Unexpected problems

I’ve been caring for my husband since September. He has motor neurone disease which is developing rapidly as is our knowledge of this new world. I expect the hard work, sleepless nights and so many levels of worry, about now and the future but there are some problems I didn’t expect. The reaction of some, those who stay away, those who are angry and take it out on those actually doing the caring. Families member who ‘do’ denial, do diminish the impacts and become distant or criticise from afar. I am sure this must be normal and despite trying to just focus on my husbands needs, the hurt these family members are causing occupies much of my head space. I don’t suppose there are any practical solutions and trying to talk it though has been disastrous on the few times I have tried. I thought all the relationships were in a much better place and I’m devestated.

Alison, I’m so sorry this is happening. When it became apparent our son had severe learning difficulties both sets of grandparents went through a phase of there’s never been anyone in our family “like that before”. He’s now 40, but your post immediately reminded me of all the hurt it caused. Neither set of grand parents EVER took him out for the day, husband’s parents would look after him at their place, not my parents. Our lives had changed forever we needed all the help we could get, but everyone stepped back. Horrible.

You now know how selfish all these people are, seen them in their true light. They are concerned about their own feelings, not yours. You are in a terrible situation and they are making it even harder. I’m sorry you are being let down so badly, how can they possibly criticise in these circumstances???
Don’t put up with it. Tell them to leave if they won’t help if they are visiting, or tell them they have no right to criticise and put the phone down. Is your husband now getting Continuing Healthcare services?

Thank you so much for taking the time to respond and I am so sorry for your experience, that must have caused such pain and harm. Almost unbelievable of grandparents and you are so right that you see the true characters of people. So many who you think would be standing firm beside or behind you are not there and then the wonderful kindness and help of neighbours and friends. I don’t want our final memories to be of this but it is occupying so much time and space as I’m honestly shocked by it. I think we have enough to do caring round the clock for people we all love, surely that should be enough to centre around that, what should be unconditional love? We have a PIP in place, informal care at the mo,net rhough myself and one daughter, some hospice support we have been referred to and a CHC assessment next week. So many appointments and clinics which for us are to out it bluntly, a waste of time. Some tiny hacks that make life a tiny bit better from the OT but that’s what works and the calendar is absolutely full. I think I miss our old lives and dreams much and wish people would all gather and just be helpers.

Hello and welcome!

I’m going to advise reducing contact. Seriously stop making the effert to stay in contact with them. Why should you bother? They clearly do not give a toss about you.

Hi Alison,

My Gran had Motor Neurone Disease and I was her family carer during this time. I too experienced the same as you, in that there were so many friends and family members who either didn’t show their faces at all or ‘acted’ like they were helping and being so supportive when all they were doing was creating extra problems for us (sounds so trivial, but I remember when Gran was still living at home, some of her family members would visit and they would never straighten the sofa throw/cushions when they left- did they expect my Gran to suddenly magically be able to walk over and do it herself?!)

We had Gran’s funeral on Monday and there were so many people- all I thought to myself was ‘where were you all when she was actually alive and needed you all?’. I held my tongue for the sake of my Gran, though- she would have hated me to cause a scene!

If you ever need to talk to someone who’s seen this dreadful disease, please send me a message- it would be nice to be of some use, now that I can no longer help my Gran :slight_smile: xx

Hi and I am so sorry for the loss of your Nan, thank you for replying and I can feel the sadness in this. Not only the loss but the thoughtlessness of everyone throughout. I think there are a million ways people could help and yet there are a million ways people make things worse. I get sofa thing and all the other small things that would make a difference, it is the little things that matter. Nothing will make our life better in a big way so it’s just the little things, birds singing, beauty, kindness of strangers and just responding to requests like don’t move anything in the house - I care here 24/7 and there are reasons things are exactly as they are. MND is a terrifying disease and the most surprising people have been the best and those that I think will have regrets soon, we don’t seen one month to another. I wish I could not worry about this last lot and just celebrate the helpers but I feel sure the others must know how hard this all is to lose so much of someone we all love so quickly, I wish we could have gathered round that and I thought we were better than this. We got the showy stuff at hospital times but nothing and I mean literally nothing that helps day to day. I wonder what they are thinking or seeing and try to involve them but they are so angry and I think there is something complicated going on that they hate me for doing what they can’t do themselves.

Hi Alison,

I’ve responded to your PM, but also wanted to reply on here to the above. The people who do the ‘look how good I am’ thing in hospitals and during the ‘big events’ will never change. I had to bite my tongue at Gran’s funeral because these same people were acting like something they’d done for Gran once or twice was made out like it was the most helpful thing ever (stupid things like spending 20 minutes getting Gran’s pillows right- this was something I did every single day, through Gran’s tears, anger and frustration until it was right).
People react emotionally to terminal diagnoses in different ways. Some people lash out, others become introverted, some people cry, some people carry on in denial- please don’t think it’s anything to do with you because it most likely isn’t. I have a Great Auntie who used to spend her time making jokes and laughing and I couldn’t comprehend how she was able to do that when I couldn’t even muster a smile. I myself went through some very angry stages- I would lash out at everyone around me for a time.
Take it day-by-day and you’ll get through this xx