Help

My Mum has had MS for almost 30 years, she has always coped with her symptoms really well and it is only in the last 5-10years that her MS has progressed and she is now at the secondary progressive stage. From around December 2020 mum is now at the stage that she cannot transfer herself from bed to wheel chair ect. The physical side of mums illness we have always managed to help with as a family. However over the last couple of years mums moods have become almost unbearable. Mum will out of nowhere have a complete and utter hatred for my dad, this will last for a 1 week- 2 weeks. In this time mum will get really upset, really angry and ask that we help her leave my dad, it will be a really intense period of time. Then the period of time will pass, mum will forget all about it and then be fine with my dad, happy and forgot all what has happened in the previous week-2 weeks. The problem is that this is becoming quite a regular occurrence, for me my mum most definitely has two personalities and its hard to know which one is how she really feels. The other issue is that this has really took a toll on my dad, he is constantly walking on egg shells and is now just broken emotionally. Myself and my sister are now also starting to struggle, this has been going on for a couple of years, its hard to think that this will be our lives for the future with positive end sight. We have reached out to mums MS nurse and GP but there seems to be no help for us. We love both our parents dearly but they are both mentally struggling and im worried this is going start affecting myself and my sister. Surely there must be some help out there? what should we do? Any help/advice is must appreciated. thanks

Hello, oh love, I do feel for you all.

Your poor mum and dad, like me and my OH, have had to adjust our lives to accommodate this relentless monster.

I am 68, been married for 49 year…23 of those have had 3 of us in the marriage…ie me, him and MS.

My fella is my main carer and I have a small team of carers coming in twice a day.

My carers are a release for both of us…they give me someone to chat to and time away from caring for hubby.

Life to outsiders looks good…but some days we could scream and run from each other…if I could run!

What about thinking of having carers come in?

Boudsx

Hi, the relentlessness of the condition in long term advanced stages can seriously affect the ability to deal with things mentally. My wife has been through a series of mental health problems as a result of the advanced condition including a serious stage of psychosis (seeing ceilings bulge, people in the room etc.) and milder things like thinking there are two of me. I put all these down to the pressure of being confined within your body which is restricted, whilst you mind is still fully active. The more serious situation needed a mental health team involved to break through this, and used drugs to help together with crucial ‘talking therapy’. The milder situations tend to be able to addressed if family and friends around to naturally do the ‘talking therapy’. But Covid has impacted on this and zoom really doesn’t help in the same way. So we are also struggling with this at the moment, trying to avoid escalation, but support is very limited indeed.

I hear you Anon 2 and understand your situation.

Hang in there sweetheart.

Boudsx