Feeling a bit low... Mum's MS

Primary progressive MS
1

Hi everyone,

It’s been a while since I’ve posted in here - I don’t expect any answers or even comfort, I think I’m just looking to vent.

My mum was diagnosed with MS in 2003 when I was 16. Over the years she has gotten significantly worse; the first few years were spent in and out of hospital with recurring seizures, chest and water infections and a whole array of ailments an set backs. In 2008, when I was 21, she was moved into full-time care. I rarely go see my mum anymore as it’s too hard for me to deal with; it’s this never-ending battle of the guilt I feel for not being supportive plus the sorrow I feel for the loss of my mum. I’m really struggling at the moment. I’m dreaming of mum almost every-other night. Sometimes we are in my old house and I’m clinging onto her memory, sometimes (like last night) she’s painfully wasting away and I can’t bear to be around her.

To make matters harder, I’m getting married this August and she was the last person who found out I was engaged simply because I’m not sure of what she understands. It breaks my heart to think I’m planning a wedding that she isn’t involved in yet she’s still around. The likelihood is that if she’s well enough to attend the wedding it will be for the ceremony only and the carers from her home will have to take her back. I see brides wedding planning with their mums and grandparents in tow and I can’t help but feel the huge sense of loss at having no-one.

It’s breaking my heart. Can anyone offer any words of wisdom? Any suggestions to how to deal with the anxiety and the dreams? Anyone been in a similar position?

Kathryn x

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Hello Kathryn.

It’s almost too hard to accept. It is natural that you find it difficult to go and see your mum because she isn’t the person who brought you into the world and gave you everything.

When my mum developed dementia, she failed to recognise me. I just wanted to hide away from what she head become. But I remember all what she’d done for me so I did go and see her. Ostensibly it was a pointless exercise but I felt that she might have some spark of recognition. I just listened to her ramblings and nodded. She never did acknowledge me as her middle son. The guilt was still unavoidable however. It was focused on incidents from the past when I had let her down.

What I’m trying to do is send you some empathy. There may be some big emotional moments to get through but I would be inclined to face them head on. I cannot advise that to you however because you are your own person. One outlet for me is writing. I’ve written in length about my mum and have some very precious photos and memories.

I wish you all the best, Steve.

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Hi Kathryn

Oh my heart goes out to you, I am so sorry to read what you are experiencing. I wonder if it would help you to be able to talk to a Councellor, you may find that easier than talking to a family member?

When my daughter was getting married, my Mum was very ill, but we all so wanted her to be able to attend, so I paid for a private a ambulance, and two carers to stay with her at all times. She attended the Church and for a short while at the lunch afterwards, and during that time, lots of photos were taken. These photos are treasured by all of us, as she passed away a few weeks later.

I am only telling you this to let you know that even if she can only attend a short part of your wedding, you will have those memories forever to cherish.

I so hope this little story does not upset you, as that is not my intention.

Wishing you all the very best, wish I had a magic wand.

Pam x

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I’m sorry this is harsh, but cannot believe you hardly go so your mum because its too hard for you! Imagine what it must be like for her.

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A fair response but when I went regularly it become more and more frequent that she didn’t know who I was, or would mistake me for a nurse. She is almost incapable of speaking and she sleeps, I’d say about 90% of the day so it becomes quite difficult for me to be there when she doesn’t know a) who I am or b) that I’m there anyway.

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Oh, and specifically responding to your message, yes, it does sound harsh and quite judgemental if I’m honest. One thing I’ve learned about MS over the past decade is that everyone’s journey is different and no one has the same experience.

I’m a little disappointed that a post, which was clearly incredibly sensitive and quite harrowing to write, was met with such an insensitive response, especially when I’ve used this forum freely for support in the past.

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[quote=“Kay66”]

I’m sorry this is harsh, but cannot believe you hardly go so your mum because its too hard for you! Imagine what it must be like for her.

[/quote] 6

Yes, it is harsh. She wasn’t asking to be judged. Until you’ve walked a mile in my shoes and all that…

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Thank you Poppy, you’re right, I wasn’t asking to be judged.

