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?