I’ve known about the MS Society and read posts from the forum for sometime, a lot of which I can relate to. But I’ve never actually posted anything about mine and my mum’s situation or asked for advice.
I’ve been caring for my mum since 2018 after my dad passed away. She has had MS for at least 32 years and which has massively progressed over the last few years. She is now completely chair/bed bound and requires care from carers 3 times a day. She also has regular visits from the district nurses for catheter maintenance. She now requires care in all physical aspects, toileting, washing, dressing, has to be hoisted, etc.
I provide a lot of support with the day to day management of her home (we don’t live together) and anything that she might need that the carers are not able to do.
I can see the toll it’s taken on her, especially mentally. She has become so insular and difficult to be around as time has gone on. She’s not the mum I remember and our relationship has suffered due to the negativity of the situation. I try to stay positive, but it’s hard.
My mum most certainly has severe depression (which is understandable for anyone in her situation), but she won’t acknowledge this or seek any support. Anytime the neurologist asks about her mental health she says she’s fine and is angry at me for saying otherwise.
It just feels like she is done with life and doesn’t seem to have her wellbeing at the forefront of her mind.
I’ll be honest, I’m terrified as to what might come next. How things will progress from here, when things already look very bleak. Is my mum now in the latter stages of MS, what time do we have left and what’s going to happen are often thoughts that plague my mind.
I was wondering if anyone would be comfortable in sharing their experiences of late stage SPMS with me so that I at least have an idea of what’s to come/how I can cope with it all and continue to support my mum.
It sounds like a thankless task, but speaking as somebody who is usually grumpy and bitter it really is appreciated probably. I have to remind myself not to vent my frustration at my carers, bitch slapping and making sarcastic comments is very easy unfortunately.
I ignored depression for a long time because I thought it was perfectly valid to be bloody depressed, but I had a brief conversation with my neurologist that changed my attitude completely. He made the point to me that if he did an MRI of somebody with clinical depression he would be able to show you on the MRI the parts of the brain that had been affected, and show you how they were different to somebody without clinical depression. Because ms affects Random bits of the brain, it was entirely likely that I was struggling with depression because the MS had the damaged the parts of the brain that control depression. Suddenly it was a symptom caused by MS, and not a weakness in my character that couldn’t deal with having MS. It was strange that just thinking about it differently suddenly made me want to deal with it. I’m pretty much the same level of disability as your mother by the sounds of it, with carers four times a day who do absolutely everything for me. It is a miserable existence if I allow it to be, so I try to manage my routine so that it is consistent and repetitive which makes me feel an element of control over my life. It’s not an OCD thing, it’s just gives me a sense of agency.
In terms of what comes next, I’ve no idea if I’m honest. The disability level with MS is mapped on a timeline known as EDSS, and I’m an 8.5 where nine is bedbound and 10 is dead. 10 years ago I was a level four on the scale, but I’m told by my neurologist that my life expectancy is likely to be a little bit shorter than otherwise though not by much so I could be in this position for 30 years. I think because MS is so variable a prognosis is impossible, but pneumonia as a result of food or liquid getting into the lungs owing to difficulties swallowing caused by MS seems a likely candidate I gather.
Depression is a bitch, because it takes away your interest in life and your interest in getting better so it’s like a vicious circle. There are drugs out there that combat it though, so if I could take a drug that would help me walk I’d take it. And oddly I don’t think that the fact I can’t walk is because I’m lazy or because I didn’t try hard enough to maintain my walking ability. Yet I’m comfortable blaming myself for being depressed and not taking drugs to treat it. Go figure.
Good luck with it all, don’t beat yourself up. You’re doing a bloody great job!