HI everybody, long time no speak… It’s a long one so you have been warned… So my mum has had MS nearly 22 years, she was diagnosed a year before falling pregnant with me. My mum is now totally bedridden and is unable to do anything for herself, she also has what I can only think of as “trapped” syndrome, in the sense she is unable to communicate fully, often losing track or interest in conversation and finds it difficult to construct a long sentence however she is totally aware of what is being said to her, I just feel she’s able to talk normally in her head but because of the severity of her MS she finds it hard to converse normally… I will be 21 in a few weeks and I have been her carer all my life. From as young as 3 I was able to get my own breakfast and help with menial tasks around the house, at the age of 5 when my little brother was born I also took on a large roll in caring for him. Mum has not always suffered greatly with MS but through the years her MS relapsed quite a bit and as a result she has suffered greatly, the MS has contributed to my mum having a stroke, kidney stones (mainly due to medication) and to various infections; mainly chest and kidney/urinary infections. I believe the chest infections are due to her bedridden state, because she is unable to move/exercise I feel that her diaphragm isn’t as strong as it should be, this results with her being unable to cough and dislodge phlegm from her lungs, which in turn causes chest infections. We (my family and I) have learnt to spot when mum may be getting an infection and now are able to get antibiotics to treat it before it becomes another potential hospital stay, where she would surely die of starvation if it were not for us visiting every day to feed her. The kidney infections were mainly caused by her calcium tablets solidifying within her kidneys, around 3 years ago we nearly lost her as a stone become lodged within a tube, septicemia set in and she was rushed to hospital, she was in a coma for 2 weeks and during that time were told she could die at any time, it was a very distressing time for all of us…I suffered a nervous break down and believe withing that time the onset of my personality disorder became clear. It took another 5 weeks to rehabilitate mum to a point of stability, but since then her MS has taken it’s tole leaving her very weak and unable to feed herself or control where she looks. My mum is my only parent and I long for the days that I could have a conversation with her, she was my best friend… my only friend, and I feel as if I have lost her. All I have is memories and many of them are various times visiting her in hospital, or seeing her leave… don’t get me wrong, there are good memories too, but it saddens me to think that that is all they are now. So my question is this; How many of you are effected by these issues? and How do you cope with dealing with someone with such sever MS? Especially when it as close as a parent/child? Thanks for hearing my rant, I just feel there is little info for those who care for someone with such advanced MS, or people that may have also developed some sort of mental disorder because of such a traumatic past… Hope to hear from someone too, Roxy xXxXxXx
Hi Roxy, Thanks for your post. Sorry if this is even longer than yours! I came onto the site to see if there was anyone else caring for someone with severe MS, as watching my Mum slowly decline is tearing me apart. Reading your post made me feel less alone with it all so thank you for that. It also made me remember the happier times and how far I have come personally. My Mum has had MS for over 30 years and is in a nursing home unable to do anything for herself. She is almost completely bed bound except for occasionally being hoisted into a wheelchair which she hates because it’s uncomfortable. Her mind is going and I don’t know how much she understands anymore. She knows who I am but I’m not sure she could remember my name. In the last few weeks she’s had a chest infection and this has made her even weaker and now I can’t understand anything she says and she seems to have totally lost interest in the world. I didn’t think there was much of her left to lose but I was wrong. It’s torture to see her getting even worse and I just miss her the way she was. I’ve cared for my Mum all my life although she wasn’t always this ill. My Dad died when I was little so she is my mum & dad to me. Growing up was difficult and best described as survival. I couldn’t talk to anyone about things because how could anyone understand unless they have been through it themselves. I’m trying to think of an answer to your question of how to cope. I haven’t any magic answer but I became a stronger person because of it. I eventually developed a life which didn’t totally revolve around Mum’s illness and this is what keeps me going now. I have two young children and I’m just grateful that Mum got to meet them. (she spent 3 weeks on a ventilator whilst I was pregnant with my eldest) I hope this helps in some way. Your Mum is lucky to have you, and I’m sure that she wants you to be happy too and that might mean putting yourself first sometimes. Take Care
