Monthly Archives: November 2014

What if…when I visited my loved one who has a dementia?

Birch trees in the front yard of our rental cottage

When we are in touch with the refreshing, peaceful and healing elements within ourselves and around us, we learn how to cherish and protect these things and make them grow. These elements of peace are available to us anytime…Thich Nhat Hanh

What if?
What if…when I visited my loved one, I had no ulterior motive, no hidden agenda and no expectations, except to be with my loved one?
What if…when I visited my loved one, I went with love; nothing else, just love?
What if…when I visited my loved one, I walked through the door and said, “I’m here for you. You are not alone.”? Just that.
What if…when I visited my loved one, I said, “I’m sorry that you are ill, but know that you are not alone.”?
What if…when I visited my loved one, I left resentment, anger, guilt, anguish, stress and grief, outside? And instead, I carried into the room – peace, forgiveness (for yourself and for your loved one), kindness and compassion?
What if…when I visited my loved one, my presence…healed (in just a small way) their heart?
What if…when I visited my loved one, my presence mattered?
What if…when I visited my loved one, my presence (just by being me) kept them tethered to the present – this moment?
What if…when I visited my loved one, she (he) understands that I bring positive energy? And if not intellectually, what if intuitively, perceptively or spiritually they feel my loving energy? What if she does not know my name, but recognizes love?
What if…when I visited my loved one, I looked into their eyes and recognized a face of joy, delight, pleasure and love?
What if…when I visited my loved one, I opened my heart?
What if?

Kindness and Compassion – Gifts from the Universe

“Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.”   Henry James

Self-care is an important issue that is particularly close to my heart. I have learned the hard way that giving your all to caring for aging parents is not smart – it’s harmful to your body. Physically, mentally, emotionally and spiritually I always felt drained when I cared for my father.  My doctor diagnosed my ailments to a compromised endocrine system. To put it in layman’s terms, my body could not turn off the cortisol due to the constant stress.

Thankfully, I have recovered and feel well-rested and lucky – lucky to have learned some valuable lessons about life, compassion and self-care. I had forgotten that compassion and kindness begins at home. It begins with me! We must look after ourselves first, with love and compassion; then, and only then, can we turn to others and look after them.

Now I want everybody to start loving themselves. I am like the reformed smoker who wants everybody to quit smoking! Hey, it’s good for you…love yourself. Be kind to yourself. Have some compassion – for yourself!

Most of us have been taught to put others first. And strangely enough, I believe when we love ourselves, we do put others first; in fact, when we honour ourselves, we are honoring others. When we are kind to ourselves and love ourselves – guess what? – we are opening our hearts to more kindness. From my own experience, I have found that the more I care for myself and love myself, I find that I love and care for others on such a deeper level of awareness; I see them!

When we perform small acts of kindness, we honour our bodies, minds and spirits; our physical health, emotional health and spiritual health will begin to thrive.

Because when we are kind to others – we are kind to ourselves!

Say yes and thank you to a friend’s offer of help; instead of being self-sufficient, open yourself to accepting a gift of support. Yes, that is accepting a gift from the Universe (and you are now practicing an open mind.)

An open mind is a natural first step to accepting and receiving gifts. We mistakenly think all acts of kindness and gifts should come from ourselves, to others. But I believe that our gifts (talents, passions, and abilities) that we possess and want to share with others are gifts from the Universe. Gifts take many paths – to be fully a gift, it must spread far and wide. Gifts that come back to us are part of the Universe’s flow…do not stop them in their path. When we accept a gift from someone, we please them; we honour them. We thank them. All part of the flow and the magnitude of the gift. Because I believe gifts never end…they keep on giving, over and over.

Think of a good deed that you perform for a neighbour. Your neighbour is pleased and thankful and now her energy shifts to a loving and peaceful energy which she now shares with others. Her family notices the change in her energy fields – she is radiating love and gratitude. Her gratitude leads her to perform an act of kindness to another, and another. Those others share their loving energy and gratitude; and so it flows – over and over. What a beautiful thought, yes?

