Caregiving: Support

Where to begin? I feel like there should be a punch line around here somewhere. Support for carers is an interesting one, for a couple of reasons in particular. One is that whatever support there is for the person being cared for (with the dear hope that there is some), there is usually only a fraction for the carer. The other is the hierarchy in support concerning carers of people with physical issues and carers of people with psychiatric issues, or rather, an attitude of some that there should be a hierarchy.

To address the hierarchy issue before running away from it quickly: I know someone who cares for a partner with a severe psychiatric illness who went to a carer support group covering all causes for caregiving. She was asked by another carer, outright, what she was doing there. The (deliberate) implication being that a carer for someone with psychiatric issues is doing little (if anything at all) to warrant support. Thankfully the vast majority don’t think like that and there are many, many carers of those with physical issues who are compassionate to all those in the position of caregiving. The reason I mentioned this though, is that it is a part of caregiving, thankfully not one I run into often, but there it is, and I believe it’s worth knowing about. Caregiving presents different challenges to every carer, and some people seem to miss that point entirely and in so doing, do more harm than good.

So already, finding support as a carer has its hurdles. One of the primary ones being that there is not a lot of it. Support can come about in three ways: from the professionals, from the people who are in the same boat and from friends and family. These go for the carer and the person needing care.

The professionals, for us, are Mr. Juniper’s mental health team and our local doctors. The mental health team consists of psychiatrists and CPNs (Community Psychiatric Nurses). There are “his” psychiatrist and CPN that are the primary points for support. Both these people (and their colleagues) are great, and they can offer a lot in terms of support. Our doctors are fantastic, too. They know Mr. Juniper, his history, and his current treatment plans. They’re the people who can do the practical support of getting appointments moved forward in times of crisis, who are on hand in the constant experiment that is Mr. Juniper and his medications, and who can offer support at home by coming over for an hour and giving Mr. Juniper the space and safety to talk about what’s troubling him at that time.

The people who are in the same boat. This kind of support does not come from the same source for both of us and it’s the kind of support that is most commonly found on forums: “Have you been bitten by a radioactive spider?“ or “Has someone you know been bitten by a radioactive spider?“ There is an unwritten rule, at times forgotten and usually at a cost to someone who is in a vulnerable space: don’t look at the other forum. Whether you’re the one who’s been bitten by the radioactive spider or the one who’s caring for the person with a spider bite that’s glowing. At times it’s interesting to see the other side, but support forums are usually where people go when they’re grumpy and tired. When they need a space in which they can be painfully honest. They’re not usually thinking before they type and at times, they’re just plain angry. Again, this goes for both sides. For Mr. Juniper and I, support sites are not a primary source of support. Mr. Juniper hasn’t used them in years and I have one (the only “˜good’ one I have ever found, that’s aimed at carers of those with Mr. Juniper’s condition ““ Mr. Juniper has found countless sites that can support him) that I have not visited regularly for at least a year, if not more. It’s a good site, no denying it, but with very good reason, there are a lot of unhappy people on there. A lot of these people have gone without any support for years (decades, in some cases) and that doesn’t always have good results. They’re tired, they’re angry. They’re a lot of things. They’re not me. It is wonderful to have a place to vent, and heck, I’ve had to, but when there are people who can’t get past their own issues, a place for support can feel as though it turns into a place for negativity. Again, I can understand why there are people who feel the way they do, especially when the people on a support site are drawn together by an often difficult circumstance. But a negative space isn’t beneficial. Not for me anyway. It’s what led me to drift away from the site. There was definitely support to be gained, but it required immense strength not be drawn down by the negative, and at times, angry atmosphere.

There are then friends and family. They’re not professionals and generally speaking, they’re not in the same boat. Mr. Juniper and I are incredibly fortunate to have the support we do from my family and from our friends. But the support they can offer is more of an accommodation of Mr. Juniper’s condition than it is what may be considered “support.” But an awareness of what Mr. Juniper is going through is support in that it allows things to be that little bit simpler for us. We can change plans without excruciating explanation. Mr. Juniper doesn’t experience the same stress when people understand that he needs to leave a room for a few minutes. It’s in the small ways that support from friends and family can be so important and is all that we would generally ever ask from them, specifically because they aren’t professionals or in the same boat.

