The practice of taking action to preserve or improve one’s own health.
“autonomy in self-care and insulin administration”
The practice of taking an active role in protecting one’s own well-being and happiness, in particular during periods of stress.
“expressing oneself is an essential form of self-care”
Self Care when caring for a loved one who relies on you 24 hours a day is difficult.
Caring for someone, continuing to run a family, possibly working and trying to maintain a degree of normality for other family members, will leave you with very little time for yourself, unless you become highly organised. Use lists to give you a visual of what your options are and how best to organise them.
I was in my early thirties when my husband had a brain tumour removed in multiple operations. After each operation his mobility and his mental capacity diminished. We and had two young daughters under 7 years old. Trust me, I do understand in some small part how difficult it is to care for someone and I know that the quicker you make a plan to deal with things the faster your life will get back under control.
Here are some things I found to be helpful when dealing with my acquired brain Injury patient:
- This is real, it has happened to you, your life will never be the same as it was before.
- The sooner you accept the fact that it has happened the better able will you be to make plans to move forward with your new way of life.
- Give yourself time to be angry about what has happened, and to grieve about the loss of what was before.
- It may seem like it at the time, this is not the end of fun and happiness.
- Life will continue, just not as it was before.
- It is exhausting to care for anyone with a diminished or diminishing mental capacity, add to that the possible loss of motor skills that occurs in some cases of acquired brain injury and your stress levels are set to soar.
- Now, more than ever in your life, you are going to have to put yourself first even if that seems counter-intuitive.
- If you are healthy, getting enough sleep and in a healthy frame of mind you will be able to cope better with all the changes and trauma associated with your new, ongoing, situation.
Medical, Financial & Emotional Support
- Make a list of all the little things that concern you to discuss with the doctor and other allied health support workers whenever you visit them
- I found that by the time I had got my children organised, husband into the car and then out again when we got to the medical centre I was usually in a high state of stress and forgot to ask about the things that were troubling me at home
- Your health care team may include physiotherapy/speech therapy/rehabilitation/ chemotherapy etc. be sure that everyone knows what other therapies are being provided to ensure you get the best possible assistance available
- No matter how desperate the situation may appear to you, it really is worth taking note of advice from the health caregivers. Going through the motions with them will give you time to adjust.
Time is what you need to understand fully the situation you are in and what will work best for you all
- If you live in a country, like Australia, where financial assistance is available for carers, apply for assistance as soon as practically possible
- Offers of assistance from family and friends
- When your friends and family member offer you assistance it really is important that you accept it.
Offers of help are usually verbalised/texted to you or made as a comment on Facebook as ‘if there is anything I can do for you to help, please just ask’ – I strongly encourage you to follow up and ASK for things such as:
- Pick up children from school
- Play dates for children
- Sleepovers for children
- Do your grocery shopping
- Cook a meal you can freeze, your new job as a carer will not give you much time cook meals, and you will appreciate being able to take something already prepared from the freezer
- Come and help you with the housework
- Sorting out of new sleeping arrangements
- Rearranging furniture perhaps because of a wheelchair requirement that was not there before
- If one of your friends is a handyman, they may be able to install rails in the shower and bathroom to assist your patient
- Having a friend who is non-judgemental to vent to will be very important.
- If you do not feel comfortable talking to anyone in your circle of friends and family, please contact a support group such as LifeLine
Accepting Offers of Assistance
When someone you love has an acquired brain injury I have found that in the early stages people rush to contact you with offers of support.
- It is very important that, as soon as is practicable, you accept and put in place as much regular assistance as you are able to get
- You may find yourself in the strange position of being the comforter to your friends and family, rather than the other way around
- Generally, people have little experience in dealing with the trauma experienced when a friend or family member suffers an acquired brain injury
- You may find your friends and family members stay away because they don’t know what to say or how to act in the situation
- Or, worse, they come around and offer all sorts of assistance until they realise that any commitment they make will possibly need to be ongoing given the seriousness of the injury. The assistance is then withdrawn or you find they do not turn up to help you out as ‘promised’. It is possible that their own lives really do get in the way of their good intentions so t
ry nottake this personally
- I found that many of the people who were the most vocal in their offers of assistance tended to be lacking in follow through and the most surprising people stepped up to the plate with practical acts of kindness that stunned me
Thirty years ago, when my husband acquired his brain injury, there were no mobile phones or social media. Today we are spoilt with Social Media, FaceTime, Messenger Chat, WhatsApp, Skype and the like.