Perhaps a single word of kindness or a smile transforms a stranger’s mood and makes all the difference in the world. We do not know what our words of kindness may achieve; we only know that words of kindness matter. Always.

During a morning walk a few weeks ago, my husband and I passed a young man who was huddled, wearing a hoodie and low-hanging jeans. He stood in the centre of the sidewalk, immobile. He looked as if he had the world’s troubles on his back. My husband and I always greet people that we pass with a cheery “Good morning!” Often we stop and exchange our thoughts on the weather (it’s a Canadian thing to do. Eh!). My husband greeted the young man as we walked around him, “Good morning. It’s a beautiful day, is it not?” The young man look startled and he begrudgingly muttered to us, “Hmmp, if you say so.” My husband laughed out loud and answered, “Yes. We say so.”

I wish I could say the young man laughed and agreed with us. He did not. He turned away in disgust. But both my husband and I have many times since agreed that maybe, just maybe, we both needed to send him some loving energy – so we did.

I witness kindness and compassion every day that I visit the residence where my mother now lives. I see personal care workers hug the residents; I see personal care workers hold a resident’s arm as they walk down a hallway – the personal care worker singing “You Are My Sunshine.” I see volunteers who visit residents weekly and play cards, walk with them and talk to them. I witness loving energy every day.

And I have discovered that when we are kind and compassionate, we are transformed.

It is these simple acts of kindness, compassion, support, advice, attention, listening, smiling, complimenting and respecting that honour our fellow human beings. These simple acts connect us, and it is these connections that matter and make life worth living. These simple acts become transformative – for others and for ourselves.

The more that we learn to love and accept ourselves for who we are (just as we are), the more we learn to love and accept others for who they are (just as they are).

Kindness and compassion leads to love and acceptance. Kindness, compassion, love and acceptance – all gifts! Gifts that are meant to be shared.

 

Resistance

My garden

My garden

Today I am reflecting on my resistance to change. The meaning of resistance is non-acceptance or struggle. Or conflict. Why would we want resistance in our daily lives? We do not choose resistance…it chooses us. Actually our subconscious chooses it for us and it is based (as most negative energy is) in fear.

Fear. That word pops up again and again, but why? Why do we fear so many things? Eckhart Tolle reminds us in all of his books that fear is the basis of most of our negative thoughts and actions…it is the opposite of love. Our ego plays the lead character in creating fear in our lives, and so the trick is to remind ourselves of the ego’s goal…to undermine our good intentions; that is, our goals, our passions, our love.

For me, I have learned that when I feel resistance rising (which is my default button when I sense change in the air), I need to stop and become aware of the resistance. So I name it or label it, “Oh, I am feeling an inner struggle with that thought. Here comes resistance!” Thus, the first step is the recognition that there is resistance. Next, I ask myself why I would resist this. Most times the answer comes easily… fear of change, fear of letting go, fear of failing, fear of the past and my personal favourite (because it has become my old friend)…fear of the unknown. When I face my fears head on, I feel relief. Yes, relief. I have faced my fears and labelled them. When we do this simple action, we are taking the first steps in dissolving the fear.

Now for the next step: Add trust and love. Just thinking about this next step calms my fears and my resistance because I have changed my own personal energy. When I remind myself to trust in the Universe and to trust myself, I can calm myself and begin to smile. Metaphorically and literally. I remember to smile because it is my way of assuring myself that I am okay just as I am. When I add love to the mixture, I feel whole again. And I feel peace.

Steven Pressfield in his book, The War of Art, states that resistance is a sure sign that the thing we are resisting is the very thing that we really must want or desire. Resistance is the key or red flag to our deepest desires, or deepest yearnings. What a powerful thought! Pressfield’s take on resistance gives us another tool to open ourselves to a more complete, fuller and enriched life. Why live in resistance when we can open ourselves to overcoming the challenge of the moment. If we can meet our struggles or resistance with insight, instead of fear, we can live up to our potential. I am all for that. Growth! Instead of digging in our heels and saying “No!”

