Mum's had MS 22 years!!!

Caring for someone with MS
21

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

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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.

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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.

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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

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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

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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.

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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

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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

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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

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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

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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!

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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.

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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

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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.

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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.

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Hi Veendam47, your life has certainly had its up and downs and youve 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

1 Like
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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

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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

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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

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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