World is falling apart :(

Hi, I just registered today to vent out some really heavy emotions. My aunt, now 45, was diagnosed with RRMS in 2000, however, none of us knew about it until after she experience a severe relapse in January 2013 which put her in hospital for a week. Prior to the attack, she was having balance issues and vertigo (since November 2012) but I personally think she was experiencing symptoms all the way from summer. When the nurse at the hospital told us it was her M.S, we were shocked (I did not know what it was back then, I had only heard of it a few times).

My aunt said that she didn’t want anyone to worry about her or treat her like she was ill so she decided not to tell us when she was dx’d in 2000.

My aunt, where do I start? She is honestly the most amazing aunt anyone could possibly have. She does not have kids of her own but she has treated all my cousins and I like as if we were her own children. I have so many beautiful memories, she is honestly the definition of the word “cool”. She would spoil us all and was everybody’s rock. She was completely independent but because she isn’t married (divorced 2 times) she lives with my grandma because she doesn’t want to move out and leave her all by herself.

So anyway, my grandma and my aunt have lived next door to us ever since I was about 4 years old (I am now 19). After her severe relapse in Jan 2013, my aunts health has slowly gone from bad to worse. At first she was just having mobility issues which only included some dizziness whilst walking. By summer 2013, my aunt seemed to have gotten a little better and was finding it easier to walk, her mental state had changed a little. Not drastic, but just a little to the point where we noticed. She seemed to be doing pretty well until September 2013 which is when began using a cane, after a month, she began falling over a lot whilst trying to walk. She fell a few times on our street and my mother and I would have to run outside and help her up (my aunt always laughed) as my mother and grandma would tell her off. I miss those times.

Anyway by April 2014, my aunt could no longer walk more than 20 metres and by June, she was wheelchair bound and could only stand and walk a few steps before her legs gave in. She was always stubborn and always fought against her M.S, even when she couldn’t walk, she would somehow find a way to walk. She would hold the wall and walk and she fell so many times yet she just carried on trying. I also forgot to mention that by now, her cognitive issues were increasing, her left eye was slightly blurry and her speech was a little slow. She also had one of those hospital beds with the reclining mattress placed in the living room where she has been sleeping ever since June 2014.

Now this is where my heart just aches, her health began deteriorating further since then (just when I thought she was getting better) and she can no longer walk. She has incontinence and bowel problems which means she has to wear adult diapers (since August 2014) her speech is now very slurred and her voice is very weak/tired and she has memory problems and sometimes can’t even recognise us. She’ll have to stare at us for a few seconds until she realises and shouts our names in delight. she still has use of her arms and hands but I don’t think they’re that strong anymore. She no longer uses her smartphone (she loved her phone) and refers to her home landline as the “black phone” which she now uses to speak to her nurse whenever she calls.

She’s been like this since November and it’s heartbreaking and I feel like I can’t take it. I just wish this was a sick dream that would end. We’re all sad for her but I am having an extremely hard time coping. my grandma is her carer and she feeds her, clothes her and she used to shower her twice a week (they have a shower in the garden) which is directly outside the living room). My aunt has gained a lot of weight and cannot sit upright, so whenever my grandma has to get her out of bed and into the wheelchair, she calls my dad over and they both pick her up and put her into the wheelchair. My aunt is in a lot of pain, especially when she has to sit upright, she groans and it breaks my heart. I don’t know whether it’s just muscle weakness in her back or whether it’s the nerves in her spine. This past month, due to the fact that getting my aunt out of bed is too difficult for my grandma, she now only showers her once ever two/three weeks so my aunt has started to smell. It’s so heart-aching and upsetting I don’t know how to cope.

