Good morning everyone! I am new to the forum and excited to know that there is this platform available to be with other MS carers. It is so easy and subtle to end up with a lonely and very challenging role as a MS carer, even to a loved one. The silent void that carers need to be cared for too is something I am awakening to. So I would like to hear from carers here how you cope(d) emotionally and/or mentally with seeing a loved one deteriorate from the gradual onslaught of PPMS, which is the case of my partner. I believe I need not be or deserve to be alone in this demanding and invaluable caring role. I will value your advice and strategies that have helped you cope(d). Thanking you deeply in advance!
I am not a carer but a caree (I have RRMS).
As you are aware, you as a carer need to receive care too.
These things take a long time to put into place.
Meanwhile you need to care for yourself.
Make sure that you get enough breaks during your day, maybe a quiet room to sit and read or nap.
You need to keep in contact with your friends, probably by telephone due to covid.
There are such things as respite breaks which would do both yourself and your loved one the world of good.
These could be at a hospice.
Try making another post entitled Respite Breaks and see what replies you get.
I wish you both all the very best.
Like Carole above, I am not a carer, but a caree too,
My hubby of 49 years is my primary carer. Then I have a team of 1 PA and also use an agency for weekends and back up.
Without these, my hubby would have gone under years ago, I am sure.
I have had PPMS 23 years and it was very progressive. I have very little independence and rely on others for a lot.
Have you thought about getting carers in ? It really is a life saver for us.
To give hubby a break, I go for respite twice a year, which does us both good.
You take care now, yeh?
Thanks Carole for your practical tips, incl. the one about the hospice. Jx
HI Bouds, Yes, my partner also has PPMS for 20+ yrs. and there is a team of carers coming in to help. I fill in the gaps. It is more the emotional pain of seeing the gradual physical decline in my partner over the years that break my heart…and I do not know how to cope as of late. I would like to share my emotional pain with my partner who is also going through this PPMS journey but I do not know how to or how much to say. Do you and your hubby talk about how each other are coping emotionally with the physical decline over time? I would value your insight and advice on this. Jx
Hi Joe, welcome to this forum. I’m also long term support to my wife and we now live with very Advanced MS after 20+ years. How do we cope? Well, firstly we say ‘we’ are living with MS, which is very true, it affects my life a great deal, as well as my wife more intensely. Despite all she has to deal with, my wife still also supports me. We couldn’t do this without the mutual support. We’re often sad at the things we can no longer do, but, the only way to deal with the long term slow decline is to accept what you can still do and really focus hard on that and enjoy the moments still able to be enjoyed. Focusing on the negatives just eats you both up. I don’t ever really get ‘respite’, I work full time (paid carers cover) and then ‘care’ full-time, but you just have to accept this is life and make the most of it. Your mental approach to the condition is key. The natural instinct is to fight it, and we still do battle through infections etc. but fundamentally you have to accept it and live with it and not dwell on what is lost, but what is still available. Hope that helps. You are indeed not alone. Many of us out here. Good to hear from you. Thoughts are with you both.
Hi Joe, no… my hubby doesnt ‘do’ emotion…he cant cope with it.
I have my carers and a friend to offload all that stuff on.
HI Anon,Thank you for welcoming me. I appreciate very much the wisdom you have passed on to me. I echo a lot of what you have said…and share your expressed (& unexpressed) emotional and mental challenges, beside the physical one. It seems like you have developed a matured-coping mindset which I do envy. With my partner’s physical decline from PPMS, I am trying to be more protective and carry out more safeguarding checks over time but it was interpreted as suffocating and told to back off. I am numbed by the lack of appreciation. Both our families are in denial of the MS situation and have not done much to help me cope individually. I am quite emotionally drained. Anon, have you ever thought of walking away from the relationship? If so, what held you back?
Hi Joe, you ask if I have ever thought about walking away from the relationship? The answer is truthfully, no, I have never thought about walking away. I focus on ‘we’, if you focus on ‘I’ too much then yes, life looks grim and you might consider ways to improve your life, like walking away. But the person you’re supporting can’t walk away from MS. I’ll use the ‘L’ word, love, holds us together still, obviously stretched to its elastic limits, obviously very different from the young love at the start of the relationship, but everything else will fall down around you, friends, family, NHS, etc. Your love, in a dedicated, enduring, unstinting partnership may be at the end of the day the only thing left to keep you both able to endure and live what life you can. It’s a stretch, have no illusions, but find the place in your mind where you can focus on this and strengthen it, even when the situations continually overwhelm over long years, and it will pull you through, but needs a strong mental focus. Different for everyone of course, but this works for us, albeit often extremely challenging.
p.s. new MS Society forum coming at the end of April, hope we can all link up better and share valuable insight and learning. We can do this better, together.
Thanks for posting this Joe. Your thoughts and those of that have responded struck a chord. I’m looking after my wife who has SPMS and it’s getting tough, with more loss of her limited functional abilities in recent months. She gets quite down and upset/angry at times (understandably) as I do…more in frustration that I can’t fix this situation and seeing her decline is soul-destroying.
We do have our more ‘up’ times, but tbh they are a bit skimpy at the moment. Unfortunately, no family support (both from very small families who live miles away - we’ve no kids), but carers have def. helped me keep head above water, albeit at times it is dipping below.
I’d be very keen to hear others experiences as well and coping strategies, because this is a pretty rough ride at the moment.
Sorry, don’t have any wise words about your own situation, Joe, tho’ you seem to be weathering the storm better than me? I hope so anyway
Yes, later stage MS can strip life right back to its bare bones which can be very difficult to deal with over a prolonged period, needs a very strong and conscious mental approach. One useful psychological method I find useful at these more demanding later stages of MS, is ‘Acceptance & Commitment Therapy (ACT)’. If you don’t have input from a psychologist, MS Trust have good information on this and a useful you tube intro video. Basically it seeks to enable people to ‘accept’ the various hardships they are encountering. That doesn’t mean ‘give up’, but accept that things are hard, don’t try to fight, run, or hide (our natural responses), just accept. Important stage to enable this ACCEPTANCE is focusing on VALUES, that is what can still be in your life that gets you up in the morning and makes life worth living. Can be hard when life is so restricted and so many hardships but there is always a little something that can be focused on. Then its walking a path towards those values, to give life PURPOSE and MEANING, which does drop off as MS becomes more and more pronounced but with focus can still be achieved. If life is a pie chart, need to keep enough other things, other than the MS issues, no matter how small, to have reasons to keep going, or the MS takes over, dominates the life pie chart and life stops. I find it a useful way to accept all the difficult things we need to deal with, which is hard but can be done, focusing on what’s still good (might just be seeing the sun today for 5 mins for example) and valuing that. The hard thing is making these things stretch to give enough life and worth to keep going sometimes but a strong mental rigour can train yourself to do this. Everyone is different though, but works for us at the moment. See what you think.
Thank you Anon. I admire your commitment and grounded love for your partner. What is different about this new MS Soc. forum coming out at the end of April? Regards.
HI Anon, I am trying now to revisit and revive neglected old friendships, so that I do not think of MS all the time. This allows me to have some helpful distracted time for myself by being able to laugh and chat with old friends - what some called ‘me-time’. Of course, I have to face MS again post me-time but that me-time sets me free from dealing with MS matters for a short while and it recharges me a bit…which I still value as a practical strategy; even if not a big one. Regards.
Thank you Anon for your very caring advice. I am moved by strangers here reaching out to support and encourage me (& others), even though I have little to offer back. I will look up on Acceptance Commitment Therapy. Thanks again.