Husband with gradual sight loss

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Hi
I've posted in 'other specific conditions' as well, but wanted to say hi and introduce myself. I am a wife and mother and have started up my own company so work from home. We live in SE London and I am looking for other families in a similar situation to my own. My husband is gradually losing his sight through glaucoma. He is 33 and has had the condition since he was 7. Recently his eye health has become worse and I am looking for advice so I can support my family through this time.
I look forward to hearing from you.
Dear Frances - what a very frightening situation for you all. I take it you are in contact with specialist organisations like the RNIB etc. (And hopefully they also have sections for families coping with someone else with sight loss?)

Have you had any guidance from 'the experts' on how best to broach the subject with your children? I'm wondering whether starting to socialise with other families where one of the parents has limited/no vision, may help to make things easier for your children, and realise that yes, there are 'happy families' so to speak even in those circumstances.

One of the phrases I picked up very soon after my husband was diagnosed with cancer was 'The New Normal'. At first, when 'disaster' strikes, we fight and bewail and even 'deny'.....but at some point we realise that we are now in a 'new normal'....living with cancer becomes 'the norm'....and with you and your family, living with vision loss becomes 'the norm'. it's a hard transition to make, but when it is done, there is a kind of peace perhaps. (I never say 'acceptance' as that might imply 'giving up'....but see below)

I assume that your own role now is twofold - the practical one of rearranging your life, your house, your lifestyle to one that your husband can cope with with his growing limitations, and the emotional one of being the central support of the family perhaps, at least for a while?

Maybe undertaking some kind of 'life audit' would be good? Cancer patients often hear the phrase 'put your affairs in order'....and that may be approproriate for you and your husband as well? Take stock of your entire situation 'as is', both financially, and practically (eg, the house you live in, how suitable is it for a blind person, etc etc), and in terms of future 'who does what'.....there will be things your husband can do, and things he can't, and that has to be planned for.

The financial planning ahead is probably the most important one - what 'paid work' will your husband still be capable of, and how does your own work/business compare? If you now have to face being the major breadwinner, he may become the househusband, that sort of thing. Can he retrain, so as to be capable of different paid work, or is he going to have other 'unpaid' duties and responsibilities? What sort of skills does he need to acquire now, to prepare himself for the coming future, eg, learning Braille, or whatever. I'm sure you don't need a pious statement from me along the lines of 'It's essential to focus on what he CAN do when blind, not on what he CAN'T do', but from the practical point of view or 'rearranging' your lives, I guess that is the essential first step.

Emotionaly, does your husband need any counselling? It sounds, tragically, like this day has been in the offing all his life, which might make its actuality easier....or worse. As we women know (!), men can find it VERY hard to be 'debilitated' (my husband HATED turning into a 'patient'!), and may strive to overcompensate, which might be good, or it might add to stress. Men also hate to admit psychological weakness, and so he might resist any form of counselling or emotional support? He may also fight being 'labelled' as a blind man.....so again, maybe socialising with other sight-limited people may help...or he may resist it, because he doesn't want to 'join' them.

I dont know if anything I've said is any use to you, but one thing I would say, and it comes from my experience of Cancerworld. I've found, since losing my husband, that human beings can cope with losing everything - except hope. Hope kept us going after his diagnosis.....new treatments coming on stream, new research, new possibilities. I would say the same for your husband. What may be 'doomed' now, may NOT be so in years to come. The 'incurable' can become 'curable'.....and one of the ways he may 'fight back' is by undertaking as much personal research as he can, or you can on his behalf (I became my husband's 'medical researcher'!) to see what is coming down the line, and which may eventually arrive to improve his vision again.

One final thought, if there is a genetic aspect to his medical condition, is this something that might affect your children in due course? If so, is this something that your children may ask about fearfully? Are there checks and tests that can be done, or keep them monitored perhaps? After my husband's diagnosis I became similarly concerned for our son, and now that he is a young man he knows that 'checking for cancer' is something that he needs to live with all his life, so he does not get 'caught out' the way his father did, IF there should be a genetic element to who gets cancer, and who doesn't. I hope very much that this reassures him, knowing that 'forewarned is forearmed', and so on. And, again, picking up on my point about 'hope', EVEN IF your children have inherited the same condition as their father, again, by the time they are his age, the entire medical treatment may be totally different by then anyway and telling them that, should, I hope, reassure them.

(Sorry, another 'final thought'....when my husband was first DX, I asked a friend of mine whose husband has had cancer for years, what to tell children. She said bluntly 'the truth'. The one thing children need to know is that we are not concealing 'bad stuff' from them, as they will just worry about it. We can't 'hide' things from them. What we can do, however, is 'filter' things. With my son, we told him Dad had cancer, but no one knew what the outcome would be - new drugs were coming out all the time, and some people managed to live well for years, by which time even more new drugs and treatment would be available.)(Sadly, of course, in the end, my husband 'ran out of time', but I do think that being honest with our son in a 'gentle' fashion - not whitewashing, but giving grounds for the existence of hope, hit the right balance for us.)

Sorry to have gone on so long - and wishing you all that may yet be possible - kindest wishes, Jenny
Hi Frances, I'm so sorry to hear about your husband. It's a distressing diagnosis for him and your family. I've read what Jenny has said and want to reiterate a couple of points she makes. Firstly, the children. They need the truth but they need it in a simple, straightforward way. Don't be tempted to be overly sympathetic. Kids are incredibly resilient. Trust them. Secondly, do get in touch with the RNIB, they are incredibly helpful. When my mum started going blind, I found so much on their website and in their shop which helped her no end. Thirdly, the phrase The New Normal is very, important. Yes, your life will change, but you will all adapt to all the new adjustments. It's a new life, but it doesn't have to be any less enjoyable than the one you have now. My thoughts are with you all.