Forum

Feeling helpless

Where to start… What can we do? My mum has MS and has reached an incredibly low point at the moment. She is wheelchair bound and has been for a few years although until very recently she had been able to self transfer to the toilet or in and out of bed. She has been really struggling with depression and anxiety over the past few weeks - lack of sleep combined with this has really contributed to her decline in mobility and confidence. She has a couple of days ago had a hoist delivered but has spent nearly three weeks either in bed receiving nursing care ( toileting in bed in pads) or accompanied by family as we have taken it in turns to go around to get her out of bed, sitting with her toileting and showering etc. This was designed t do until the hoist arrived. We all pulled together.

The hope was the hoist would give her some independence back but she hates the indignity of everything. She is in a living assisted flat where carers are on site 24 hours a day and she presses for assistance but she hates this - terrified if waiting too long and has an accident. She feels ashamed and says she is in a living nightmare. She is trying to hardly drink to avoid needing the toilet (despite knowing this is really bad) so she needs the toilet less. She is now becoming confused as you would expect. She is safe and the carers are great and we as a family do a lot. But it seems it’s not enough she is scared to be alone.

She does not want to be here and did attempt an overdose a few years ago but is no longer physically able to do anything although she has admitted to health professionals she would if she could. My mum is in such a dark place … we just want here to be as happy as she can be and of course safe. We don’t know what to do… maybe respite… maybe employing a companion…

We just want to help but feel so helpless and we are all living this nightmare with here.

hi manc lass

you and your sisters are really very sweet caring for your mum.

i understand why she feels ashamed.

incontinence is not a thing i’d wish on my worst enemy, not even teresa may!

have you thought of direct payments?

that would enable your mum to employ carers/companions.

boudicca (poll) has these and is only too happy to help.

maybe there is a voluntary organisation who could help with visits and friendship.

wishing your whole family a wealth of good things

carole (also a manc) x

Hi, yeh…its a chuffin orrible carry on, I know.

I have an unproven condition, which mimics PPMS.

I`ve had it going on 20 years and know how degrading, depressing and downright frustrating it is, to have to ask for help for the most private of functions.

This hoist your mum has, I take it it is a portable one, yeh? I had one of those before i got the ceiling ones. The portable are heavy and hard to push…especially on carpetted floors. The position the sling has you in, isnt great. I always banged my feet on the spar and hurt myself.

I have a supra pubic catheter…it is a tube into the bladder from the lower abdomen. It is a fixture, but doesnt have to be permanent. It empties into a bag, which I have hanging on my wheelchair arm. It can be quite discreet, as my clothes cover it. I never have to worry about going to the loo for a wee.

As for my bowels, that is still a chore!

I use Direct Payments to pay for carers. I`m just going through trying to find a second carer. My hubby bears the brunt of my care.

If you need any more info, please ask…or send me a pm if you prefer.

I`ll help if I can.

pollsx

Thanks for taking the time to reply and the good wishes. I have suggested this forum to my mum but she’s not really internet savvy ( despite trying my best efforts).

We might explore the companionship route a little further although to be honest she does have a lot of friends and people who visit (usually) its just she has been pushing people away recently - it all comes back to the whole toilet issue.

Fortunately money isn’t too much of a problem for mum. She ended up coming into a little money later in life although the irony is she didn’t have much when we were all young and she was healthy. Now she has the money but not really got the health to fully enjoy it. Not complaining just the lottery of life (which can be cruel) - I suppose.

We went to the hospital yesterday and she is thinking about having a catheter - I think it’s the way forward . Would hopefully improve her anxiety and overall mental health and allow her to have friends around again. They recommended the urethra catheter due to 3 month waiting list for the super pubic one plus she would need to be in hospital and her current anxiety issues. She is taking a little time to think about it but understandably is scared as in her words ‘it’s just something else to face’ . I have told her that it could also be a good thing - something else that could help adapt to make day to day life a little easier.

I sometimes say things like this because I know I should but I feel a bit scared too - when we go out etc what I will need to do…

Anyway thanks again. We will take deep breaths and each day as it comes. Good to know we’re not alone.

Just did an outpouring and the site had an error and it disappeared☹️

Basically my 23 year old daughter who was diagnosed with R&R MS at 17 is just suffering a relapse- lost all feeling down right side making walking and much else extremely difficult. She says is worse than losing her sight in one eye which she commonly does. Dr says hopefully will subside in a week- she is on a heavy steroid dose with diazepam and her new MS nurse said it will more likely be months.

She has other medical issues and life has been especially hard recently but keeps bouncing back from them and the never far away depression.

This time she is really struggling to do so and as I write is just laying on the bed in deepest despair.

She has really fought the whole diagnosis thing (not uncommon apparently with younger MS sufferers) and won’t engage with the Charity or use a wheelchair - which would least get her out.

I just don’t know what to say or do anymore to help - as Mum all I want to do is make her ok and can’t

i know I don’t know what it feels like but any suggestions how best to help her through this

The best thing I purchased was a huge fan. Cool air circulating around the rooms & the shady windows open.

Ice Cream is another favourite & some fresh fruit. Sitting by a lake somewhere is calming too.

A good blender to make some cool shakes too.

Terry

Thanks Terry - think a lot suffer with the heat - all tips are welcome

Hi Alex. Sent you a message meant to reply on the forum! Sorry. Still new to all this

Alex, contact the local/ nearest MS centre and ask when/ if there is a gathering of young MS sufferers at the centre.

In a life MS one gets together, in general, with people of same age groups, why should this not be the case when someone MS, especially as it concerns young people here. I’m a 54 year old; the communication problems have with my 16 year old son…! (and I was exactly the same at his age…).

Take care, Jos

Hello from Idaho dear Manc Lass,

Your mum is so lucky to have you care so much about her. I have MS and have needed a hoist apparatus at one point in the past, and it was one of the most humiliating moments of my life. I am a private person and don’t like assistance with personal things. I enjoyed the reply you received from Carol who said she wouldn’t wish this on her worst enemy, not even ‘Theresa May’. I, however, would wish it on ‘Donald Trump’ who plans to rips healthcare away from millions of people in this country. Sorry, didn’t mean to get off topic.

I do think that ‘humour’ is something that helped when I was at this low point. Does your mum have any particularly funny friends that could pop around for a visit? Is there a new hobby she could develop? Starting a new endeavor, (macro photography, in my case) was a nice distraction from the depressing circumstances in which I found myself at the time.

My heart goes out to your mum and I wish I were close enough to pop in and visit her (and you … you sound like an amazing daughter). I hope you continue to love your mum as you do, but I also hope you are remembering to look after yourself and do things you enjoy. I admire you and your mum and hope some solutions arise soon that make this terrible struggle more bearable.

Janet

xxxooo

Sorry I never replied to your messages - just seems to have been none stop since- but I really appreciated them all- especially the personal one.

In the end, we got an industrial air con unit fitted and it has been brilliant for her - and made a massive difference. Unfortunately, when I last wrote, that was the start of a major relapse which is still ongoing- although much subsided now. The lesions have spread to her spine which is new and disappointing- but as the MS nurse pointed out the good news is she now qualifies for DM drugs without any funding fight.

She has these but not been quite well enough to start them due to non stop colds etc. On a more positive note, she has started Uni, the etc in the last sentence meaning going to a few freshers events and suffering the consequences and is a lot more stable (so I am too).

Long may it all last. Thanks again for your support. It really helps.

Alex

Similar situation to me

‘feel so helpless and we are all living this nightmare with her’

My Dad has had MS my whole life, he’s now in a very similar situation to you mum, although he has a catheter.

It is a nightmare, I totally relate to you.