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Caring when serious or chronic illness strikes

When serious or chronic illness strikes, it can be difficult to know what to do to help. As family, friends, acquaintances and colleagues it is good to be able to share each others' burdens and to show love to one another. Sometimes that's extremely difficult though. Many people feel overwhelmed and unsure of how best to help. Practical things such as meals are a really easy but useful start, but there is so much more that can be done to help.

Illness can be long term

In our society we are conditioned to wish people well. "Have a nice day!" "Get better soon!" It is almost expected that people will recover quickly, however this is not always how peoples' illnesses will go. Illness can be long term, or even terminal. Long after you've forgotten that a person is sick, they may still be suffering either with the illness itself, or the after effects of it.

Caring for someone with a long-term or chronic illness is completely different to caring for someone with an acute illness. Acute illness can usually be dealt with in mostly practical ways: a meal or two delivered, some help with transport etc. It feels achievable, because once the illness has resolved, everyone can move on.

Chronic, serious or terminal illness often affects the sufferer much more deeply. Its not the simple inconvenience of the flu or a broken leg. It can affect many more aspects of the sufferer's life, including their sense of self: who they are, their purpose and their place in society. Terminal illness brings grief and preparation for death. You cannot fix these things simply by bringing around a meal.

Practical assistance

Practical things are often the easiest ones to spot, and the easiest to do something about. They can seem very unexciting, but they can be tremendously useful.

Do not be offended if any of your offers are refused. It may be that the person does not have a need for what you are offering. Keep in mind that some people find it difficult to accept help, even when it is desperately needed. I know that I would rather that our bathroom be filthy than have someone else be subjected to cleaning it for me (because it is one of my least favourite tasks)! Some people also desperately don't want to be a burden on others. This may be completely irrational, especially when others are offering their help, but remember that the sick person has to do a lot of adjusting too, and they may not have ever been in this situation before.

If there's anything I can do
Just saying, "If there's anything I can do to help, please just let me know," is actually a bit meaningless. This is because it does not give any indication of the level of commitment. It might be that the sufferer needs their children taken to and from school every day, which is a huge commitment. But it also may be that they just need a loaf of bread from the shops. Because the person has not volunteered any idea of what they are prepared to do, it is unlikely that the sufferer will take them up on the offer. A specific offer of help – "I'm just heading up to the shops. Can I get you anything from the supermarket or chemist?" – is more meaningful and is a real offer of help.

Offer to help, but ask what forms of help would be useful. The sick person may have some specific needs that you can help them with. If you can help with these things, then anything else is a bonus (or being realistic here, sometimes actually a nuisance!)

Meals
When you are sick, preparing healthy meals is sometimes difficult. Not only the preparation time needs to be taken into account, but also the shopping for the ingredients. And for wallets that are thinned by medical costs, even just one meal a week provided by someone else can make the difference.

Find out if there are any allergies that need to be accommodated or foods that the sick person or their family needs to avoid. Illness can necessitate dietary changes that may not be obvious to outsiders. Check dietary requirements each time you prepare a meal, as what was okay last time, may not be acceptable now. Also, remember that spaghetti bolognaise and lasagne are not the only meals that can be given. It can be helpful to provide a list of all the ingredients that were used in the meal, just to be safe.

If possible, keep additives and preservatives to a minimum in any food that you prepare. While the sick person may not specifically ask you to avoid these, it will probably be appreciated. Make every effort to provide nutritionally balanced, healthy meals. Healthy food is best for the body, especially during times of illness.

For those who take sandwiches to work or school, making lunches each day adds to a carer's busy morning schedule. If there is room in the family's freezer, can you provide a loaf full of the child/ren's or family's favourite sandwiches, individually wrapped, with ingredients listed, ready to freeze and then use as required?

Transport
Transport to and from doctor's appointments can be extremely helpful. Doctors aren't always conveniently located, or have appointments available at convenient times. It may be that the sufferer's carer is not available when the only or soonest appointment is available.

Plan it so that the person can be dropped off as close to the doctor's surgery as possible. If there is somewhere for them to sit while you park the car, this is excellent. Then assist them with getting to the waiting room. If you can, at the conclusion, pick them up from right outside the door. It is likely that after the effort of going to an appointment, they may appreciate as little walking as possible.