Dear Roxy, I am in the same boat as you more a less and now more than ever need someone to just understand exactly the extent of how ill my mum is. My mum was diagnosed at 18 and she is now 54, im 24. Over the years i have seen her get worse and worse and now the age that i am now can see how badly it has effected me. My family are very close, my dad me my sister and my mum. I feel very much alone asi feel i cant talk to my dad as he has his own pain to deal with as it his wife and she is his world and my sister is alot stronger than me. Every one else i shut out as they just dont get it and give me the awwwww and your so strong shit i dont wanna hear coz i dont feel strong and alot ofmyfriendsjust dont give a flying monkeys, Im watching my mum die and it kills me as we are so close. She can no longer speak and is peg fed. She cant swallow her spit as can cause pneumonia so spends her life dribbling and choking. As for movement, we get an odd finger movement and she can still move her head. Just makes me cry writing this. Its sooo hardd i cant bare it at times and just wish it wasnt real. Do you feel itsaffecting you in a bad way like me? i have an anxiety disorder now and spend my life morealess tight chested. i know why… because in 09 we nearlylost her and spent 4months in ICU coz she got pneumonia and septasimia from still trying to swallowfood, she made it coz shesmy mum an amazing woman,but has left me scarrd with what i saw, Do you feel like this? I miss the old emily, the one who used to smile and be care free… i dont like the new emily and dont know how to bring her back. xxxx
I am crying reading this post and the responses, because I genuinely believed I wa the only person in this position and wished I had read this article sooner. My Mum passed away this morning, she was 60 years old and had batteled with MS for over 30 years, she was diagnosed when she was pregnant with me. My Dad left when I was 7, and as I was an only child, I became Mum’s sole carer. I remember my Mum getting really bad around the summer of 1993. It was really hot that summer, and has we know heat is not good for MS sufferers. Before then, she had a Zimmer frame and a walking stick and could still drive with hand controls. Before after that summer, she lost mobility and from then on had to use a wheelchair. For some reason, my Mum’s side of the family have always seemed to be embarrassed about my Mum’s illness or maybe they just didn’t know how to deal with it - I am still not sure about that one. We used to go on holiday, and even though I was young, they would leave me to look after Mum and not really help me. Mum was doing OK until around June 2012. Before then, she lived on her own, as I left to go to uni in 2000. But she had carers that came in 4 times a day and was happy to be that way, I went home as often as I could. But one day in June, the carers called me to say they had called an ambulance because Mum seemed unwell and couldn’t breathe very well. This is where the beginning of the stressful last 7 months started for Mum. In the end she was in and out of hospital 5 times. No one at the hospital seemed to know how to cope with Mum, and just wanted her in and out of hospital as quick as possible rather than solving the problem ( which was dehydration and constipation - symptoms of MS). One time she went in, the paramedics lost the letter they should have given the hospital from the GP, so they sent her home without doing any of the tests the GP had wanted!! Another time, she was being discharged, but they left it to the last minute and I could not get out of work. I had been there previously and therefore stupidly trusted the paramedics. Whilst I was at work, I got phone from one of mum’s carers, panicking because they paramedics had dropped Mum home, but had taken the key from the key safe and left it in the house so they couldn’t get in. To make matters worse, they hadn’t even put Mum in her specialised chair, they just dumped her on the sofa, and they could see Mum about to fall off the sofa (she only had mobility left in her right arm). I have never been so angry in my whole life. I raced home from work and it was the longest 45 minute car journey ever. After the 5th hospital visit, social services said that it was no longer safe for Mum to live at home and she would have to go into nursing care. It was the worst decision I have ever had to make - the one thing Mum was always adamant about was that she wanted to remain in her own home. But I knew that she just did not have the ability to look after herself anymore - someone coming to help her 4 hours out of 24 just wasn’t appropriate anymore. But luckily I found a fantastic home, where the staff were all trained nurses and actually had knowledge of MS. As many others have you have written, my Mum’s mind was going, she couldn’t talk, couldn’t feed herself or get a drink. She was literally bed bound and it was heartbreaking to go and see her like that. The change in her in those 7 months was devastating for me and I just felt like I could see her fading away and there was nothing I could do. Then today, after the doctor had been to see her to treat another chest infection, she had been quiet perky and actually eaten some food. 15 minutes later the staff at the home went to check on her and she was gone. I am heartbroken, but coming on here tonight has made me realise I am not as alone as I thought I was. Would love to hear from anyone who is or has been in my position, as sometimes it feels like the loneliest situation to find yourself in, and it’s hard to find people who understand. Cat Xxxxx
How heartbreaking to read your stories girls and realise that you are having no lives of your own and affecting your mental health too which is hardly surprising. I am in a different position as my partner already had MS when we met and I made the decision to marry him and become a full time carer after several years and some idea of what I was taking on. I draw so much strength from my own beloved daughter and wonderful parents who are there for me when things get tough. Who do you have…it must be so hard for you. Your mums must be so proud of you even if they cant say or show it. Love and hugs to all you youngsters coping alone…be happy to be a “spare” mum to any of you who need a shoulder to cry on x Kate (aged 53 with a lovely 30 year old daughter)
dear girls, all of you have so much in common and as you say, it does help to talk to someone going through the same things.
