Hello, my name is Leanne and I’m 28 years old. My mum has had primary progressive MS since 1998 and I’ve played a part in caring for her since then, especially within the last two years since losing my dad to cancer (he was my mum’s main carer until he became too Ill and unable to - bless him). So to try cut a long story short, shortly after losing my dad, my partner and I bought my mum and dad’s house and put an extension on it to allow us a little privacy and space whilst still caring for my mum. However, with the amount of carers in and out the house, as well as doctors, MS nurses, therapists etc it really takes it’s toll on our relationship some days and we feel like we spend the majority of our free time shut away in our bedroom. We don’t even invite friends or family round! The worst thing about the whole situation is that some days I feel like I resent my mum, I totally understand that none of this is her fault and that she didn’t choose this life but I can’t help the way I feel, Is this normal?! I feel like I missed out on a lot of my teenage life due to feeling constantly guilty about my dad having to look after my mum (I’m an only child) I would make excuses to come home early when out with friends or wouldn’t go out at all, now I feel like I’m missing out on the most important days of my life, e.g. my partner and I can’t seem to agree on any positives of bringing up a family in these circumstances! How could I care for my mum and a baby?! Anyway, I guess I just want to hear how younger carers cope (if there are any) and I guess it’s good to vent - first time I’ve joined a forum! I could have blabbed on all night about all my frustrations but I know I will hopefully wake up in the morning in a better mood. Thanks for listening, Leanne
Hi Leanne
That sounds very sad. It’s such a shame that MS has coloured virtually your whole life. And now that you and your partner are in effect living on the edge of your mothers life it must be very difficult for both of you.
Do you have any respite breaks? Ie where your mother can go away for short breaks to give the two of you a chance to just be alone together, or to take a holiday yourselves?
It seems a shame that you’ve bought a house and yet your only private space is your bedroom. Is there any other way of giving you a bit more space, for example to have a sitting room for the two of you? A space that doesn’t entail you in effect having just a bedsit, but some space to just be together?
I can completely understand that resentment sneaks into your brain from time to time. This is natural and is totally separate form loving your mum. You can love her and be happy to care for her, but still feel that you’re missing out on the normal setting up home with your partner and planning life and a family together.
I’m sorry, I have no answers for you, I just wanted to empathise from the perspective of being a person with MS.
Sue
Hey Sue. Thanks for your reply, yeah it’s extremely difficult… we definitely underestimated just how hard it would be when we made the commitment. Yeah my mum gets something like 4 weeks a year of respite breaks, However, she doesn’t like going! She gets too sore whilst at respite as they don’t seem to have a comfortable enough chair for her so she spends the majority of her time in bed and misses out on games, movie nights etc. So ends up staying at home instead. Sorry I should have mentioned, we do actually have our own sitting room as well which is fab, it’s right next to the kitchen though (carers etc are in and out constantly) so not as private as we would like hence the bedroom hideaway but I guess we should be grateful that we do have our own place to sit. I really appreciate that you understand where I’m coming from, I wish I could have a conversation like this with my own mum but she can actually be really selfish and ungrateful at times… she openly admitted last night that she doesn’t appreciate the sacrifices me and my partner have made to live here with her… if I knew that and could turn back time I’d have built a granny flat for her down the bottom of the garden instead ha ha. I am so sorry to hear that you also suffer from MS, having to live with someone and seeing them suffer from this awful disease is no where near as bad as being the person having to battle through the disease itself, you are a trooper. I hope your surrounded by great family and friends and manage to enjoy your life as much as possible xx
My wife has in last few years needed quite a bit more help from me following an injury and now MS but i don’t yet consider myself a carer and certainly am not young(mid 40’s), at times i get very frustrated and am very glad i get to go out to work all day!
I have been with my wife for about 13 years and we have a disabled daughter(my step daughter)of 22 who is fully wheelchair dependant and non weight bearing.For a number of years(after my wife had a bit of a meltdown!) we have been having carers coming in for our daughter and for a long time we really struggled with this “intrusion”.Now due to my wife’s health we have no choice and they are in every single day atleast twice and we reluctantly accept it, most are nice but some moan on and on and really annoy me(and recently even more so my wife) as they appear unable or unwilling to stand up to their employers. The best never seem to last long sadly!
Years ago Kayleigh had regular respite care with a wonderful family but the lady got cancer and had to stop sadly.Had none for a while then some where something just wasn’t right and she was actually dropped on her head on one occasion.We stopped this and social services did stop these people doing respite.After that we had none for years,then regular arrangement at her school and now nothing again for 4 years. I would encourage your to try to get your mum in respite as it is for you more than her and it really is needed sometimes.
There is certainly nothing wrong with sometimes feeling resentment as a carer and is normal.
All the best
Ollie
Just a thought - are you eligible for a carer’s short break funding? Some Local Authorities will pay grants for carers to go away for their own respite - I know it’s not much but I know people for whom this is a real positive; it it’s at all possible maybe you and your partner could take the opportunity to have a break from home life just the two of you while the LA cover Mum and your holiday?
There’s a lot of provision for carers from LA. Its finding out about it and accessing it. I’ve had carers coming in for years, but yeah, you do have to think, oh crap the carers coming at 8Am…no lie in for me…
I was going to say a better solution would have been to have given you mother a granny flat. You both get some independence then. If this is a regular house, can you turn the upstairs into private rooms for you?
You need to sit down with your mom and maybe a social worker and exlain that for YOUR health and for you oartner, you need a break. i recently became co-carer with my partner. He’s on dialysis which ties us to the house 4 days a week. We quickly realised we needed a break from each other, or we’d go nuts!! You have to be firm with your mom - in some ways, the dynamic has turned around - your the carer, she’s dependent, but she has to accept that too.
I’ve been thinking…if my hubby or kids were here they would say ‘they could smell the smoke’.
Is the issue that you want to start a family & you can’t see yourself being happy being a new mum in your current situation?
to you this may sound like a strange viewpoint, but it sounds ideal to me.
Being at home with a baby is lonely. - you can’t get a descent conversation for years ! Also ‘couple time’ goes out the window for some time after having a baby… Sit down for a meal together & babys needs come first. Why not combine this period in your life. However disabled your mum is her support (emotionaly) will be invaluable. When my kids were very young I spent hours at my grans house, not for physical help (she was in her 80’s). But somehow being around someone who loved my baby made the round of feeding / changing etc enjoyable rather than a chore.
Also my take on life now, (Dignosesed in early 40’s). No one knows what’s around the corner. It could be a bus with your name on it. It could be alsorts of s;:t. But if you see your partner as a life long one and someone who would be a great dad !
if I am way off or I am giving too many opinions I am really sorry. A friend who has waited for the perfect time is struggling to have a baby.
all the very best and I truly hope you find a way that works for you.
Hugs