I went to see her on Sunday and seeing her just laying helpless on the bed, staring up at her ceiling (even though the tv was on) made me tear up. I know she’s in pain, how severe? I do not know but I know she suffers each day and she seems to have become so weak. When she breathes, it sounds similar to the way someone breaths when they are asleep (deep breaths) she also has swallowing issues (not so bad now) but she does seem to cough and choke sometimes when my grandma feeds her. She just looks so…different and by different I mean a very bad different. I can’t bare to see her like this, she’s now disabled. I’m not sure on her mental

health but she’s obviously depressed but acts like she isn’t so WE don’t feel sorry for her, so WE don’t feel sad. She hates talking about her M.S and we’ve offered so much advice lately after researching daily. I suggested a change in her diet (OMS diet) and she just doesn’t respond to it. She nods and when she does that nod I know that deep-down she doesn’t agree. A few times, she cries and calls out “mum” and then when my grandma hurries up to her she says “take me home. I want to go home”, and my grandma has to convince her that she is at home. She’s done this twice when me and my cousins have been round and my grandma has to point towards us and say “look, all your wonderful nieces and nephews are here. you’re home”. On Sunday it was painful to watch because my grandma was out for half an hour and I was with my aunt and as soon as my grandma returned, my aunt called her and then started crying. A few seconds before she cried, she looked like she wanted to say something but couldn’t get her words out and then she cried and said “I want to go home”. I felt like I was being stabbed, it is so so so so terribly hard to see the person you love in such a miserable and poor state. She asked me to recline her mattress and so whilst I held the button that controls the position of the mattress, my aunt grabbed hold of the small handle-bar above her bed. A few seconds after, she grabbed hold of it again and then again after that. I can’t imagine how much fatigue and pain she is in. Does she feel like this all the time??? What kind of life does she have? She wakes up and lies on her bed all day. She’s probably in her wheelchair for 20 minutes a week.

social services called to ask about my aunt and they had no idea that she has gotten this bad (since summer 2014). They will be coming over on Thursday and fill a form out with us which will allow them to make further changes to my aunt’s and grandma’s home. My aunt really needs a hoist to help her out of bed and changes to their bathroom as well.

I’ve watched my aunt decline slowly from being a strong, self-reliant independent woman to being bedridden with cognitive issues, slurred speech, very poor sight in one eye, memory issues, bowel problems and incontinence. I’ve been feeling absolutely depressed since January. On Sunday about half an hour before I left, my aunt was falling asleep and I noticed that she was snoring very loud and would stop breathing for a few seconds which would lead to coughing and choking in her sleep which would wake her up. I’d run towards her bed and ask her if she wanted me to recline her mattress a little and she nodded. Even after, she continued to choke after a few minutes (I am convinced this is sleep apnea). Thankfully, a few minutes later, my grandma, my mum and my mum’s sister arrived (who in fact has a disabled child who cannot walk) and when she saw my aunt choking she immediately instructed that we turn my aunt on her side. once we had done so, my aunt said she felt better and my grandma said that my aunt has been sleeping on her back for ages and snores very loud. From now on, my grandma makes sure my aunt sleeps on her side. I’ve read that sleep apnea worsens fatigue in m.s so could this be why she is SO bad right now?

lastly, whilst my aunt was trying to sleep on Sunday, I noticed her leg. It moved twice, im not sure if this was a spasm but it moved (kind of looked like she wanted to bend her leg) I immediately said "did you just move your leg by yourself?) and she tiredly went “hmmm”. I don’t knew whether this was a spasm or whether she generally tried to move her leg. My grandma also said that sometimes she’d come down in the morning and see my aunt sleeping on her side. something gave her the strength to turn herself over during the night.

Before I left, I looked at my aunt and the image of how tired, weak and vulnerable she looked still flashes through my mind and breaks me. I feel like she doesn’t have long left and it’s really scary and it hurts. I feel guilty with everything I do. Whether it’s walking, eating, using my phone, using my laptop, showering, driving. Since Sunday I’ve been crying up to 5 times a day and my aunt is always on my mind. I’m on Ms forums, readings people’s experiences all day long in hope that they help me or give me hope. I feel demotivated at uni and angry at the world, I have type 1 diabetes myself (dx’d on new year 2013) and I haven’t taken good care of my health for two weeks. I’ve stopped going to the gym because the guilt is too much and I’m crying while typing this. How can nature be so evil? How can a disease be this bad? Why does my aunt have to go through this? I really need some help, I feel miserable and hurt and I just want her to be better again. I want my aunt back!!! I can’t see her go through this! I can’t take the pain. I know my aunt is in pain and I can’t imagine how depressed she feels just laying on that bad. she even said “I’m just sick of sleeping”. I feel like she doesn’t want to live anymore. I’m trying all I can to help but I can’t, and I feel helpless.

