Do you have any advice for other people who might find themselves in a caring situation like yours?

don’t be frightened to ask for help and don’t wait until, until you’re, you’re sort of down there and ill or, you know, you’re worn out because I could have got a lot more help earlier on and I and I thought, No, it’s just me and Terry and I can do this and.. But really, you should take the help because like I found once the carers were all set up and I had that little bit of time, couple of, not long but couple of hours or an afternoon, it just makes you that bit more stronger and a bit more fresher to deal with it. So yeah, I’d say ask for help because there is help out there and it makes life a lot easier.

How can people find that help though and where would they start?

I found out after it, doctors, Carers Association, Carers Associations, they’re the people. I’ve recommended them to other people because they will help you fill forms in. Forms are like their booklets, you know, and so Carers Association definitely.

I would say to kind of access as much support as you can right at the beginning. I mean I really wish that we had accessed the, the hospice much earlier on in Sarah’s illness because we were offered that, well, Sarah was, you know, offered that but because of the difficulty she had in coming to terms with the fact that that this was a terminal illness she was very, very reluctant.

And I just, you know, with, with hindsight, it’s very, the care that she got there was very differently focused to the care at the hospital so even if you’re, you were still having, you know, even while Sarah was still have the active treatment I would have somehow or other, tried to work it that we had, we had that, that other, you know, maybe tried to get her in for respite or something like that. And, and that would have just opened up all these doors that kind of came and felt, in some ways, felt slightly too late for, for some things. it’s like there was there was a lot of stuff that Sarah could have got involved in that might have helped her process. The things that she was going through or even helped her use, you know, use the time that she had where, you know, she was always trying, trying to find things to do that she could do just lying in bed.

And again, they have all these things going at the hospice, which she could go and join like art classes, whether you’re in a bed or not in a bed, it doesn’t matter. Talking groups where you can just go in and talk about your experience with other people who are going through the same thing. I just I think a lot of those things would have been really beneficial for her but also would have opened up more support for myself or and the family for kind of the situation that that we found ourselves in.

I mean I think with most carers it’s, and people’s conditions often creeps up on doesn’t it? You, you don’t necessarily choose to take on the care of someone. it’s something that happens and comes to you but in my case, because we did choose to take on them living with us and us looking after them in the same house, albeit in a separate sort of flat so they had their own space. That was helpful. I think even though I knew my parents and I knew the flat I think it’s, it was a massive shock to suddenly be totally responsible for your ageing, poorly parents. But I think it’s a bit like, I remember being told after childbirth people, you know, women saying, Well, if somebody had told us it was going to be like that, you know, I wouldn’t have done it

And, and someone saying, Well, we did tell you but you can’t know until you’ve done it So you can’t know until you do it but I think get as much support as possible, because it is there, not as much as people want and especially if you don’t have finances to help. But it’s not always about money. it’s about your mind-set and about not being afraid to cry on a friend’s shoulder or ask, you know, ask all the time and it is sometimes difficult knowing what you can ask for specifically.

I think it’s important to, everyone says know the options, know the options. We didn’t have many options so that would been, I guess, overwhelming to have to try and decide the best treatment and that kind of thing, but I think you just need to have a really good support system and someone you can trust and you feel safe with and, most importantly, you feel that, whoever, you know, your relative, is in the best possible care and they’re as comfortable, that was the thing for me, was making him as comfortable and as, kind of loved as possible and just felt as reassured as possible when, essentially, what they’re doing is going on the most difficult. When you’re so aware of everything and you have this dichotomy of being with someone and engaging with them but, actually, you’re in your own world of, What the hell is going on I think it’s important for the person who’s caring to, to have a support as well and I was lucky that I had his friends and my family but they just need to know, you need to understand the disease and you need to not let it consume you though. You need to, I would say, just make the most of your time.

And my last question is that, is there anything, any advice or messages you’d give to other carers?

Right.

Just from your own experiences of what’s helped you.

Get help. Get lots of help. don’t be afraid to ask. But also be aware of, if, if you involve friends, be aware of other people’s limitations as well. don’t push people beyond their bounds. Keep an open dialogue with people who want to help. You know, and, you know, if they look as if they’re, they’re reaching the end of their tether, you know, just say, OK, well, take a step back and we’ll se. You know, don’t push them too far.

Keep control of the situation as you, as much as you possibly can. Make your demands to social services very clear. Tell them exactly what you want. As we did. You know, we actually said, We do not want these carers. They, they are not right for, for Di’s need.

Make use of the social worker. Find out what’s available to you. If you go down the direct payments route, where you employ your own carers, be aware that this can be a very, long, drawn out business and can actually involve you in, in lots of kind of bureaucratic difficulties. Finding the carers, interviewing them, organising the payments, everything. Get a friend in to do that for you, if you can.

And certainly make, if there’s a local hospice, make use of the local hospice. Certainly our experience with, of our local hospice was excellent. It wasn’t home but it was, when, when things just got too much they were, they stepped in and they were wonderful.

Be aware that agents, be aware that any care, I talked to the social services and our experience, they tell us, was not atypical. Be aware that plans keep falling apart. When you think you’ve got something organised, it may not happen. Things may change. Difficulties may arise. Carers may not turn up. May not be available. Have back up plans if you can. Try and keep a sense of humour, if that’s possible.

If you reflect back on the whole journey, if you were talking to somebody who was at the start of that journey, what would you, what advice would you give them?