Cat, you will be feeling even worse with losing your dear mum just yesterday. i know how dreadful I felt when my mum died…followed by dad just 3 weeks later. I feel for you.
I am the one who is cared for in our house. i was told i had PPMS for years and last Oct, was told it isnt MS, but it is incurable and has taken a lot from me.
My hubby is my full time carer, but i do have 3 other part time ladies who give my hard worked hubby a rest and time to himself. I often look on this board to see how carers are coping. I have a need to tell you how appreciated you all are. I also know it is never ending, and difficult work. Your needs are often neglected or ignored.
What surprises me is that none of you had any help to look after your mums. Didnt the social sevices offer anything? And what about the carers Project, which is supposed to be a nationwide organisation, assisting carers?
It doesnt seem at all right that young children should be left to look after a parent and sibling.
Although you are all here, telling us how hard life is and how badly affected by MS, your mums are, it is quite uncommon that MS affects sufferers so badly. I just want to say that so other carers will not be terrified of what may happen to their loved ones. Sadly for you, that wasnt the case, I know.
I hope you didnt mind me butting into your post/replies, i just want you to know I think you are all wonderful people and your mums are/were lucky to have you.
very special love, Pollyx
Hi I’m writing this as I sit watching my mum sleep. She’s just been discharged today after being in hospital for 2 weeks being treated for a UTI. Despite voicing my concerns repeatedly to the medical staff mum has come home weak, confused & unable to even lift her cup. Mum was diagnosed 7 years ago but is believed to have had MS for 20+ years. I’ve watched my mum get slowly worse and when I speak to her neurologist the answer I get is " your mum has a difficult case of MS" At the minute mum has carers call 4 times a day but the state she is in now I’m having to phone the social worker tomorrow as its not possible to heave her unattended between calls. I work full time but I call every evening to make mums dinner. I wouldn’t ever not call but it takes its toll on me & I find I’m sacrificing time with my kids as often I’m not getting home until 6:30/7:00 pm. The amount of guilt I feel is overwhelming at times. Do I care for mum or do I care for my kids? I dread making the phone call to the social worker tomorrow.
Please try to remember that there is no perfect solution. I think that sometimes carers feel that if we try hard enough, sacrifice enough, grind ourselves down enough, the ‘right’ solution will appear. It will not. Sometimes just acknowledging that to ourselves can help a little. It can free us up to look at the situation as it is, rather that how we wish it to be. Things are not as you wish them to be - and this is not your fault!
Alison
x
Hi Kailana,
I think it is important not to feel too slim while looking after for both your kids and your Mum, you should consider the scenario a present to your kids. As this is an opportunity growing inter-generational characteristics. Your kids will bring these for good.
Hi Kailana,
I think it is important not to feel too slim while looking after for both your kids and your Mum, you should consider the scenario a present to your kids. As this is an opportunity growing inter-generational characteristics. Your kids will bring these for good.
My husband has a very aggressive form of PPMS. He was dx 10 years ago, not long at all really, but we’re already at end stage. Everyday a bit more of him ‘falls off’.
