There are a lot of articles, blogs, books, videos and websites that focus on those who care for people who have Alzheimer’s and other dementia-related diseases.
And that’s because the role of caregiver is not an easy one. Whether one cares for a person full-time or part-time, the stress is unbelievable.
One of the reasons there is so much content on the Web and support for the caregiver is because many caregivers become ill or undergo life-threatening illnesses themselves, perpetuated by the stress.
From my own personal journey (and watching others care for their parents) I have learned that a great deal of the stress is caused by our non-acceptance of the disease and non-acceptance of our new reality.
For me, mindfulness and acceptance led me to a new awareness of the disease, to a more fulfilling relationship with my parents, and to a new way of dealing with loss and sorrow, as well as aging and death.
Mindfulness led me to loving kindness and compassion for both my parents who had Alzheimer’s, and for myself. I had spent a lot of time beating myself up in the past, and self-compassion completely transformed me.
Mindfulness is really just another word for awareness or paying attention. And most people who do not practice mindfulness or meditation are completely unaware of their underlying emotions and thoughts. Thoughts and emotions are connected – we cannot have negative thoughts without a negative emotion following.
When we live in a hurry-up culture and a culture that emphasizes the ego, most of us are in the dark about how other people feel; most of us don’t pay attention to our own bodies or emotions, let alone another person’s.
The challenge of caring for someone who has a dementia-related disease leaves very little time for the caregiver to dwell on his own emotional state. And that’s a problem.
Because it is in mindfulness or sitting in silence (or meditation) where insights to our real state of mind occur.
Most caregivers spend their day supporting their loved one and managing their symptoms: toileting, bathing, dressing, feeding, laundry, doctor appointments, and management of medicines/prescriptions. Sometimes the person is in a wheelchair or uses a walker or cane so heavy lifting or supporting the individual is necessary throughout the day and night, a physical toil.
Many nights the bed linens will need to be stripped and laundered. And most times, pajamas, too.
If the parent or loved one has ‘sundowning’ (which is fairly common – day and night turned around) then the caregiver will be awakened throughout the night and on “high alert” to listen for the night wanderings. Unfortunately, the person with a dementia-related disease is often agitated at this time and symptoms become more difficult to manage. Ultimately this translates into less sleep for everyone in the household – especially for the person with the disease and for the primary caregiver.
As I wrote in my free-eBook, meals, laundry and housekeeping will need to be attended to throughout the day – meals, snacks, drinks, toileting, personal care; repeat.
The individual will need to have regular medical check-ups, blood work, hospital appointments, and prescription pick-up. Banking and financial matters will be the primary caregiver’s responsibility, along with your loved one’s home maintenance and responsibilities, not to mention your own home’s maintenance and care.
And sadly, most of these tasks will need to be done with cajoling and subtle manipulation so that the individual will oblige. Many persons with Alzheimer’s will be upset with the caregiver, stubborn, angry or resistant and demanding at times as their world is changing too quickly for them to understand and their loss of control is terrifying to them. Many stubborn acts of resistance are due to their fear – that is the only way for them to express their loss of control. Both the person with Alzheimer’s and the caregiver will be emotionally and physically weary.
Caregiving fatigue will often follow and it has many symptoms: fatigue, sleep deprivation, anxiety, stress and depression. And the experts remind us that stress leads to illness (which makes us more stressed).
When our stress levels become so high, we become disinterested in life and we begin to lose hope that this difficult journey will ever end. Did I just write that we begin to lose hope that this difficult journey will ever end? What kind of horrible caregiver am I to think such a thought? Now, I am more stressed.
What if I told you that it is normal to feel some resentment, anger and guilt while caregiving? What if I told you that while doing research over the years, that I have discovered that it is perfectly normal (when stressed to the max and so bone-weary) to have such emotions?
We cannot take care of ourselves and hope to heal if we cannot feel compassion for ourselves and that process begins with recognition and awareness of our thoughts and emotions.
And that is where mindfulness is the key to healing ourselves.
Our anger or resentment or caregiver fatigue is a red flag to remind us that we are off-balance – we need to pay attention to an issue that hasn’t yet been accepted or resolved. (Perhaps you have not accepted that your loved one has this disease, and so you are still fighting it. Or, perhaps you resent the time that it takes to care for someone because it means less time to care for your spouse and children. Or, perhaps you are caring for your spouse, and deep down you are terrified of being left alone.)
