'Blurry vision' in DM - or maybe psychological? ?

[tobyj]

Just looking to see whether this rings any bells, as I'm trying to get a grip on DM's symptoms. To give a brief summary: she's 77, increasing cognitive decline (diagnosed MCI though I suspect possibly early dementia), reported severe insomnia, and over the last couple of years lots of issues with digestive health (heavily investigated). She's become very down and withdrawn and anxious - totally preoccupied with her health and cognition issues. Quite often spends the day largely in bed, ostensibly because of one or other of her ailments.

Anyway, in recent weeks/months she's been complaining of blurry vision, though she also describes it as feeling faint and unsteady. The GP sent her to the optician, which showed up nothing.

The blurry vision is the latest reason given for her not getting out of the house. I'm really struggling to get a grip on how much of all her ailments is down to a definite physical issue, and how much is exaggerated (or even made up) as a way of withdrawing from the world.

I don't see her often, as I don't live that near and work full time, but I know that my dad is rather tearing his hair out (though he's actualy very patient). The whole issue of her health has become a slippery, ever-changing thing that's so hard to pin down: she'll have a good day and be quite cheerful, but then there'll be two or three days when she won't leave the house and they have to cancel any plans. We'll get her to try and tackle one health issue, and that might improve, and then she'll almost forget about that one and start focusing on the others instead. There's always a reason why she's worried or feeling unwell, or not up to doing anything.

Is this common? It's both very sad and very infuriating. And if the blurry vision is real, does anyone have any thoughts on this?

If she's having cognitive decline she may well know that she is not as well and as with it as she was and be worried about exposing that.

I'm not old but I have some brain issues following an accident and some days I do really struggle to get out and be "normal" with people as I'm tired and just want to rest.

I have a group that I go to which is made up of people with neurological issues and it's very restful as I can forget words etc and know I won't be judged.

Going to other social activities can be quite stressful as people are not in general very forgiving of slowness etc.

I get blurry vision when I'm very tired and it's one of my brains way of telling me that I need to rest.

The blurry vision/ feeling faint could be postural drop, especially if going from lying or sitting to standing when it occurs, very common in older people. GP or nurse could test easily for this, although to be honest sounds more like due to cognitive decline. Anxiety and depression are prevalent in early dementia and all these physical ailments give her an excuse to withdraw as you say. I'm not saying that she is making them up or doesn't believe them herself.

What's her blood pressure like? Might be worth getting that checked, I think it can cause blurry vision. MIL same kind of age, has retinal vein occlusion which is an 'eye stroke' and nearly blind in one eye, mainly due to high blood pressure, so to avoid that kind of thing blood pressure needs to be treated. Unfortunately sometimes they can be resistant to meds.

Is she diabetic? I've got very blurred vision at the moment which the GP and optometrist have said is dry eye and related to the medication (for blood pressure and is a diuretic) I'm on.

Specsavers will visit at home if you wanted to rule anything medical out?

Exhaustion. Insomnia leading to chronic and severe sleep deprivation. Stress causing anxiety and using up what little energy there is. Unsteady and faint, her eyes aren't focussing - because she's knackered.

Thanks all. Sorry if I sounded unsympathetic when I said 'made up' - I didn't mean it like that, and I know how debilitating symptoms caused by anxiety and exhaustion can be, it's more about how to try and help. She's frequently in the doctor or the hospital being tested for various things, and those tests in themselves make her miserable and anxious, but it's hard not to recommend getting checked for things, because her symptoms could all have serious medical causes. But so far, none of the medical tests and interventions have done anything to either find underlying causes or to alleviate her symptoms. Any suggestion of more social help (eg support groups) is met with flat refusal. It just all feels like groundhog day - weeks of sitting at home feeling ill and anxious, punctuated by medical appointments which don't achieve anything.

