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Feeling sad about my Mum

Hi,

This is the first time that I have posted on here. My Mum has had MS since 2000 and started with tripping over here and there to now being bed bound. As things have progressed she has become catheterised, has a colostomy and now is peg fed. Being peg fed was bad enough as it took away her ability to enjoy food. She has been in and out of hospital for the last 5 years or so and is in hospital again now after only coming out 4 weeks ago with yet another bout of pneumonia. I know it is not me that is physically going through this but I am finding it increasingly hard to deal with - me and Mum were close and I can’t bear to see her suffering like this. I had a lovely conversation with her yesterday but MS has impacted her mentally as well, and it is almost like she has Alzheimers. I feel so helpless and I wake up every morning feeling more and more sad.

I know there are no solutions, but I guess I just wanted to reach out to anyone out there who is also going through this and wondered how you do cope and try and be positive about it all.

Nicola.

Hi Nicola

What a sad sad story, and I really feel for you, next to the fact of course that your mum has to suffer that much. May I ask how old your mum was when she was diagnosed? It very much seems that she has the worst version, the primary progressive one.

I have myself the ‘SP version’ of which the progression is much much slower (although I can only speak for myself!; I was diagnosed at the age of 40 in 2003), as I am still sitting in a chair while emailing you (and some marks on my face because I tripped yesterday…). I was originally diagnosed with RR, then PP (…), but it was the very slow progression (unlike your mum’s MS) that made me convince the specialist that it must be SP (as I did not know what a relapse was either).

Are there any other family members around? Although there is no comparison, I ‘cope’ (I do not want to compare myself in any way with your mum, as every different kind of MS is a different illness as far as I am concerned), mainly because of my wonderful wife. I would not know what to do without her as one of our children is mentally disabled too (to hell with ‘Learning Difficulties’ as this term is not clear enough!), which does not make life easier (the word ‘fatigue’ suddenly comes up…).

As in my case, the answer to your question is that I ‘cope’ because of a healthy strong relationship, constantly tested, unwillingly, by my daughter; but then again, I do not have PP.

I wish you all the best under very difficult circumstances.

Kind regards, Jos (dutch by origine…)

Lovely to hear from you :slight_smile: my mum is 61 and my dad is an amazing man who takes care of her - they have been together since they were 18. I think initially we thought she had sp Ms but obviously not… It is amazing all the different forms it takes - some people you just wouldn’t really know as they just have to use a walking stick sometimes. I myself have Crohn’s disease - makes me wonder if there is some kind of link since they are both auto immune diseases. I am sorry to hear about your daughter too -life is tough!

I think it is good just to have like minded people to talk to and realise there are people out there that understand and face similar issues. Meanwhile I am working on some more fundraising for Ms - one event lined up for next year is a marathon - something positive to do to maybe help find a cure one day.

sorry to hear you tripped! I admire you and your perseverance and positivity - I need to work on mine :slight_smile:

Good to hear from you Nicola. I always do that, asking about ‘age’ especially when it comes to (PP)MS… We have an acquaintance who was also diagnosed with PPMS around the year 2000, when he was in his late forties.

He too is bed bound and I suspect that he is in similar sad circumstances as your mother is at the moment. I only hear about him now and then, via a friend, as we have, unfortunately, ‘enough on our own plates’ (as ‘we’ say in Holland…). ‘My’ MS is most certainly not as aggressive as your mum’s, but as I said the combination of the MS with my daughter’s condition, ‘Global Developmental Delay’ (with other words, she acts in many ways as someone less than half her age -BTW she was born in 1997-, next to the fact that she also has, especially at present, serious physical problems), makes life very ‘challenging’ at times…

I was also ‘diagnosed’ with PPMS at some stage, after I had initially been diagnosed with ‘RR’, this due to the fact that I made it clear to ‘my’ consultant that I did not know what an attack/ relapse wàs.

‘We’ later agreed that it must be SP, as I came up with many ‘occurences’ (if this is the right word…) from my (dutch) past, which I could ‘suddenly’ link with MS, next to the fact that ‘my’ MS did not seem to be as aggressive as can be expected with ‘PP’.

What I understood from that acquaintance is, that he could not remember having any problems in the past which could be linked, unlike my case, to MS. Is that the same with your mum?

