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Struggling with mum's MS progression.

Mum’s had her diagnosis of PPMS for just over a year now. Typically of PPMS, things are steadily getting worse. I’m finding coping with it extremely hard. I’m studying for my masters at the moment and am riddled with guilt as her MS stopped her from finishing hers.

I feel so guilty that I find life hard at the moment. I have had to take time off uni because some days I find so difficult to come to terms with where we are now and fear of the future.

Our family is rather small and I don’t think anyone realises that it’s going to get worse. She cries every single time I see her (twice a week typically) and I try my very best to keep her mood as high as I can. We take lots of Costa trips!

Although good news, we’re doing to Disney World in Florida next September! I managed to convince her to come with me and my partner as she’s always wanted to fly on a plane. Now we’re going! I think it’ll be great to have something to look forwards to.

Does anyone have any insight into how I can cope better? the anxiety is killing me!

I think I just worry a lot about how she’s feeling and that gets me down.

Feeling helpless,

Lucy

LucyRose what a very caring daughter you are. why do you feel guilty? you know that you have no reason to feel guilty. fantastic that you have costa trips and Florida is just what you both need. to be honest a year is very early days. a full gamut of emotions all packed into a short amount of time. i think you need to step back and look at the situation. you need to take control of the anxiety before it starts to control you. talk to your GP, there may be a mild anti depressant to help you through. the love you have for your mum shines through, i have a lump in my throat. people never know what is around the corner. to some people MS is terrifying but in comparison to other illnesses i’d say it’s medium. just continue the costa trips. carry on letting her know you love her. you are a fab daughter.

My Father has PPMS and was diagnosed about 5 years ago. It has taken him a long time to come to terms with it as he was a high flying business man before, now he is on disability. Initially he went downhill very fast, fatigue, weakness, nerve and muscle pain, cognitive loss a little bit, drop foot, inability to walk much even with a stick, and then… no change in the last 4 years, he seems to have plateaued for the time being. PPMS isn’t always steady and she may not have symptoms coming on as fast as she is now, or has done, it can plateau at times. On the bright side, with PPMS there are no relapses, she can plan things a bit better as the day to day is more predictable, but coming to terms with things is always going to be hard. My dad has learned to take life a lot slower than he did before, he now spends most of his day socialising and knows almost every person in the town. Volunteering at the local library has helped him a lot as he can pass on his knowledge to those that benefit from it a lot - helping to write cvs, fixing people’s computers, teaching english skills etc. I know exactly what you mean about the guilt. It kills me that I can’t do anything, and that no amount of money or work from me can make him better. I suffer from guilt all the time even now, even though he says he is happier now than he has been in a long time, I know that he is suffering and it is awful to see your parent go through that. You are doing your best and that really shows. It is difficult to deal with, and hard to find the right support too as people that do not see MS regularly and know it struggle to understand. My partner tries his best but he can’t see how deeply it affects me seeing my dad struggle like that. You are supporting your mother but you need some emotional support too. Make sure you take care of yourself as well and keep doing the things that make you yourself, you can’t fill someone else’s cup if yours is empty to start with. Be kind to yourself and know that this isn’t your fault, you are only human, and there is only so much you can do. Hopefully your mum will come to terms with this and find ways to deal with the symptoms, and ways to find hope.

Know that you are not alone, and what you are feeling is normal. If you are struggling with the feelings of guilt and anxiety, go speak to your doctors and they can find ways in which to support both you and your mother emotionally.

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Hi Lucy, I just wish I did have the answer, my mum’s MS has got worse steadily over the last 15 years. She’s now totally disabled, uses hoists and wheelchairs to get about, totally blind and 95% deaf. She’s at home with my dad who God love him tries his best but it can appear he takes more interest in his hobby of photography than mum but I think it’s his way of coping. Neither of them are good at talking about the situation. I gave up my office job which I’d had for 30 years 5 years ago to help out a bit more. But what can you do with a deaf, blind, disabled 82 year old. She has accepted this is where she is but all I want is to make her happy but how do I do that. She says she’s happy just to know I’m there, I go round for 3 or 4 hours 4 times a week. I could go more but dad and I don’t have a great relationship so sometimes it’s awkward. Plus I come home in tears most times. My husband is a great help with mum, he’ll do more than a son in law should have to like hold her up til I wipe her bottom, help my get her dressed etc but he’s not so good at understanding my depression about the situation. I’ve had no joy from the doctors either, they don’t seem to see why I find mum’s situation upsetting. My husband tells me to get a hobby and make friends but I was seriously let down by my friends or so called friends 5 years ago and so I now have no one. My mum is my best friend but I can hardly tell her that I cry 50 times a day over her situation and can’t remember the last time I had a descent night’s sleep. I just want to make mum happy.