Can you be there on Thursday when she and her home are assessed for the adaptions she needs, perhaps you would get a better insight into what you can do to help.

If you took over bathing/showering your aunt once or twice a week using the hoist I’m sure that would be a massive help to your Aunt and Grandmother. It sounds as though you and your cousins care very much for your Aunt perhaps now is the time to do something positive for her. You can’t take away your aunts pain but you can help to ease her daily existence. You could take her out in her wheelchair (she probably needs a different one from the one she has now). Does her home have a ramp for easy access to outdoors. Ask the person who comes to assess her exactly what she needs and what they will provide.

Does your aunt recieve all the benefits she is entitled to? I suggest you try to find out what she is receiving in financial help then go to the Citizens advice and ask them what you should do to get your aunt all the help she needs. There are people in your local council who will also advise you, all you need to do is ring the main switchboard and ask to be put through to the relevant people. It does sound as though she has contacted them in the past if they are now assessing her on Thursday.

Best wishes and please let us know how Thursday’s meeting goes.

Jan x

FadingAway, if a good friend were in your situation, what would you suggest to him/her? Please do have a think about that. Sometimes, when we are getting locked into a self-destructive and self-defeating pattern of behaviour, we have to sit ourselves down and be our own kind friends and advise ourselves accordingly. I think that is what you need to do now.

Just one other thing: please examine your motivation for neglecting your own health. Are you, at some level, trying to cut a deal with fate? Offering up your own health and well-being in ‘payment’ for a miracle for your aunt? If that’s what you’re doing, please stop now. You cannot cut those sort of deals; you know that really, but sometimes the superstitious part of our brains tries to get the better of our rational selves.

You draw a warm and loving picture of your aunt in her prime. The best tribute you can pay to her is surely to be a kind and loving young person who gladdens the heart of his or her relations by making a good life despite all the troubles that life can bring.

Good luck.


Hi Jan, thank you for your reply. My aunt has definitely contacted them in the past so this explains why they called us and arranged to meet on Thursday. The last time they visited was last summer, when my aunt was still able to stand up by herself (with just a little support from someone else). I does bring some comfort into my mind knowing they will be visiting as they’ll be able to make life a little easier for her.

i don’t thinly my aunt would want me to give her a shower, the only people who she allows are my grandma, my mum and possibly my 22 year old sister. This is understandable. i just want her to be able to get out of bed and into her wheelchair comfortably so it’s easier for both her and my grandma. I’m guessing this is done with the help of a hoist? This way, it would be a lot easier to take my aunt out on her wheelchair to get her some fresh and to get her mind off things (she’s not seen the top of our street in 4 months).

Ive suggested vitamin D and B12 countless times because my aunt is extremely fatigued. Is it worth it or is that not going to help? Thank you so much for your kind reply Jan, I shall definitely tell you what’s happening after the meeting. x

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Allison, thank you so very much for your reply. You’re right, I shouldn’t be thinking the way I am and I should really be a lot more kind to myself. I really can’t help the guilt. I feel guilty doing things that my aunt is unable to do, simple things such as feeding myself and walking. I’m just reminded about how scared, upset, lonely and frustrated my aunt may be feeling. It’s hard not to have such thoughts when the person you love is deteriorating right before your very eyes. I’ve had a lot of dreams lately where my aunt is walking again or at least trying to walk. Most of her symptoms have cleared and she’s back to her same old self. However, I then wake up and realise that it was just a dream.

