Skip to main content
48 posts / 0 new
Last post
Inactive user
Mum's had MS 22 years!!!

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

Inactive user

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

Anonymous

i was in the same position as you my mum had had ms for 14 years (diagnosed yesr before i was born) before she passed away last year, before she passed she had been bed bound and peg fed, she had been in hospital for 6 months to get the peg put in and she finally got let out to go into a nirsing home to only be there a week before catching pneumonia in both lungs again and passing away xxx

I'm sorry about your mum, I'm crying so much reading all these posts. My mum has been bed bound for 8 years and the realisation of what is to come has terrified me and made me so sad.

I am so sorry for your loss.  You and your Mum had a terrible time with this damn illness.  Try to accept that she is not in any more pain and is watching you from above.  May God bless you both.

Roxy, do not let your mum go too far with out help.  Hear is the site that maybe of assistance.  In the UK there are Hospices that require a fee and others that hope for donations.  HospiceUK.org looks like the best place to start your research.  If your dad is as in love with your mum as you indicate, you might start your research without his knowledge on the other hand he might want to be involved to make sure he is involved so she gets the best care.

State side, I do not recommend "Nursing Homes" unless you can pay US$8,000 a month.  I did not like what I saw here and they did not treat my wife well at all, so I brought her home for Home Hospice and then she moved to Transitions Hospice.  This was a great place and they depend on donations.

I am sending this to you to take some of the strain off of your family.  When her body starts to shut down, there is nothing you can do except make her comfortable and give her love and support.  I am always here if you wish to talk.  Best of luck, Jim  

You can always block me if I am saying something that is too hurtful.  Always, Jim 

 

 

 

  

Inactive user

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

Inactive user

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)

Inactive user

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

 

Inactive user

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.

Kailana wrote:

The amount of guilt I feel is overwhelming at times.

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

 

Inactive user

 

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.

 

Inactive user

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.

 

 

Inactive user

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. 

Inactive user

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!!

Inactive user

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.

Inactive user

Anon - just drop me a line, and I'll give you my contact details.  x

 

Inactive user

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

Inactive user

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

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

Inactive user

I'm so pleased I've found this forum. I haven't posted on here before. My mum is at second stage progressive and has been diagnosed for 24 years. Since I was 11. Her decline has been slow, thankfully, but she is now starting to get extreme mood swings and I don't know how to deal with it. Does anyone have any advice? Thanks in advance. Sophie.

Sophie, I am so sorry for you. You have not had much of a childhood and your adult life has a large shadow over it.  Do some research on dementia because its symptoms are what your mum will be like. Remember, she does not always know what she is saying, especially if she appears mad or angry.  Her short-term memory will leave, meaning at some point she may forget your name or who you are.  But she is still your same mum and she would never say a cross word to you if she had control over her mental faculties.  I watched my wife go through this and it broke my heart, and I can't talk or write about it now without tearing up. 

Sophie, my door is open 24/7.  Let me know how you are doing.

Inactive user

My Mum has MS since I was about 7 years old and I'm now 24. By the time I was 17 she went from a walking stick to mostly on the wheel chair and now she is in her bed for most of the day as my Dad who is her carer has to do everything for her now. Just recently he had to start feeding her as her hands are to shaky which was about the last thing she could do on her own. She is in constant pain everytime I see her but for the most part she hides it well and manages to smile for me and my sister. Every now and then my Dad would tell us she was really bad and not to visit as she didn't want to talk to anyone, he said it was like her body just shuts down for 24-48 hours. Earlier was the first time I have witnessed her like this myself, she has barely opened her eyes for 24 hours and just wants to be left alone, any noise annoys her greatly, even someone trying to talk to her she shouts to get out the room. But she has not eaten in 24 hours and not taken any tablets which are to numb the pain, but she says she is not in any pain when this happens. My Dad is stressed out but won't get help as he says this happens every few weeks now. I guess these body shutdowns will become more frequent but i dont really know as its so hard to get information on. My Dad is reluctent to get help and most nurses have been terrible that we have dealt with they just don't understand the illness. If anyone has had similar experiences as a carer on how these like 24-48 hour body shutdowns progress or get worse over time please reply. I know it affects everyone different though.

P.S It's comforting reading other stories, I dont have any great advice. I just had a wake up call today that I dont spend enough time with my mum and I dont know how long she has left. Sometimes I dont visit for a week but she has no life now but seeing her smile dissapear is so heart breaking.