Wrt to the vision, postural drop sounds possible, she's always had a tendency more to low than high BP. I think she's had too many tests recently to have undiagnosed diabetes, but you never know. @Octavia64 I'm sorry about your accident. I think you're right - any form of social activity is stressful for her, but she's miserable at home as well - and the whole situation is very hard on my dad, who feels bad leaving her alone too much. She doesn't really have any friends now (apart from very old friends, but they don't live nearby). She's even in a hurry to get off the phone to us these days, which is very sad - we're still close, but I think she sees any conversation now as an effort, because she's trying hard to remember the right things to say, and is worried about forgetting something or getting things wrong.

You need to stop trying to fix everything. It's her life, for her to live as she wishes. If she wants to stay in bed all day getting weaker and weaker, that's her choice. It's hard to watch someone fade away but it happens and trying to keep them alive seemingly against her will so she can continue this miserable existence - who is that for? Her or you? Do you think dying of dementia will be any more fun for her than this slow fade out she's in now? If all these tests and medical appointments are fuelling the misery and health anxiety then just stop, what purpose is it serving now she's been told all is physically fine?

Of all the things you've suggested she get treatment for, has depression been suggested? Regardless of whether that's a symptom of dementia or it's own separate issue, it could make a difference to her motivation and happiness. She sounds like the only option she's willing to consider is some sort of pill for a quick fix, so perhaps she'll accept antidepressants and perhaps they'll provide what she's looking for.

Has she actually been tested for dementia too? If she doesn't want to that's her choice. But if you're busy suggesting everything else you may as well suggest that too since you suspect it.

As for daily life, if she won't help herself then you can't make her. Accept her choices, feel your sadness then try to let it go. You can't live her life for her, tying yourself up in knots trying to fix a situation that ultimately isn't to do with you. I know that's hard, but the alternative is that her life, such as it is, consumes yours entirely.

What you can do is support your dad and see what help you can find for him, if he's willing to accept help. Does he need to organise a cleaner or gardener? Does he need to find social groups, if your mum was his main friend? Is there a befriending charity in your area who could come sit with your mum (or in the next room if she doesn't want to interact with them) to ensure she's safe whilst he goes out? Does he need help setting up online supermarket shopping, if leaving her alone to go shopping is difficult now?

See your mum on her terms. Find out what activities care homes do for dementia patients, then do that. Find a book about the history of her town and read her that? Ask her about this or that from her youth? Stop trying to have normal everyday conversation with her if that's not something she enjoys. Distract her from her woes if talking about them fuels the anxiety and seems to make her worse. Or listen while she offloads if talking it through seems to help her. Hopefully you can still have some kind of friendship with her.

You're right, I am instinctively a fixer. We're very different people, but she's always been a great mum, and I hate the fact that I can't find a way to help her. To answer some questions... Yes, she's taking antidepressants, as suggested a while back by the GP. Yes, she's had a referral to the memory clinic - she was diagnosed with Mild Cognitive Impairment rather than dementia, but has definitely worsened since then. There was no follow up to her MCI diagnosis, and she understandably has no desire to pursue it again.

As for dad, it's more that the situation with mum is holding his life back than anything else. He's sociable and active, with lots of friends, and he wants to be out doing things while he still can, but mum doesn't feel able to. It's not that she can't be left - she's basically fine to be alone for a few hours - it's more that he feels bad going off and enjoying himself too often. The house is always clean and tidy - I don't actually know whether that's still her or now him - that's a good thing to check. He enjoys doing the gardening and likes shopping, and he's quite techy so would be very happy setting up online stuff if needed. Mum can't cook much now, so I think they use quite a few ready meals, and dad cooks more than he did. I never get the sense that domestic stuff is a problem, but that's definitely something I can actively check.

I think you're right about conversations - maybe I need to think harder about to frame them to try to cheer mum up. At the moment, it's usually a quick 'how are the kids' from her/dad, and then I say 'how are you', and then that prompts a long chat about how bad mum's been feeling. I'd feel guilty if I didn't ask how she is - but maybe that's the wrong way to look at it.

We're all fixers to some extent, if we're nice people. Nobody wants to see someone else suffer. It's quite hard learning to protect your own energies.

