you for reading,

Maureen Fearon, WCH British Isles