Everyday my heart breaks a little more.
It’s obliterating him and tearing me to pieces.
OK -
Messi - as a widow of someone who has recently died of MS, and has 2 small children (5 and 8) I cannot agree that seeing someone they care deeply about suffer like that does small kids a lot of good. Yes, mine are old beyond their years, but the things they saw/had to assist with? No kid should have to deal with that. That is not a present. My eldest has had a counsellor from the age of 6 to help him deal with his emotions.
Kailana - please TRY not to feel so guilty. I know I did, and still do. Guilt for not spending time with my husband, Guilt for not having enough time with the kids. Eventually I spoke to my husband - told him he could have as much of my time as he wanted when the kids were at school - but after that it was their time. Did the guilt go away? NO! But at least I tried, and that’s all I could manage. My kids lacked attention as did Steve - don’t even go there with time for myself. It’s an emotional juggling act - I’m not sure there are winners or losers when someone needs that much care, just losers. TRY not to beat yourself up over it - just do your best xx
Anon - I sympathise greatly. PM if you want - my husband had only been diagnosed 7 years, and passed away in December aged 43. And his diagnosis was RRMS!!! I know what it’s like to dread the mornings because of what may now be wrong, dread the nights because you knew you’d be woken (if you got to sleep at all). Just drop me a line and we’ll “talk” xx
I’ll go now - robably said far too much!!
Thanks sje.
I don’t often come on here and I really don’t know what made me post, but I feel better just for saying it.
Anon - just drop me a line, and I’ll give you my contact details. x
Line dropped, thanks sje
Hello all
Haven’t been on here for quite a while, I seem to spend far more time on my native country’s website! (The Netherlands)
Just logged in and read all your lovely, sad and heartfelt stories and comments [wrong link removed by Moderator]
I was also moved by the fact that, in many cases, there is a combination of misfortune. I was (officially) diagnosed at the age of 40 in 2003, but can actually relate back to MS like symptoms, based upon my own conclusions, in my pre-early teens (maybe starting with jaundice at the age of 7?).
I married a wonderful english lady in 1996 after having emigrated in 1995. Our first child, a daughter, was born in 1997 in a local hospital (under dubious circumstances for as far I am concerned). It soon showed that my daughter developed at a very slow pace, and was eventually ‘diagnosed’ with ‘Global Developmental Delay’. She has (severe) special educational needs and still visits the SEN school where she started at a very young age.
Soon after my daughter’s birth, my wife fell ill due to a brain haemorrhage, for which we blamed the utter amateuristic treatment by a foreign doctor,[name removed by Moderator]. He claimed for example that my wife was going to have twins, as he took my wife’s quick heartbeat for that of a second child! (in spite of ‘it’ not showing on the monitor).
A healthy son (is he!) was born in 2001, and as I said, I was diagnosed in 2003.
My wife has ‘recovered’ for as far as this is possible after her ordeal; she is the main bread winner now, working as a P/T music- teacher/ therapist. I am going downhill, but thankfully at a slow pace. I’ve been declared ‘unemployable’ more than a year ago. I was diagnosed with RR ‘to start with’ which became ‘SP’ (I could for example not refer to recent attacks/ relapses but ‘felt’ the MS ‘all the time’).
If it would not have been for my daughter, then I suppose I would still have been working although P/T (fatigue!). However, the combination of aforementioned facts have made it almost impossible for me to hold on to a job, the supervision over my daughter being the biggest problem when my wife is working (plus the fact that I have been treated as s-h-i-t by some employers!; if only I would have the energy -re MS fatigue-, the time -re supervision daughter-, or the money -re wallet-…, to fight injustice!).
Although at times we can, emotionally and financially, just ‘keep our heads above the water’, we are still a family unit. This in spite of relationships, especially with family members, suffering, mainly due to ignorance for as far as I am concerned (must admit, I am not an easy one myself…, still my wife deserves better!).
We still have a laugh and a glass of wine (if my bladder permits that is :)…), although we do have words at times, ‘pumped up’ by our own circumstances, or a tear when experiencing ‘anything’ of an emotional nature.