It may also be that another family member, who would normally be transported somewhere by the sufferer, needs assistance with transport. Maybe a child has regular piano or dance lessons. Maybe they need a lift to sporting practice and games, and maybe even someone to cheer them on. Lifts to and from school may also be appreciated. Even though school is five days a week, you don't have to commit to helping every day. However, even one trip per week is very likely to help out.

Cleaning and maintenance
There are numerous jobs that contribute to a well run home. Washing and wiping up, tidying, cleaning, washing clothes, ironing, sorting, vacuuming, dusting, lawn mowing, weeding, watering, washing cars, walking the dog, caring for pets etc. Sometimes a tidy house can contribute greatly to a person's sense of wellbeing. A tidy garden can bring immeasurably more pleasure than one might expect.

Shopping
Getting to the shops can be difficult for sick people. Can you offer to do their shopping for them, or can you take them to the shops they need to go to, and accompany them while they shop? Can you pick up a prescription for them, ensuring that you have the sufferer's signed authorisation on the prescription?

Entertainment
When you're stuck at home, the days can be long. TV is not the answer to everything, and nor should it be. Can you offer to lend books to read? Do you have any books that are on tape or CD that you can lend? While reading may be too much, listening to a book being read can be wonderful. Do you have music CDs that you can lend to the person to listen to? Or a good movie on video or DVD? If the sufferer is able to get out for a rare social excursion such as to the movies with their spouse, can you offer to babysit their children while they are out?

Finance
Where illness stops someone from earning their normal wage, it can have a large effect on the household, particularly if that person is the only or main breadwinner. Even if there is no reduction in the money coming into a household, with chronic or serious illness there is often an increase in the amount of money flowing out, due to medical costs.

Be aware that sufferers could be experiencing financial hardship, though they may not be. It may mean that they are less able to give to others, or have less money for social occasions, hobbies, or extra-curricular activities for their children.

A spare brain
Illness can do messy things with memories, and when attending medical appointments it can be helpful to have another person to ask useful questions, and to remember or write down what the practitioner says. If you are transporting someone to an appointment and you are close to the sufferer, they may ask you to accompany them into the appointment itself with them. Of course, all that is discussed should be treated in the strictest confidence. I often take an extra "brain" along with me to my appointments simply because I know that I can't always remember to ask the questions I need to, and it can be hard to retain or understand all that I am told.

There have been times while ill, that I have been required to make an urgent decision, and have recognised that in my illness, my brain cannot process such things. I have phoned others whom I trust, to ask them to think the situation through for me out loud and advise me. It may seem like a very unusual thing to be asked to do for someone, but it can be incredibly useful.

Spiritual support
If you are a person of faith, you will recognise that spiritual support is useful. Pray for the person who is sick. Pray for their family and friends. Pray for their financial situation. Pray for their mental and emotional health. Pray for their healing. Pray for wisdom for the health professionals who are treating them. Pray for all aspects of their lives. Ask them what they'd like you to pray for.

And if you pray for them regularly or even just once, please tell them that you have done so, or continue to do so. It is encouraging to know that someone cares enough that they are praying for you. Don't assume that if you tell their spouse that the message will be passed on. You may need to make the effort to tell the person directly, whether with a card, a phonecall or an email.

Offer faith books, CDs, DVDs etc. but do not be offended if they are refused. Personally, with my illness I know that when reading I can concentrate enough to read a novel or biography, but not non-fiction. As many faith books fit into the non-fiction category, I know that I do not currently have sufficient concentration or depth of thought processes to be able to read such books. I do love to listen to the weekly sermons downloadable from my church's website though.

If it is appropriate, share your spiritual walk with the sufferer. If you have bible verses that will encourage, share them. If you have things of recent interest in your own faith journey, share them so as to encourage the sick person in their own spiritual walk. Have you read, been pondering or been praying through something significant in your personal quiet times? As the person may not be up to reading, have you read a good faith-based book, that has themes and ideas that you can tell them about?

Keeping connections strong

One of the difficult aspects of serious and chronic illness is the sense of isolation it can bring, whether physical separation (not being able to go out or socialise) or emotional separation (feeling that others don't understand).

When faced with the prospect of visiting or contacting a sick person, sometimes people immediately internally protest, "but I wouldn't know what to say!" It doesn't have to be anything special – just say what you would normally say. Despite the fact I am unable to live what I consider to be my "normal" life, I still love to hear about what is happening in other people's lives. It helps me to see that life does go on! Tell me about your holiday, your latest success, your kids/grandkids, your hobbies... I'd love to hear about them! Maybe I need to talk with someone about how I'm feeling. All you'll need to do is listen and respond appropriately.

