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d-i-l losing sight

(15 Posts)
fluttERBY123 Sun 08-Oct-17 14:21:11

My d-i-l has been told sight is degenerating. Can't go into too many details on that. Currently can drive, has job, has 2 young children. It seems to be a question of time. My son says he wishes it was him instead. I want to say to them to prepare for the eventuality. I listen to what they have to say, get on v well with d-i-l but don't like to press too hard for details or ask whether they are looking at what will need to happen.

I want to say to her to get talking to people in a similar position. Get a bucket list. All sorts of things , but they need to come to me first. And I need to talk to you lot. What should I do or say?

Devorgilla Sun 08-Oct-17 14:29:04

I am so sorry to hear this. I have a friend in this condition and it is painful to watch. I also have had two eye operations in the last three years so can sympathise with the deteriorating sight. Thankfully, mine were both successful but it has made me appreciate much more my sight.
If this has just been diagnosed she will still be reeling from the news. She will confide when ready to do so. Meanwhile, research the condition online as there are massive advances these days. Loss of sight, while a horrendous prospect, is not the end of the world. Many people come to terms with it and enjoy life to the full with the support of family and friends.

maryeliza54 Sun 08-Oct-17 14:54:28

How very sad, especially in a relatively young person and how helpless you must feel. I wonder if the RNIB website has any guidance for family members like yourself about how you can help, think ahead and so on? You could do this so that when they do talk to you about it, you yourself would be better informed and prepared. There might even be an online support group for people wanting to support affected family members. It's lovely that you are being so thoughtful about this and I hope you get some help and support yourself

maryeliza54 Sun 08-Oct-17 15:04:08

Me again - tested my theory by going on RNIB website and typed supporting family members into search and lots of links came up.Apologies if you've done this anyway but it was useful to discover that resource is there anyway for future reference

Luckygirl Sun 08-Oct-17 15:04:57

That is sad. I think if it were me I would be starting to learn braille - the more familiar you become with it whilst sighted, the easier it will be to use when it is needed. It intrigues me that the system is still in use after so many years, and even in the era of high technology.

I do hope that your DIL can find advice on what to do to prepare - most syndromes/illnesses have their own websites and support and advice groups online.

Charleygirl Sun 08-Oct-17 15:09:28

I also am losing my sight and I have joined a club and we all meet monthly.

A lot depends on the cause of the deterioration because some problems can be at least arrested if not cured.

I am not too sure who learns braille nowadays but we were not encouraged to learn.

Riverwalk Sun 08-Oct-17 15:23:27

I'm very sorry for your DIL. I suggest that you search organisations/self-help groups for her particular condition for advice.

I'm alarmed at your suggestion that she get a bucket list .... this implies that her life will be over once she loses her sight.

maryeliza54 Sun 08-Oct-17 15:40:16

I thought the bucket list was to do with the fact of sight loss and what she would loose eg looking at paintings, architecture - I'd have a very long list

wildswan16 Sun 08-Oct-17 15:57:54

It is good that you are looking for ways to support your DIL but please make sure that you are following her way of doing things. I'm sure she has had time to consider how she will manage and how she will want to do things - it might turn out to be very different to anyone else's.

She may for instance, not want to make a big thing about it with bucket lists etc, and just carry on enjoying her family life as it is. It is really up to her to do things at her own pace when she feels ready for it.

I know a couple of families where one or both partner has significant sight loss - they manage absolutely fine and just get on with it, taking advantage of any adaptations available to simplify their life and the advice of their consultants team.

Christinefrance Sun 08-Oct-17 16:43:54

I agree with wildswan be guided by your son and daughter in law, don't overreact but make sure they know they have your support.
It's sad I know and there will be some challenges but there is help out there and you can help the family access it when they are ready.

Charleygirl Sun 08-Oct-17 18:21:17

I will know next month if I can no longer drive because my sight has deteriorated because of the condition I have.. That for me will be devastating.

fluttERBY123 Sun 08-Oct-17 18:52:32

Thanks, Maryel, will look into it. Condition known for a long time and nothing to be done but try to slow it down as much as poss. Deterioration advancing more quickly than anticipated.

morethan2 Sun 08-Oct-17 20:37:27

I'm really sorry to hear this. I'm in a similar position and it's really hard to know how best to help without being seen to be interfering. My DiL and her family naturally take presedence over our family and want and need to be the main source of support. I worry I'll step on her families toes. I don't want to keep on about it with my son. I'd hate him to feel it's all we talk about. I have only once had to talk to him about his reaction and that was because my DiLs family were upset at his behaviour (we were too) for what it's worth my advice is to let your son know that you are available to support them in what ever way they feel is most helpful. Reassure him that you'll be there if he needs to unload his feelings in a safe space. I'm very careful about giving unsolicited advice unless asked directly. I have occasional asked her sister if the family are getting support from agencies but mostly I don't I've just let them know that if they need us we are here for them too. I know that my son is reassured by having us in the background ready, able and willing to take the reins should we be needed. Its a very difficult position to be in. We're caught in the middle of a horrible situation. Witnesses our DiL suffering, our own child struggling, DiL parents distress. It's a very heavy load carrying all the emotion that is unleashed and yet having to rein in our own emotions. I'm sorry I can't be more helpful do take care of yourself and find someone or a place to purge your own emotions.

fluttERBY123 Tue 10-Oct-17 17:09:00

Thanks, morethan, you can understand, being in the same position. I think that's what's needed, somewhere for ds to unload. I am hoping there is a way to go yet, we keep getting alarms about this and that to do w the sight, but without knowing med records can't ascertain exactly where she is at with it all. Plus she is not getting continuity of care. We have offered to pay for an ophthalmologist but she keeps on going here there and everywhere on NHS. It has helped so much just to write it all down here.

Iam64 Tue 10-Oct-17 18:05:02

Sorry to read this fluttERBY - I have had some sight problems which are currently not problematic. Our family has a number of loved ones who have lost or are losing sight. I understand you wanting to do something, to give the right advice, it's so hard to feel you're doing nothing. However, as has been said, unsolicited advice can sometimes be received as insensitive, bossy, interfering even when that is the last thing from the person giving advice intended. I expect the closest to the "right time" to speak with your son and/or dil will occur and the key thing is to follow their lead I feel. Such a tough time for all of you