Take advantage of what you have at your fingertips.
When you are distressed or not in the mood so speak to anyone in person or on the phone, you may find it helpful to change the message on your phone to say something like thank you for your phone call, unfortunately I am unable to speak at the moment. Please don’t leave a message here as they are difficult for me to retrieve. I really would appreciate a text message from you and I will respond as soon as I can.
Try to respond to any text messages as soon as possible
Don’t feel obliged to phone everyone back – instead prepare a message that you can copy and paste into text messages. (Most devices have ‘notes’ or Word where you can compose a good response that you can share with everyone)
Writing out a ‘press release’ type statement that you can share with everyone will not only save you time but may also help spread the word amongst those close to you. It will also insure the information is accurate
If you are on Social Media perhaps you could make a Facebook Group. A friend made a Facebook Group page for my granddaughter when, at six months old, she developed AML Leukaemia. (I am happy to report that she is eight years in remission now)
The Facebook group was a private group of family and friends who cared about my daughter and her family.
A few hours after diagnosis my daughter, her husband and sick child were flown from Launceston, Tasmania to the Melbourne Children’s Hospital. Their three and a half-year-old son remained in my care. He had never spent a night away from his parents before. He had stayed at my house but always with one or both of his parents staying as well. It was a very stressful time indeed. My daughter was breast feeding, and so it was difficult for her to get a break from the baby’s bedside.
The Facebook group gave her a safe place to communicate with friends and family. (Security settings were checked regularly to ensure only her nearest and dearest could read the posts and, more importantly, I felt, she didn’t have to keep retelling the situation as it changed. She was able to maintain her friendships via chat and could ‘vent’ safely about things if she wanted to.The Facebook group gave an opportunity for friends to know what was happening and required by way of assistance, allowing them to send ‘Care Package’ to her family that was very well thought out and beneficial to all of them. People could not easily visit them due to the distance, cost of flights and the fact my granddaughter was often kept in a sterile situation with no contact with anyone other than her care team and parents and brother Facebook gives you the ability to keep your page secure, You can control who can see anything, post anything as well as keep your photos available only to be seen by whom you choose. You are also able to ‘block’ people from seeing or writing anything.
- Create a private Facebook Group and add all the friends and family members who have offered you assistance to the group. Be sure to keep the settings private so that only you and the other group members can see what is posted online
- Post updates on your patient’s condition and share those funny things that happen as that will keep people interested in assisting you
- Post information about appointments you need to attend with your patient so that your group is able to offer assistance at times that suit them e.g. Help – I am double booked and am hoping someone can help me. I need to get Bob to the doctor on Tuesday afternoon, but Sarah has swimming lessons at the same time. I am able to drop her off but unable to collect her afterwards as we may be delayed at the doctor’s rooms. Can anyone pick her up and look after her until we return, please? Upload a photo of Sarah Swimming to draw their attention to the post or a photo of something from your garden that you are offering as an enticement for assistance. Bunch of flowers/veggies/fruit/ homemade jam etc.
Personally I find Messenger to be the most efficient way of communicating. I prefer to communicate directly with each individual person and so use the copy and paste method of sharing information whenever I need to tell more than one person the same thing.
Messenger allows you to create Groups. It is very easy to set up a Messenger Group of people and then send one message to the group. Personally I found using the groups got confusing when having a group chat. I kept forgetting that I was not chatting or talking exclusively to the person I responded to and often went off on a tangent subject that should have been exclusive.