Phonecalls
Can you phone the person? If you want to do this regularly, ask them if there is a good time to do this, so that you avoid sleep times, or their bad period of the day. A phonecall can remind the person that others still remember that they exist.

If you phone, do not be surprised if the person does not answer the phone. They may be resting, sleeping, out in the backyard, at the doctors, or just escaping the house. They may also not feel emotionally up to answering the phone. If they have an answering machine, leave a message. If they don't call you back, please don't take it personally. It may be that they listen to the message then forget to return the call, or just can't cope with speaking to people. If you can never get hold of them, try another means of communication.

In some circumstances a close friend or relative may be appointed as the contact person through whom all communication is made. This decreases the burden on the sick person and their carer/s. Respect the sufferer's wishes and do not call them directly.

Email and texts
Can you email or text the person? If you are not sure when is a good time to phone, an email or text can be read and replied to when the sufferer is able. It does not break into their day in the same way that a phonecall does. It allows them to control their response. However, if you send an email and the person is very sick, they may not ever get the chance to turn their computer on. If they do read your email or text message, please be understanding if they are not up to replying. Even if they never reply, if they've read it, it will likely have been an encouragement to them.

Letters and cards
Don't send a "get well soon" card, unless you know that they are likely to get well soon. If it's a long term or terminal illness, wishing them a speedy recovery, though a nice sentiment, is not the best message. Something along the lines of "thinking of you" might be better.

For people of faith, I have heard people say that "I'm praying for you" is better than "I'm thinking of you". Personally, I think they are both an encouragement. I love to hear that people are praying for me. However, it is also lovely to know that in the busyness of other peoples' lives, they stop to spare a thought for me. If I know that they remember me, it helps me to feel cared for, connected to the outside world, and part of community.

Visits
Ask the person if they'd like to be visited. This may be too much for them, or it may be highly appreciated. Always phone to arrange the visit beforehand. It may take a lot of effort to be ready for a visitor, and catching them "as you just happened to be passing" is often less appreciated than no visit at all.

Don't stay too long. Don't feel obliged to bring food, flowers or gifts. Your presence is enough. Don't expect the person to serve you a drink or food – that may be beyond their capabilities. Don't bring anyone with you, unless you have checked that this will be ok. Sometimes one visitor at a time is all the sufferer can cope with.

If you arrange to bring your kids to play – this can be great for children or siblings of the sufferer – please pack away all toys or mess that has been made during the visit, before you leave. It isn't fair to make the sick person clean up after you. It can go some way to undoing all the pleasure that the visit itself brought.

Outings
Offer to take the person out. Being stuck at home can be frustrating. The sufferer may really appreciate being taken to a park to enjoy the peaceful surroundings, or to watch the happiness of children playing. They may appreciate a visit to a quiet coffee shop. They may just appreciate going on a drive. Plan your outing well though. Ensure that the sufferer does not need to walk far, and that there are toilets close by. If it is cold or very hot, indoors will probably be better than outdoors. Do not make the outing too long, and be sensitive to when the person has had enough. If you're not sure, ask them.

Being a good friend

A common paradox of serious or chronic illness is that sufferers often find that acquaintances and people they hardly know are more helpful and supportive than the sufferer's close friends. Maybe this is because the spectre of illness brings fear. Maybe the friends are having difficulty accepting the change in the sufferer. But for whatever reason, this happens all too often.

If you are the friend of someone who is suffering, your friend would really like your support. It's really difficult when the people who you think care for you, ignore you in your time of need. It exponentially adds to the sense of isolation.

Ask your friend how you can help them. Ask if meals, emails, phone calls, visits etc would help them. Whatever they need that you can help with, please do it. If you are a long distance from your friend, it is unlikely that you will be able to offer any practical assistance. You won't be able to DO anything, so instead, just BE: be a friend, as this is just as important.

Be aware of the possibility of depression. Long term and serious illness can easily be complicated by depression. The ill person may be wrestling with fear about the future, questions of identity, and general frustration with lack of progress. And keep in mind that it may not be only the sufferer who is susceptible to depression, but also their carer/s. Inform yourself about depression so that you know what to look for. If you recognise the symptoms of depression in them, encourage them to seek help from their doctor.