The Tao’s greatest message to us is to live life as it happens, fully present – to flow like a river or…flow with the river. I often visualize the river gushing in torrents at some parts of its journey, while lapping serenely against the banks of the river at other times. The banks of the river do not resist the river. The shoreline may change over time, but it does not stand up and resist the water’s impact. Nature just flows. As humans, we can take a lesson from Nature.

Resistance is inherent within humans – we abhor change. We like the status quo. But we meet change and adapt to it every day – we say goodbye to neighbours who move away; we change jobs; children grow up; our children’s children grow up; we age and then we die. All change.

When we begin to accept change and even embrace it, we will begin to flow like a river.

When I looked after my father who had Alzheimer’s disease, I rallied against the gods every day – I resisted change! Since his death, and my second chance to care for my mother and do it better (with more insight and loving energy and less resistance and fear), I have embraced the lessons – the gifts – and learned to accept change, not as a good thing or a bad thing, but just to accept that the change is what it is. Nothing more; nothing less.

And a funny thing happened while caring for my mother…I have learned to accept aging and death without fear. And while visiting the aging residents at the long-term care facility where my mother resides now, I have learned to live in the moment – to laugh and appreciate the residents – each one unique and oh, so beautiful.

So, the next time we meet resistance (and we will often) we must confront it and stare it down. Ask ourselves the meaningful questions: What am I resisting? What do I fear? Why do I fear that? Our answers might surprise us as insight into our true nature is often surprising. But insight is just that…inner sight!

Let us learn not to judge ourselves, but instead, learn to open up. When we open, we become bigger and larger and we create a space for our potential – we open ourselves to possibilities. What if I can change? What if I can do it a different way that leads to a better way? What if my loss leads to a gift – a new experience that nourishes my spirit? What if resistance can lead to an opportunity?

In Deepak Chopra and Ruldolph E. Tanzi’s book, SuperBrain: Unleashing the Explosive Power of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being, the authors remind us that change is vital to living a long and healthy life, as they encourage us to accept change in all its forms.

I have found that I am completely open to accepting that I have resistance…that I am not as evolved as I had hoped I would be at this stage of my life. That acceptance has led me to more acceptance. I accept that I am not perfect or as evolved as I had hoped. I am okay with that. I accept myself just as I am.

I am going for a walk now. Perhaps I will take a different route; maybe I’ll open myself to a prettier, more scenic one. Or perhaps I’ll meet someone on my way. Or…maybe nothing profound will happen. And I am okay with that.

I choose to take a different route because I can. And that is enough for me.

 

 

 

Let It Rip – Give in to Your Emotions

Whatever you accept completely will take you to peace, including the acceptance that you cannot accept, that you are in resistance…E. Tolle (Stillness Speaks)

The Long-Term Care Facility where my mother resides distributes a monthly newsletter.  For the last couple of months, the newsletter has presented the seven A’s of dementia which I believe all of us (as family members, visitors and caregivers) should read and try to understand. When we understand why our loved one acts or reacts in certain situations, that information can help us support our loved one. In addition, the information helps “unveil” the mystery of the disease, and our compassion will increase with understanding.

Most of all, the information acts as another tool for managing the symptoms. If your normal response is to argue with a loved one who has a dementia, then knowledge about how the brain is affected by a dementia-related disease will soon open your eyes and mind – arguments and debates are futile and only lead you to suffer more. Of course, arguments and debates confuse the person and usually exacerbate his symptoms and further distress the person with a dementia.

Here are the seven A’s of dementia:

  • Anosognosia
  • Agnosia
  • Aphasia
  • Apraxia
  • Altered perception
  • Amnesia
  • Apathy

Each A represents damage to a particular part of the brain. Note also that not all persons with a dementia-related disease exhibit all symptoms. I will discuss the seven symptoms later in other blogs. For now, let’s discuss Anosognosia.

Anosognosia – person has no knowledge of their illness; therefore, the person will have no insight that they have deficits. For instance, the person will not recognize that they are no longer able to care for themselves. They might resist any support or assistance from the caregiver with regard to bathing, washing, dressing, etc.