Okay, so there’s a fourth way of gaining support: books, whether they relate the experience of the person with the condition or the carer. I have a couple of books floating around that are by people with Mr. Juniper’s condition. I’ll admit that I’ve yet to read them, perhaps I will in years to come, but at the moment I’m just not in a place to do that yet. I’m aware they are painfully honest accounts. There’s a book by a carer, though, which has been read frequently and dipped into often: The Selfish Pig’s Guide to Caring. The author, Hugh Marriott, is British and he writes from the perspective of caring for his wife who has Huntington’s Disease. Yet this is an incredibly accessible book, whether or not you’re British and whether or not the caregiving is because of physical or psychiatric reasons. Interestingly, there are a handful of negative reviews on Amazon which criticise the book, calling it “offensive” and “inhumane.” To balance that out, Alison Ryan, a carer and former Chief Executive of The Princess Royal Trust For Carers says, “We have needed this book for twenty years.” I’m inclined to go with Alison Ryan. (The book is still endorsed by The Princess Royal Trust for Carers and suggested as “further reading” by MIND.) The book may not be for everyone, but I’m going to suggest it’s worth giving a go, with the perhaps telling point that it’s painfully honest – the reason that I’ve yet to read the books from Mr. Juniper’s “side.” The other way of gaining support from books is for information on specifics, such a specific mental illness, or a specific form of therapy. Mr. Juniper and I have a small arsenal of books in the house which are “specifics” and we wouldn’t be without them.

And there is sort of a fifth way, too, which is information. This ties in with books, but isn’t exclusive to them. There are a lot of charities and organisations out there with information on different mental illnesses, different treatments, medications and therapies, rights and legislation, financial advice, what it means to be under the care of a mental health team, how confidentiality affects the patient and the carer, and so much more. Information is so important and things become simpler (if not easier) the more that is known; it takes away fear of the unknown and can knock little hurdles out of the way.

And, uh, there’s a sixth, too. I mentioned them earlier: support groups. They’re not for everybody, but it is worth finding out what’s in your area and you never know, you may happen upon a fantastic source of support.

If all else fails: muffins. Specifically, lemon curd muffins. Juniper Junior helped me bake a big batch and they were excellent, uh, support for Mr. Juniper and I over Hogswatch.

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Juniper

Rarely to be found without herbal tea nearby. Team Unicorn. Often in pyjamas. Also: TEAM KATNISS!

2 thoughts on “Caregiving: Support”

  1. I’m so glad you do have these support networks, they are so crucial. My brother-in-law had Duchenne’s Muscular Dystrophy, when I came onto the scene he required 24 hour care. His mother in particular is a very staunch lady and really only reached out for help when she was at the end of her tether. She had carers come in and help with my BIL, one of whom is second mum to the family now, but my MIL shouldered a fair proportion of the load. She felt she had to, or he wouldn’t get the things he required. I think despite all the support she had, sometimes she had to do the ballbusting alone because it was the only way shit got done, and I know that was a huge strain on her, and on the whole family. I think my mMIL and FIL worked out that even with the support care they had, personal care for Chocolate Monster took up a quarter of their day. That’s a huge amount of time.

    I know for me personally I often felt helpless because I couldn’t do much in productive ways to help (it took a long time before  Chocolate Monster would deign to let me put his dinner tray on his wheelchair!) but I tried to listen and understand. Now that Chocolate Monster is gone, listening and understanding is  just as important as ever.

     

     

  2. It’s true that being a carer is so invisibly tough at times. I have chronic fatigue syndrome (a complicated condition that is somewhat like having the flu all the time with no end in sight), and while it isn’t severe, I do rely on a lot of things my husband does. I’m unable to work a regular job even part-time, and so there are financial burdens as well. Hat-tip to you for trying to help people make sense of their position.

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