journeyman

True friendship

journeyman

I don’t enjoy boxing. I have never understood why anyone would pay money to watch a couple of people intentionally beat each other up. So, on a recent flight, I wouldn’t have chosen to watch Journeyman – a film about a boxer – had it not been one of the top-five movies recommended by the Emirates entertainment channel. Now I’m glad I did.

Journeyman is written and directed by Paddy Considine, who also stars in the leading role as middleweight boxing champion Matty Burton. The programme notes summarise the action:

As he approaches the end of his career [Matty] knows that he must make his money and get out of the game, to secure a home and future with his wife and baby daughter. After a titanic fight … Matty collapses on his living room floor, a delayed reaction to a devastating punch. Awaking from the coma, the real fight begins. Suffering from memory loss and with his personality altered, Matty must begin to piece his life back together as his world disintegrates.

Dementia is not just a condition affecting the elderly. It can also follow a traumatic brain injury (TBI) caused by a blow to the head. Recent research conducted in Denmark revealed that the overall risk of dementia in individuals with a history of TBI was 24 percent higher than those without a history of TBI. A single severe TBI could increase the risk by as much as 35 percent. Suffering a brain injury in your 20s can increase your risk of developing dementia in your 50s by 60 percent. It’s therefore not surprising that there is a category of dementia known as ‘dementia pugilistica’ (boxer’s dementia).

But that’s not the point of this story.

The movie provides a poignant insight into the life-changing impacts of TBI on the patient, their family members and friends. Initially, Matty’s boxing friends desert him. They just don’t know how to relate to him as a physically broken man who can’t remember their names. Matty’s wife Emma (Jodie Whittaker) steps into the role of full-time care partner, but she eventually leaves him as his unpredictable and sometimes violent behaviour threatens her safety and that of their baby.

A crisis causes Matty’s friends to realise the extent of his need for support. What follows is a moving tale of friendship and solidarity – of buddies who accompany and encourage Matty on his long journey toward rehabilitation and the restoration of his most treasured relationships.

If you get the chance, watch it.

Dementia can cause strong emotional reactions in the care partner

Transforming the Dementia Journey

Dementia can cause strong emotional reactions in the care partner

Dementia can cause strong emotional reactions in the care partner

“When we are unable to change a situation, we are challenged to change ourselves.” Viktor Frankl

When people are diagnosed with Alzheimer’s disease, or any other form of dementia, they and their care partners embark on a long journey of loss. We tend to focus on the losses experienced by the person with dementia – the deep forgetfulness, and the inability to cope with the activities of daily living. But care partners experience huge losses too – of companionship, conversation, support, security, and the comforting familiarity of the one they love who seems to be disappearing.

Dementia is a hard, hard journey. Researchers at UCL, London’s Global University, found that about 40% of family members caring for a person with dementia developed anxiety or depression, which often led to burnout, ill health, and a breakdown in care for that person.

They investigated people’s coping strategies and discovered, to their surprise, that care partners who coped best with the dementia journey were not necessarily the best problem-solvers. Rather, they were the people with the emotional capacity to accept the situation and find ways to manage it. The researchers also identified dysfunctional coping strategies, which included resistance, annoyance and avoidance, including substance abuse.

When you think about it, this finding makes sense. For the most part[1], dementia is not a condition that can be cured, so dementia itself is not a problem to be solved. Of course, there are numerous practical problems to be solved along the dementia journey, and a problem-solving attitude is very helpful. But the core competency in dementia support is emotional resilience.

Dementia demands of the care partner considerable acceptance, equanimity and emotional maturity. If we have not yet developed these qualities, but are willing to accept the invitation, caring for a loved one with dementia is the ultimate crash-course in emotional self-regulation!

So, how do we build emotional resilience for the dementia journey? What are the attitudes, practices and habits in your life that help you to feel centred, to release the burden of stress, and to overcome setbacks?

