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(15 Posts)
GinJeannie Tue 05-Nov-19 18:55:44

I can’t believe that I am having to ask for help but am at the end of my tether. DH had a stroke 5 years ago which took his R side, but has recovered 50% use. However one of the unseen affects was the damage to the Executive Level of Thinking in the brain, ie Confabulation. He’s outspoken at times, cynical and critical of people, other drivers, tv programmes and has his own version of events and past conversations and memories when relating these. He’s never wrong and is very competitive! It’s so wearing and I am so very tired of it all and have apologised, in his absence, to others. I just feel so lonely at times and sick of compromising. I realise there’s no medication for this and even if we had counselling, he’d deny there was a problem. Sorry for the rant, our Children have limited appreciation of my situation, they just admire Dad for his hard work in his physical recovery, so I can’t offload on them. Any suggestions gratefully received!

NotTooOld Tue 05-Nov-19 21:55:35

I've never heard of confabulation, GJ, but your description: 'cynical, critical, never wrong etc' sounds like quite a few grumpy old men (and women) that I know. I'd try to ignore it and give up the apologising, it's not your fault. You could try congratulating him on making such a good physical recovery from the stroke and let him know you are on his side.

cornergran Tue 05-Nov-19 22:05:08

Your husbands stroke has impacted your life too ginjeannie. I wonder has anyone offered you support and encouragement or even acknowledged your care of your husband? If there’s a carers support group in your area why not see if there is a group for carers of stroke survivors or perhaps if the stroke association has anything helpful. You might also consider some counselling, some protected space for you to process what’s happened and think about coping strategies. It’s oh so hard to lose a bit of the person we love, it’s ok to have support for you.

Jane10 Tue 05-Nov-19 22:05:14

Surely you could mention it to your children? They'll need to be aware of this otherwise they might not be as helpful and sympathetic as they could be to you.

Tangerine Tue 05-Nov-19 22:06:33

I do feel sorry for you. No doubt your husband cannot help any deterioration in his thought processes but it must be wearing for you.

Strokes are very hard, for both the person suffering from them and the person nursing them.

aggie Tue 05-Nov-19 22:08:51

Sadly it is brain damage due to his stroke affecting his brain filter and he says what he ,perhaps , would have thought but not expressed verbally before .
Really he can’t help it , but that doesn’t make it any more bearable

Nannarose Tue 05-Nov-19 22:18:05

Confabulation is a condition that sometimes happens when there are neurological problems. We have become used, in recent years, to talking about dementia with more understanding. Confabulation (which sometimes goes with dementia) is, similarly, something that is very wearing for carers, and difficult for family & friends to deal with.
My only suggestion is to talk to someone who understands - if there are any nurses involved in your DH's care, ask them if there are carer's groups, or respite centres you can use. Otherwise, ask your GP to point you at services in your local community. There are some psychological services (not counselling which simply couldn't address this) which may help, but your GP is the one who would know what is available and how suitable it would be.

Would it help to see this as a neurological problem, and, as with dementia, deal with it kindly, but not taking the comments seriously? Don't engage in a discussion about the programme, or the driver, but gloss over it. This is the kind of thing that specialist nurses and psychologists can help with, if you have access to them.

That means that you need some respite for yourself, because this is a very wearing role that you have.

Take as much care of yourself as you can. Good luck.

MiniMoon Tue 05-Nov-19 22:29:26

As I remember it from my mental health training, confabulation is defined as a story, invented to fill in a gap in the memory. The stories, however fantastical, are not meant as lies or to deceive, the person with the affected memory will believe the stories to be the truth.

It must be very wearing to live with someone who believes everything he tells you, especially when you know that some of it is not correct.

I have no answers, except to say that you need to take a break now and then, if that is possible.