This is a symptom that most caregivers recognize immediately as our loved ones resist us (or fight or argue) over…well, everything! Everything! My mother insists that she can go shopping on her own (she is in a wheelchair and gets lost going down the hallway); she insists that we should never have taken her keys away or sold the car; she insists that “this weekend, I am going to drive myself to another residence”); she insists that she will do her own laundry; she insists that she can go to the bathroom on her own (she cannot…trust me!); and lastly, she insists that she will go and make us a cup of tea because “my kitchen is upstairs”…it’s not! (On one occasion, when her friend visited, my mother told her friend that she would go and make tea for them. My mother left the room in her wheelchair. Her friend waited and waited. Eventually she went down the hallway looking for my mother. She found my mother drinking a cup of tea that a personal care worker had made for her. My mother saw her friend and exclaimed, “Oh, Margaret, how lovely to see you.” Mom had completely forgotten that she had a visitor or that she was looking for tea for the two of them.)

Personal care is a particularly difficult and sensitive issue with our loved ones. When I cared for my father in his home, he was always compliant. He just went with the flow. My mother is the exact opposite of my father. She argues and resists any assistance. If she needs to go to the bathroom, she will insist that she can manage on her own. She becomes quite vehement about this issue. In the old days (before I accepted my reality) I would argue with her and point out that she needed my assistance. Now, I either ring the call bell in spite of my mother’s wishes, or I wait for her to calm herself and then I deliberately wheel her chair into the bathroom and begin to assist her…without saying a word. I do not remind her that she is incapable of managing on her own.

The non-confrontational approach is the best advice one can receive…smile and just wait. Wait for a few seconds to allow your loved one some dignity – either allow them to speak or allow them some space (stillness) – then, approach them slowly and begin to assist them. If possible, speak in low tones (non-confrontational) and explain what you are doing. I have also found that if I distract my mother while I am completing a task, that breaks her attention on the task and she re-focuses on another subject.

When my mother resists when I push her wheelchair (she plants her feet on the floor and that chair is not going anywhere!), I will stop and listen. She might try to explain something that I don’t understand. I listen. And listen. When she is finished speaking, I might say “Let’s finish here in the bathroom and go and get a cup of tea.” Usually she responds in agreement. And once again, I push the chair into the bathroom.

I have found that the mere act of staying still and silent while she expands on something is enough. Many times I do not understand what she has said. Sometimes I do not understand the gist of the meaning or her intent; but we can all understand the emotional energy of fear, anger or frustration.

Recently I helped my mother in the bathroom and I wheeled her to the sink to wash her hands. When I pumped the soap dispenser and gave her some of the soapy suds, she began to wash her hands and burst into tears. I froze. I wanted to weep. But as she cried, I leaned over and wrapped my arms around her and began to cry, too. We wept together.

I have learned that holding back the tears do not serve me or honour my emotions. So as my kids would say, I “let it rip!”

When we had a moment, I asked my mother what was wrong and she answered that she hated always needing help. Well, I can understand that as most of us value our independence and would never want to lose it.

Unfortunately, when one has a dementia-related disease, the loss of independence is a reality. One will lose independence…it’s inevitable.

In that shared moment, we mourned her loss of independence. I felt humbled that she allowed me to see her vulnerability and I honoured her by showing my own vulnerability.

That moment will always be seared in my memory. But not because I saw it as a loss, but because I see it as a connection – shared vulnerability.

Afterwards, my mother revealed that she was also upset that someone would not give her a kleenex when she asked for one during the lunch meal. Yes, a kleenex! I listened as she told me a disconnected story of wanting a kleenex, and no one gave her one. She is completely unaware that her table mates have hearing difficulties and dementia-related issues also. (But I did not try to explain that to her.) So she began to cry in the dining room. A personal care worker recognized her distress, and wheeled her back to her room so that she could be alone. That is when I arrived.

After we had dried our tears, I suggested that we find the personal care worker and give her thanks for caring about mom during the mealtime and she agreed.

When we found our personal care worker and had thanked her for her kindness, she, too, had tears in her eyes as she hugged my mother. In that moment the three of us shared a connection.