Bla bla bla :), sorry if I repeat myself at times, I blame the MS :slight_smile:

Kind regards, Jos

Hi Nicola,

I’ve been in a similar boat to you for years… Mum got ill when I was 16, was in and out of hospital until I was 21, then went into a care home as my dad couldn’t look after her. All the things that you talk about ring true to me - the peg, the Alzheimers… everything. Until a couple of years ago I felt like I was constantly walking on eggshells, not knowing when the next call to come to hospital was, or if she’d make it through. As a result, I feel like I’ve become a worrier (often irrationally) because I was so used to everything going wrong and anticipating the worst…

As you say, there are no solutions. I’m lucky in that I have a wonderful partner who is caring and listens to me when I burst. I feel like I’ve just become a bit distant from it all now - I hardly go to see mum anymore because I find it too hard to deal with. Hopefully you can surround yourself with lovely, caring people who listen and look after you.

I know this post hasn’t given you answers but just know that you’re not alone x

Hi there, you’re post is so similar to what my mum is going through. She’s had MS from her late 20s and is now 45. She has gradually got worse and is now bed ridden with only very little use of her right arm. It’s so hard to watch as you want to take the pain away but you can’t. What helps me is the fact my mum is so positive and uplifting. She always sees the brighter side. She’s an inspiration and so is your mum. Mums memory is bad as well, but all we can do as family is listen to them chat to them and make them smile. She has made me a better stronger person today. X

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Nicola, Kat, Lyndsey…how are you all?, and that includes your nearest and dearest which you are looking after.

Have to keep it short for now, as my daughter, whom i’m looking after at the moment (which means sitting next to her till my lovely wife and son return from a shopping trip :)…:(…), demands all attention as usual (which is not her fault btw!, but can be soooo tyyyyyyyyring…)

Kind regards, Jos

Hi Jos, how are you doing? How are you feeling and how is your daughter?

I am good thanks :slight_smile: My Mum is at home which is good. She has very bad mood changes though and can be ‘evil’ one day and then lovely the next. She also seems to hallucinate and ‘see things’… not sure if that is related to the MS or the vast array of medication that she is on!

I try and make her laugh, take care of my Dad and get him out of the house and having a break from being a full time carer - I think we just have to try and be positive - it’s all about positivity right? At least that is what Bear Grylls always says on his survival programs :slight_smile:

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Hi Nicola, nice to hear from you. Mood changes eh… apparently I (or should I say my family…) seem to suffer from that too. I realise now that I have watched the wrong programme for many years… (eg The Jeremy Kyle Show, purely for amusement btw, although I do get a bit bored by the mainly ‘foreign objects’ on there…), maybe I should switch over to Bear Grylls…

I do not hallucinate and ‘see things’… Perhaps the anger I feel towards an ignorant family in Holland is surpressing this…:slight_smile:

HAS it anything to do with the medication…? I have used, amongst other medication, Co-Dydramol/ Citalopram/ Modafinil for 12+ years now, although frustration cannot be treated!

Do I understand correctly Nicola, that you are still living at home, in which case it is not possible to distance yourself at times, or…?

Anyway, take care of yourself, do not hesitate to contact me again if you need to share whatever you would like to share!

Regards, Jos

Hi Jos,

I don’t live at home but live nearby, 15 min walk / few mins drive. My mum is actually on medication to try and stop the hallucinations as they panic her and make her really stressed, e.g. when she thinks there is a snake underneath her bed and really believes it!

I think MS is a condition that effects people in many different ways and there are many variants of it - no 2 people are the same.

Nicola.

Hi Nicola

I just picked up your last message again, and I wondered how things are at the moment.

I have just been to Holland to visit my father and his present partner (my mum passed away in '95), who live in the east near the german border.

I was still able to travel by car on my own in spite of my SPMS…, so yes MS effects everyone in a different way I suppose (fatigue and bladder control are my biggest MS-enemies which are still ‘controllable’ as are my feet…).

Due to frustration and misunderstandings some ‘family repairs’ needed doing which, fortunately, worked out well.

And of course, being away from my ever so, unvolunteerily, demanding daughter was a blessing! (shame on me!..my wife looked very tired…).

Regards,Jos