If we sit just for a few minutes throughout the day, in silence and in stillness, and ask ourselves a few questions:
Why do I feel this resentment?
Why am I so angry?
Why do I feel guilty?
Why am I trying so hard to be the perfect, supportive caregiver?
Allow yourself to just sit with whatever arises.
With honesty and truthfulness, allow yourself to look at your situation, at your relationship with your loved one, at the disease, and the sorrow and the sadness.
Allow your feelings and your thoughts to come up. We cannot heal if we do not recognize and then accept these emotions that we have been spending so much time trying to hide. We think if we push the emotions down or away (or ignore them) that we will be able to carry on. But the truth is that these emotions (without addressing them) will become toxic and harmful. The truth is these emotions never go away or disappear – they just fester.
Recognition and acceptance of our underlying emotions can (in time) lead to compassion for ourselves, and this self-compassion will lead to forgiving ourselves. When we begin to forgive ourselves with compassion, we will open our hearts to forgiving others. Our compassion will expand towards others, and kindness and love will enter.
It’s a heavy burden to feel guilt and resentment when caring for a loved one. Imagine how freeing it is to allow ourselves recognition, acceptance, and forgiveness of our emotions.
Imagine how healing it is when we accept that we are mourning for our loved one – even though he/she hasn’t died! (Yes, it is normal to grieve before your loved one dies – anticipatory grief.)
It’s okay and normal to mourn the many losses that surround the prognosis of Alzheimer’s disease: our loved one is no longer the person that he was; perhaps our loved one does not remember us; our loved one cannot support himself; our loved one has lost many of his abilities; our relationship has changed – we are the primary carer now (the roles have reversed); we are fearful of the future and what it may bring; our life has been drastically altered; our own health and well-being has suffered; perhaps our family sees less of us because we devote a full day to caregiving; we want our old life back, before Alzheimer’s entered our life. And we are full of sorrow when we see how our loved one suffers. We are heart-broken.
Once we face our fears (and name them aloud), we are able to let go of them, almost as if these thoughts that float around in our subconscious create havoc wherever they land, and once acknowledged – that is we pay attention to them – they begin to shrivel up and slowly dissipate. (Have you ever had ideas and thoughts jumbling around (portmanteau word: a jumble that tumbles) making no sense, and then began to write? Just the process of writing your stream of consciousness helps. As if we pluck these ideas from the interior muddle, and plop them down onto paper and poof! They no longer randomly float in our head. The muddle clears.)
I often think of Pema Chodron, Tibetan Buddhist, who advises us that when we run from the monster in our nightmare, we are terrified…but when we stop and turn around and finally stare the monster down…we find peace. The monster shrinks in size, and when he shrinks, we become more aware of his vulnerability. We begin to feel seeds of compassion for the monster.
When we dwell in our heads with thoughts and fears about… what if?… we are not present. When we wish the difficult journey was over or that it had never happened, we are rejecting the present moment. We are rejecting our reality; we are rejecting life as it unfolds.
Caregiving is a challenge, and there is no denying that fact. But when we cannot accept the prognosis or our reality, the challenge will even be more difficult. Most importantly, our time with our loved one will be fraught with stress and sadness.
Mindfulness or being present or paying attention to the present moment will lead us to a compassion-filled journey. It will allow us to be authentic. We will mourn, yes. We will cry, yes. But those moments will be real. We will not try to deny our sadness. Instead, we will lean into them and just feel them. Allow them space. And it is in that space, that Grace enters. And as Thich Nhat Hanh often reminds us to tell ourselves, “My darling, I am here for you.”
When we allow compassion, love and Grace to enter, our awareness will begin to notice the joy and the love within the sorrowful moment.
While I mourned by my mother’s bedside while she was dying, I watched the sun rise each morning. The magnificent palette of the skies will stay in my memory bank forever, as will the loving and kind gestures of the staff. Those moments are joy and love-filled, side by side with sorrow and tears.
Mindfulness allows for an easier journey because it will be filled with little sacred moments – of laughter, peace and fulfillment, reconciliation and forgiveness. Sorrow and tears, too.
Gifts; all gifts.