The stories here are very meaningful and ‘constructive’ (although I hate the word ‘constructive’…, ‘pro-active’ is then not far away…, fatigue!), thank you for opening up!
I’ll stop my rambling now! (come on, have not been on for a while…:)…)
Regards, Jos
Roxy aand whoever is outhere is a similar position,
Hey,
Im 26 and care for my mum who is 57 and was diagnosed when she was 18.
My mum is at the stadge where she can no longer speak, or eat and is peg fed and even on the best day lip reading is next to impossible. We are constanlty battling with Pneumonia due to her aspirating on her saliva and use a suction machine, intense ohysio to try and keep it under control.
The last few years have become so hard, being so close to loosing her everytime she gets a chest infection spending months in intensive care. Thank goodness my dad has prvate healthcare or she wouldnt stlll be here.
I have been searching fo years to find somebody in the same situation as myself and would love to have a chat if your up for it.
Its the hardest thing in the world watching someone who you love sooo much, suffer so badly.
Un believable that she still smiles.
xx
Hi Everyone
I’ve not posted on here before and will keep it brief.
I too am caring for mum who is 56, and was diagnosed in 1999. I believe she is at ‘end’ stage and desperately looking for advice to help me through this very difficult rollercoaster full of anxiety and sadness.
I can relate to all the above posts and would be really grateful for some advice.
thanks
Hi ihate MS!!!
I would love to chat with you!
I have been searching for years for somebody who is in the same boat as me! ill send you a message! x
A little late to the party but reading these messages has, for once, made me feel like I’m not the only person who has it badly.
Like many of you, my mum was diagnosed with a severe form of MS in 2003. She’d have symptoms for about a year - difficulty raising her feet when walking etc. She’s also had a bout of strange paralysis when I’d been born and had prayed that if it was MS to stay healthy enough to see me through school. Strangely enough, when she was diagnosed I was 16 years old and had just done my GCSEs. It really felt like my life had changed overnight. I always draw the comparison that a year earlier my biggest worry had been a boy I fancied not liking me back but when the diagnosis came I matured almost instantly.
Despite her fierce will that she’d ‘never end up in a wheelchair’, her mobility declined at a heartbreaking speed. I still have visions of her shuffling in the house and lived in constant fear that she would fall.
Five months after her diagnosis, she had a seizure in her sleep. That was the first major MS issue we had and I can still remember feeling like my heart was being torn out of my body as I waited for the ambulance to arrive. I think that was the day my fear of phone calls began - waiting for my dad to call me from the hospital was excrutiating. I remember being told she mightn’t make it through.
She spent a few weeks in ICU, HDU, a regular ward and was discharged. A few weeks later, she got a bladder infection and went back to hospital.
This went on for months, everytime I lost a little bit of her. Cognitively she was falling apart. I remember a particularly weird relapse where she had to have a mental health assessor visit the house because she was saying bizarre things. On the very same day that happened, I had to go and sit my AS Levels. College was great fun…
Five years after her diagnosis, she moved into a care home. That was one of the hardest parts for me. I could hardly cope and was prescribed anti-biotics to try and stop me from crying every-other-minute.
Although I used to visit every other day, my visits are few and far between now - I’m finding it too hard to see her the way she is. Lying in bed, unable to move, barely able to speak, unable to recognise her own daughter. My brother doesn’t go at all. In his mind, he doesn’t have a mum anymore.
Christmas is coming and I’m pulling my hair trying to think of where I can spend it - I can’t face going to the care home for another year, trying to give presents that she can’t open/that she can’t stay awake long enough to look at.
I feel like my life is in limbo. The past decade has been absolutely torturous seeing how horrific MS can be. Having my mum ripped away from me.
My dad visits her every day. He is disabled too and has his own issues - if the very worst thing happened I don’t know how he’d cope.
I feel like I’ve grieved for ten years and I’m still grieving. The only way to move on would be for the ultimate worst thing to happen and I can’t fathom that.
Sorry for such a rant… I know I’ve given no advice - there is no advice to give. But hopefully it will make people feel like they’re not alone.
xxx