- It costs only data usage
- It often works with limited coverage, unlike text messages
- You can see when it has been read and therefore will be able to see when the other person has seen what you have written (be aware that this works in reverse, people who send you a message will also be able to see when you have received and read their message to you)
- You do not have to respond to a message as soon as you receive it which gives you time to reply in your own time and when you are ready to do so
- A quick ‘thumbs up’ icon or ‘can’t chat ATM (at the moment) is polite
- Messenger keeps a record of chat conversations which is helpful to be able to refer to
- If the other person is ‘Active’ you are usually able to get an instant response
Reassuring your patient reduces stress
If you have recently become a carer it is important to establish trust between yourself and your patient. Your patient may be confused and distressed, especially if you leave them unattended and alone.
Find a way to communicate to your patient so that they know you are there but that you also need to do chores or work undisturbed for specific times.
- No matter how practical it may seem, do not get a bell for the patient to ring to summons you, trust me on this one!
- An intercom system may work for you
- Advise patient of set times you will look in to check on them, and keep to them as that will reassure your patient that they will not be forgotten
- Organise something to be left that will show your patient you have been in the room whilst they were sleeping
- A soft toy seated in a particular way that your patient understands
- Write a note that shows you have been
- A whiteboard, blackboard, or notice board is helpful
- Flowers/chocolate or other treats, whatever works for you both
Taking care of Yourself
It is important that you maintain your own health in order for you to be able to cope with what has happened in your life
Eating healthy food is a ‘no brainer’ as binging on foods high in sugar tend to make you feel good for a short time, unfortunately the sugar low that follows does not
Drink lots of water, as overdoing the alcohol intake dehydrates your body and severely diminishes your ability to copeGetting enough sleep is often difficult. I found it to be the most difficult in the early stages when I was on call 24/7.
Speak to your doctor as there are sleeping tablets available that relax you enough to fall asleep and don’t make you feel drugged on those occasions when you have been woken
Use the Insomniac’s Alphabet Technique every single time you lie down for a snooze, rest or cat nap. This simple technique will distract you enough from the chaos in your day to switch off your brain and get some rest
A short period of rest or relief from something difficult or unpleasant.
“the refugee encampments will provide some respite from the suffering”
Synonyms: rest, break, creating space, interval, intermission, interlude, recess, lull, pause, time out, hiatus, halt, stop, stoppage, cessation, discontinuation, standstill”
Make sure you get respite for yourself and take a break away from your situation
- Depending on where you live, some organisations have respite centres or volunteers who will come and sit with the patient while you, the carer, get a break. It is possible you may have to pay someone to do this service; please do so as your health and well being if you do not get a regular break
- It is vital that you continue doing some of the activities you enjoyed before you became a carer
- Socialising with friends may continue but you also need to do this alone, and without the person, you are caring for
- In most relationships, people meet friends apart, without their partners to catch up over coffee, drinks, dinner etc. If you are caring for your partner, it is essential that you continue doing this and not feel any guilt because you wish to do so
- I would recommend that you schedule regular ‘ME TIME’ away. Anticipation for the time away may help you cope when things do not run as smoothly as you would like
- Catching up with friends and meeting new people who do not know your situation gives you a gloriously feeling of ‘normality’. It will recharge your batteries and help greatly with your ability to cope with the situation at home. Ask your friends not to mention your situation when they introduce you to new people so that you can have an opportunity to be yourself and not just ‘X’s carer’. Of course, when you are comfortable, you can mention what you do. I, personally, found it tedious to have to spend my valuable free time talking about the very thing I was trying to get away from
- Having a day off from cooking, cleaning and general housework activities can be fun and does not need to be expensive to do.
- Have a picnic in the local park, beach or on top of a hill looking down at the world
- Take a train or bus ride to somewhere you haven’t been before
- Try to make this a regular thing, getting out and about gives you and your patient something to talk about
- I acknowledge that preparing a disabled person to go on an outing can be hard work but give it a try and see if the benefits make it worthwhile
- Don’t stop playing sport, painting, craft activities, walking, fishing and doing those activities that you enjoy
If you feel you are struggling and things begin to overwhelm you please contact one of these organisations as they have highly skilled people who can assist you.