I would give them two bits of advice I think. First of all, discovering that your partner is terminally ill and does has a limited time, to try to make the most of the time that is left, not in the sense of rushing around trying to do everything possible, but just trying to focus on a handful of things that you’d really like to do, if possible, to just try and do those. don’t try and cram as much as possible, just do a few things.

And then the second thing is, and this wouldn’t apply to everybody, but to, to realise that the best thing is not to try and remain alive for as long as possible for its own sake but to retain the quality of life for as long as possible and to engage with palliative care on, on a proactive basis say, I want the palliative care to allow me, not to stay alive as long as possible, but to remain as well and as enjoying, enjoying of life as possible during that period

So from a partner, carer’s, supporter’s viewpoint is there anything you would advise a supporter to do to help that process?

Well, again, I suppose in my case, although I desperately wanted her to be with me for longer I was also aware that to help her, it was best to accept the facts that my time, that for the time that remained to us together to be as bearable as possible, it was also important for it to be shorter. And to just accept the fact that that she wasn’t suffering for any length of time more than necessary.

Do you have any advice to other people who are in your situation?

I would say that, yes, any death like that of an illness or anything is not pleasant at all; it’s not what people want. The ideal death is just to pass away, although that’s awful for the people that are left. I would say just try and be happy with the moments you’ve got with that person. don’t force them to do anything they don’t want to do, especially with dementia. We did notice that with Dad. In his lucid moments, if he didn’t want to do anything he shouted at, you know, and, No, no, no So you have to remember there’s still a person in there somewhere. it’s just finding a way of getting it out really and that’s, I think it’s, dementia and Alzheimer’s is so complicated.

Someone explained to me once at a day care centre I worked at that it was like having a compass that on some days fell completely the wrong way you wanted to go, so you got nothing out of the person. On the days it was good, and it was a direction you wanted to go in, you’d get a lot of clarity from them that day, and that’s how they described it. And I thought that was quite a good way of putting it.

And just enjoy the moments you have with that person, whether they’re dementia or any other illness, it’s just try and make their life comfortable and happy. I used to say, when I was helping my dad, one of the things that I said to a friend once, I put myself in that position and think that if I was in that I’d want someone to support me going to the toilet, washing and, you know, I wouldn’t want to be left And whether it’s a male to female, it’s not the ideal situation but Dad didn’t haven’t any sons so it left it to my sister and I.

And I think that’s another lesson that we would have is that, that, you’ve just got to keep your, your head together and keep thinking because you can work out how to overcome a lot of the problems, much more easily than people who, are not familiar with the situation with the circumstances of this particular disease, in particular this one it’s so rare it’s unlikely in their professional lives they’ll ever come across it again. But who really are applying standard remedies to things that don’t need standard remedies. You really need to sit down and think what the problem is, and then try and find a tailored solution to it, and so that’s what my wife and I were doing all the way through.

Okay, is there anything, any advice or message, messages that you’ve learnt from this that you’d want to give to other parents who are in the same situation?

Yes, it’s such a rare situation and the onset of a, other forms of Motor Neurone Disease are quite different to this one. But yes, be alive to the possibilities. Use whatever levers you can to get things to move quickly in the early stages, to get the diagnosis. Recognise that if it is, if the symptoms are progressing in terms of their demobilisation of the patient, then get a step ahead of it and make sure that all those people, the professional team, are actually on your wavelength as far as that’s concerned. Make sure that people are thinking as quickly as you’re thinking. they’re busy people. They’ve not come across this before. The chances of them having come across it before are very remote, and you’ve got to make sure and hopefully, you know, even using this evidence that I’m giving at the moment to, to throw in their, well not throw it in their faces but to use this as a guide.

Make sure that you’re getting everything in place so that you’re in control of the situation rather than being a victim of the situation, and, it’s very important that you do that. Make sure on the medical team that there is somebody who is in charge, and that they are reporting back to you and that you can report to them on any occasion and hope to get a response from it, whether it’s the GP, whether it’s the local hospital, whatever it is. There’s got be somebody who’s got to be able to pick up, in a professional manner, the telephone and tell other people to do things.

And to make resource decisions, and I fear in this case that, resources were driving the decision making process rather than the other way round. And, given the, the shortness of the onset of the illness, this shouldn’t have been a feature. The fear was that this might go on for a number of years and if they committed to a certain line of support they would be committed to it for a long period of time. If these symptoms are showing in the way that they did in this occasion, throw the resource issue out of the window.

At, you know, when you first started this caring journey, what tips could you give somebody starting on that journey now?

it’s so difficult because it’s so individual. it’s such an individual thing. I think be kind to yourself and, and I think, as well, just have the knowledge that there is no right or wrong way to do it and you do the best you can within the capacity that you’ve got. And, and I think there’s a real need not to be too hard on yourself because all of us get things wrong and we get some of it right, get some of right and it’s fantastic, some of it is wrong and I think also, don’t be afraid to challenge. don’t be afraid to challenge the professionals because professionals don’t have all the answers. And I think and for me, there is that thing about the honesty of it was so important to me and, actually, if I can get one thing across to professionals it would be communicate honestly.

And at, that’s actually, that’s what I would say is communication. Communication is absolutely the key, you know, communication between yourselves as a family, as a, you know, as a couple, just every single bit of communication is so important and good communication, actually, makes the journey afterwards much easier.