I am in the process of developing an on-line course that will focus on demystifying dementia, developing emotional resilience, and finding practical ways to connect with and honour a loved one who is living with dementia. If you would like to be kept informed, please send me an email and I’ll let you know when we’re ready to roll!

 

[1] Dr Dale Bredesen’s ReCODE protocol offers some hope, but requires strict adherence to a highly personalised therapeutic programme.

Share opportunities to care by drawing up a roster of visits from friends and family

Keeping connected as caregivers

Share opportunities to care by drawing up a roster of visits from friends and family

Share opportunities to care by drawing up a roster of visits from friends and family

This disease is isolating. Friends recede, family members back away.  – Support group member.

I belong to a number of on-line dementia support groups. Recently I posted a comment about research that shows that connection to community is the most important factor influencing our health – even more than a healthy diet, exercise or not smoking.

I wasn’t prepared for the reaction! My post was the proverbial last straw for a number of exhausted caregivers. Whether caring for a partner 24/7, or juggling responsibilities for children, work and frail parents, many people commented that they just couldn’t find the energy, respite, or hours in the day to keep connected to friends and to their communities.

To illustrate this challenge, one support group member described an average day: Work 8-5, Monday to Friday. Come home, make dinner, clean, clean her and get her to bed, laundry, clean, log in to support group, bed at 11 and start all over. No calls from friends, no drop-by’s, can’t meet up after work. Stay social? Yeah, right!

Here are some reasons why caregivers said they had become isolated:

  • There’s a big stigma around dementia; friends don’t want to visit because they don’t know how to relate to my loved one any more.
  • My partner with dementia has become very jealous. He doesn’t want visitors and he doesn’t even like me talking on the phone.
  • It’s time-consuming and stressful to organise social engagements. Some friends are also caring full-time for their parents and don’t have time; others don’t understand that if an emergency happens I’ll have to cancel at short notice.
  • Some family members keep their distance and are unwilling to get involved; they have no idea how demanding it is to be a full-time caregiver, but they criticise me from afar. This is both unhelpful and deeply offensive.
  • Some of us don’t like delegating or asking for help, so we end up training others not to offer their assistance.

One person observed: This isolation is a twofold problem. First, you need the socialization daily to stay healthy, but second, when your loved one passes, if you have not nurtured your network of friendships, you may find it has evaporated.

How can caregivers keep connected to friends and community?

When full-time caregivers are unable to take a break, their physical and emotional health can suffer. We need to stop trying to do it all and get help.

Here are some suggestions from the online groups:

  • Look for resources in your area that will help you manage some tasks so that you can take a break.
  • Join an online and/or face-to-face support group and share ideas and encouragement with others who are also caring for a loved one with dementia.
  • Find out if there are day care centres or social groups in your area that accommodate people with dementia and their care partners. Socialise with people who understand.
  • Caregiving is a team effort, so get good at delegating. Sit down with your family and close friends and figure out how each person can contribute to caring, visiting, housekeeping and financial or administrative tasks. Choose something you enjoy doing.
  • Draw up a roster of regular visits from friends and family members who live nearby. Those who live further away can pay a professional carer to relieve the person who provides daily care. They can also spend a holiday with their loved one and allow the regular carer to take a longer break.

If you are the friend of a caregiver, learn how to communicate with their loved one who has dementia. Then offer to spend a couple of hours a week with the person – and mean it! Enable your friend to get out and have some fun, or visit them together for tea, and pick up clues for helpful jobs or treats you could offer.

Community connections are vital for our health. Let’s strive to reduce the stigma associated with dementia and to create Dementia Friendly Communities where both people with dementia and their caregivers are welcomed.

 

 

 

 

 

 

Bill and Mum Skyping John in London

connection – the silver lining

Bill and Mum Skyping John in London

Bill and Mum Skyping John in London

When our mum got dementia, my sister Kathy lived in the same town in South Africa, I lived about 50 km away, and our brothers Bill and John lived in Nepal and the UK respectively. In our globalised world, far-flung families are commonplace.