I'm not sure if there's any treatment for dementia so maybe it doesn't matter anyway whether she knows or not. Maybe all her physical symptoms are depression then, as she has a diagnosis of that. It can cause all sorts of symptoms that you wouldn't expect.

Maybe all you can do is keep an eye on them so your dad can get help for being a carer when he needs it and your mum can get a diagnosis and social services involvement when things can't be ignored any more.

I'm glad you dad still has a life and friends, I hope he can maintain them through your mum's inevitable decline. Look after yourself too. It's going to be an emotional time.

Has she had her B12 and folate levels tested? Deficiency can cause symptoms such as:

• extreme tiredness
• a lack of energy
• pins and needles
• a sore and red tongue
• mouth ulcers
• muscle weakness
• disturbed vision
• psychological problems, which may include depression and confusion
• cognitive impairment: problems with memory, understanding and judgement

B12 levels are known to decline with age and if she already has digestive problems this can lead to her not being able to absorb it properly from food. Also, some medication (especially for gastro things) can make it harder to absorb.

[there's a paper here that talks about MCI and B12: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7077099/ I think there have been a number of studies]

If she’s depressed and anxious her brain will come up with a bunch of psychosomatic reasons to keep her in the house where she feels safest. I am currently struggling with this myself. If you tackle her underlying negative mood and she starts looking forward to going outside all these random ailments will disappear

I suggest the contented little book of dementia.

Also don't ask how she is, just start the conversation about something she likes and ramble on about it for a bit - gardening, cats, what the grandchildren have been up to.

Set up the interaction to be positive.

Has she been checked for cataracts?

My mum was referred to the eye hospital when her optician thought she had cataracts but it turned the problem was macular degeneration. She’d already lost central vision in one eye completely without noticing (that part still baffles me).

It’s probably worth checking whether the problem is one eye or both and whether she has blurry areas and non-blurry areas.

The other eye would take over. It’s only when you deliberately cover one eye that you see defects in the other.

I know, but I have always covered one eye then the other if things don’t look quite right to see whether I need to get my eyes tested. I think maybe it’s from being short sighted and my prescription changing regularly through my teens and twenties.

Has she had cataract surgery? They can become blurry if they accumulate deposits. Laser surgery can remove the deposits.

Thanks, no cataract surgery to date. Things have moved on a little. When we've talked more about the blurriness, she now describes it more in terms of everything constantly moving up and down, rather than blurriness per se. Anyway, the GP referred her to a neurologist, but the first appointment was going to be nine months away, so she's seeing a neurologist privately next week. He's also a dementia specialist at, so I'm hoping he might have something helpful to say on both counts.

Thought I d update this thread, as you've all been very kind. Mum had the private neurologist appointment today. He did lots of checks on her eyes but also lots of memory questions, which my dad said he was quite shocked how poorly she answered. The neurologist was concerned about her memory and also thought that the vision problem has a neurological rather than an eye related cause, so he's sending for an MRI on Monday. I suspect that it's likely to show dementia, which will be very sad if so.

I'm sorry to hear about your mum. I've only just read the thread and everything you have said does sound like dementia (or other neurological issue).

In the earlier stages of dementia my mother had a million different ailments and was constantly at the GP surgery or hospital appointments. She could not differentiate between a minor issue (like indigestion or hayfever) and a serious issue - she 'over interpreted' everything. She tried to find a physical cause for the discomfort and anxiety which was actually caused by her dementia.

I hope you feel you get some answers on Monday.

Thanks @catofglory and I'm sorry to hear about your mum too. How is she now, if still living? That's interesting about the many ailments - DM has also had many health issues in recent years, all rather vague and hard to pin down. No answers here yet - MRI done, but she's waiting on follow up consultant appointment to go through results.

You should have some answers soon. Quite often the scan will be to exclude other things, like a brain tumour, and dementia is diagnosed if nothing else is seen. My mother was given an Alzheimers diagnosis.

She first showed signs 9 or 10 years ago, that was when the phantom illnesses started arriving. She has been in a care home for 7 years now and is late stage.