Two posts ago, I wrote how the anniversary of a condition/illness’s onset is a time to remember with respect. That was written from the point of view of the person with the condition/illness. This post is written from the carer perspective.
When an anniversary of the onset of a chronic condition or serious illness comes around, particularly a first anniversary, it can feel like a milestone. As the carer, you have lived through a year of uncertainty, anxiety, and hope after a medical crisis in your family has turned your lives upside down. You were thrown into the role of carer maybe overnight. You had to take on a multitude of additional responsibilities. There was no preparation for this and you were on a steep learning curve. You may feel a sense of relief now, ‘I’ve made it this far!’ And there may still be anxiety about the future that is less certain than it once felt.
Everyone has their own way of marking an anniversary that works for them. This past Tuesday, Remembrance Day, was the first anniversary of a friend’s unexpected medical crisis, an event where I had to take on the caring role immediately. (Remembrance Day has taken on a whole new meaning in our lives.) I marked the anniversary by reflecting on the past year to put order to thoughts, feelings and emotions in the hopes of learning something to take forward into the uncertain future.
A carer wears many faces
I realised the sheer number of roles I held as carer, the amount I had to juggle, what I did well and didn’t. When you are in the middle of it all, the enormity of the role you play and contribution you are making may not be apparent as you are busy getting on with things. I want to share these roles and my learning to acknowledge the carer’s experiences and the contribution they make.
I was present when the life-threatening event happened, managed to keep a cool head and do what needed to be done to save a life. Like an angel guarding a person and being there to guide and help when that person most needs it.
LEARNING: Saving a life was the greatest gift I have ever given a person.
Learning about the condition, checking and sorting medications, dealing with new symptoms, helping the person with the exercises required as part of the recovery process, making all sorts of arrangements, etc.
LEARNING: Write down new changes to the routine, put them where I can see them so I do not forget about them and can coordinate with others when it is needed. Like when they have to take a medication 30 minutes before a meal, I have to remind myself to agree the timing for the meal with the person so they know when to take their medication.
Advocate and Note Taker
Preparing for and attending medical appointments and taking notes during them, acting as the ‘second pair of ears’. Being involved in this way enabled me to ask the doctors questions and to gently advocate for my friend when it was needed.
LEARNING: Work as a team, agree your roles with the person who has the condition/illness, who is going to do what. Keep a running list of questions for the medical and healthcare professionals as they occur to you. Prepare for medical appointments together and prioritise your questions. This will help during those times your loved one is feeling down and de-motivated and may need support from you in advocating for their needs.
I remember checking the person, wondering if it is ok for them to do what they are doing. I would caution them, remind them what to do and what not to do.
LEARNING: It is normal to fear that an activity could trigger a relapse. You want to protect your loved one and not let anything hurt them. And you have to let them get on with it, let them try things out for themselves so they can remind their body what it can do and might not be ready for just yet. Let them learn from their experience and mistakes. If they made a mistake, learned from it, and look like they are about to knowingly make that same mistake again, some gentle sterness may be needed. (A caveat: This can depend on the relationship and what it was like prior to the condition/illness. Sometimes gentle sterness will work, sometimes it will not.) This process of learning and adapting is necessary for the person to find their way back to wellness and a new normality. It can actually be motivating.
Driver and Errand Girl
There were so many medical appointments in those early days, medications to pick up, errands to run, shopping to do. My friend could not drive and I had not driven in London for some years. But I had to do it as taking taxis everywhere would have been very expensive.
LEARNING: You can do what you think you may not be able to. Focus on doing it well rather than worrying about doing it.
Chief Cook and Bottle Washer
Prior to the life event we experienced last year, we always ate well, often cooked from scratch, and minimised processed food and take-away in our diets. We had to go one step further and it was up to me to figure out how to make this change and do all the cooking. Plus the cleaning and laundry. And during the busy holiday period of Thanksgiving and Christmas when we had family visiting.