In the early stages of dementia, Mum continued travelling to the UK to visit John and her sister. But after a few years, it became clear that international travel was just too confusing for her.

It’s easy to focus on the losses that dementia brings … of independence, adventure, and connection with the extended family. But looking back, Mum’s growing dependence and vulnerability also created new opportunities.

The greatest blessing resulting from Mum’s inability to travel was an annual visit from Bill and John. Mum was a magnet who drew her children to herself, and we all benefited from the opportunity to get together far more regularly than we would otherwise have done.

A parent’s vulnerability gives members of the family the opportunity to offer a bouquet of care made up of their individual – and often complementary – gifts, abilities and resources. The person who lives closest may be most involved in day-to-day practical support; while one who lives overseas may be able to contribute more financially, and give more concentrated time and attention when they do visit.

I remember two things that my brothers did to remind Mum of their love while they were away. When Bill visited from Nepal, he would bring an album of annotated photographs to share with Mum, and leave it with her so that Kathy and I could reminisce with her. John established a standing order with the local florist, who delivered a bunch of mixed flowers every fortnight with a cheerful message from John on the card. Mum was always delighted when the new flowers arrived!

Every two weeks, Mum received a bunch of flowers from John

Every two weeks, Mum received a bunch of flowers from John

Four years before Mum passed away, she moved to a specialised dementia care home called Livewell. The flexibility and responsiveness of the staff enhanced the whole family’s experience of Mum’s last years. We truly felt ‘at home’, being able to gather as a family at the home to share meals or celebrate special days.

The home embraced communications technology, providing opportunities for Mum to communicate with Bill and John via Skype. They also communicated regularly with the whole family by email, keeping us all informed and involved, even at a distance.

One of the gifts of caring for Mum during her 15-year dementia journey was that it drew us together as a family. Strangely, even the dark cloud of dementia can have a silver lining.

brain healthy foods 3

Food for thought … Making brain-healthy choices

brain healthy foods 3

If you want to get people disagreeing, start talking about diets! From vegan to paleo and beyond, we can justify a confusing diversity of eating plans. So, as I write this blog about brain-friendly nutrition, I know that it won’t please everyone … and in a couple of years’ time, I might even want to change a few things myself!

Dr Dale Bredesen, author of the book The End of Alzheimer’s, recognises three main types of Alzheimer’s disease, which relate to what he considers to be the biochemical triggers of the condition, namely:

  • Chronic inflammation from infections and diet;
  • Shortage of supportive nutrients and hormones; and
  • Toxic substances, such as heavy metals and biological toxins.

Dr Bredesen has developed a comprehensive protocol called ReCODE for reducing the risk of Alzheimer’s disease. It includes dietary choices that reduce inflammation, provide nutritional support, and eliminate toxins in the diet.

Here is a brief summary of his dietary recommendations from The End of Alzheimer’s.

Green-light foods – eat often:

  • Wild-caught fish – salmon, mackerel, anchovies, sardines, herring
  • Free-range eggs
  • Cruciferous vegetables – broccoli, cauliflower, Brussels sprouts
  • Leafy green vegetables – spinach, kale, lettuce
  • Sulphur-containing vegetables – onions, garlic
  • Mushrooms
  • Resistant starches – sweet potatoes, swedes, parsnips, green bananas
  • Probiotic foods – sauerkraut, kimchi
  • Prebiotic foods – Leeks, onions, garlic, asparagus, dandelion greens
  • Herbal teas, green tea, black tea

Yellow-light foods – eat less often

  • Free-range chicken
  • Free-range beef
  • Starchy vegetables – potatoes, corn, peas, squash
  • Legumes – peas, beans
  • Nightshade vegetables – tomatoes, peppers, brinjals
  • Non-tropical low glycaemic index fruits – berries
  • Wine
  • Coffee

