Hi, I care for my mum who has SPMS, I’m finding it REALLY hard at the moment and I really need to rant a bit. Hopefully someone might be able to give me some advice too. My mum was diagnosed with RRMS 34 years ago, which turned into secondary progressive 25 years ago. She has many physical symptoms (trouble with balance, fine motor skills, bladder and bowels) but it’s the cogitive symptoms that I find really hard to deal with.
It’s difficult for me to even describe her cognitive symptoms because I feel that I just don’t have the vocabulary to do so. But I’ll give it a go… Basically, over the last 25 years she’s become a totally different person. First of all she has lost all ability to relate to or empathise with other people. When I was a young child she was a very affectionate and responsive mother to my sister and I and she was friendly and empathetic with other people but when her MS became progressive, she lost the ability to do those things. Now she takes no interest in my life or my sisters or anyone elses. She is totally incapable of considering other people’s feelings. She has lost all but one of her friends and family relationships are fraught. Secondly, she has difficulties with memory and understanding what’s going on. She often makes things up (invents events, denies events, imagines conversations etc etc). Thirdly, she is often angry and depressed - her anger often causes her to blow things out of proportion - for instance yesterday she screamed and wailed hysterically and slammed doors for half an hour because the recycling wasn’t collected. Lastly she doesn’t recognise her own illness and is extremely hostile about accepting help or care - she refuses to recognise many of her symptoms, refuses to recognise that she is deteriorating and might need additional help in the future. She lies to healthcare professionals (sometimes because she can’t remember, sometimes because she feels put on the spot, sometimes to deliberately decieve them because she feels it will help her regain some control). I’m sure there are other things too but I can’t think of them just now. All that makes it sound as if I’m blaming her and I’m not. I do realise that these are symptoms of her illness caused by the MS and are no different. Like I said, I feel I don’t actually have the vocabulary to describe it accurately.
At the moment my major worries are food and money. She won’t eat a proper breakfast or dinner. I cook or prepare her lunch every day and leave her to heat it up. The rest of the day she eats biscuits (and sometimes a piece of toast). In the last two years she is also refusing to eat her lunch. I find that she will just eat potatoes or she will cut a chicken breast into 8 pieces and eat one piece everyday. This is not a physical issue - it isn’t that she has no appetite or physically can’t do it. It’s that mentally she convinces herself that this is the right thing to do. At the moment I consider it a good week when she has 3 or 4 proper meals and lives the rest of the time on biscuits. I like to cook things in large batches and freeze in individual portions - sometimes she gets so hungry that she’ll eat 7 or 8 portions of something I’m cooking (that I’d intended to freeze) but she won’t accept that the problem lies with her not eating properly. I have tried everything I can think of (including planning and cooking 3 meals a day for her and trying lots of smaller meals instead) but at the suggestion of any change she becomes aggressive and hostile.
Also, she can’t deal with money anymore but won’t admit it. She has very few clothes and a few days ago I was trying to encourage her to buy a new dress (for 30 pounds, which she can afford) she screamed at me that she couldn’t afford it and then half an hour later she went on the internet and brought a set of 6 garden chairs for 500 pounds. I tried to explain to her that if she spent 500 pounds it would empty her bank account and she wouldn’t have any money for food or bills, not to mention that she already owns garden chairs. After a huge argument she let me cancel the order for the chairs. But this kind of thing has happened before and I know that it will mean that next time she will lie to me about spending money and then she will be shocked and angry when her bank account is overdrawn. If she would only collaborate with my sister and I then she could retain a lot of her independence but the way things are I feel like I will have no choice but to invoke the power of attorney and stop her accessing her own money.
I find that healthcare professionals are very uninterested in the cognitive aspects of MS - they are endlessly supportive and engaged with the physical symptoms but I feel that when I describe cognitive symptoms they don’t even hear what I’m saying. The MS nurse if very dismissive when I try to explain all this. A few months ago with went through an occupational health assemement and mum convinced the OT that I was imagining all this and that a lot of it was my fault. It seems to me that severe cognitive problems are not as rare with MS as it is generally claimed. I feel like there is absolutely no help available at all.
Thank you to anyone who has read this little rant. If anyone has any advice at all I would really really welcome it. Is anyone else dealing with this too?
HI If you just take a quick look at my message under worried then I think you may understand that their is a few of us asking the same questions. I do understand and feel for you, this is also my husband process that has been going on a while. Your words and you and others have helped me understand about the food issue. My hubby has started getting cross about the food issues nothing satifies his taste buds, evrythings bland, but some times the bland food is very very wonderful.
He also has anger issues, I answer a question 2 to 3 times than he says i don’t need to repeat it all the time, gets driver range when its not even required. All sorts of things, I felt and still feel lost and desolate by it all. I am is wife he ignores me then says I dont love him any more, its all heart breaking to watch and listen to.