Inactive user

just finished reading all these messages,and have tears running down my face.everyone of them as pieces of me in themhow i feel watching my husband getting worse,he is 47 and as ppms,i wonder howlong we have together.missing him so much alltho his there.its so heartbreaking,i try and prepare myself,my life without him.but its impossible,he is my life.iv relisized i will survive.but i would never get over losing him,his an amazing man person.christine xxx

Christine, I am sure each of us caregivers feels that way, especially if your loved one has a progressive for of this disease.  Earlier on we all pray, try to make deals with God, and offer to trade places.  Eventually, something happens and we realise that the only thing left is to try and accept the reality, love our loved one, and hope their suffering is as minimal as possible.  We don't give up when they forget who we are , the names of the children and worst of all call us by the name of someone who was in their earlier life.

You must not assume any blame for their illness, and work very hard at expanding your support group as much as possible.  Because you are going to need it as much as they need your love and caring.  It is very hard to accept the reality of the situation, especially in your case where your husband is so young.  Seek out new friends, clergy, medical professionals and most importantly good medical counsellors who can help you deal with your future loss.  This is most important because the last battle is the hardest to overcome.  I have always been a loner except with my children and my soulmate.  Fortunately, I have grandchildren whom I love desperately and I think their feelings appear to be reciprocal.  But it does not replace my wife.   Your local vicar is a good source of strength and use him/her/them to give you strength. That is why they have chosen the life and career they have.  They want to help you through and beyond your crisis.

Christine, I am always here.  Write me anytime.  May God bless you in your struggle.  Jim

 

Anonymous

Hi everyone my daughter was diagnosed with ms when she was 18 she was quite up until she was 27 when she had a baby took her straight out bedridden never held her son she peg fed cant move none of her body except her left arm gave up everthing to look after her and my grandson .im housebound to cos cant leave her on her own. Im heart broken she 31 now and nothing as improved .i pray to god for a miracle as she is still only young i wish all of u well and god bless u all as i know what your all going through xx

Your daughter being so young, you already see her degradation, and I am so sorry for both of you.  May God bless and keep you both.  Jim

I know this is an old thread that has been resurrected but reading these stories, as a carer myself, is very sad. These poor ladies with MS are the hidden side of the disease; so many people think MS does not kill, but these stories show that this is not true.

My heart goes out to both the sufferers and carers in this thread; I'm assuming that as the thread is so old that many (all?) of the ladies mentioned have found peace over the past 8 or so years, but there will be others out there who have taken their place crying

I’ve recently been diagnosed with MS

So many people with heart breaking stories and I feel so helpless!  As you have all said in so many ways, it is incredibly hard looking after someone who is so poorly and knowing that everything is getting worse and not better. Add on top of that, the patient is family, everything becomes many times harder because you don't want to make any mistakes and everything has got to be perfect.

I cried so much reading your brave stories wondering how many of you/us are out there battling this horrible desease.  I cannot see any end to it despite all the research going on around the world, I'm sorry to say that but it is how I feel.  I just needed to tell you all how much I admire, love the way you all care for each other.

I have PPMS and my wife who is 8 years older than me and who is also my carer is herself an asmathic.  She suffered a heart attack just 2 weeks before Xmas and had to put up with me trying to look after her!  Our girls would get our shopping but they all have kids so I put my limp drop foot down and told them they had to concentrate on them!  After all they live local and they are but a phone call away.

Jackie is better now and despite suffering such a traumatic event she is back to worrying about me, probably the reason for the attack in the first place!  Looking after her nearly did me in but I couldn't, wouldn't let her down.  We live alone and she is my world and me , here. We get our enjoyment when the girls bring our grandkids around, all then is right with the world until they fall out over the damn games consoles!

Please keep up the good fight and remember that like immediate family, we are a keyboard away from you.  Love to you all from Biggsy xx

Biggsy, how are you and your wife doing?  It has been several months since your post but in the world of MS a lot can happen.  You may recall that my wife passed away 16 June 2018 and my pain is there.  Thank goodness for grandkids!

Let me now how you are doing; maybe I can help.  Jim

Hi biggsy, yeh there sure are a lot of us couples fighting our way through each day, suffering with incurable and some untreatable conditions.

But you know, I go to a hospice every week and also have respite there to ease the burden on my hubby. People there are a million times worse than me/us.

Some of them don't make it to their pension. Helps me realise I am luckier than a lot.

Hope Jackie is coping again and better after her heart attack, bless her.

You sound like a lovely fella and I wish you and your`s all the best.