Red-light foods – avoid if possible

  • Processed foods – avoid packaged foods with lists of ingredients!
  • High-mercury fish – tuna, swordfish, shark
  • Dairy – have cheese, raw milk, plain yoghurt occasionally
  • Fruits with high glycaemic index – pineapple, mango, pawpaw, grapes, dried & canned fruit
  • Sugar
  • Simple carbohydrates – bread, pasta, rice, biscuits, cakes, sweets, cooldrinks
  • Grains
  • Gluten

In addition to Dr Bredesen’s list, other authors recommend bone broth, nuts, avocados, celery, olive oil, coconut oil, dark chocolate, pomegranate juice, turmeric, and rosemary. They warn against trans-fats, seed oils like sunflower and canola, artificial sweeteners, preservatives and MSG.

The beauty of this list is that what’s good for your brain is good for the whole body.

When we eat nutrient-dense foods, and avoid foods that cause inflammation or contain heavy metals, we nourish the body and allow it to heal. Healthy eating is one of the most important things we can do to avoid developing chronic diseases, auto-immune conditions, and even mental health challenges like dementia.

brain healthy foods 2

A daily dose of Nature does us good!

Healthy by nature

A daily dose of Nature does us good!

A daily dose of Nature does us good!

It is common knowledge that spending time outdoors is good for our physical and mental health, and yet many people with dementia live most of their lives indoors.

Activities like walking, swimming and games develop physical fitness, stamina, strength and balance. Exercise improves a person’s mobility and reduces the risk of falls. It also stimulates the appetite, which often declines with dementia, leading to people becoming malnourished.

Fresh air really is good for us! Indoor air is often laden with chemicals from paint, furnishings and cleaning materials, as well as ‘germs’ like viruses and bacteria. Furthermore, the value of a daily dose of sunlight should not be underestimated. Sun on the skin stimulates the production of Vitamin D, which is vital for all our cells, and essential to building healthy bones and muscles.

Insomnia is a problem amongst many older people; but being exposed to morning sunlight re-sets our body clock, improving sleep patterns. So, rather than administering sleeping tablets, a morning walk may help to restore our elders’ natural sleep-wake rhythms.

The outdoors is not only good for our physical health; it benefits us mentally and emotionally as well. As dementia erodes a person’s thinking processes, they often become more emotionally sensitive and spontaneous. Being unable to tell others what they want or don’t want, people with dementia may become frustrated at not being understood, resulting in uncharacteristic outbursts or aggression.

Spending time in nature has been shown to improve a person’s mood. In one scientific study, people with dementia who spent time outdoors reported that they felt happy, calm, relaxed and free, and less depressed, anxious and stressed. This in turn resulted in fewer challenging behaviours like agitation, sun-downing, pacing, exit-seeking, and aggression.

There is growing concern about the use of neuro-psychiatric drugs to treat people with dementia. In most cases, ‘difficult behaviours’ are reactions to not having needs met. People may be trying to communicate that they are experiencing pain, discomfort, frustration or boredom; but instead of their needs being responded to, they are given drugs to pacify or restrain them. All drugs have side-effects, and these can be particularly devastating in the case of frail elders. Anti-psychotics and benzodiazepines, for example, are known to increase the risk of falls, and may even worsen cognitive function in people with dementia.

There is growing interest in non-pharmacological treatments of mood and behavioural issues in people with dementia. In one study, residents of a dementia care home who had access to the garden reduced their need for antidepressants and antipsychotics, and this resulted in a 30% decrease in the number and severity of falls.

Results like this are really encouraging – and not only for people with dementia. Let’s all get outside and enjoy a daily dose of Nature’s healing power!

Reading this book marked a turning point in my journey with Mum

Contented dementia – such a helpful book

During the early years of Mum’s dementia, I knew nothing about Alzheimer’s Disease. And, to be honest, I didn’t want to know. Denial is a common response to bad news.

By the time I stumbled upon the book Contented Dementia in a local bookstore, I really needed help. My usual ways of communicating with Mum were just not working. The more frustrated I became, the more stress and confusion Mum experienced.

