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.

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