Hi, I don’t have MS myself but my mum does and I really would love any advice or support or just any words from anybody that has gone through or going through a similar situation. My mum was diagnosed with primary progressive MS when I was 3 years old. I am now nineteen, with a child of my own. I live at home with my mum, my dad, my partner and son, and am soon to be married and moving out.
My mum’s condition has worsened over the years, obviously, and she now has lost the use of her bowels, bladder and body, apart from her hands and unfortunately due to fatigue spends a lot of the week in bed. Along with the physical toll the MS has taken, it has really taken a lot on her mental health and she is often depressed, and also has very severe mood swings. This puts a lot of strain on everyone in the house and although we try our best to understand, it is very difficult and upsetting to deal with. My dad owns his own company and works very hard to support her and make her financially comfortable, and then comes home in the evening to look after her and on the weekends is always caring for her. He loves her and would do anything for her but he also needs time to himself for his own interests and hobbies as although he is a husband and carer, he is still his own person. So once or twice a week, maximum, he will go out for a few hours with his friends to do his hobbies such as ride his motorbike etc. And she seems fine at first but the longer he is away the more agitated she gets and ends up screaming and yelling at him on the phone to come back and then give him hell when he’s home. She wants him by her side 24/7 which he cannot do due to work, and just wants occasional time to himself. I try to speak to her but she won’t listen. Would counselling help, if they both went and talked it out in a controlled space? I just want to help them as they are both so stressed and have so much in their lives to deal with and their too proud to admit they might need help.
My mum and dad love each other dearly, I must add, and have been together since high school. But the MS has changed my mum’s personality so dramatically and has made it so hard for her to see clearly and react rationally. Had anyone experienced these sorts of issues with their partner with MS or a parent? Any help out there? Any advice or words of support would be greatly appreciated.
(Sorry for the long post!)
So sorry to hear about your mum Becky. It is a horrible position to be in for all of you. I can understand from all your points of view on this. Your Mum will be very resentful I should imagine, but at the same time devastated this illness has changed her, being stuck in a body that wont respond, but still being aware of what her limitations are. Quite rightly your Dad needs a break, but Mum feels she is “missing” out, not because she has the choice but its beyond her control. True saying you lash out at the ones you love. Im sure she is also dreading you leaving, us MSers dont like change Im afraid. She is most certainly scared, things have obviously moved rapidly for her. Your poor Dad must be at his wits end. Is there anyway a carer could be involved? Even if only for companionship whilst your Dad takes a break? Someone she could talk to? Not particularly for giving care just to be on hand, even a confident? Its sometimes easier to talk to people you dont know than hurt the ones you do.
There could be an MS centre in your area, they can help with her meeting others like herself? I think Mum is very fearful, as to be expected, I think a councillor would definately be a good idea, provided they both agree, I really hope things improve soon, sure the situation must be taking its toll on all of you, good luck & take care Tracey x
you all need to speak to your gp.
s/he could refer you on to other agencies and maybe prescribe something for the mood swings.
it is mortifying to become incontinent.
lucky me only has bladder incontinence but it still makes me feel dirty.
my heart goes out to your mum.
but even more so for your dad.
you too because you sound like a lovely daughter.
the ms therapy centres support the family members as well as the person with ms.
would a feminine treat like getting her nails done be something she’d like?
maybe you could find someone who’d come to your house.
i found a wonderful hairdresser who comes to cut my hair.
without my lovely lewis i’d be like the wild woman from … (want to put boneo but that’s a dog treat)
Oh dear, this is a sad story. I feel for all of you, as it affects everyone in the household/family.
Obviously I`m going to offer advice about how my own situation has benefitted.
We have carers coming every day, to get me up, showered, dressed. I am also taken out and on short breaks.
This makes life manageable for my hubby, who was my sole carer for 11 years. I used to get upset and panicky when left alone.
It doesnt sound like your mum would take kindly to this advice, but if something doesn`t change, I fear your dad will have a breakdown.
Try to find a way to broach the subject to her.
Does she come on this forum?
I would be happy to chat with her.
You’ve had some good advice so far. Your dad obviously needs his time away, to recharge his batteries & enable him to love your mum (and credit to him for staying, too many others in that situation don’t). As has been said, your mum has a lot of anxiety, which is why she wants your dad there all the time. I don’t think that will be healthy for her in the long term though. It might be worth speaking to the GP, as there is medication that can help with anxiety. It would be very good for her too if there were other things in her life that brought some kind of fulfilment. That will be very tricky, given her physical limitations. But she could maybe try learning things, like a new language (Futurelearn.com is an excellent site, with all kinds of online courses) This would be good for her mental health, and also mean she can bring something to her marriage.
It would also be worth finding out if there’s a neurological psychologist she could be referred to, as they specialise in dealing with chronic illness.
Thank you to everyone for all of your advice. We all sat down and had a discussion about the situation and my mum is willing to go and see her GP about it and see if they can offer any medications/counselling that may help her. My toddler has a wonderful way of cheering her up by just being around her and I have assured her that even when we move, she will always have us around as we are not moving far. I will have a talk with her tonight about all of your advice and see if she’s like to look into any of it and I have also told her about this forum as she never knew it existed before and to be honest neither did I until the other before got! So I think for now things are looking up. MS is truly a dreadful disease and I hate how it has taken my very bubbly, happy-go-lucky mum away but we all treasure the occasional moments when she comes back. And hopefully with some help those moments may become more often!
I am sorry that things are so difficult for you and your family.
When illness and disability intrude into a marriage and change the relationship from spouse/spouse to (in part) invalid/carer, that can be hard to deal with. It seems to me that the cared-for person can become so consumed with her own misery that she becomes careless of others’ needs and feelings and, indeed, resentful at the idea that they - who are so healthy, so fortunate! - should presume to have any needs and feelings.
Sick people are not always selfish, but deeply miserable sick people can become so, and that generates more misery. Being carer to a spouse is tough: being carer to a bitter and resentful spouse is a million times tougher. In her heart, your mother will know that, and the knowledge probably makes her feel even worse and even more stuck in this wretched cycle.
How to help her find a way out of it? You mentioned counselling, and I think that is worth considering. I would suggest that counselling might benefit both your parents - but individually, I think. It is likely that they both have issues that could do with an airing in privacy. Helping your mother to find a less harmful safety valve for her anger and distress sounds like a high priority - for her sake and for the sake of all of you. Counselling does not make the problems go away and it does not make a person rich or thin or rich or sweet-tempered - let alone mobile, fully-sighted or continent. What it can do is to let some light into that dark, miserable closed loop of bad thoughts that can blight a life. And it is surprising how helpful that can be.