LEARNING: By scheduling the cleaning and shopping, telling the guests they will have to help and planning which tasks to give them, scaling back the amount of food I cooked made it all doable and easier. It also allowed me to have a good time too during the holidays.
Being a carer is a juggling act. You juggle the different roles you are playing, switching from one to the other. You are also juggling to keep all the balls in the air and this gets tiring after a while. You drop a ball. Or all of them. It can be frustrating where you feel you are spending all your time focusing on someone else and the to-do’s, and you wonder where the time went to focus on yourself.
LEARNING: Despite your best efforts to sort everyone else and even yourself at times, being a carer can get tiring. Be discerning. Drop those balls that are not important to keep in the air. They are often the requests from others for you to do stuff for them. And what they want done is not urgent in the scheme of things. It’s those things which you think, ‘This is the last thing I need right now!’ Drop those balls immediately.
I remember feeling tired at one point. The person you are caring for is getting down, maybe has experienced a set-back in their recovery, snaps at you and complains about how you did something. You feel under-appreciated for what you are doing. Other people are asking or even demanding stuff from you despite knowing the situation you are in. You ask yourself, ‘Why me? Why?!?!’
LEARNING: Don’t spend long in this role. Or live your life from it. It’s not healthy. Especially for you. Look at the balls you are juggling and drop the unimportant ones. We readily help and care for others, yet often deny giving ourselves the care we need. When we deny ourselves in this way, we place ourselves in the Victim role, which is not an empowering place to be. Even if it is just a few minutes of time for a start, allow yourself that to breathe, relax, focus on yourself, discern which balls to drop, then drop them. That is taking control and looking after yourself.
When you act with discernment and choose to drop a ball, you are in the Gate Keeper role. When you say no to someone, that you cannot do what they want you to do because you want to have some time for yourself, you are protecting your needs and getting them met.
At times, you may have eager and well-meaning friends who call at all hours to get an update on their friend’s progress. They call so quickly you haven’t had a chance to even tell family first. They want to visit when there is too much going on. You let them know when it will be possible and they ignore your requests.
LEARNING: These experiences reminded me that it is important to acknowledge your needs and meet them. It is necessary as it is our responsibility to meet our own needs, not others. And regarding very eager and well-meaning friends, see Diplomat.
I told people no (nicely), that I cannot help them or do what they wanted me to do. I told them it was inevitable that in the situation I was in, some balls would have to be dropped.
LEARNING: Here is how you can tell them no nicely. Acknowledge their needs, what they are trying to achieve, that they have the best of intentions and those intentions are laudable. Then state your needs, that you cannot help them at this time for XYZ reason. You do not have to go into tons of detail; just state your need and keep any reason brief. You can add that if your situation changes, you would be happy to revisit. You may also be able to suggest where they can go to get their needs met. If that person responds in an upset tone, leave that with them. You cannot take on responsibility for how they respond. That is their ‘stuff’, their monkey. Don’t wear their monkey for them. Your job right now is to look after your needs.
My friend is good at something I had to do but am not very good at, so I asked them to review my work.
LEARNING: Ask the person to help you with something that you genuinely need help with and they can help with. It might be as something as simple as asking for their opinion or helping you as you fix or make something. This is a subtle reminder to the person that they have abilities and competencies which add value and this can help maintain self-esteem.
My friend was able to walk further one day than ever before and I (rather excitedly) pointed that out there and then.
LEARNING: As the carer, I noticed I was able to see improvements my friend was making in their recovery that they had not noticed. Pointing them out to my friend helped them to see the progress too and that helped their motivation.
Over to you
What roles have you played as a carer? Do you find you play any of them more than others? Do you find some roles harder to do? And if you are the one on the receiving end of the caring, what roles does your carer play? Share by leaving a comment.
Call to action
If you like what you read, come back for more in the next few weeks. And feel free to follow me here and share this post using Twitter, Facebook, LinkedIn, email or one of the other buttons below.
© Copyright Barbara Babcock 2014