COVID-19 and impossibility of Self-Isolation

I am 76 and told to self-isolate. My partner is 68 and ought to be self-isolating. We both share the full-time care of and support for my son who is 46, autistic with severe learning difficulties, and extremely challenging for almost the whole of the time when he is not actually fast asleep. He cannot be left alone, apart from sleeping, for any length of time. It is completely impossible to keep a distance from him and there is frequent direct bodily contact including with saliva.

Despite extra precautions, there seems to be nothing we can ultimately do about this. Effectively, we all get infected together. My son would not be able to be left alone (or at all) in hospital for treatment.

There is almost certainly no answer to this but it would nevertheless be a huge relief to share thoughts with anyone who either is in a comparable situation or has any reflections to make.

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Hello dcem, Yes, very difficult times and I know that you are going to do all you can to continue supporting your son. Virus or no virus! Some things are easier said than done but my understanding of what we are being told is that families should ‘self-isolate together’ and do everything possible to avoid anyone in the family getting the virus. So keeping apart from everyone else and doing all the precautions that the government recommends ( Getting other people to do the shopping, not meeting them, cleaning everything that comes in the door, washing hands frequently with soap, etc.) Even if we do all this, we may not be ‘lucky’. If you or your partner have symptoms, it may be that the first one to be infected can ‘self-isolate’ for at least seven days within your home (or it may not). You tell us that you are 76 (slightly older than me but not much) so neither of us remembers WW II, but we certainly remember how our parents got through this. My own parents were bombed out of their house near London while looking after my profoundly disabled older sister. All three of them survived (otherwise I wouldn’t be here). Yes, there is no answer to this - except give it your best shot. Like our parents generation, most of us are going to come through this. Best wishes, David Towell

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Dear David. Many thanks for your message. I was born and brought up in Derbyshire away from the horrors experienced by your family in London during WW II, but my earliest childhood memory is of the small gas masks issued to me and my twin brother. A very different terror now, but the same community spirit is required. Stay safe. Best wishes. Duncan

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Hello David

Our hearts go out to you - stay positive and keep doing what you are doing and we will get through this. We are carers for our beautiful daughter who also has Autism and severe learning disabilities. Our biggest problem is that she always wants to go out in the car - if the ability to do this is curtailed we will get some real problems - especially if people use power tools nearby as she cannot stand the noise. By the way - how do you manage at night? It must be difficult to sleep when you have a son with such issues?

Best wishes

Adrian & Sally

Your local learning disability team can offer help if they know your circumstances-I work in one in NE England we have a list of highly vulnerable clients and families and will make contact daily if necessary to help people through this extraordinary time

Take care of yourself and family

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Dear Duncan,
As David said in his reply, the idea is that a family self isolates to prevent others bringing in infection. I was wondering whether you are getting support with shopping and other essentials. Do need to regularly go out of the house with your son or is he okay to be inside at the moment? From your message it is not clear if other people are giving you support. If you do not currently have support from others and you would like some help to think about what you could do if one of you became ill I could have a telephone or email conversation with you. I have done quite a bit of planning with families to prepare for emergency situations over the years and although emergency planning has become much more complicated with the situation we are in it might help to have someone else to think things through with. If you would like to do this my email is Christine@togethermatters.org.uk (I’m one of the moderators on the Choice Forum and run an organisation called Together Matters -more information at www.togethermatters.org.uk) Best wishes, Christine

Hi there,

Yes – you have a tough situation. I’m at home too with a young person with a learning disability and of course, getting messages across – hand-washing, distance etc. is impossible.

The one positive is that you are already a household so don’t need to keep separate from each other.

Lots of neighbourhood groups and church groups have sprung up who are there to help people like you, particularly with food delivery. No one needs to have contact – it can be left outside your door. I think you should do this first as these groups are there for people like you, who genuinely need and deserve assistance. Can you call around or email around?

You can go out too to open spaces as a trio – somewhere nice to walk?

And music – any music your son likes?

Keep in touch and find those local helpers.

Best of luck!

Dear Duncan
It’s a horrible situation, and I wish you all the patience and resilience in the world.
The idea of all three of you becoming ill at once must be very stressful, adn there are no answers easy or otherwise.

If it should happen, one thing that might help in a limited way is a ‘communication passport’ that your son could take with him into hospital. Apologies if you know all about these already, but it is a fairly straightforward way of giving health professionals and others the kind of information about your son that you would give them yourself if you were there.
There is information about communication passports here bit.ly/2Uwhl68

Andy

Apologies to everyone for not responding any sooner but we have spent the best part of the last day trying just to get a grip on the situation. We have always been able to manage one way or another, over the years, though sometimes I am not quite sure just how, but not being effectively able to communicate to my son what is really happening (and definitely not its significance or meaning) is particularly poignant just now. My son barely identifies even a mood or tone and appears to relate only in immediate terms and to what he can or cannot have or do at the time, which is usually food or drink related).

I am thinking of you, Adrian and Sally. Like your daughter, he loves being on the move - car, bus, train, ferry, plane – and the most he seems to be picking up so far now is that, for a change, we are not talking about or doing any of these at the moment. He usually sleeps very well, but sometimes can tear up and down around the house moving things around through the night, which is quite difficult to deal with.

We have been used to going out and about during the daytime, but it can be hard work as he is often very, very noisy, sometimes plays with his saliva (not good at the best of times, but certainly not worth risking the reaction to this now), and likes to grab things from people as we pass by. We have to be particularly careful if they are eating or drinking. I have decided that we cannot safely go out for the time being, unless maybe a quick trip in the car.

The real worry at the moment is the contingency planning, which both Phil and Christine have touched on. I know, Phil, that we will get no help from the local authority, so we need to formulate a specific plan along the lines which you, Christine, outlined. We have to accept that if any one of us is infected then we are all going to be infected because it is impossible to separate out completely. The main eventuality to have covered in advance, therefore, is if both I and my partner are ill and out of action at the same time, then how do we manage an ill (or potentially ill) son? We suppose that we simply have to get on with it. A dysfunctional household even more shambolic.

Which brings me to the hospital issue discussed by Andy. The fact is that my son can be so chaotic that unless he were immobilised by illness or sedation he probably could not be kept in a bed or a room, we would not be able or allowed to stay with him, and almost certainly he would not be admitted.

All these are of course issues which have been floating around for years, like trying for the best part of twenty years to get his teeth looked at. Ironically, we have at long last been given an appointment for this to be done under general anaesthetic in hospital on May Day, and this of course will now be cancelled.

We normally have a great deal of fun and we are confident that with a bit of organisation we can get back to that. Thank you, Christine, for specifying your website - I am sure I accessed it years ago, but it has escaped me in the meantime – and it is a great help getting me motivated again.

Best wishes

Duncan

Sending strength to you. Have you spoken to the community nurse. X

Hi Duncan,
It’s a very difficult situation for you all and I really feel for you. My offer still is there if you would like to have a telephone conversation- I’m around in the morning or in the evening if that is easier after your son is asleep- just send an email. It’s not to suggest what you do but just to hear what you think could help you all even if only in a small way -perhaps getting some essential information written down in case you both do become ill. I’d be happy to do the writing to get you going- very hard to be motivated at the moment.
This is an offer for other families as well so if other people on the forum know of families who’d like to get some thoughts in place and some information written for an emergency plan (such as essential information about their relative) then I may be able to help. None of us could have expected such a terrible situation for people with learning disabilities and their families so good to be able to do a few small things. I’ve encouraged families to make emergency plans for many years now but obviously never anticipated anything like this.