Distance Caring

If you live across town, across the country, or across the world from someone who needs your help, here are ideas to bridge the distance. By Beatrice Hale

Caring at a distance involves two places: where you live, and where whoever needs your support lives. Ten to one these days you are living in another town, maybe even another country, and there is physical distance between you and the person who relies on you.

First things first for those of us caring at a distance: ourselves. Often we have to deal with guilt-inducing whispers from the past.

“Do you have to go away?”

“Shouldn’t you stick around?”

“I never left my parents; why are you leaving me?”

I call these the negatives of distance. Despite the fact that we are happy where we live, there may be residual guilt over having ‘left’.

Remember, just because you live in another location doesn’t mean you don’t care; it just means you have to be more creative about providing support for someone who is frail or needs assistance you can’t physically provide!

During my caring days, my Mum lived in Scotland, and I lived here in Dunedin.

Initially all Mum needed were regular phone calls (weekly when possible, sometimes several times a week, sometimes daily). I tried writing as well, but with letters it’s easy to disguise what’s really happening. Luckily my brother could visit Mum and fill her small fridge/freezer with food. He was also able to keep me up to date about Mum’s health, but he worked long hours and had a busy life of his own.

Over time, we found that my calls and his visits weren’t enough to fully support Mum.

I had kept in touch with a number of people who knew my mother and were willing to help, but as many were elderly themselves and didn’t drive, the support they could give to Mum was limited. Things improved as we built a network of all of the parties involved in our mother’s care: her doctor and practice nurse, staff from the home support agency, friends, neighbours, and local services. It took time, but having this ‘circle of care’ proved invaluable (even though Mum didn’t always appreciate the attention, which she regarded as interference).

Then there were my own feelings of privacy and loyalty to deal with, no doubt stemming from some denial, too. I didn’t want to acknowledge that my mother was so ill, so confused, and I didn’t like talking about her behind her back. Even though I tried to keep her informed, it felt like talking out of turn. But we all have to bypass these emotions if the health and wellbeing of a loved one is at stake. What you hear or find out has to be passed on if it can ensure better support for someone who needs extra help to live safely at home.

I always told my mother what I was doing, and knew that when I said “I think you need to see your doctor” or asked if she had recently seen her home support worker, she might accuse me of meddling. If she visited her doctor, at my request, she would often refute what I had told him, or perhaps forget what had been happening to spark my suggestion that she see the GP in the first place.

It became really important that the doctor heard both sides of the story: what I knew about her health and my concerns, versus my mother’s certainty that all was well. One example of the dual approach was The Food Story. Mother would tell the doctor what she ate, reciting menus from her long term memory of our old kitchen, when my father cooked at the small hotel they operated. It all sounded wonderful, but none of it was true. She ate nothing but cornflakes and bananas if a cooked meal wasn’t available! A nurse once told Mum that we can get all the nutrition we need from cornflakes and bananas. That may be true, but how boring for three meals a day, seven days a week (if indeed Mum did eat cornflakes and bananas regularly; I had my doubts)!

So the doctor was told very clearly that her nutritional stories were memories, and that I felt she wasn’t eating enough.

When to ‘interfere’

I tried to assess my mother’s condition during our phone calls. Was she confused? Was she aware of time? Had she called me by name or just said hello? Had she given relevant information about her activities, outings, visitors, the weather? It was like a detective story, hunting for clues of wellbeing (or the opposite).

When it became clear that Mum was confused about the time of day and couldn’t recall when she had last eaten, I acted. My brother had filled her freezer with meals, but she wasn’t eating them. So I rang the local Meals On Wheels service, told the doctor I had done so, and arranged for regular deliveries, asking the service to send the bills to my brother, as we had agreed.

Our mother was furious and refused at first to touch the meals. But I had foreseen this problem! I asked one of her sisters to call in and check the meals, which she said were delicious, and that Mum was enjoying them. This action solved the problem of nutrition for the time being.

Next, it sounded as if my mother needed some help at home, so I rang the local support agency and asked if services were available for Mum so she could ‘age in place’ safely and comfortably. Then I rang the GP and Mum’s community social worker, and organised a home help referral. This worked fast, and was one of the best things that happened.

Rose, Mum’s support worker, sounded happy, steady, and knowledgeable. Soon my mother was saying “she’s like a daughter to me”. Ouch! But so what? At least my mother was being properly supported, and we had a new ally.

While visiting Mum, I booked an appointment to meet her doctor, the practice nurse, and their receptionist in person. I was able to introduce myself, give them my address and phone number (now it would be email), and discuss the logistics of communicating about Mum’s health and ongoing support needs. We agreed that I would phone regularly for updates, and Mum confirmed that I had her permission to speak directly to the GP. I also asked the practice to formally record this permission in Mum’s notes, so any change in personnel would not disrupt the arrangement.

From earlier phone calls, I knew that my mother was having difficulty getting into and out of her chair and bed, so I got in touch with the community occupational therapists, who fitted her chair with raisers, and also installed a raised seat in the toilet and a bed pole by her bed. I would love to say that my mother was grateful (and she did appreciate the raisers on the chair), but as for the rest, did I really think she wasn’t coping?

Well, actually, yes!

You’ll find that most people are keen to help once they know you are providing care from a distance. In return, it’s good to show appreciation for their patience and assistance. I made a point of thanking Mum’s supporters every time I phoned. I sent interesting cards from New Zealand, highlighting particular Kiwi icons such as Rotorua, and the beaches, and the albatrosses. For the constant visitors, I made sure to send small gifts and letters, nurturing these relationships which, like all others, thrive on a bit of attention. And for Rose, her support worker, I enjoyed sending slightly larger gifts!