I personaly feel that this is another process of M S I have treid to speak to M S nurse about his symptoms only to told that it has to come from him? So if moderateors are reading this can they find out if their is any one, anything, we can speak or do to get help for this worry. Thankyou for your good words.
I think what I was trying to say now I have let my mind deal with your words and my fears is that. The M S is sending all the wrong signals. My father had a stroke and would not eat, the consultant said he did not understand that he had to eat, sound also made his head hurt, and pain in M S gives different sypmtoms. And most, most worrying for me is that this is going on then the brain, ceasures or white spots, is damage, the damage is simular to stokes, simular to people who have dementia and much more.
So for me I think I am saying, a brain injury would be treat with cotton wool hands, a demetia patient would be treat with cotton wool hands, and an M S patient would be in a programe or study process. When is it time for cotton wool.
I am new to the forum and only started reading since my husband with relapse and remitting MS has changed a lot emotionally. He is very fortunate to still have the physical ability to go to work and do some physical hobbies, but I am finding his short temper and angry behaviour very difficult to deal with. I have tried to talk to him about this, but he just gets cross and blames it all on my and that I am doing things to make him cross.
I was reading a post from last year about MS and agression and there was a lady on there that I found stated exactly what I am going through with my husband. The post upset me as I feel that I have lost the part of my usband that I feel in love with and he has been replaced with someone that is unapproachable and does not show any affection, love or empathy. I feel like I am in a very similar situation to Crookes above.
I have read some of the forum to my husband and hope that we have a strong enough relationship to approach this together, before it tears us apart.
Thank you for everyone that has and is sharing their experiences as though I have found it sad, I have also found comfort that we are not alone.
I completely agree with the initial comment about professional help for physical issues but very little if any for cognitive issues. A cognitive assessment may be carried out by an OT but what then - nothing! You are left to sort it out on your own. The person with MS does not want to see a GP or anyone else so… I think knowing the possible symptoms of this upper motor disease (i.e. Affecting the brain) and how different brain losses affect the person’s behaviour should be more available to carers. It is not all about mobility and bowels & bladder! Frontal lobe affects initiating tasks for example and acknowledging others. Hey ho!
I sympathise wholeheartedly and I have similar issues so can relate. My partner also suffers terribly from cognitive issues. I usually keep choices to a minimum but even then it can be a minefield. Often I have given my partner a choice of 2 items for dinner only to serve her choice when it’s ready for her to swear blind that wasn’t what she picked. Last week she decided she wanted a bowl of chips with curry sauce, when I put that down she said she had asked for fish and refused to eat the chips and curry sauce. Which wasn’t even one of the original choices and she doesn’t even like fish… We’ve tried meal planning, diaries, big calendars and even technology and nothing seems to help.
She also refuses to spend any money and often we end up going without due to me spending all my money on the bills. She also needs new clothes due but refuses to spend the money. She thinks she only has a little money but truth be told she has significantly more but refuses to give anyone access to it to help her. I used to get her to go into her bank and transfer money over to my account but she would tell her mum on the phone I was stealing her money so I stopped doing that. It also doesn’t help that she gets the tax credits for the kids which she’s adamant is her money and won’t let me touch that either.
I also feel there is so little help for this symptom of M.S. when I spoke to the M.S. nurse she dismissed it, when I spoke to the neurologist about it he only said that it was common and that most sufferers don’t realise they even have an issue. Which of course isn’t helpful.
I have ordered a couple of the pamphlets from the M.S. Society that deal with this subject to see if they help (they are free but you can give a donation if you want)
I believe that latest research suggests there are similarities between dementia and M.S I would agree with that regarding my husband who has ppms . Most of the problems that have been mentioned are familiar to me. The biggest saddest symptom is the lack of empathy my husband is now unable to see beyond his own needs. Totally understandable because he suffers a lot but not easy to accept because I have lost a husband … but it’s not his fault and I will always support him but I am only human …
I am now helping my daughter who has rrms but up until 18 months ago was a full time carer for my husband who had a rare form of early onset dementia. He died in December 2015.
Firstly, I am struck by how some of the cognitive issues with MS are similar to those we faced. It is all to do with part of the brain being disabled by illness. At first I got frustrated by my husband being unable comprehend some mental processes, especially as this was inconsistent, that is he could do it some days but not others. When his mobility worsened I did not expect him to magically be able to manage steps because he had done it previously but loss of cognitive function was a harder thing to understand.
What I would say, is after many years of coping with it, that his good days were a bonus but his bad days were something we just had to both remain calm and get through. I was lucky in that right up to the end he never lost his empathy, but there were problems with eating and drinking. Some things he had liked no longer tasted the same and some things he had disliked, especially sweet foods, he developed a liking for.
