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Dignity in dying?

28 November 2011

In a couple of days it will be 6 months since Jane died. In those six months I have come to terms with many of the things that have happened before and after her death. Now that I work in the home care sector myself, I am acutely aware of some things people (including myself) did wrong when caring for Jane. I don't blame myself for any of it because I did the best I could. But some things make me very sad when thinking about how awfully exposed and vulnerable Jane must have felt. And she was not able to tell me. Not able to tell me that perhaps she wanted people to knock before they entered the bedroom etc. Just because I did not mind, did not mean she did not mind. But I never asked. And she could never tell.

Once, Jane had a male carer coming in and her face changed. I asked her if she felt uncomfortable with him washing her. She managed to indicate that she was and so I sorted it so that she would no longer have male carers. Maybe that is being picky or unfair to those carers that want to help but no man had ever seen Jane's private parts and a few weeks before her death did not strike me as a good time to change that habit.

In my recent training, a lot of time was spent on how to preserve the dignity of the patients by doing really simple things. For example, sometimes Jane would be on the commode in the bedroom and I would be making the bed. Since we were so close, it never occurred to me that it would be nice of me to leave Jane alone for a few moments, even if I just hovered outside the bedroom door. Instead of being around when she was doing her private business. The fact that Jane had lost some of her inhibitions due to the tumour did not mean I should not observe them. But I didn't. I just did not think about it. I did nothing to embarrass her or anything like that. But when you are together for so long, you get quite comfortable around each other and stuff we used to do kind of got pushed to the side for the sake of practicality. We never used to share the bathroom. So why did the fact that Jane could no longer go on her own mean that I had to stay in there with her?

I don't know, but I did.

I did not once consider that hoisting her in and out of the bed might be making her feel very undignified and upset. I was thinking in such a practical way that all I could see was how useful the hoist was in getting her in and out of bed, enabling Jane to be in the living room with me and her visitors. I did not think to consider that even if Jane would appreciate the practical use of the hoist, it might still be extremely upsetting for her to have to even need one in the first place. Why did this not occur to me?

I don't know, but it didn't.

When I think about this, it makes me cry. (I am crying as I type this). It just makes me so incredibly sad to think she must have felt like an object, rather than a person at times. People talking about her, (including me and the carers) over her head, at her bedside as if she wasn't there. Nothing delicate, nasty or gossipy as such, but just stuff like: what does Jane want for breakfast, does she need the toilet, etc. Just because we already knew Jane was unable to answer does not mean we should not have addressed her FIRST with those questions and then only come to a decision if she was unable to answer. That would at least have given Jane the feeling of having some say in what was happening to her.

Mind you, it wasn't always like that. Just that we all slipped up sometimes and we should all have spent a little more time on making sure Jane's dignity, both in choices and in personal care, was the highest priority.

Two examples stand out that are very upsetting for me when I think about it. So I can only imagine how upsetting it must have been for Jane. In both cases, in retrospect, I failed to put Jane's feelings and well-being first.

The first one is related to the use of the hoist to put Jane in a chair in the living room. I posted about the nightmare we had when we first tried to use it in this blog post: Difficult Weekend.. My current training emphasises over and over again that all staff must be trained to use equipment and if you are not trained, you must not use it, no matter how much the patient/family would like you to. The carers did not know how to use the sling Jane was given when they delivered the hoist. They should have said: sorry, we can't do it.

But they didn't. Because they knew how much I liked for Jane to be in the living room. And because they thought: How hard can this be?

This was a big mistake. They had no idea of what to do. We all faffed around the bed, rolling Jane around to get the sling around her body, lifting her, putting her back down again when we weren't sure. Finally we decided to try it and hoisted Jane off the bed. Immediately she began to slip out of the sling and it was obvious she was going to fall out of it, on to the floor. I panicked and thought I noticed Jane had wet herself as well. So we quickly put her back on the bed and decided to leave her in bed for the day since we clearly did not know how to use the hoist.

I cried. I apologised to Jane. But the tears in her eyes broke my heart. She must have felt like a piece of meat on a butcher's hook. Suffer the indignity of being a Guinea pig.

The next day, the carers tried again. This time it almost went right but when putting Jane back in to bed, she once again slipped out of the sling and we had to grab her by the arms and legs and throw her on the bed to avoid a fall. Once again I cried. Once again, Jane had tears in her eyes.

It turned out that the sling we used was only suitable for people with good upper body strength. Something which Jane obviously did not have. Secondly, the carers were not trained to use that sling, even if it had been the correct one. And thirdly, I was so keen to get Jane in the chair that I did not realise the benefits of being in the chair might not weigh up against the terrible indignity Jane suffered by being in the sling.