Keeping your mouth shut, and when to open it

If you do not have any experience with the illness, do not try to pretend you know what it is like. Instead of assuming, find out. Ask the person if they mind you asking what life is like for them. They may or may not feel comfortable telling you. If they choose to tell you, keep what they have told you in confidence. It is not your place to tell others. Use the information to help you understand and pray for that person, and to ask intelligent questions about their wellbeing. Do not use your new-found knowledge to talk to others about it unless you have the sufferer's permission, otherwise this is essentially spreading rumours, no matter how good your intentions may be.

If you know the ill person's official diagnosis, inform yourself about it. Read even just the Wikipedia entry for that illness. There may be a support association for that illness, with an informative website. Finding out about the illness will give you some understanding of what that person may be experiencing – though always remember that symptoms and situations can vary wildly. But once you have this information, there is no need to "diagnose" the person yourself. If you have theories or ideas about their illness or treatment, keep them to yourself. You are not their doctor, and they do not need your opinion.

If you think the sufferer has been sick an unnecessarily long time, so be it. Never tell the person to just get over it. Serious illness can take a long time to recover from, especially if there are multiple conditions. No doubt the person who is sick would have liked to have been better long before you decided that it was all dragging on a bit long. It is not your place to decide whether the person is a malingerer or a hypochondriac. You're not living in their body.

Making suggestions
Do not "helpfully" suggest any treatments/doctors/supplements/special diets/therapies that you, a friend or someone you know used for their illness. Others' situations will be completely different to that of the sufferer – even if it was the same illness. I don't even like to know how long other people who have had my condition had it for. I just don't want to know right now, because someone else's illness has no bearing on how mine will play out.

The only time that it is appropriate to suggest a doctor/supplement/therapy/diet etc. is if the person has specifically told you that they are looking for one. Please, think (and if you are a person of faith, pray) carefully about it first. Never push your suggestion upon them. Often when someone is seriously or chronically ill, people (admittedly with the best of intentions) automatically think that they must recommend the "miracle" treatment that helped them, regardless of differences in circumstances. It is therefore highly likely that everyone else has already suggested their own favourite doctor/ supplement/ therapy/ diet. For the sufferer and their carer, continually fobbing off these suggestions politely can be very tiresome. And let's face it, these things are never cheap...

Products you sell
If you sell the products you are suggesting, tread very carefully and do not forget that if the sufferer chooses to try the product, you will be profiting from their illness. Examine your motives to ensure that they are honourable and not self-serving. Don't let your enthusiasm for the product overrun their right to choose or refuse.

When you've been there
If you personally (or a close family member) have suffered or still do suffer from the same or a very similar illness, please do share it with the person who is ill. It can be a huge encouragement to the ill person to know that others have been there before them. I have had people tell me that they have suffered with the same illness as me, and while you wouldn't wish it on your worst enemy, to know that others have walked that path before you, and some even recovered, is a huge encouragement. But don't tell the sufferer the whole story of your illness, unless they ask. It may be that they are having trouble dealing with their own illness, and just don't need to hear the details about yours.

Offer for the sufferer to ring you with any questions or just to have chat. It is great to know that there are people out there who are prepared to listen and answer questions, and share their experiences with you – when asked.

Resuming previous activities
Suggestions by others about resuming previous activities must be carefully made. Ensure that the sufferer does not feel pressured to return to these activities before they are ready to. Encourage but do not push, overtly or indirectly. It can simply lead to resentment and a feeling of being misunderstood.

When people suggest to me that I could go back to my bible study group, because all it involves is sitting, it makes me feel that they have no understanding or sympathy for what I am experiencing. Bible study does not only involve sitting! It is a social activity that is draining. Many bible studies involve homework and the answering of questions that are currently beyond my capacities.

Understand that people will resume their previous activities if and when they are able to. Some encouragement might help, but pushing (whether it is intended or not) never does. The sufferer may also take their illness as an opportunity to seriously evaluate the activities they were previously involved in, and may never return to some of them, even on recovery.

Caring for the sufferer's family

Serious or chronic illness affects many more people than just the sufferer. Depending on their life situation, it can also affect their spouse, their children, their siblings and their parents. There is often someone who ends up being that person's primary carer. It could be a spouse, a child, a sibling, a close friend or a parent.

THE CARER NEEDS TO BE CARED FOR
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I cannot say this too many times. The carer or carers need to be cared for.