Reading this book marked a turning point in my journey with Mum

Reading this book marked a turning point in my journey with Mum

Holocaust survivor Viktor Frankl once said that, “When we are unable to change a situation, we are challenged to change ourselves.” Mum’s short-term memory was failing. I simply had to accept the changes and adjust my expectations and communication style to suit her reality.

In Contented Dementia, Oliver James shares a method of dementia care that his mother-in-law Penny Garner developed while looking after her mother. Penny has a very special gift of observation, and developed her method by paying close attention to what caused her mother to feel calm or distressed. After her mother died, Penny went on to work with many more people with dementia, and eventually trained numerous carers in her SPECAL method (Specialised Early Care for Alzheimer’s).

Reading Penny’s story became a turning point for me in Mum’s dementia journey. I learnt two vital lessons. Firstly, don’t ask questions, and secondly, never contradict!

  1. Don’t ask questions: So much of our small talk is based on asking questions: “How was your week? Did you hear the news this morning? What did you have for breakfast? Where would you like to go for coffee?” But these questions are very troubling for a person with dementia. When your short-term memory isn’t working, these questions become confusing – even threatening – reminding you of things you can’t remember.
  2. Never contradict: Most of us believe that it’s important to ‘tell the truth’. So, when a person with dementia starts talking about people and experiences from their past as if they were in the present, it’s natural to want to correct them. But this is pointless. As short-term memory fades, older memories become far more real. It’s much better to allow time to warp and encourage our loved ones to enjoy their reminiscences than to upset them by insisting on accuracy.

Making these two changes made a huge difference in my relationship with Mum. I’m so grateful to Penny for sharing her wisdom – the fruits of her loving relationship with her mother and her ability to pay such close attention.

Jeff and Mum

Mum recording1

Sharing our gifts

Music was Mum’s greatest gift. Author Malcolm Gladwell maintains that ten thousand hours of practice are necessary to achieve mastery in a field. As a student, concert pianist and music teacher Mum had rehearsed and performed for many more hours than that. Music-making was hard-wired into her whole being – from her brain, to her heart and soul, to her fingers and toes.

A few years before Mum was diagnosed with dementia, she moved to a retirement village. Her grand piano went with her, gracing the communal lounge. Every Friday night was the ‘Celtic Evening’. Mum would play requests and residents would belt out traditional songs, well-oiled by each one’s preferred tipple.

The family bought Mum an upright piano so that she could practise in her flat. Even after she was diagnosed with dementia, Mum continued to share her gift of music, accompanying a retired opera singer who came to her flat to rehearse, and teaching her grandson to play the piano. Dementia didn’t prevent her from producing a CD of 16 piano pieces as a wedding gift for her son Bill and his wife Janet. Sitting next to her on the piano stool during the recording session, I was amazed by her technical accuracy and emotional sensitivity.

Mum recording1

Mum’s grand piano moved with her to the dementia care home where she lived for the last four years of her life. Almost every day Mum would spontaneously sit down at the piano in the lounge and play, continuing to share her gift with those around her. Over the years, she forgot most of her classical pieces, but she never forgot how to create harmonious music. Mum gave her final ‘recital’ just two weeks before she passed away.

Our gifts become blessings when they are shared. Those who receive the gift are blessed. And the giver is also blessed as they receive appreciation, acknowledgement and affirmation.

What gifts does your loved one with dementia have to share? And what opportunities exist for them to share their gifts, and be acknowledged and affirmed for their uniqueness?

Mum recording6

Erosion had revealed two heart-shaped quartz crystals that had been hidden in the rock

Dementia … a process of erosion

When a loved one is diagnosed with dementia, it’s natural to focus on the many aspects of their life and yours that are being lost. Indeed, the dementia journey can feel like a long process of erosion.

In Alzheimer’s Disease, the part of the brain that allows us to convert experiences into memory is affected first. Brain cells shrink and die. As they disconnect from one another they can no longer create the connections that allow memories to be stored. This results in the loss of short-term memory.