Later when I drove home from the residence, I reflected on my own emotions. I was glad that I had given into my emotions and cried with my mother. There was a time that I would have held back the tears and tried to bury them, and my body and my spirit would have suffered for it.

When we truly accept our emotions (even when they are like a roller-coaster), we can begin to accept the disease, also. We are human; we will experience many emotions throughout this journey – as soon as you recognize this fact, then you are recognizing your “reality.”

Let it rip! Give into your emotions. You will feel free. When I was little, my mother would often say that a good cry was good for the soul. I still believe her. My soul thanks her.

The Seven A’s of Dementia – Wikipedia.org

 

 

 

 

 

 

In grief, find peace

My garden in early spring

My garden in early spring

It was my sister’s birthday a few days ago and because my mother has been sleeping more than usual we decide to visit her with tea and donut holes, instead of having a party.

I have bought a birthday card for my mother to give to my sister as choosing a card herself would be a task that my mother could not handle. The simple act of signing the card takes my mother an inordinate amount of time; often it is signed incorrectly or illegible. But she still understands that she should sign it.

We sit together and enjoy our cups of tea and I hand over the birthday card to my mother to give to Sue. My mother laughs and says thank you and begins to open it. Laughing, I remind her that it is Sue’s birthday, not hers. She laughs again. Then proceeds to open the card. I lean over and take the card from her.

“Mom, the card is for Sue. It’s her birthday today. Not yours.”

Mom takes the card from me and replies, “Of course, I know that.” But again, begins to open the card. (My goodness, this card is becoming worn now.)

Once again, I lean over to take the card. Finally, Sue interrupts us both and grabs the card herself and thanks Mom. My mother is still puzzled. Finally she wishes Sue a happy birthday! Hallelujah!

Minutes later, mom leans over and hugs me. “Happy Birthday, Marilyn.”

Oh, boy….we all laugh. Sue and I both thank Mom, in chorus.

These are the very times that are so wonderful and funny. But we didn’t always laugh during these “exasperating” moments. When our loved ones who have a dementia repeat themselves or repeat an action or ask a question (not once, not twice, but over and over, non-stop), our first reaction is puzzlement. Why is our parent doing this? After some time, our patience and confusion begins to turn into intolerance. Now we become annoyed; sometimes, resentful and angry. What really motivates our negative reactions?

I believe we react out of fear. Fear. Whether we are distressed, confused, stressed…the underlying emotion is fear.

When I cared for my father in their family home, I was anxious every day. I arrived about 8 am and stayed all day until my sister (who worked full-time) arrived after work. During those eight hours I stressed over everything…my father didn’t eat his breakfast (it’s my fault that he is losing weight); my mother sleeps all day – what is wrong with her?; my father is moving around upstairs…is he attempting to come down the stairs on his own?; my mother has an appointment with her physician, but she insists that I mustn’t breathe a word about my father’s health situation (just in case he is taken away from her); when I take her to her appointment, who will stay and care for my father?

The above is just a short synopsis of my daily routine and stresses. It should not be a surprise to anyone (especially caregivers) that my body could not keep up with the daily stress load. And I say this with complete love and forgiveness (for myself), that I subjected my body, mind and spirit to this daily stress because I lived in Fear! I could not (and did not) acknowledge my new reality which was that my father had Alzheimer’s and that my mother (in spite of her insistence that she could cope) clearly, could not!

The very simple fact is that I lived in fear, instead of labelling it “fear” and then dealing with it.

The Buddhist nun and prolific author, Pema Chodr0n, in When Things Fall Apart describes acknowledging our fear as if we are running from a monster (in a dream) and suddenly we stop, turn around and just face the monster. This metaphor describes fear as a monster perfectly.

At the risk of sounding trite, when we do not face our fears, the monster becomes bigger and bigger. For me, if I had acknowledged my emotions so that I could deal with them, I would have made better decisions.

I was running so fast that I ignored my mother’s symptoms, and I relinquished good decision-making.

