Worried about husband

Specific disabilities and conditions
1

My husband is autistic and also has generalised anxiety disorder. Just before Christmas, he had a mini-stroke (TIA) and had to spend a week in hospital. He also contracted Covid in hospital, although he was relatively asymptomatic.

Since his discharge, he has been struggling. We do not live together, but I see him every day. He lodges with an elderly gentleman who has a few anxiety issues of his own.

He was discharged with quite a lot of medication. I have been through the medication with him and I sort it into a docket box because he was getting confused about what he had to take. Some of the medication has diuretic properties, so we have been to the pharmacy to get some discreet, but comfortable incontinence wear. He has also stopped driving temporarily, because he feels dizzy.

Now it is February, and my husband still seems to be very restricted in terms of what he can/will do. He goes for a short walk, but he should really be exercising a bit more because he has serious atherosclerosis. I have encouraged him to eat a little more healthily, but he does not like to change his diet. He does not work and does not drive to see anyone, so his world is quite restricted.

I was wondering if mini-strokes may affect people with autism more severely than neurotypical people (due to existing neurological issues), and I was also wondering who else should be helping my husband. He gets call backs from the doctor, but there seems to be no help in the community for his. He is only 63, but seems so much older now.

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Hi Janet
I can’t answer re autistic people being more affected re mini stroke.
Could you get in touch with the stroke society for advice? They possibly will point you in the right direction

3

Hi Janet,

I don’t know the medical answer to this, but your argument makes sense to me, in the same way that people with autism often need a smaller dose of meds that act on the brain and are more likely to have conditions such as epilepsy.
It could therefore be that the effect of a TIA is more severe than it would be in a NT person.

However, the break in his routines going into hospital; the fact he isn’t driving etc could also be factors. He is now following his new routine - staying home more, doing a short walk each day etc

What did he do with his time before he had the TIA?

The incontinence issue plus his GAD could be influencing factors too.

The GP could prescribe exercise for him e.g. a gym membership, local walking group, swimming etc which might help. Or the GP or your husband (with your help) could refer/self refer for physio and get an exercise programme that way.

To help him socially - the Stroke association might run a stroke cafe locally that he could attend or he could do some voluntary work - in a community garden that sort of thing.

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Hi Janet. If you think about it, strokes and mini-strokes can have a massive effect on people, often resulting in loss of skills. It’s often more subtle in terms of mini-stroke/TIA, but still noticeable - especially if others follow. So it’s entirely possible that the TIA has had an effect - and with autism that can throw up bigger changes in habits, anxieties, etc. It’s also possible, I guess, that if an individual with autism finds themselves unable to do something temporarily, then they’re wired to consider that permanent because they got used to that loss more quickly? Basically, like everyone else, I don’t really know but I have found that one person who had a stroke found that some of their autism symptoms had subsided post-stroke. If that can happen, I’d guess the opposite is also true. Doing an internet search found me a call for research on the topic of autism and stroke, so somebody’s asking questions, that’s for sure!

It’s fairly certain that the TIA has scared him - adding to his anxiety. The hard part is going to be overcoming that without major disruption to his life. You’ve hit on the main things he can do - exercise, diet changes - but the idea of changing all that must be scary for someone with autism and 63 years of habit behind him.

So I’d suggest that you try with changing just one thing. Perhaps get him to walk just a few yards further to begin with, to show him that he can increase his range. Make it a gradual process and extend it further. Once he’s comfortable with the extra distance, maybe change one thing in his diet. Then, once that’s embedded, make another healthy change - and so on. It won’t be easy, because often with autism, the eating issues are based in sensory issues, so the feel of certain foods in his mouth may be an issue - and it’s possible that this has changed because of the mini-stroke.

In a nutshell, all I would suggest is one small change at a time. Let it embed, then make the next change. And so on. It’s laboriously slow, but it does work.

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Perhaps try showing him a exercise leaflet.

6

Hello,

Thank you for the replies, they are very helpful. I think you are right, taking things slowly, and presenting information in a visual form, that he can access when he feels less anxious, are really good strategies.

I hope he will find the confidence to start driving again soon because he hates using public transport. However, if he really feels unsafe on the road, then I will try to accompany him on short trips on the bus at quiet times.

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Is he still driving??? Did he report his TIA to DVLA?

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Hello,

No, he has not driven since he had the TIA.