Someone should have said: we can not do this. I know that person wasn't me since I was not a professional carer then. I know the carers were at fault. But if I wasn't looking out for Jane, then who was going to? Why did I not stop them? Why was it so important for me to do this hoisting? The carers should have said: Sorry but you will have to wait until Monday when our supervisor can give us training or come to Jane and give her the correct sling.

Or what about the two district nurses who came in one night to put in a catheter? They took the duvet covers off, propped Jane's legs up and proceeded to spend half an hour prodding the catheter in to different holes, talking to each other about how difficult it was to see, shining a torch on Jane's private parts. I held Jane's hand as she winced in pain a couple of times. A tear rolled down her cheek. It never occurred to me to cover her up with the duvet as much as possible. After all, she had a t-shirt on. It never occurred to the nurses to talk to Jane about what they were doing to her. After all, she was unable to understand. So they talked to me, I talked to them and other than me soothing Jane, nobody made her feel part of what they were doing to her body.

I know better now. And that is what makes this so upsetting. I *know* I did what I could. I *know* the carers should have done a better job at times. But even so. Some of this seems so obvious to me now. Why did I not think about it back then. Just a small things I could have done to make things a little more dignified for Jane.

I cry when I think about this. I am determined to make sure the people I care for will never have to feel like their dignity is just an afterthought.

7 comments:

annie said...

My late husband had dementia and was vegetative at the end. It was all knew to me and at 29 he was by far the youngest person in the nursing home, so no one really knew how to treat him. Mistakes were made. I spent a lot of time going over them in my head that first year after he died. Kicking myself. I should have ... this or that.

But it's not as if anyone hands us a guide book when we are in those situations. I was hard pressed to find anyone who even knew about his disease let alone could clue me on the best way to act or advocate for him.

It's been nearly six years since he died. My life has moved on and for the most part, I have forgiven myself for not knowing what to do. He died the best way he could and I did the best I could to make it the least painful ordeal possible. I know that if he'd been able to communicate, he would have told me I did just fine. I'm sure that your Jane would tell you the same thing. Don't be hard on yourself.

Dutchcloggie said...

Annie, thank you for your kind comment. I am so sorry to hear about your husband. 29 is an incredible age for that to happen.

You are right of course, we don't have a manual. I know jane loved and appreciated me for what I did for her. I just wish I could have done it a bit better (eventhough I know I couldn't have).

terryd said...

I almost died of a ruptured appendix a few years ago. My spouse didn't know what to do as I laid on the bathroom floor writhing and puking. We didn't know. He was there for me in the hospital, but fearful of touching me, when all i wanted was hugs. Most of the caregivers in the hospital didn't know how to comfort me. I can count the ones that did, and the ones that didn't. Empathy is a very good thing to learn, and cultivate. I'm sorry that the lesson was so awful. Glad that you learned it though.

terryd said...

ps, Health care personnel have no business caring for patients. They see them as work, not humans. IMHO.

Dutchcloggie said...

Hi Terry,

I am sorry you had a rubbish experience. It appears you misunderstood my post a little. I did not need to learn empathy. I just realised it is always possible to show even MORE empathy.

Of course healthcare professionals see patients as work. That is what they are. I LOVE my new job as a home carer, but I would not do it for free. It IS a job. But I work with PEOPLE. Nobody goes in to healthcare as a career or for the good money. There isn't any. In fact, the money is so bad that only those who don't care much about what they do can last for long. Good carers leave the profession every day because they can not afford to be part of the Working Poor. They are replaced by young inexperienced carers who don't yet complain about the crappy pay. They send them out without a lot of training because that costs money....

terryd said...

I was coming at it from a patient's point of view. Some health care workers don't do empathy. I explained it to a few young nurses, and they acted quite shocked. They were more technique oriented. And it was made clear to me that the money aspect affected the level of care. The long term nurses were the worst, they took their angst out on the patient. Just sayin'. Something clearly needs to change, if the level of care makes the patient uncomfortable, it affects the healing process. You, as a family member, should not have been the one to know what is best, and shouldn't feel so responsible for the snafu's that happened. I'm thankful I had a voice. I'm so beyond sorry Jane did not. Hugs.

Anonymous said...

I know that you feel sad, but Jane would have forgiven you. She knows that you always did what you thought was best for her and loved you for that. She couldnt express her, but if she could, she would have said that she loved you or something like that. Don't feel hard on yourself.You did what you could do. Nancy

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