Introducing Me - and my MS mother

Caring for someone with MS
1

Hi All,

I’m not actually in the UK, but there’s no forum for carers here in Australia, so this is the next best thing. I spent my early years in the UK and most of my extended family’s back there.

Anyway, I’m the primary carer of a parent (my mother) with MS. She was diagnosed about 16 years ago but had her first relapse more like 30 years ago, so I’ve been her primary carer for quite a few years but never really thought to much of it or got any help. But a few things have changed recently and I’m finding it harder to cope – not that it isn’t manageable, but one of my lecturers (I’m in first year uni) suggested today that I find somewhere/someone I can talk to who has more of an idea what the problems are. This was after I basically broke down in front of him.

So my mother was “re-diagnosed” about a year ago from relapsing-remitting to “transitioning into secondary progressive”. She’d had what I thought was a relapse at the end of 2014, but the neurologist said it was the beginning of the progression because it had happened a bit too gradually to be a relapse. He also referred her to an intensive round of sort of every sort of therapy there is, which was brilliant because she’d lost a lot of mobility, mostly fine-motor skills and stamina, and she got a lot of that back, and also some adaptions for around the house, like cutlery with big handles.

So all was going will until probably Thursday night, she made a comment I didn’t think much of at the time, about how she was having trouble colouring in (I’ve got her one of those adult colouring-in books and big toddler-size pencils, which seems to be really good for her fine-motor because it’s noticeable if she hasn’t coloured-in for a few days). Then on Friday morning her memory was just shot, by the afternoon she was limping terribly, barely able to walk the length of a room, never mind the house. I was pretty convinced she was having a relapse by then, and since then more signs have presented themselves.

Problem is she has a major denial problem when it comes to relapses. “I just didn’t sleep well” or “I’m just a bit tired” or “It’s a bit warm today” (it’s not, it’s one of the coolest autumns I can remember). So I wasn’t quite sure how to deal with that because it seems almost better to let her think she’s just a bit tired than to say “do you think it’s a relapse?”, because she has major problems with depression and it probably wouldn’t help things at all to have her going “the disease is progressing! (I’m doomed)!” And then even if she could be convinced she’s having a relapse, she’d refuse to go to the doctor or the neurologist at all because “there’d be nothing different on the MRI and they’d tell me I’m imagining it”.

I’ve had lectures all yesterday and today and I’ve taken the car with me both days rather than public transport like normal because my father and I agreed it was best if she didn’t get it into her head that she needed to drive somewhere. I’ve been trying to line up people to drop in and check on her while I’m gone, but I’ve almost exhausted the list. Like I said, most of our family’s back in the UK, so it’s not like we have a massive support network. And also today, my sister, who’s at uni about ten hours’ drive away, is having major problems with one of her housemates, ringing at all hours and getting mum really upset – whatever emotional control she has disappears during relapses.

I think the lecturer was right in saying that talking about it would help, and I hope I haven’t bored anyone by rambling on for too long. I just really need someone to talk to about this right now. I have no idea what to do about anything. My father’s autistic so it’s easier with him if he’s just going to work as normal and I deal with the medical stuff and the emotional stuff, he doesn’t handle this sort of thing very well and my sister will completely freak out if I mention the word “relapse” to her and start trying to come home, which isn’t a good idea, it’s easier all round if she’s safe at uni all those hours away in ignorance.

I don’t know whether to try and get my mother in to see some sort of doctor (our public health system is just like the NHS when it comes to non-emergencies, so you can imagine how that would go) or just wait for it to blow over. I feel really guilty when I leave her in the mornings and worry all day about how she’s going, I just can’t know what she might to while I’m gone or what might happen, just hope that she’ll stay put in the house with her colouring and the television (which thankfully has happened the last two days), and then by the time lectures are finished, I’m fishing around for excuses to stay in the library doing homework (end-of-term essays are due next week) because I’m just dreading coming home to deal with it all again.

So, yeah, I should probably stop talking now. I’d love to hear from anyone – don’t know what anyone would do or say, but I’m just feeling really alone and clueless right now.

thanks,
Rachel.