Formal care

When the time came for formal care, I phoned and wrote to our chosen care facility to introduce myself. They already had my name and address as next of kin. I continued my weekly phone calls to Mum, and always made sure I asked the staff if I could talk to them first. I mentioned things that she’d said she’d enjoyed, such as the jigsaw table and the food. Probably the staff would have been just as helpful if I hadn’t taken the time to give any feedback. As it was, they kept me well informed about Mum’s health and mental condition, and about her activities in the home.

Mum was convinced I was the cook in the home and that my sister-in-law was the gardener, so she felt very much like a hostess, and this delighted her!

Paperwork

You may have dealt with this already; if not, it’s important. My brother and I organised Powers of Attorney so he could manage my mother’s care, property, and finances, with my full support. Once these arrangements are in place, you can rest easy knowing that someone else you trust will take care of the practical details, without losing any of the personal care, love and attention which matter so much.

Work and care

Most of those supporting others from a distance are employed, so it’s a good idea to check whether your workplace is carer friendly (many are now). If your boss or human resources manager knows that you are supporting a frail, ill, or disabled person (albeit at a distance), they can offer practical assistance if and when it’s needed. Small concessions from an employer will make such a difference to any working person who has caring responsibilities.

Common ways of supporting carers at tricky times include allowing time off during the day to make or receive phone calls, or being open to other flexible work or leave arrangements.

It pays to be honest with your employer if you find yourself providing more support for a friend or family member, and think you may need flexibility in the future. Don’t wait until there is an emergency, as this will add stress for you and for your employer.

Your wellbeing

Caring at a distance isn’t easy. It has none of the difficulties of hands-on caring, but it does have its own issues: sharing family troubles, maintaining loyalty and privacy, the need to research and coordinate local supports (how useful the internet is for removing geographical barriers and quickly finding sources of help).

And it may take time to clarify your right to be involved, if you don’t live nearby, with medical professionals and other supporters.

Then there is the gut-wrenching feeling of not being there, and worrying if someone you care about is completely reliant on the support and kindness of ‘strangers’.

You’ll overcome these hurdles in the best way possible, as we all do: by keeping in touch, and by doing all you can.

Do’s and Don’ts

Ways to support someone who doesn’t live nearby

• Include your friend or family member in all discussions and decisions. Losing independence is a common concern for older people and those who have significant support needs. Be sensitive; after all, you’re there to support, not take over.
• Gather information. Have a family meeting to talk about what help is needed now, and what kinds of help might be needed in the future. Decide who in the family will do what, with permission from the person who requires support.
• Organise a network. Identify family, friends, clergy, support workers and their agencies (if any), neighbours, community organisations, and others who might help. If you can’t reach your family member, calling these people can ease your mind. Let them know how to reach you and that you welcome their calls or emails any time. Some may also be willing to help with tasks your family member can’t easily manage.
• Check out useful community supports. These might include meals or transportation, needs assessment, respite, home support, recreation programmes or activities, the free St John Caring Caller or Age Concern visitor services, shuttle transport services, and so on.
• Review important documents. Do this with your family member and keep them all in one place: birth certificate, IRD number and latest tax return, health care numbers, up-to-date medications list, marriage/divorce decrees, insurance and other policies, superannuation and Work and Income information, and copies of Wills and Enduring Powers of Attorney.
• Offer practical help. How can you assist with home, garden, and vehicle maintenance? Can you offer impartial assistance with finance, i.e. helping to establish automatic bill payments and online banking? From a distance, can you coordinate meals, outings, and a roster of visits from old friends?
• Make yourself available. Or, if you are not the primary caregiver, be available to that person. The purpose of visits, when possible, is to renew and reshape your relationship and to provide the more involved carer (if someone has this role) with time out.
• Make the most of visits. Review home safety each time you visit: lighting, locks, fall risks, access to the telephone. Schedule and attend medical appointments when you are in town if your friend or family member doesn’t mind. Would a one-touch medical alarm give them and you peace of mind?
• Check out offers. Review charges for internet connections and mobile and land line phones. Then you can call or chat online any time without worrying about costs. Setting up Skype is a way to spend time together face to face via the internet, and it’s free.
• Anticipate future needs. Openly discuss ‘what ifs’. What if health needs change and it becomes necessary to move to another house … a residential facility … a private hospital? What if more help is needed around the house and garden? Talking about the what ifs will ensure that everyone is clear about what might need to happen in different situations down the road.
• Re-evaluate. Assess things as needs change, and make adjustments as you go.
• Friends and allies. Ensure you have phone and/or email contact with those who make regular support visits. I asked my mother’s support worker to make sure she ate her Meals On Wheels, and was prepared to pay extra for that service. Be mindful that support workers might want to do more, but may not be permitted to; there is a tension between care and compassion and employment boundaries. If you want to show appreciation for a support worker, check with their employing agency (if any) about what is acceptable as a gift.
• Security. Who has a key to the front door? Does this person pass it to anyone else? Does it go back to the agency between support worker visits? Ensure there are clear rules for security and access, so safety and privacy are protected.
• Boundaries. Don’t expect support workers and other professionals to give you their private contact details if they are employed by an agency. If you want a support worker to carry out extra tasks, check with their employer (if any) and offer to pay. Don’t expect support workers to shop for your friend or family member unless this is part of their role, or to be responsible for financial transactions. Also, don’t expect supporters to provide transport for medical visits, outings, or shopping unless this is formally agreed, or ask the agency if you can pay for this service if alternative transport isn’t available.
• Grey areas. Lines can get blurred when support is provided at home, but be aware this is a formal arrangement with rules and regulations. It’s good for everyone to be friendly, but you wouldn’t want to put a kind support worker into an awkward position!