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Being a friend, a carer and a friend to a carer



I have been thinking a lot lately about friends and the meaning of friendship. As a child, making friends didn’t come easily to me, so those friendships I had were very precious, and I suppose that established a pattern that followed me into adulthood. Working full time in a demanding job with a 3-hour commute several days a week has meant that some of my closest friends and confidants are work colleagues. It makes sense as we spend most of our time working together in a tight knit team, supporting and encouraging each other.

Consequently, I have had less opportunity to cultivate friendships in other areas of my life. Where we have invested in friendships in the past we have often found that a change in circumstances was enough to cause the connections to wither. This happened some years ago when we were struggling with infertility and, as each couple in our circle of friends began their families, they inevitably moved on to establish friendships with other parents with whom they had more in common. At that time our pain crippled our good intentions to try to stay in touch. I regret this now, but the consequences meant that tender healing scars were ripped open, it was only so long before self-preservation took over. Now that our scars have healed, and we have come to terms with that aspect of our lives, each of us have moved on in life over the years and the gap seems to be too wide to bridge.

Fast forward a few years and we were enjoying close friendships with several people, conscious that friends are and will be meaningful to us and wanting to make a meaningful contribution to their lives in the future.

Moving Mum in with us and becoming a round-the-clock carer, while trying to hold down a full-time job has caused me to reset my perspective about friendship in ways that I had never thought I would. Having read about carer isolation in the past, I always thought it was one of life’s bitter ironies that, at a time when people probably need social support and interaction the most, it becomes difficult, if not impossible to find and maintain.

What I am going to write about now is, naturally, from my perspective. My experiences will, of course, not be those that others may share or identify with, and that is OK. Each of us come from unique contexts and have our own patterns of friendship. By writing of my experiences I am not attributing a value to them. I am just exploring friendship from the perspective of an introvert, who currently works full-time, loves reading, has fairly niche interests and who needs to ensure that someone is home to provide care 24 hours a day for a parent with dementia. If you have made it this far, please read to the end to get the true flavour of what I am trying to communicate.

Initially friends were very interested in our building an extension for Mum to move in and we had many visits in the early days as Mum tried to settle. When her diagnosis came, we felt some relief at having a reason for all the challenges she was facing, but that did not take those challenges away or remove the toll that they were taking on our lives, our sleep, our privacy, our home and our ability to maintain friendships and relationships outside of our home. We were no longer able to take up invitations to go to friends’ homes or to social events together. We did take turns as long as the invitations were offered, but they must have felt awkward about how difficult it may have seemed to us and the invitations stopped coming. We, on the other hand, were perfectly happy to take turns as it meant we had a chance to speak to people in normal conversations without having to make sure they knew who we were or where they were.

It was difficult for us to find the time and energy to invite friends to come to spend time with us. Mum’s cognitive issues made it challenging to have people who she maybe didn’t know well in the house. It is difficult to find the energy to entertain after a week of work with busy days and nights when your sleep is interrupted at 2-hour intervals. It’s difficult to maintain a semblance of normal life as a couple without bringing your circle of friends into the chaos. I could no longer meet up over spontaneously arranged coffees or suppers or other events so the texts and calls to do so stopped coming.

Occasionally I will meet friends when out on a shop dash – usually for food or something Mum needs. We greet each other, they ask how Mum is, I say, oh well, you know, just the usual (knowing that there is no way that they can know at all), they ask how I am, I say, oh, I’m fine.  Because by now they have taken a couple of steps away as they move on, and I know they don’t need to hear how I really am. They are busy too. And I am scared to have to try to articulate how I am really feeling. I spend a huge amount of thinking time trying to figure out how I am doing, carefully packing my emotions away so that I can function day by day. If I pull that all out, there is no way it is all going back where it came from. If my husband meets friends and they ask about me, he now tells them to ring me to find out – partly to observe the look of horror on their faces. I am still waiting for those phone calls.

Now, I know very well that friendship is a give and take, that people generally mean well and that lately I have not had the time to cultivate and nurture friendships. I am sure that many friends I have known feel they have grown out of touch with me because I have been the one who hasn’t kept in touch. I know friends who have had to deal with difficult circumstances and I have wished I had the freedom to offer more support. I have thought of them almost daily but if I haven’t contacted them, to ask how they are, how are they to know I am thinking of them?

