Just a query to other Carers about MS Confusion as my husband often is convinced that an event has happened which definately has not…for example he told me yesterday that a “Mrs Dean” had called while I was shopping regarding the business letters that I had sent out on my headed paper…he was very clear on the details and that I had to call her straight back. I explained to him that I hadnt sent any letters, no longer dealt with business matters and didnt have any headed paper…I even checked 1471 to see who had called while I was out and there had been no calls at all! On another occassion that he was late for University although he hasnt worked in years…it is all very real to him and he gets annoyed when I try and explain things to him.
Do any other Carers experience this problem, as I havn’t been able to find much info on cognitive impairments and doesn’t seem to be a very common symptom of MS?
Hi. I can say that my wife also can be a tad confused. As well as asking frequently what day it is she has sometimes felt convinced that we have another house (we’re not that lucky!). She also can get pretty annoyed when I gently try to point out that she’s got things a bit wrong.
A bladder infection is worth considering. My wife has had this problem without being aware of it (no itching or pain weeing); it was only picked up by the urology clinic when testing bladder function. I think it exacerbated her confusion but it still crops up along with some cognitive impairment even since the infection was treated. I think it could still be related to bladder in our case since I cannot persuade her to drink anywhere close to the amount of fluids she was advised to to keep her kidneys flushed.
I know that cognitive impairement can occur with MS. Like many things with MS it various considerably from person to person. I personally find the emotional and mental problems of my wife harder to cope with than the physical ones.
although not a common symptom,ms can cause dementia like symptoms in some, i get really confused at times, and have trouble in knowing how to get a shower or brush my teeth, i get all confused and upset,then when the confusions has cleared i get scared because i know exactly whats happening and i get really scared about, it,i find this harder to deal with,than the physical side of the ms,i would rather the loose the use of my legs than my mind.
If your husband is taking any medication it is worth re-reading the leaflets to see if any can cause hallucinations.What you describe happened to my wife on three or four occasions and I found that some medication was causing the problem, and the ‘imaginings’ disappeared after adjusting the meds.
I’d agree - check the bladder first - the nurse should just dip stick a urine sample for you.
Failing that - cognitive impairment CAN be a problem with MS. My husband got terribly “confused” - he often thought he was in Brighton or a village next to ours - could not be disuaded! He would even admit that he knew it was his bed, but that we must have moved him (in his bed!) while he was asleep (we’re 100 miles from Brighton!). He also became convinced there were certain things on his feet (plasters or cardboard being common complaints), although that may have been a nerve/sensory problem.
I too found the mental changes far harder to deal with than the physical problems (and my husband was doubly incontinent, bed bound and with limited mobility in one arm).
My husband suffered greatly with mental changes - I won’t bore or frighten anyone here with them! PM me though if you think I can help
My personal belief is that these symptoms are far more common than people admit to. Thinking about it, it would make sense - MS is lesions in the brain - so depending on where the lesions are, it may affect behaviour/memory big time. Try getting a neurologist to admit it though, and you may hit a brick wall (I know I did), although the neurological psychologist at our rehab hospital explained it to me, and some some changes were common - but that more major changes were not as rare as people assumed
Thanks for all your comments, our neuro , ms nurse and Dr are all aware of the problems as it has been going on for a long time. He generally tests ok for bladder although he has extreme difficulties with passing urine so I do watch his output carefully. Back in the summer he was hospitalised/rehab for 6 weeks and had to be watched 24 hours as his behaviour became very difficult and bizarre as well as incontinent , total loss of mobility but with no bladder infection at all. No change in meds recently although I am aware that he reacts badly to many drugs which often make things worse.
He is noted as having lack of judgement and insight so on a bad day it isn’t safe to leave him alone , but on other days he can seem perfectly lucid. My mum has experience of Dementia care and says it seems exactly like Alziemers behaviour but intermittent so probably is inflammation in the brain which doesn’t always show up…and of course is never apparent when you visit an “expert” which is so frustrating…felt I was going mad sometimes and imagining it all.
I agree with you too that these behavioural problems are much harder to deal with than the physical ones and it took a long time and a lot of insistence on my part before the neourologist etc accepted that something was wrong, but no answers.
Having a bad few days at the moment but I’m sure it will pass soon (heartfelt prayer) and have asked Bladder Nurse to come and do some tests for urine retention in case that is causing the problem.
My husband does have some cognitive issues - for instance he is quite forgetful at times, sometimes things that are really important. I think this is marked for me as he has always been the one with a really good memory, someone that you could rely on NOT to forget. He also forgets words, or gets them muddled up. Of course what you have experienced is different, but I think cognitive issues are relatively common with MS from what I have read and my own experience.
Well, the Bladder nurse has been out today, we kept a bladder diary this week for her. Apart from flow problems there doesn’t appear to be any retention and no infections…she thinks as I do that there is intermittent inflammation going on in his brain which explains the sudden changes…faulty wiring effect, like today he was fine(as always when medics arrive!) but a few hours later had lost the use of his left hand, that resolved then legs went for a few hours, sometimes it is all physical symptoms and othertimes it is bladder/bowel problems or confusion, sometimes paranoid or aggressive behaviour lasting for a few hours to several weeks. From what I have read and response from experts this seems to be a fairly extreme on the scale of MS usual ups and downs and cognitive issues.