Boudsxx

I’ve recently been diagnosed with MS

Hi Bouds, thanks for your message, it means a lot.  Can you tell me about this hospice/respite helping hand of yours?  I encourage Jackie to go out with our girls whenever they call about going out, but sometimes it is a battle to get her to go!  I have to promise to stay on my bed and not try to do anything lol.

I don't really like going out any more eventhough I have a battery scooter and all I need to be independent. I don't want to get in anyone's way and all the other stupid excuses one can come up with!!!!!  I'm on fluoxetine for depression and anxiety.  Before I/we were given the diagnosis of my PPMS my utter frustration at my never ending pain and no one being able to tell me what I had got, I tried to end my life, not once, three times!

That in mind you can understand why she is reluctant to leave me on my own!!!!  No proper cure doesn't help but knowing all about it and having our own ways of coping/dealing with the various traits does help abit !.

Sorry just go MS nurse is here!

I’ve recently been diagnosed with MS

Hi, that was quick! Jackie did all the talking and one of my tablets is being increased to help with the pain.  Seems that tomorrow will be a new day indeed !

Catch you lovely people later, best wishes from Biggsy xx.

Hi again Bigs, you could ask your MS nurse about any suitable places to go...that`s how I first got to know about the hospice.

I go Thursday, to a drop in session. It is 10 - 4 and I go 10.30 - 1.30.

Yesterday I had a wonderful neck, shoulders and back massage. It was heaven. I also get Reiki and reflexology. I do crafts...sewing, drawing, or just chatting and eating cake!

There is a mix of people, with conditions like MS, heart issues, cancer, Parkinsons.

It is a warm, caring environment run by the most wonderful people. And it`s all free...even the respite.

Boudsx

Roxy and any others, when you deal with such a serious illness, either yourself or within the family, you will probably develop some kind of mental illness.  When you start life with probably one parent - because the other parent/partner decided to leave their loved one and did not have the courage to stay with their mate and care for them.  As I said in my updated post today, I knew she had MS before we were married but I knew there was no one in world to stay with her to love and care for her.  On top of that, her son's did not want to accept her situation and/or where too busy making money.  Their biggest help was to pay for a move or move us themselves, which was always a disaster.  One of her son's shared her birthday and rarely called or sent her a card.  I cried so much over the pain they caused her.

You did not have an option but your choice was forced on you to learn how to care for your mum.  She has been forever grateful for your love and willingness to give up your childhood and adulthood to the extent she was able to maintain her mental faculties. You can live your life knowing that you did the right thing.

On the issue of your mental stability, I think you are entitled to be very depressed and in need of a well prepared doctor/therapist.  An experienced person is what you need.  You may need just counciling or you may find out your mental situation demands more, such as drugs.  Do whatever, it takes to try and put your life together.  When your mum does leave you, put your life back together, develop friends - not users -, go out and have a good time.  You have probably put off much of your education. Try to get that back, find a trade, an apprenticeship.  You need an education and money to live your new life on.  They are in conflict but many of us do both by taking a little longer.

Now, just in case you think I am mister smarty-pants, I was diagnosed later in life as a Bi-Polar II, Rapid Cycler with Long-term Disability.  I have tried suicide, and failed obviously, spent the first half of my life without medication but finally I am properly medicated, have a B.S.B.A. (4 year degree), married three times but my last wife is the one that had SPMS and passed away, and I have two wonderfully talented daughters, two grandchildren, who still needs their help and love to get by.  I was declared official Disabled in 2007 but earlier than that which got me some small stipend to go to college.

I was raised in a protestant church by myself from 5 to 18 and then became an Episcopalian - thanks to Henry VIII.  My wife was too, but her illness kept us from going much. We were married in her church.  I have returned to church and it has become exceedingly important to me.  I would encourage you to give that some thought.

I will answer any questions I can, if you respond to my post.  Roxy, I have "too many" life experiences and I will take any question your or the other subscribers have.  (Hey, a 73 year old man that wears paisley shoes to Eucharist, and will cry in public is not taken back by very much.  May God be with you, Jim. 

 

 

 

 

 

Hi Veendam47, your life has certainly had it`s up and downs and you`ve struggled through as best you can.

Love the image of the shoes!

One thing I feel concern for in your post, is saying that most people who deal with a person suffering from a serious illness, is that they will `probably develop some kind of mental illness`.

I feel this statement may frighten some newer carers. I dont think it is the case, as I have known many carers who havent become like this.......a sadness and some melancholy could happen, but not mental illness.

So anyone reading this, please dont assume anything.