My biggest fear is losing her to this disease and I feel like I already almost have. She’s definitely not the same person. She’s only 40% of the person she used to be. My aunt would not want me to be worrying and crying over her like this but then again, if I was the one suffering with M.S right now, I’m sure she would be doing exactly the same thing. Your advice certainly did help and I will try my best not to destroy my own health just because my aunt is going through something she has no control over.

Thank you

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Hi, the woman from the council came over today and everything we discussed has seemed to make me feel a lot better. Firstly, my aunt has finally agreed to carers. Two carers will now be visiting every day to bathe my aunt and they have also said that they will replace her wheelchair with s recliner chair so she is able to sit for a few hours and each day, they aim to make her sit on the chair for a little longer until she can hopefully sit for about 6-7 hours because they even agreed that it’s awful lying on a bed all day so they aim to put her in the bed for sleep only.

I’m so happy she will be washed every day and changed also, I know that my aunt lying on a bed all day covered in her own urine and feces was making her more and more depressed. The council will be installing a hoist so it’s easier for my aunt to transfer to and from her bed.

I feel a lot better now and I’m sure she also feels better because I feel like she’s slowly and finally starting to accept her condition. It was getting extremely hard for my grandma to care for her so my grandma will be able to take a rest now too. At least now my aunt can get out of the house more and not suffer daily in a bedridden state.

Thanks x

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FadingAway, that is good news you’ve cheered me up today, woke up this morning feeling a bit down, you’ve put a smile on my face.

I don’t understand when you say they are replacing the wheelchair with a recliner chair, does that mean she won’t have a wheelchair at all? How can she ever leave the house without?

Everyone with MS can self refer to physio, if your aunt doesn’t have any Physio can I suggest you get in touch with your areas Neuro Physio dept, she will need something if she has been confined to bed for a long time or perhaps yesterday’s visitors have already arranged this. If you and your family are unsure of anything, get in touch with your Aunts MS Nurse she will advise on what else is available for your Aunt.

There was an advert on the tv years ago for BT with the slogan “it’s good to talk” we should have the slogan " it’s good to post"

Jan x

Aww, it makes me happy to know I cheered you up. May you always stay blessed and happy :). And sorry for not being clear with my words, I was meant to say “recliner-chair” which will be placed in the corner of the room just in front of the tv. However, they did say that if at anytime, my aunt wanted to go outside, then they would put her in her wheelchair. I am not entirely sure whether they were referring to JUST a recliner-chair or whether they are going to be giving her a reclining wheel-chair too. I can only hope she gets both. I will definitely keep in contact with her MS nurse and I feel good that this will make me aunt feel better. They did discuss physio so it’s all good :). I believe my aunts back has become extremely stiff due to being on the bed for such a long time which explains why she can’t sit upright. we all aim to help her make changes to her diet to encourage weight loss (she’s gained quite a few pounds since summer) which should make it easier for her to bare her weight. Thanks again for the lovely post. X

She must be feeling much more positive now

Keep in touch and take care of you too.

Jan x

good morning,

has anyone got any thoughts or advise on family carers and helpers and how we can get a little support emotionally?

my wife has MS diagnosed 6 months ago and as a ‘normal’ male im finding it hard to express inner feelings and as usual they’re all building up inside.

hoping someone might just have a clue


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Firstly sorry to hear about your Aunt. My Mum has MS and it is a b*tch. I bought my mum an MP3 player and added all her favourite music for her to listen to as she too isn’t very mobile and I know it brings her a lot of joy. Ask your Aunt what her favourite music is and add it to an MP3 player :-). Hope this helps.

I started reading this post from the top and got quite a way down before I realised it is from a few years ago.

I dont know if the original poster still looks on here. If so I`d like to ask how things are now.

I also see that Shack added to this post in October last year, asking for help.

And now we have Sam visiting the forum.

If you dont mind, I`d like to point readers to a new post I am going to write now, on this board.

I am the cared for one in our house and I`d like to help other carers if I can, by telling you what helps us.

best wishes to all,


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