I’d clearly said I have enough guilt about it anyway so didn’t really need someone to make me feel worse than I did anyway.

And as I said, my mum doesn’t wake up when I’m there anyway so I spend the time sitting in a room watching her literally waste away and it is pretty unbearable. I can’t win; when I’m there it doesn’t benefit her because she isn’t awake (or if she is awake it is for really brief moments and she can’t speak to me) and when I’m not there I feel guilty because I’m not!

I think it’s easy to judge people but you’re right, you never know what someone goes through until you’ve been in their shoes.

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Kat, having re read your post again, I can only empathise with you. I lived in another country when my mum was taken into hospital after a fall and broken wrist. Blood tests showed advanced stage cancer and not very long left. When my sister informed me of this, everyone expected me to travel home. I knew I couldn’t do this. We spoke on the phone by her bed a lot. She wasn’t told she was dying. I would talk to her about her beautiful garden and how the daffodils would be in flower when she was allowed home. Of course she wasn’t going home. She died four weeks after being admitted. I was judged harshly too, but I didn’t care. I made my decision to remember my mother as she was when we would visit each other. I didn’t want my last memories to be of her disease ravaged body or drug induced sleep. I’m glad I made that decision.

Now my husband and his sister is in a similar situation. They no longer live in the same country. She has lived in sheltered housing most of her life with special needs. She now has dementia and doesn’t remember him. When he phones, she doesn’t know who he is and walks away from the phone. What should he do? Go and visit her? Risk agitating her and upsetting himself more than he already is? I don’t think so. He must take solace knowing that she is content in her routine. Her world is “normal” to her, whatever normal is. Sometimes it’s about doing the right thing for you. It’s called self preservation. You’ll have to find a way to deal with the demons that torment you, but you cannot change what is. You’ve had a sad past but that can’t be altered. You are going to be married soon and, hopefully, have a wonderful future. Don’t let anything or anyone’s remarks cast a shadow on that. I wish you the very best.

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Thank you for such kind words. I hope you have some lovely memories of your mother before she was ill that you can hold onto

In the years after she moved into care I visited at least every other day and because I was so close to my mam and spent so much time with her when she was ill, many of my memories are of that which is really heartbreaking.

It’s so hard to know what to do for the best but I really appreciate your comments. It’s nice to have someone share some comforting and understanding words.

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That was very harsh and unnecessary of kay66, do not feel guilty for the way you feel, no one knows how they will feel until it happens to them and everyone deals with things differently. Your Mum wouldn’t want you feeling sad and guilty. I wish you all the best. Congratulations on your Wedding. X

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Kat,

I am in a similar situation, in this case I am the one with MS, and my mum is the one with dementia who lives in a care home.

My sister got married again last year, and she wasn’t going to invite my mum to the wedding - my mum doesn’t have the type of dementia where she doesn’t remember people, she can’t remember events, it’s like the transfer from short term memory to long-term memory just doesn’t happen, so she won’t remember going.

Long story I won’t bore you with - my sister ended up getting a carer for the day to look after my mum and I think she felt less guilty for doing it. As I say, I doubt my mum even remembers it. But that won’t work for everyone, so YOU should do what YOU are most comfortable with. If you feel bad about leaving your mum out, then get a carer and don’t worry about whether your mum understands, if she does, great, if she doesn’t - well, she doesn’t. If you’d feel better if she wasn’t there, then don’t invite her, she probably won’t know anyway and wouldn’t blame you if she did - she’s your mum, she loves you, she’ll want you to be happy. If you resolve this (either way), I think you’ll find the anxiety and dreams fade.

It’s quite possible that your mum is feeling guilty as well, and you not going helps her feel less guilty about having this wretched MS that’s such a life ruiner for all concerned, so you may well be doing what she wants too. As for kay61, well, no, you can’t imagine what it’s like for your mum, you’re not your mum. But neither is kay61.

You will probably find that quite a lot of people understand and empathise with your guilty feelings. Especially as you get older, you seem to get more and more of these things to deal with, and they aren’t easy and have no good answers. So ultimately, I think you should do whatever you feel is right for you.

Congratulations on your wedding. Hope it goes well, whatever you decide to do.

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