Damage to nerve cells in other parts of the brain results in further losses. Eventually a loved one may be unable to go to work, make a cup of coffee, recognise family members, ask for what they need, speak, or feed themselves.

As a care partner, the changes caused by dementia affect many aspects of the life you once knew and your plans for the future. Precious aspects of your relationship are lost, like conversation, support and security.

Because many people find it hard to relate to a person with dementia, some of your friends may disappear too. And as society tends to recognise people because of what they do, rather than just because they are precious human be-ings, dementia may also result in a loss of recognition and respect.

Erosion had revealed two heart-shaped quartz crystals that had been hidden in the rock

Erosion revealed two heart-shaped quartz crystals that had been hidden within the rock

While walking on the mountain a few weeks after my mum died, I sat on a rock to admire the view. As I looked down, I noticed two heart-shaped quartz crystals embedded in the rock.

The message to me was clear:

Dementia is like a process of erosion. Over time, a solid rock may wear away and crumble into sand. But that is not the full story, because that same process of erosion may reveal a beautiful crystal hidden in the heart of the rock.

It takes courage to embark on this journey of loss. But many care partners have discovered that dementia can also become a journey of love.

Dementia strips away much that is superficial in our lives. It reveals aspects of our loved ones and ourselves that were previously hidden from view. It destroys the myth of independence, and invites us to connect with our loved one more deeply than we had ever imagined possible.

Mum's dear friends, June and Ray, visited her every week for tea

Don’t try to go it alone …

DC mindmap 6

I subscribe to a few dementia support groups on Facebook. These are safe, moderated, on-line spaces where people caring for their loved ones with dementia can share their stories, seek advice, and experience the solidarity of others who deeply appreciate what they are going through.

Many posts are from people who are almost single-handedly caring for a family member, and are experiencing what is known as compassion fatigue. They feel alone, unappreciated, burned out, resentful. The sense of overwhelm is palpable.

We know that “you can’t pour from an empty cup.” But how can you avoid becoming drained, especially if you can’t afford professional care? Here are some suggestions …

  1. Don’t try to go it alone

There are many reasons why a primary care partner might get find herself in a 24/7, 365 days-per-year commitment to caring for a loved one with dementia. From marriage vows and personal promises, to a deep sense of responsibility or a belief that nobody can do the job as well as you can, to a fear that asking for help might make you look less than competent – these and more reasons can stop you asking for help. But the truth is that you don’t have to do it all, you CAN ask for help, and it will be a lot better for you and your loved one if you share the responsibility with others.

  1. Stop trying to protect others

Ironically, we sometimes try to protect others from playing an active role in supporting a loved one with dementia, while burning out ourselves. Before asking for help, we assume that they are too busy, or don’t want to be involved, or that they won’t be able to cope with how the person is changing. And yet, none of that may be true – and we may be denying both parties precious opportunities for connection.

  1. Share what works with others

It’s time to get dementia out of the closet. It’s time to get rid of the stigma that disconnects people with dementia from the people, places and experiences that give their lives meaning. Let’s share with family members and friends how to communicate with a person with dementia, so that they can continue to play an active role in your loved one’s life.

Mum's dear friends, June and Ray, visited her every week for tea

Mum’s dear friends, June and Ray, visited her every week for tea

  1. Draw up a roster – and stick to it

When Mum was diagnosed with dementia, we drew up a roster of visits and activities to keep her stimulated and connected. Friends and family members visited regularly for a cup of tea, or to take her shopping, or out for a walk, or to her house church group. A driver fetched her for her regular hair and beautician appointments. This regular rhythm of appointments created structure in her life, and ensured that every day of the week, someone would be there to check that all was well.

  1. Make time to do things that bring you alive

Once you have established a roster, make it work for you too. Go for a long walk at the beach, meet a friend for coffee, go to a movie, take a dance class, have a nap, lie under a tree and read a book – whatever your body and soul are longing for.

Let’s all keep connected to life, love and meaning!