He did at times get angry but I think this was a response to being unable to make others understand what it was like in his new situation and perhaps being unable to make sense of it himself.
In my husband’s case, the first area of the brain to be affected by his rare dementia was the visual cortex and this I think is easier to cope with and understand than some other parts which came later. I am lucky that so far my daughter has no mental issues other than brain fog.
I think from my experience, physical disabilities are easier to cope with than mental ones, both for the carer and the person being cared for.
Wow, this is a heavy topic. I’m 47 with PPMS & do everything myself.
My issues have been, getting robbed of anything I was doing. Having all my savings stolen & all my ways of earning money taken by jealous folks. Some folks are jealous others have a home, a garden, a job, a car, a partner & any possessions. Basically a life. I’m supposed to be the sick one, but I think it’s the other way around.
The social services tried to force their version of care on me & destroyed my life.
It’s great that you care for your mum & do so much when she’s having issues.
Hats off to you.
From what I can work out, you both need a break. Get yourselves on a lovely holiday & take it easy out there.
I think things are stagnating & the cob webs need clearing.
Do things for yourself & let your mum do the same. It will boost, both your confidence levels.
Nobody likes to be a burden & some like being a burden. Some folks claim they care & it’s quite obvious what they care about. You don’t seem that way & neither does your mum. Hence the holiday idea. To give both of you, a fresh perspective.
As a wife of a husband who also has cognitive issues he is now being referred to a Neuropsychiatrist.
Might be worth your MS consultant or MS nurse referring you there.
We await the appointment which could be in 8 weeks but at least they deal with the brain aspect of MS.
We once spoke to my husbands MS Consultant and he said if you imagine a piece of cheese with holes in it then that your husbands brain right now. The holes represent the lesions.
Regards
Caz
UPDATE only just got the appointment through to see him in November…I will let you know if any good suggestions
My wife suffers with cognitive problems due to her MS. Recently we visited our MS nurse who mentioned the fact that they think that statins help to stop MS brain shrinkage. The result was a blood test to see if my wife’s cholesterol was up which it was. My wife is now on statins so we shall see if there is any improvement. I am led to believe that trials for this treatment are now in progress.
Lushcaz Will u please keep us posted with any useful info on the neuropsychiatrist, is there any medication to slow this down ? Thankyou any info will be appreciated
My husband suffers with ppms. All that has been said on previous posts resonates with my situation too. My husband had cognitive problems so much so that I had him tested for dementia, he was diagnosed with MS related dementia in 2016. Luckily he does not suffer anger issues, but he does accuse me of stealing, mis-remembers situations, creates memories of things that haven’t happened. I am struggling at the moment finding ways to get him to eat, he will eat one food happily one day but refuse it the next, he will take one mouthful and spit it out, added to his MS he has many other illnesses one of which is Type 2 diabetes, also a problem with not eating, sugar lows etc. I also agree that MS nurses are not interested in any brain/mental problems, only the physical, we had the same problems, nurse flatly denied that there can be any relation with memory issues/dementia and MS, the neurologist was slightly more sympathetic. Having said all this there is very little help to be found, all ideas are available online and via sympathetic health care teams, but it all comes down to the sufferer ultimately, how willing or able they are to help themselves, but unfortunately, like my husband, he is unable to understand his own problems. Best wishes everyone.
My heart goes out to you. I know from bitter experience that sadly there is no hope whatsoever from any health professionals and that leaves you in a very lonely and painful place. I was in that place for 15 years. Take a deep breath and try to carry on as best you can. In times to come you will know absolutely that you, you alone, have done everything that you possibly can. I am so sorry for you. I know the pain and I wish there had been someone to help us. Three years on and I am still in counselling.
My husband has MS and has cognitive problems however he was marked down for mobility with pip because he doesn’t have a diagnosis for cognitive problems but wouldn’t it come under the MS diagnosis as it is a symptom
Carol JM my husband also has ppms and is really like a child now. He can’t even follow TV dramas now without me explaining the plot. Lots of everyday little challenges now become big issues for him. It’s sad for the sufferer and it’s also sad for the carer. I feel I’ve lost a husband and gained a manchild. I will always care for him, well as long as I am able. He has lost his driving licence, fortunately I drive so we still get out and about and we do still have some happy days xxxx
Yes, It is a symptom of MS. I am not sure they assess(give points for) for cognitive issues only physical symptoms ie walking, putting shoes on, balance etc.
The problem with MS is that is fluctuates. One day the problem is there, sometimes less of a problem, sometimes not there (cognitive I am referring to but it is similar with physical activity with heat, tiredness, anxiety, bowels etc etc. A nightmare and it destroys so many lives sadly not just the patient.