Okay, let's say Mary is seriously sick. She is house-bound, and can do only a little to care for herself, though she is usually able to manage through the day, without a constant carer. Mary's husband George goes to a regular social activity each week, but Mary is too sick to go. Many people ask how Mary is, and whether they can help her out in any way. They assure George that Mary is in their thoughts and prayers.

All these things are lovely and helpful. But... has anyone stopped to consider George?

When George gets up each morning, he assists his wife with her showering and making her breakfast. He tidies the house because he knows that a tidy house greatly contributes to Mary's mental wellbeing. He gets himself ready and goes off to work and puts in a long day at the office, in a high-stress environment. On the way home, he stops at the shops to get a few of the daily provisions they need. He returns home, and reheats a meal that was graciously provided by someone else. He asks Mary how she was during the day, thus sharing the emotional burden of her illness. They eat their meal together. Then he washes up, and tidies again. He pays a few bills and deals with the mail. He makes a few phone calls to organise for someone to take Mary to a doctor's appointment later in the week. He talks with Mary before going out to his weekly committee meeting. He comes home late and goes to bed, finding Mary already asleep.

George is essentially living two lives – he is caring for his wife, while also living his own life. Who is caring for him? How does anyone cope with living two lives for an extended period of time? Add dependent children, an elderly parent, or George's own medical condition to the mix, and you have a recipe for burnout.

The carer has to be cared for. When you see George, by all means, ask him how Mary is. But ask him how he is too. Offer to help HIM, not just Mary. Perhaps George could really do with a break. Can you offer to look after Mary while George has a break? Can you do some shopping to save him from doing it? Invite George along to your next social gathering, and if it would help, organise someone to be with Mary while George is out. If you're a person of faith, assure him that you are praying for HIM too, not just Mary.

Looking after the carer
Remember that when people get sick, friends often disappear. The carer's own support network may have simply evaporated. Carers do not need people who are essentially perfect strangers asking just once how they are, and thinking that will suffice. It does not suffice, and for a worn-down carer, it doesn't feel like care at all. The carer needs personal connections with the "outside world", which take time and effort.

Often the most helpful things are offers of taking a break with the carer e.g. seeing a movie, having a coffee, going on a bushwalk, playing a game of sport together etc. Don't verbally commit to doing something with/for the carer and then not follow through with it. False hope of respite is worse than no respite at all.

Talk with the carer about how they are going. Don't spend the whole time discussing the sufferer's illness – unless that's what the carer wants to talk about. Otherwise, talk about the carer themselves and other things entirely.

Those without a primary carer

Not everyone who becomes seriously or chronically ill has someone who can step into the role of carer. Many people live alone. Many do not have family close by. Single parents can find themselves in this situation. But all these people desperately need care and support. If you are a friend to a person like this, be the best friend you can be. This is a situation where everyone needs to pitch in together to help.

When children are involved

If there are any children involved in the situation, consider also how they might be doing. The person who is ill may have children, or if they are still a child themself, they may have siblings. Serious and chronic illness can be completely mystifying to children. Why is Mummy sick all the time? Why can't Daddy play soccer with me anymore? Why does Andrew always get so much of Mum and Dad's time – can't they see I have problems too? The child may be grieving the loss of "normal Mum", "normal Dad", or "normal sibling". They may be angry about having to miss their regular activities because there is no time or money for these things any more. They may be fearful that the parent or sibling might die and abandon them, whether or not that is likely to happen. They may be confused about why the person is ill, and worry that they could catch it. They may be frustrated that their parent or sibling isn't like other "normal" parents or siblings.

All children cope differently. Some children get angry. Some children become little helpers. Some focus on hugs and other physical expressions of care. Some withdraw completely, and become very quiet. Support the child/ren with love, care and time. If medical costs or the reduction of family income are eating up all the family finances, can a group chip in to pay for the child to continue their sporting, musical, creative, social etc activities? Can reliable people be organised on a roster to take the child/ren to and from these activities? Can you take a young child to the park to give the ill parent or sibling a break?

Conclusion

We were not designed to live our lives alone. It is within community that we need to love and care for each other. Let us endeavour to show love to others, whether they are in obvious need, like having a serious or chronic illness, or whether they appear to be just fine.

Copyright © Yvette Stanton, 2009. Revised 2011. All rights reserved.

 

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