2

Hi. I read your post but unfortunately I can’t help in anyway. Sorry. I would suggest you post this in the everyday living forum as most people look in their everyday whatever the post and you may find you get more help and response. Only an idea. Good Luck

Polly x

3

Hi Rachel,

It seems to me that you have had a lot heaped on your shoulders. As if starting on a path that might define the rest of your working life isn’t a big enough responsibility. Your lecturer’s right, you need a bigger and better support network.

This forum is a huge resource of caring, knowledgeable and experienced people. Some are carer’s themselves. I think I can speak for all of them that you are very welcome to dip in and out whenever you feel like letting off steam or need some practical advice.

Can your GP suggest any support groups?

Does your university have a counsellor?

Meanwhile; there’s always someone here. All day, every day of the year.

By the way, what are you studying?

Best Wishes,

Anthony

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4

Hallo hun.

Youve got far too much to cope with. Youre taking on the whole family`s problems. Your mum, your sis and your dad.

It`s as if you were an only child with no dad.

You`ve got to do something, or your own future will suffer.

Have you got the equivalent to our social services there? No-one would think you selfish to seek out help.

If you do why not ring them and explain how you`re finding it all too much?

I`m sure you would all benefit from having outside help.

My hubby was my only carer for 11 years. I knew he was struggling as he has his own health issues to cope with. I went behind his back and organised help. He grumped a bit at me, now now 5 years on, he`s glad I did it.

Go on, make that call.

pollx

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5

Hi All,

Thanks to those who’ve responded. I was in a bit of a state the day I posted that, so it’s not all as bad as all that… Sometimes I think I can be a bit melodramatic!

Firstly, my dad’s actually pretty great. There are a lot worse fathers around. I can only imagine how much worse things would be if I had to worry about having enough money or food… it’s just that he’s not so great with the emotional side of things. It’s not like he’s really autistic, but enough that he might freak out if he thought mum was really sick.

I’m actually studying theology and Biblical languages at the moment but looking to swap to teaching next year - it’s a one-year course (two years, part-time) at a small, private college and I’ll finish this year, but I’m thinking I need to do something that might actually get me a job at the end, rather than just something fun (teaching was always my next choice, anyway, and probably I can do a double-degree with linguistics as the second). There’s no designated counsellor as such, but it’s much friendlier than a normal university (smaller) and there are a couple of lecturers I feel comfortable talking to, one whose experienced similar problems in the family.

About support groups… well, the MS society here’s in a bit of a shambles. There were some monetary problems I don’t quite know about, I think, and then our MS society (SA & NT) came under the jurisdiction of Western Australia last year, who cut a lot of our programmes, so it’s difficult enough for people actually with MS to get anything through them at the moment. There are a few sort of people-run social groups for MS but I’m pretty certain there isn’t one for carers here. I used to be vaguely affiliated with a group for “young carers” but never went to it much for one reason or another… very different caring situations, I suppose, and I didn’t really think I was a carer, and I’m too old for that now anyway. I’m not quite sure about it all, since I’ve only just stopped being a minor, so all the places I’d previously have gone for help if I needed it don’t apply anymore.

On the social services front, well… it’s not really social services, I don’t think, but we actually have pretty good sort of social support here. There are government departments for everything, who can be surprisingly efficient if you pester the right person (not the money-related departments. They’re a write-off). We qualify for a house-help service, so we actually get a cleaner for three hours a week, paid for by the government. So that’s pretty good.

The MS society in the eastern states has a toll-free number which I’ve been debating calling. I probably should have last week, to be fair, but I know mum would get really upset if she thought she was making life difficult for me, which makes it trickier to use the phone. I think she realises I’ve been worrying a bit because she apologises a lot for the randomest things, like feeling tired.

Right now, my main problem is sort of working out how much to push her. The relapse has run its course and most of the symptoms are gone, her short-term memory’s basically back which is a relief, but I’m trying to work out what the damage is, if you know what I mean. In the past, I’ve been content to let her say “I’m too tired” and then just do something for her, but then she went for that therapy last year and gained a lot of skills back, so now I’m thinking, “But what if I just pushed her harder, she wouldn’t deteriorate as quickly?”

Little things, like taking her shopping… if she says she’s too tired to keep walking, should I make her walk another aisle or let her go and sit on the bench? On the other hand, she keeps trying to drive, but it got to the point yesterday where I was beginning to wonder if I should suggest we swap, because I wasn’t sure she was quite in control. But is it better to let her push herself rather than let the disease get the better of her?

