Unfortunately, many people are having to deal with acquired brain damage happening to those they love. It can be as a result of an accident, illness or stroke. In my case, I cared for a husband who had acquired brain damage after the removal of a brain tumour. I had two young children under seven and my husband’s injury had left him physically and mentally disabled.
I do not imagine you would be reading this unless you were in a similar position, or know someone who is. In the hope that my experience will be of some assistance to you, here are a few things to consider.
What has happened is real; if it has happened to you,
- Speak to your doctor and medical support team about any concerns you may have
- Make a list of all the little things that concern you
- 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 things that were troubling me
- Arrange with your health care team for any physiotherapy/speech therapy/rehabilitation therapy that may be required
- No matter how desperate the situation may appear to you, it is worth taking note of advice from the health caregivers. By ‘going through the motions’ you give yourself time to adjust. You need time to get used to this new way of life and all it entails.
- If you live in a country, like Australia, where assistance is available for carers, apply for government assistance as soon as practically possible
- If any of your friends and family member offers you support it is essential that you accept it
Offers of help are usually verbalised or texted to you. Sometimes assistance is offered in a comment on Facebook as ‘if there is anything I can do for you to help, please just ask’. I strongly encourage you to 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. Initially, 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
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
I was in my early thirties when my husband had a brain tumour removed in multiple operations. After each surgery, his mobility and mental capacity diminished. We and had two young daughters under seven years old. Trust me; I do understand in some small part ‘where you are’.
From first-hand experience, I know that the quicker you make a plan to deal with things the faster your Life will get back on track.
Give yourself time to be angry about what has happened, and you will also need to grieve the loss of what was before.
Know this, while it may seem like it at the time, it is not necessarily the end of fun and happiness. Life will continue, just not as it was before.
It really is important that keep yourself as healthy as possible in order for you to be able to cope with what has happened in your life.
Eat good healthy food, binging on junk food and foods high in sugar will only make things worse.
Drink lots of water, overdoing the alcohol intake dehydrates your body and seriously diminishes your ability to cope.
Getting enough sleep is often difficult. I found it to be the most difficult in the early stages because I was ‘on call’ 24/7.
Speak to your doctor as there are sleeping tablets available that simply 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. The technique is very simple and will distract you enough from the chaos in your day to relax and get some rest
For you to be able to cope with your new way of life, it is essential that you arrange to take a break from things regularly.
Depending where you live, there are organisations that have respite centres or volunteers who will come and sit with the ‘patient’ whilst you, the carer, get a break (even if you have to pay someone to do this service, please take advantage of it as your own health and well being will be impacted greatly if you do not get a regular break)
Try to continue doing things that you did on a regular basis before you became a carer.
Socialising with friends, alone and without the person you are caring for is essential. I am sure you occasionally met with friends for coffee or drinks alone, before the injury, so lose any guilt on that. It is normal to take a break from a person in an ordinary healthy relationship, so it should be when in a carer situation.
I would recommend that you set up a regular ‘date’ that you have some ‘ME TIME’ away
Catching up with friends and meeting new people who do not know your situation gives you a glorious feeling of ‘normality’. It will recharge your batteries and help greatly with your ability to cope with the situation at home
Taking a day off from cooking, cleaning and general housework activities can be fun and does not need to be expensive to do.
Try not to stop doing the activities you used to do before becoming a carer, things such as playing sport, painting, craft activities, walking, fishing.
It is exhausting to care for anyone with a diminished or diminishing mental capacity, add 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. Think of the Safety Warnings given when you board a plane “Fit your own oxygen mask before assisting anyone else” .
If you are healthy, getting enough sleep and in a reasonable frame of mind, you will be able to cope better with all the changes and trauma associated with your new, ongoing, situation.
Before my husband became ill, we spent weekends away camping at the beach or in the mountains. We enjoyed fishing and being close to nature. My girls and I missed being able to do this afterwards. I started taking us for day trips to parks and the beach. It took quite some effort to achieve but these outings gave everyone something to look forward to, and we enjoyed talking about what we had seen and where we had been afterwards.
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 outing, getting out and about gives you all something to talk about during the week.
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.
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 essential that, as soon as is practicable, you accept and put in place as much regular assistance as you can get.
You may find yourself in the strange position of being the comforter to your friends and family, rather than the other way around. Accept this, because generally, people have little experience in dealing with the trauma experienced when a friend or family member suffers an acquired brain injury and often they do not know what to say or do.
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.
Try not take 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.
Use Social Media to your advantage
If you are on Social Media perhaps you could make a Facebook page similar to the one a friend made for my granddaughter when, at 6 months old, she developed AML Leukaemia. I am happy to report that she is eight years in remission now. The Facebook page 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 remaining as well. It was a very stressful time indeed. My daughter was breastfeeding, and so it was difficult for her to get a break from the baby’s bedside. The Facebook page 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 their situation if she wanted to.
The Facebook page allowed friends to know what was happening and required by way of assistance.
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, no contact with anyone other than her care team and parents and brother.
This sort of page may help you with your situation. Remember that 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.
Tips for setting up a Facebook GROUP for support
- You must have a personal Facebook account before you can have a Facebook Group that you will use to organise support for your situation
- If you have to make a Facebook account and are one
ofthose people who ‘don’t like Facebook’ – relax, there is a way to get around not actually using your personal page
- Create your account, follow the prompts Or get one of your
tech-savvyfriends to do it for you
- Make sure you do not display your full date of birth, address, and any other personal information you would not like to be ‘out there’
- There are three privacy levels a group can have, public, private and secret. Select whichever best suits YOUR needs when it asks you to select anything.
- Who will see your posts?
- Only me (if you are only creating your Facebook account to be able to make the support page, this may be chosen)
- My friends (this means people who you have chosen to be friends with or people who have sent you a friend request that you have accepted) I would recommend this
- My friend’s friends (this means that anyone who is a friend of one of your friends will be able to see your posts) I would suggest that this may not necessarily be your best option
- Everyone/public. Do not select this unless you want anyone at all to be able to see your posts/photos
- Who will see your posts?
- Create your account, follow the prompts Or get one of your
If you are struggling personally make sure you speak to your doctor about things. There is a lot of support ‘out there’ do not be shy asking about it and where you can find assistance.
Australia’s Head to Health has heaps of links to support groups and organisations where you can find assistance
Lifeline Australia 13 11 14