Much love Boudsxx

Ms. Boudica405, I gave a lot of thought about that statement.  But I believe it to be true, however, I think you are right, as well.  How would you suggest I approach this statement again with the intent of neutralizing it?  I have chosen the enquiries to whom I have responded very carefully but I think you are very right.  Give me some guidence and I will move accordingly.

Regards, Jim  Veendam47

I think it would help some people.Scary to many but only those affected like yourselves would need to read it.

All the best.

Much love

Boudica xx

Roxy, this is Jim form the US.  I hope you do not mind hearing from me but I have been through everything you mention except I was in my 40's when my second wife's MS went from R/R to a Progressive form of this horrible disease. My wife had three son's who turned their backs on their mother when it is was obvious she was in serious trouble.  When you children turn their back on their mother or father for whatever reason, it is not good enough.  

You are are a brave and loving person and your Mum is lucky to have you in her life. Your problems would affect anyone who has to assume such responsibilities at such an early age.  Your Mum is lucky to have such a strong, loving child to care for her.  I am so sorry that you have not been able to have such a loving daughter.  You said you have a younger brother, so I must assume the father placed his needs first and then abandoned the family sometime after your brother was born.  If I am correct I have some words for him that I have given my wives sons, but I will not repeat them here.

Have you discussed with her doctor anything about life expectancy and what signs you can look for.  Waiting and trying to read for yourself is very painful.  You need to expand your contacts with other caregivers like myself who have been to the end of the road.  I am stressing your need to expand your support system.  When she eventually passes, DO NOT BLAME YOURSELF with all sorts of recriminations.  You have given your life to care for her, so their is no blame on you, only lost love that your Mum is no longer with you.

In my case, my wife was eventually placed in a Hospice where she got great and loving care.  We did Home Hospice first but then she required more care than I could give her.  I still pray for her daily.  I do not know about your religious beliefs but in any culture prayer is your strength and an aid to your Mum.  If you are Church of England, seek out the vicar and ask that you and your Mum be laced on the daily prayer list.  I believe that will give you some comfort, as it does me.

We are now connected through the UK MS Society, so I am always here to listen or try to answer any question capable of a layperson. I will pray for you and Your Mum tonight and in the days ahead.  I also as that God look down upon you and bless you both.

Although we are several thousand miles apart, you and you Mum will continue to be in my prayers and my heart.

Always, Jim

 

 

 

I just noticed something in your post that I missed.  If she is bedridden, why is she on calcium pills?  The other os about kidney infections and UTI's.  My wife had a lot of problems with these two issues.  The problem was that she could not fully void her bladder and the old urine would become stagnant and hence the UTI's, etc.  Ask her nurse or doctor if there is something she can do to help her void her bladder.  I assume she wears incontinence diapers so anytime she gets the urge, she can get in different positions to try and improve her voiding.  At some point she was put on a medication (I do not remember what) to aide her voiding.  I would try to get her someone to come in and help her deal with her anxiety and/or PTSD.  I was never in the military but I have it really bad.

I wish you lot's of luck and hange in there.  Bless you and your Mum , Roxy.  Always, Jim 

Good day Roxy, I am Jim (Veendam47) you are free to reach out to me anytime.  We have a 7 hour difference but I have MS friends in the UK because this kind of service is not offered in the US, to my great disgust.  I am a male almost 74 in two months.  I am also a Bi-Polar II, Rapid Cycler with Long Term Depression Disability that Manifested itself at about age 5.   I found only one shrink worth his fee.  He put me on Prozac and it changed my life but I still had cycles that almost cost me my life and I make quick and bad decisions.  But I am still kicking and now reactive 

I married my third wife when after knowing she had MS.  Eventually we determined she had Bi-Polar as well.  I knew her three grown sons would not help her and have come to blame me for her illness and eventually passing !6 June 2018.  I think males are crap when faced with this kind of adversity.  Some have the heart and love to stand firm and stay the course with their partner/spouse.  Yours is the worst I have heard of because you lost your childhood and young adult years caring for your mum at such an early age.  

When did you dad or her partner leave you guys.  Obviously you got a little brother some how.  Does he help out or is he gone also.  

I am going to play doctor - do not worry, not the kind little kids play.

Sounds like she needs as much water as you can get down her.  Find out if she like cold or room temp.  (I hate room temperature water.)  Does she sit up in bed or lay down.  Her head should be elevated with blocks about 3-4 inches.  These can be cut for you at a hardware store, or any large home store. You will need help lifting the bed to place the blocks under the head board.