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Hello LucyAnnie

It sounds like you are being let down by so many people, your GP, your friends, your father, even your husband, however great, doesn’t understand how depressed you are, or why.

You really are doing all you possibly can for your mother. If she knew that her disability was making you so unhappy and depressed, she’d be horrified. It sounds like your husband is pretty wonderful to be able to help you with caring for your mum. Even your dad, however poor your relationship, does his best with and for your mother. It really is for the best that he does have a hobby, something that occupies his mind and time. If he’d given up everything just to stay at hope for your mum, he’d be as depressed as you, if not more so.

Perhaps you really do need to make your GP understand how bad you feel about your mother’s situation. If you were to sit down and write how you feel, what it is about your mother that makes you feel so terribly low, it might help you explain it to the doctor. It seems to me that you do need help to deal with your emotional state. Crying so much isn’t healthy.

I understand that it’s through love that you feel so depressed, but love for you would make everyone around you feel better if you had some help, perhaps counselling, perhaps some medicinal assistance? Just understanding would probably help.

I wish you all the best, hopefully you’ll get some of that understanding and some help with your low mood. Possibly if you could climb out of the trough of depression you could find some time to do something for yourself. Maybe join a gym or exercise class, find a walking group or a book club, depending on where your interests lie. And if you were happier in yourself, your husband would be happier, even your mum might feel better knowing you are happier and healthier.

Best of luck to you and all your family. Having a severely disabled and dependent mother/mother-in-law/wife takes its toll on you all.

Sue

Thank you for your understanding Sue, I really do appreciate the support I get from messages on here, the place where people understand what both mum and I are going through. I try really hard not to let mum see how much this is all affecting me, the bonus of her blindness and deafness, she doesn’t see or hear the tears. My husband and I had dreams of what our retirement would be and trust me this wasn’t it but I can’t just walk away and forget about mum so our life is on hold until this problem comes to an eventual end but that could be years we just don’t know. I guess the bottom line is like everyone says I need to just man up, accept this is what life’s about for me at the moment and get on with it. Everyone has their troubles so why should my life be a bed of roses.

I don’t believe you should just accept that this is your life for possibly years to come. You and your husband also deserve some good times. You’ve worked all your life looking forward to a comfortable retirement, there is no reason why you should put all of your plans on hold. I’m sure that as a caring and loving person you’ve inherited these traits from your mother. This means that were she to know you are exhausting yourself and hurting so much over the care of her, she would be horrified and tell you to start giving some time to yourself and your husband.

Why not think about some ways that you could take time away from your mother and still be confident that she was being well cared for. You could plan days out with your husband even if trips away from home are impossible. Or perhaps a weekend away (or a few days in the week!) would do wonders to recharge your batteries and improve your own enjoyment of life.

You really do deserve it. Don’t feel guilty if you do manage to take some time for yourselves. Even if it’s just a nice walk and lunch, or a cup of tea and cake. It’s not ‘walking away’ to make sure your own well-being is taken care of.

If you look after yourself first, you will be a better carer for your mother. She is lucky to have such a devoted daughter.

Sue

Aww Sue I just want to give you a hug, well probably I want you to hug me as you seem to understand more than anyone how we all feel. Your right, even mum says I need to think of James, (my husband), she’s always saying it’s not fair on him that I’m always at her house, or won’t go away for a couple of days or whatever. We do manage things together when I can, like walks or a lunch out, I’m really lucky to live in an area where I can get beautiful walks on my door step.

Mum would be so upset if she knew I wasn’t coping or if she knew the tears and tantrums James is having to put up with. I know I have so much to be thankful for, I should tell James how much I appreciate all he does and puts up with cause not many blokes would have stuck it out, I know that from things I’ve read on here, many poor soles left on their own over situations like this.

Think this reply is really just me giving myself a good talking to, I need to remember the good things I have, instead of concentrating on the bad. Thank you Sue, your such a help and support, honestly you really are. I don’t know what your situation is but I hope you find happiness each day cause you deserve it for all the support you give others.

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Thank you for your words LucyAnnie. I’m glad to have been helpful to your mindset. You really are doing the best you can for your mother. You are also lucky, as am I, to have a supportive and understanding husband. Yes, they need telling that often. Husbands aren’t just for Christmas, they’re for life! If we’re lucky!!

Good luck to you, be kind to yourself as well as to your husband. You are both worthy of our thanks; as people with MS, we have to count your mother as one of us. So what you do for her, you do for us. This is something I really do believe. I’m glad your mother has loving and caring family to take good care of her.

So you see, you need to take care of yourself in order that you can continue to take such good care of one of our sisters.

Sue