Ah, this is why I’ve got to use the toll-free number, I know. Any ideas from you lot on that front, though?

I’ve got two weeks of term break at the moment and all of the assessments finished (too many essays…) so I should probably get something sorted before uni starts again.

It’s not usually too much for me, I think it’s just because I’d had the lurgey and that had put me behind a little in uni work, so I wasn’t quite well and worried about that as well… I’m a little (a lot) apprehensive about telling anyone or asking for help, really a year or two ago I wouldn’t have dreamt of mentioning a problem like this to anyone, so I’m counting it a success that I told my lecturer and then joined this forum (because seriously I was thinking “it’s not that bad… I’m just being needy… I’m not really a carer, and I don’t even live in the right hemisphere for the forum…”)

I was thinking last year that I might look at uni courses interstate when this one’s finished, you know, “get out while the going’s good”, but then my sister’s moved out now and this has happened, so I’m not sure anymore, I don’t think I could leave without feeling guilty about it (which is obviously a problem) and I think I’m deluding myself into thinking things will get better and it’s always “once this course is finished, I’ll be able to move out then” or “it’ll be better in a few years, I’ll be able to do it then.” But that’s not the nature of MS, so sometimes I worry if I’ll ever feel okay leaving home. It’s not too weird here for a twenty-year-old to still be living with her parents, but it’s getting a little ridiculous, since my sister lives interstate and she’s not even old enough to vote.

See? I’m being melodramatic again.

Sorry again about the long post, and I will try to call the MS helpline soon.

Thanks,
Rachel.

6

Hi again.

Okay hun, I think Im gonna be a bit harsh with you, although my reason for that, is because I feel you are in denial. and I dont mean to be nasty.

Things WILL get worse, not better.

You are just putting the inevitable off.

I know it wont be easy, not at all easy, but, youll stay until its just too hard to move out.

You deserve better.

Make that call!

pollx

1 Like
7

hi rachel

could you use a telephone outside the house? maybe at uni?

that way you could ring the ms society without your mum being any the wiser.

yes it is her ms but you have problems with your role as sole carer so it’s not going behind her back in my opinion.

george jelinek wrote a book “overcoming multiple sclerosis”.

his mother died with ms and then he developed it too.

he is professor and head of neuroepidemiology at the university of melbourne.

might be worth a look.

he manages his own ms with lifestyle changes.

when/if you talk to someone, tell them about the dichotomy between being a caring daughter and also being a young student.

it seems to me that this is a balancing act and that you need to balance your own needs with those of your mum.

i have 2 grown up sons (aged 27 and 28) who live at home with me and my husband.

i would hate for them to be in your position. in fact i am the carer for my eldest who has mental health issues.

all the best to you and your mum

carole x

8

Rachel96,

All the best of luck to you.There is genuine care and wisdom in the responses above, how would you advise a close friend if they came to you with similar circumstances?

Take care of yourself so that you can care for friends and family in the long term.

Mick

9

Yeah, yeah, you guys aren’t the only ones in the last month who have told me to grow a backbone and move out. So, a quick report:

  • I forced her to our GP and took myself along, and the GP took one look at Mum and ganged up with me to get her to the neuro – so we’ve got an appointment for early July. (I know that sounds a long time away, but a month and a half is actually pretty great considering it usually takes about a year!)

  • We’ve joined an MS and Carers singing group, first practice next week. I have high hopes for meeting other carers! I’ve been along to MS meet-ups before, but there aren’t usually carers along there, as well. I’m thinking this way, I’ll know the MS Society people and other carers, and they’ll know me and my situation.

  • I’m staying down in the city one night a week (so gone Thursday morning until Friday afternoon) – ostensibly because I have an evening lesson followed by a morning lesson and coming home when it’s a forty-five minute drive is just too much bother – but the people down there tacitly understand that it’s as much respite for me as anything else! There’s a Disability SA lady in at home on Thursday afternoon for cleaning.

  • MUM’s realised and come (mostly) to terms with not being in the state she was and is beginning to take steps for physical help… For example, we’re being fitted for ramps and safety bars around our more “dangerous” exits. (Best part – it’s on the government).