If I had asked for help (which I did not because my mother insisted that she did not want any “outsiders” in her home) then I would have learned some important Alzheimer’s facts and management of the symptoms. I would have realized that Alzheimer’s can affect eating habits and I would have realized that many of the spouses of someone with a dementia-related disease ignore and avoid the diagnosis of Alzheimer’s; instead, many spouses “pretend” that nothing is wrong. I also would have understood that her resistance of physician appointments is often another symptom of the beginning stages of Alzheimer’s disease. (Many resist because deep down, they fear the diagnosis. They suspect something is wrong, but they are unable to face it.)

But because I did not ask for help, I did not learn that sun downing is a symptom of Alzheimer’s that prevents a good night’s sleep; I did not learn our mother was exhibiting some early signs of her own dementia and for that reason alone, I should not have followed her wishes.

Because I did not ask for help, I did not understand that my father was in the palliative stage long before I recognized that stage; and lastly, that all the love and kindness in the world was not going to heal my father.

I now understand (I get it!) that my family (my mother, my sister, my husband, our children, and myself) were grieving for our loss – long before our father actually died.

Grief walks with us the very moment that we hear the diagnosis and prognosis of Alzheimer’s or any dementia-related disease. We say good-bye repeatedly and that is why the experts have coined the phrase, “The Long Good-Bye” when they discuss the ramifications of the disease.

The person with Alzheimer’s or other dementia-related disease begins to change from the initial onset of the disease. Abilities that once were strengths diminish. (Our father used to excel at map reading or directions. In the earlier stages, he became confused in the grocery store. Later, the layout of his own home completely overwhelmed him.) Talents and passions disappear. Hobbies are discontinued. An avid book reader no longer reads. Someone who loved to spend time with the grandchildren shows disinterest in family gatherings. Often that person will shun family and friends.

In the later stages, our loved one with a dementia can no longer remember how to communicate, read, dress himself, etc. Many people are surprised when I tell them that Alzheimer’s affects the different parts of the brain, so that the simple act of sitting and watching TV is no longer possible. My mother rarely watches the TV because she cannot sit still. Often the images confuse and disturb her and that fuels her hallucinations, delusions and dreams. She cannot differentiate between reality and fantasy on television. I have noticed that other residents at the long-term care residence where my mother now resides “attach” themselves to a particularly sad or horrific news story and morph on it over and over. (Television should not be turned on unless the programs are monitored.)

When these symptoms appear, if you do not have any information about Alzheimer’s or dementia-related diseases, as family and as carers, we are frightened. And sad. There are few things worse than watching a loved one become child-like, dependent on others.

When we react with sadness to our loved one’s situation or circumstance, that is grief. Grief. We mourn for the past (what our loved one used to be) and we mourn for the present (what our loved one is now) and we mourn for the future (what will never be).

Both my sister and I have learned to recognize our grief and we have learned to “honour” it. But mostly we have learned how to let it go.

Each of us have our own unique ways of handling grief. Nature is our solace – for both of us. Sue visits the beach, kayaks and walks throughout the wetlands or forests.  I turn to my garden, bird watching or sit by the water. Any water. Thankfully we live in a wonderful city that boasts of a river and a lake! Water connects me to my stillness; my connection to my soul.

Often I grab my husband and pick up coffees (sometimes not in that order!) and we drive to the waterfront. There we sit and watch the water, talking and sipping our coffees. Other times, we sit in silence.

I go to Nature to be soothed and healed, and to have my senses put in tune once more…John Burroughs

What we have learned is that grief is an emotion that is constant during Alzheimer’s; but that recognition of it is the first step to healing. Then, give it its space. Space will honour it (and our loved one and ourself). This simple act will lead you to “letting go” of it. And lo and behold, peace takes its place.

Another gift! We have learned that the journey that has led us here (to the Now) makes us who we are today.

And we have learned that when our loved one changes before us (and yes, eventually dies), those changes do not change the essence of someone. Their soul is still there. We have learned to connect to their inner essence; and to let go of their outer shell.  That is what matters now.

We laugh and we enjoy the Now with our mother. The birthday card didn’t matter. Nor, my mother’s confusion over birthdays. That is the gift we give her when we spend time with her; it is the gift that she gives us when she spends time with us.

We have learned to connect to her essence, and that gives us peace.