But what is also true is that I have made strong and unexpected friendships with people who have stayed in touch. This has comforted me with the knowledge that I can still be a person who others want to spend time with despite the challenges that being my friend can bring. It tells me that I can still be a friend to others and that I am still visible to those who matter to me. I am so thankful for these precious people who have come into my life, at times when they could never have known how much it meant to me. I am at a loss to know how I am ever going to repay them with the gift of my friendship and love. In a month’s time I will reduce my working hours to part-time. One thing I want to try to do is to prioritise my friendships and to use any time I have to reach out to say, I’m still here and I‘m still interested in your lives.

I know that dealing with a change in a friends circumstances is difficult, and I have been in a position many times when I was at a loss for something meaningful to say or something valuable to contribute. I’m not sure if people fear saying or doing the wrong thing or getting involved in a situation that is will be difficult to extract themselves from, or what else is going on in their minds. So, I have drawn up a list of things that carers in my position might find supportive.

1.      We need to know that you still see us as your friend, as that person who maybe used to be fun to be with. I know I see myself as a carer, daughter, employee and wife – in that order. Now I can hardly remember who I am as a person – the person who you may have once counted as your friend still exists, but she doesn’t recognise herself – she needs you to recognise her, so she can remember too.

2.      Don’t be afraid that you’ll be asked to do something or commit to something. A text or a note is more than enough to let us know that we are not forgotten. Sometimes a phone call requires our attention at a time when we are involved in something else. A text or note can be read and responded to at a time when we are at our best.

3.      If you are asked to text or phone before you visit, please don’t let that put you off. It just means that I need to make sure that Mum’s personal needs are met before you arrive. That the pile of ironing is shoved into the cupboard under the stairs, that I can tidy the sofa and that I can run upstairs to get changed. You can reassure me that you won’t see any mess, but I will, and that makes the difference.

4.      If you do call on the spur of the moment, be prepared to see the ironing, the dishes and the dishevelment. Be prepared for me to have to excuse myself to help Mum. Be prepared that I might not have biscuits for tea. Be prepared for me to love that you have thought of me. Be prepared for tears, maybe.

5.       If you are coming unannounced, bring biscuits.

6.      If you really want to help someone who is a carer, take time to get to know the person they are caring for. My dearest friend did this, she came with me to hospital appointments as a second pair of hands, so she could be with Mum while I found parking spaces and wheelchairs. She built a relationship with Mum so that when she finds a few hours, she will come and stay with Mum and let John and me out for a cup of coffee or a walk with dog together. Mum loves to spend time with her and I know everyone is safe and happy. This process takes time and commitment and not everyone is prepared to invest in the process, but it is saving my life now, and I am so, so very grateful.

7.      If you ask a carer how they are, please don’t do so in front of the person they are caring for. You have no chance of getting a truthful answer. This happens to me all the time and my reply is always, oh, I’m fine. If someone tells you, oh, I’m fine and smiles, make sure you find the time over the next few days to contact them personally and find out what is really going on. That is, of course, if you really want to know and are prepared to respond in support.

8.      If the carer posts a status update on Facebook, ‘like’ their post, but try to find something relevant to comment on as well. I have posted a few things on Facebook recently and, to be honest, a ‘like’ was not really the most appropriate response to the content of the post. So, I am left wondering if you have engaged with the link at all, or if you have just noticed that I have posted and are acknowledging that, rather than the message I am communicating.

9.      Never depend on social media as the sole means of staying in touch. I have a difficult relationship with social media, particularly Facebook. I use it mainly as a means of keeping in touch with family and friends who are scattered in various locations and to access specialist support forums for carers. The time I spend on Facebook can be the loneliest moments of my day. I have been able to identify my triggers and have put in place strategies to help avoid them, from ‘un-liking pages’ to unfollowing people for a while. Several times my finger has hovered above the link to delete my presence permanently, but I am afraid to cut of my nose to spite my face, so to speak. Remember, the friend who is a carer might not be as up to date as you with what is happening on social media, so if they don’t respond to your updates, it may not be that they are not interested, they are just practicing self-care while waiting for the phone to ring or the door bell to chime so they can interact with an actual person.

10.   If you do make actual meaningful contact with someone who is a carer, give them time to talk if they seem to need it. You may be one of the few people with whom they have had a coherent conversation for a while. Listening is one of the most meaningful gifts you can give. Don’t feel that you have to offer solutions to any problems that are talked about. The process of talking them out is helping the person to sift through the issues and find a way to problem solve as they do so.

11.   Just because the person is talking about what is preoccupying them doesn’t mean they don’t want to reciprocate by listening as you talk about what is on your mind. We need to be included in your celebrations and struggles as well. Caring makes us good listeners, I can honestly say that the experiences I have had in life have served to increase my empathy and appreciation of the struggles of others. It has broken me, too, into tiny pieces and that means that I will hold you gently and tenderly as a treasured friend.

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