You are correct about the chest and bronchial complications.  With frequency they may be your moms end.  You must accept what is better for your mum.  She is in a lot of pain and needs to be free of this course.  Consider a Hospice.  That is the first time I felt my wife was truly being cared for.  We used Transitions and I believe they have facilities in Europe/UK.  If you would like me to check, I will be glad to.  My wife needed kindness, not drugs to keep her alive when her body was obviously shutting down.

I apologise if I have been to frank and made you feel bad but you are young and there is a good life for you at there.  Ask for God's help in making these very difficult decisions.

I will check on Transitions and contact me at anytime.  May God bless you always, your friendJim

Good day Roxy, I am Jim (Veendam47) you are free to reach out to me anytime.  We have a 7 hour difference but I have MS friends in the UK because this kind of service is not offered in the US, to my great disgust.  I am a male almost 74 in two months.  I am also a Bi-Polar II, Rapid Cycler with Long Term Depression Disability that Manifested itself at about age 5.   I found only one shrink worth his fee.  He put me on Prozac and it changed my life but I still had cycles that almost cost me my life and I make quick and bad decisions.  But I am still kicking and now reactive 

I married my third wife when after knowing she had MS.  Eventually we determined she had Bi-Polar as well.  I knew her three grown sons would not help her and have come to blame me for her illness and eventually passing !6 June 2018.  I think males are crap when faced with this kind of adversity.  Some have the heart and love to stand firm and stay the course with their partner/spouse.  Yours is the worst I have heard of because you lost your childhood and young adult years caring for your mum at such an early age.  

When did you dad or her partner leave you guys.  Obviously you got a little brother some how.  Does he help out or is he gone also.  

I am going to play doctor - do not worry, not the kind little kids play.

Sounds like she needs as much water as you can get down her.  Find out if she like cold or room temp.  (I hate room temperature water.)  Does she sit up in bed or lay down.  Her head should be elevated with blocks about 3-4 inches.  These can be cut for you at a hardware store, or any large home store. You will need help lifting the bed to place the blocks under the head board.

You are correct about the chest and bronchial complications.  With frequency they may be your moms end.  You must accept what is better for your mum.  She is in a lot of pain and needs to be free of this course.  Consider a Hospice.  That is the first time I felt my wife was truly being cared for.  We used Transitions and I believe they have facilities in Europe/UK.  If you would like me to check, I will be glad to.  My wife needed kindness, not drugs to keep her alive when her body was obviously shutting down.

I apologise if I have been to frank and made you feel bad but you are young and there is a good life for you at there.  Ask for God's help in making these very difficult decisions.

I will check on Transitions and contact me at anytime.  May God bless you always, your friendJim

Good day Roxy, I am Jim (Veendam47) you are free to reach out to me anytime.  We have a 7 hour difference but I have MS friends in the UK because this kind of service is not offered in the US, to my great disgust.  I am a male almost 74 in two months.  I am also a Bi-Polar II, Rapid Cycler with Long Term Depression Disability that Manifested itself at about age 5.   I found only one shrink worth his fee.  He put me on Prozac and it changed my life but I still had cycles that almost cost me my life and I make quick and bad decisions.  But I am still kicking and now reactive 

I married my third wife when after knowing she had MS.  Eventually we determined she had Bi-Polar as well.  I knew her three grown sons would not help her and have come to blame me for her illness and eventually passing !6 June 2018.  I think males are crap when faced with this kind of adversity.  Some have the heart and love to stand firm and stay the course with their partner/spouse.  Yours is the worst I have heard of because you lost your childhood and young adult years caring for your mum at such an early age.  

When did you dad or her partner leave you guys.  Obviously you got a little brother some how.  Does he help out or is he gone also.  

I am going to play doctor - do not worry, not the kind little kids play.

Sounds like she needs as much water as you can get down her.  Find out if she like cold or room temp.  (I hate room temperature water.)  Does she sit up in bed or lay down.  Her head should be elevated with blocks about 3-4 inches.  These can be cut for you at a hardware store, or any large home store. You will need help lifting the bed to place the blocks under the head board.

You are correct about the chest and bronchial complications.  With frequency they may be your moms end.  You must accept what is better for your mum.  She is in a lot of pain and needs to be free of this course.  Consider a Hospice.  That is the first time I felt my wife was truly being cared for.  We used Transitions and I believe they have facilities in Europe/UK.  If you would like me to check, I will be glad to.  My wife needed kindness, not drugs to keep her alive when her body was obviously shutting down.

I apologise if I have been to frank and made you feel bad but you are young and there is a good life for you at there.  Ask for God's help in making these very difficult decisions.

I will check on Transitions and contact me at anytime.  May God bless you always, your friendJim