Which leads me to sort of the current problem, which is Dad, who sort of can’t deal with ramps and safety bars being put in which mean he’s going to take two seconds longer to get out the back door because he has to go around. He’s trying everything he can to get the safety bars moved somewhere else and won’t listen to “But that will make it dangerous for me!”

Mum and I have discussed it – at length – and while Dad’s not in denial that the disease is progressing, he IS in denial that it means anything has to change… and that it WILL, and sooner rather than later. Safety bars are one thing, but I think it will only be a year or two before Mum can’t live in this house anymore – there are a few things which would have to be drastically overhauled, like the kitchen and basically every entrance and exit.

It’s not that Dad didn’t know when he married her that this would eventually happen, it’s just he probably thought “not for a long time”. And it’s been 25 years since Mum’s first relapse and she can still walk, so that’s pretty good going. Which makes it harder on Mum, too, how she’s realising that she can’t do things, because it’s no longer a matter of “twenty-five years ago, I could climb Cradle Mountain”, it’s a matter of “last year, I could walk the length of the house / hold a baby / use cutlery”.

Yup, hold a baby. We had a minor meltdown last weekend at the christening of the daughter of a friend of mine… Just a week old, and Mum said, “I’m sitting down [on a couch], so I think I would be able to hold her here. Do you think I could?” I know the family pretty well and eat at their place when I stay down in the city once a week, so I just went over and said, “Mum was wondering if she could have a hold?” and the baby was handed to me. So I put her in Mum’s arms and she’s like, “Oh, that’s difficult.” “Does it hurt?” “Yeah, I can’t hold my elbow up.” I stuffed a pillow underneath so she could and then she just started crying, “How can it be this hard to hold a baby?”

So I know that when I have kids, that particular built-in babysitter is out of the question.

Mum definitely understands that things are going to get worse, not better, and that it’s going to happen sooner rather than later now. We sort of have a tentative time-scale in our heads that it’s going to be maybe two years at the most before the situation reaches critical and something major will have to give (like the house).

I’ve got a part-time job at an aged care facility, and I’m looking at the independent living units going, “Hmm, that looks really good.” You can be as independent as you wish, get in carers as needed, and the best part is the kitchen and entries and exits are all designed for easy navigation with a wheelchair… much easier than all the money which would be needed to get the house redone.

The only problem is that my parents are in their early 50s… these services are only available to 65 or older (unless you’re Aboriginal, which we’re not, in which case aged care help kicks in at 50). Not to mention that even if Mum might be reaching the stage where an ILU is looking really good, Dad’s still young and healthy and working full-time… it’s a bit of an odd difference.

As for the leaving home thing… As simple as it is to say “get out while you can, ASAP”, and at the moment I probably could (mentally), it’s not that simple. And in thinking about me… while I’m at home, I have a roof over my head, electricity and water and internet and everything paid for. (My parents don’t even make me pay rent – I asked, it’s because they think I earn my keep around the house). If I left home, all of these things would become concerns and I don’t have that sort of money.

Leaving home for uni is pretty unusual here, too, unless you live way out in the country. Mum moved out for uni, but her family was living near Port Augusta at the time and it was literally a five-hour drive to her nearest uni. I don’t see the point in going to an interstate uni just for the sake of going to an interstate uni… in my sister’s case, the course she wanted was only available in Geelong. Since I want to study teaching, that’s not an issue.

(The other thing about teaching – I’d be a fool if I thought I could get a job at the end of it in South Australia. It’s almost impossible at the moment. My options would be either to get a job in the Northern Territory [toooo humid] or join the thousands of Australian teaching graduates every year heading to the UK [easier for me than them, because visas aren’t an issue]. So basically what I’m saying is I’ll have to move out then, whatever Mum’s situation).

So, basically… things are looking up. I’ve got a couple of weekend trips away for myself planned, plus my sister’s home on twixt-semester break next week and I’ll drive with her back to Geelong and spend a few days there… so I’ll be able to have a good talk with her then, plus she’ll have seen for herself how Mum is.

And Mum’s not in denial anymore, which is great (although lends itself to depressive episodes). We’re now working on getting Dad out of denial. Watch this space.

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10

Rachel,

It is not about growing a backbone, I am pretty sure you must be strong to cope the way you are. There is absolutely no right or wrong here, it is about trying to pick the best option out of a group of crappy options.

Good luck

Mick