GinJeannie Thu 07-Nov-19 12:03:59

My apologies for being late in responding to all you kind and understanding lovely GN girls! All of your comments and suggestions were much appreciated, and I will reply as follows, just not individually, sorry! Our children live some distance away so don't see Dad often, although I have spoken of the confabulation situation, I don't think they realise how wearing it is. We are going on holiday next June with the youngest and husband for a week, so hope she will see things differently! I did join a local Carers group and gave it a year, but it was a very 'clicky' group and I never felt part of member said to me 'oh you are from down south'! No, am a Midlander now living up north! The counsellor there talked a great deal about her own TIA and double booked my last appointment, so I gave up. A volunteer who offered relaxing foot massaging, which I really enjoyed, talked non-stop unfortunately! I will try to be more patient and understanding, as do carers of Dementia patients have to be, but in doing so become more isolated in my own home! DH has an outside interest in bowling, so does that weekly with help from other guys, and I do volunteer with a local charity 3 hrs pw and in better weather we try and share the gardening, but, of course, he doesn't read instructions or directions labels or ask for help, and has had a couple of falls in the garden, hey ho! No bones broken! I haven't had a day completely to myself for over 5 years, half days maybe, so they are treasured. Thank you again for your feedback, I just wish I had been told more about confabulation at the time of his stroke, and not had to Google it,etc., to learn more about it. I will seriously consider talking to his GP and asking for a possible referral .

kittylester Thu 07-Nov-19 12:20:38

Have you had a Carer's assessment? Have you contacted the Stroke Association for support? Have you applied for Attendance allowance?

Sorry about the questions - just things that occurred to me reading your post.

GinJeannie Sun 10-Nov-19 20:00:05

How would I go about getting a Carer’s Assessment, since we have never gasped a Social Worker, other than an initial assessment 5 years ago! Perhaps this is something that the Stroke Assoc might do? I will contact them when DH out of earshot! Yes, thank you for asking, we do get AA, such a help, as is the blue Disabled Drivers badge. Also get concessionary tickets for cinema, local theatre and National Trust. How life changes in an instant! BTW, I should have enquired earlier, how is your son’s recovery? x

kittylester Sun 10-Nov-19 20:06:58

Contact Ageuk for benefits advice and you can get a carers assessment via a Social worker.

Our son is doing well. He doesn't work but does a lot of voluntary work. He finds the ongoing tiredness the worst thing.

GinJeannie Mon 11-Nov-19 20:26:02

Once again, thanks for all your valuable input. Good to hear that your son is doing well and is able to cope with voluntary work but, yes, the tiredness is overwhelming some days for stroke patients. He has very caring and compassionate parents! X

Luckygirl Mon 11-Nov-19 22:25:08

I worked for many years with a head injury service which catered for those with brain injuries, including those caused by strokes. Executive functioning controls many of our "higher level thinking" e.g. concentration, impulse control, subtle social skills etc.

Confabulation is separate from this and refers to people finding it hard to sustain a thread of thought and confabulation is the name for making things up to fill in the gaps.

These sort of "hidden disabilities" are very hard indeed for family to deal with - very often the sufferer him/herself is pretty oblivious to it all and in denial and cannot see what the problem is. It often amounts to a personality change and relatives would often say to me that their loved-one seemed to have a new and different personality - so hard for them to deal with.

The truth is that this sort of change is often completely intractable and virtually without resolution.

Headway is the best organisation to help -

This is a link to their fact sheets - the one you need to click on is "Executive Dysfunction."

You need to make sure that you get as much support as possible, as these sort of deficits can be very hard indeed to live with. Look up your local Headway - they may be able to point you in the right direction for local support.

Good luck with it all.

GinJeannie Sat 16-Nov-19 14:30:19

Luckygirl....that it really so very useful and I really do appreciate your well informed input. I will certainly use the links you’ve given me and contact a local Headway. Nobody at hospital or GP has ever suggested any help or counselling or given advice to me. It’s such a hard situation living with someone whose opinions and criticisms and arrogance at times you don’t share. Bless you for caring.