Hi my husband gets confused he forgets our childrens names its my husband short term memory, not long term memory that seems to be affected.If i ask him to many questions, or talk when he is saying something he fogets what he was saying. And stares at me with a blank expression on his face. xxx julie
I think this is one of the hardest aspects to deal with as a carer, my wife has had MS for 24 years and despite the pain of her loosing any mobility & control over her body. Seeing a previously pin sharp brain spiral into a mess of confusion & contradictory ramblings is heartbreaking.
i think so too, i am not a carer,i am the one with ms, and the one who has progressing confusion,i have always said loosing the use of my legs wasnt as bad as loosing my mind,some days i am still as sharp as a tack,other days i dont know how to brush my teeth,and the worse thing is i know exactly whats happening i know when i starting to get really muddled,and there is not a thing i can do to stop it,its a b*****d thats the only word for it.
Sometimes I put it down to her getting lots of unrine infections, she does all the right things but still they plauge her
Early hours of Sunday morning she woke me to say she had dropped the phone down the side of the bed, she never has the phone on her side of the bed & then proceeded to shout at me why I didn’t help her to find the phone!
No amount of reasoning seemed to work so I ended up getting her out of bed and wheeling her round to my side to show her the phone, she then accused me of picking it up when she was in bed and putting it back in the base!!!
Hi all. New to this. My wife was fiirst told about 10 years ago she “probably” had MS, but had no problems until about 18 months ago, since when she has had to give up driving and work (she taught Law at university) and is now permanently in a wheelchair. She now often says that she doesn’t recognise me. This morning she asked me what the name of the cat was. I asked her if she meant next doors’ cat and she said “No. Ours”. We’ve never had a cat and in fact she is allergic to them. My Mother died from Alzheimer’s last year and it’s getting scarily similar to that. Sounds like it’s not uncommon.
Hi, my wife has ms a long time also, but is still young ,she zones out now and again and stares at the ceiling and appears not awake but her eyes are fully open ,its like she sees something . when I speak to her she refocuses and lookes at me ,she has not been able to speak for two years now .Its so frustrating that she cant speak, but I can get her occasionally to nod slightly for yes but not all the time
Hi all ,hadn’t checked the site for a while, so thanks for all the follow up comments. Things havn’t changed much cognigitively, my latest battle is in trying to sort out our wheelchair needs. We recieved an indoor only electric chair six months after he was unable to walk , despite continuously attempting to because he doesnt realise/remember that he cant walk anymore so the falls and ambulance call outs were frequent. He settled into it well with the speed adjusted to very very slow so that he doesnt hurt himself…the problem is going outside, I cant manage a manual wheelchair so he uses his Mobility Scooter outside, but it is a total nightmare due to the judgement issues. It is like demolition derby to take him into shops so we dont do that anymore. He cant judge distances so hitting walls, cars and people are a constant danger and I get yelled at if i try to interfere. That along with him trying to get out of the car at traffic lights and interfering with my driving means that I dont take him anywhere unless it is really essential. I have asked for an upgrade to an indoor/outdoor chair with dual controls but the criteria is that he must be safe to operate the chair himself outside which he isn’t, so it seems as if we will have to buy a separate outdoor only attendent controlled electric wheelchair…our MS nurse cant believe that if you are “more disabled” you cant have additional help so she is on the warpath now…have to wait and see what happens!.. has.anyone else had this sort of problem?
iberiagirl58 I can identify with that, we have 2 outdoor mobility scooters (bought SH) it’s like Death Race 2000 with her crashing into everything so we had to put a stop to that.
Every corner/skirting board in the house has battle scars from her indoor only chair, I can manage with that though as it’s our own property.
What I can’t manage is her hiding things from medical people who are trying to help her! For instance she consistently won’t tell the continence nurse that she’s messed herself while they are trying to do a bowel management program?
We are off on holiday tomorrow and I can see this being anything but a holiday for me, despite the cottage being M2 disability rated as I’m going to be in constant fear of her messing on furniture/floors & the bed because she won’t accept she’s become double incontinent
Yes I know what you mean Nigel…going anywhere is very stressful , I prefer to stay at home where at least the mass destruction is in our own property…maybe your wife has cognitive issues where she simply doesnt understand or forgets that she has continence problems…my husband cant walk but he still leaps out of the chair to get the post and falls on the floor, he cant remember he cant drive (licenced revoked) and insists that he will go out to get something…neurophsyche says the MS has effected part of brain that controls insight and judgement , this is much harder to manage and understand than the physical problems which can generally be dealt with …might be worth talking through with your MS team so that they can identify and be more aware if this is what is happening to your wife. On a practical side maybe take some waterproof covers with you for beds and chairs, although maybe you will find that if the cottage is disability rated they will have considered these problems with the furnishings and flooring choices…if they havnt thats their problem!
I have noticed a deterioration of her cognitive reasoning over the last few years; often you would think she’s drunk most of a bottle of wine as she rambles on about something we have already agreed on hours ago.
Anyway we are away and I have come prepared with Dry-Night sheets, I even took her glide about chair with the built in commode apart and brought that with us (thankfully we have a big estate car)