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9

My husband had a full stroke last year, he then contracted covid shortly after while in the hospital, I am certain that covid made the effects of the stroke worse. It has been a dramatic change for him, and me too

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Thank you for these replies. Valerie, I am sorry to hear about your husband. I think with my husband, his anxiety has really escalated. Fortunately, he is seeing the GP about his MH as well.

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11

Hi Valerie - welcome!

The important thing for good recovery from a stroke is lots of therapy, but if he had covid, that would have interrupted it badly. So in that sense, you’re probably right. But there is still time for him to regain lost skills.

12

Hello,

I just thought I would give a quick update.

Over the past two or three weeks, I was becoming concerned about my husband’s mental health. His MH has fluctuated throughout the 25 years that we have been married, but, there were little things that were standing out to me as being a little ‘unusual’.

Although we do not live in the same house, I visit my husband every day, and keep in touch throughout the day via text and phone messages. When I have visited, he had seemed a little paranoid, accusing his landlord of trying to lock him out of the house, hiding his clothes and hiding toilet paper from him.

I urged him to speak to his doctor for some mental health support, and he assured me that he would. His texts were also a little obscure and sometimes did not entirely make sense. I began to wonder if his mini-stroke had maybe left him a little dysphasic, at least in terms of written language.

Then, on Tuesday, he rang me to say he had taken an overdose. I asked him what he had taken, how much and when, and he told me it was about 30 aspirins. I called the ambulance, and I was concerned because he is on blood-thinning medication. He was taken to hospital.

I could not contact my husband directly. I am not sure whether he has not taken his phone, or whether he is simply not answering it, however, I managed to find out which ward he was on, and I visited him yesterday.

He was quite ‘disturbed’ and talked about things that were obviously not based in reality (conspiracies to dismember him, our sons being dead, me being ’ in on’ some kind of plot etc). When I gave him a hug as I left, it was apparent that he has not been washing regularly.

I spoke to one of the medical staff before I left, and I was told that my husband may have psychotic depression and delirium. The doctor in charge of my husband’s case is going to call me for more information.

I have spoken daily to my husband’s landlord, and he has told me that, apart from the times when I visit, and a short walk, my husband has spent almost all day upstairs in his room. I don’t think the self isolation has helped him.

Although my husband’s mental health has been fragile in the past, he has not had a crisis quite like this. I really think that the illness has been exacerbated by his tendency to withdraw socially and to neglect himself. My opinion is that, if he is willing, he should leave hospital into some sort of sheltered accommodation. I suppose, i will know more once I have spoken with the doctor in charge.

Anyway, this has been a long update, so thank you for reading.

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Hi Janet,
if your husband’s state continues it does sound like he will need sheltered accommodation and extra support in the interim.

I hope the hospital are able to work out what is causing his current mental state before they discharge him, so that he can receive the right support/treatment.

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14

Hello,

My husband has now been transferred to a mental health Assessment and Treatment Unit about 60 miles from where we live. I have spoken to him on the hospital phone, and he still seems very confused and delusional.

I will see about visiting him next week.

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Hi Janet. It’s a shame the unit is so far away, but hopefully they’ll be able to get to the bottom of what is causing his problems at the moment. In the meantime, a couple of days’ break seems a good option for you. Take care.

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I agree with Charles… I know it’s concerning, especially when hubby is confused. However , time to at least take a breather for yourself

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17

Hi Janet, take a breather and then start pushing for him to be moved closer to home. Is the ATU an NHS one or an independent hospital commissioned by the NHS?

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Hello,

Thank you for the really kind replies. It is an NHS ATU. I will start asking about transferring to a provision closer to home. I do not drive and other caring and work responsibilities are going to make visiting less frequent than I would like if he remains there.

Thank you for this advice.

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19

I have managed to speak to staff on the ward (by phone). They are trying to get my husband to eat and drink a little. He is being detained under section, and I have been invited to an admission review via Teams tomorrow.

I hope that, because this crisis seemed to escalate quickly, it will pass quickly, but the staff agree, he should be closer to home. I think it is a case of scarcity of beds.

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Hi Janet

Bed availability for mental health issues has been a problem since before the first lockdown. Too many cuts. There have been people sent 200 miles away from home for a bed before now, and there seems to be no lasting effort to improve the situation, yet it’s widely acknowledged that people with mental health issues recover better and more quickly if they are close to home and can maintain their connection with their loved ones.