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Struggling to know what to do for the best

Hi

I am daughter to a 59 year old with secondary progressive MS, my mum was diagnosed during pregnancy 37 years ago. Initially relapsing remitting, my mum has shown a sharp decrease in health over the past five years.

I live about forty miles away, with my husband and three children, one of whom is severely autistic. My father-in-law also has MS and pulmonary fibrosis. My parents divorced when I was 13 and I have pretty much since then been involved in my mum’s care on my own, although in recent years have had my husband for support.

It has got to the stage where my mum needs to move from her two-bed cottage. She has developed hoarding tendancies and the house has become over-run in the last ten years or so. She has been assessed to need help with personal care but this has not been forthcoming because of health and safety providers are not willing to go in because of the conditions inside. I have tried several times to go and clear, tidy up, clean but I cannot maintain because of my other responsibilities, my family and working. Previous care agencies have been in and the relationship has broken down because either they feel the conditions are too bad or my mum finds the invasion of privacy too much. I am in the process of trying to source domestic support but people say they want to help, in a paid role, but then get as far as not turning up for day one and I never hear from them again.

My mum is not easy, she has the view that everyone is ignorant of her needs and that she has been failed by the system. She has turned down help in the past, been abusive to careworkers and blamed family for her predicament. My mum’s other immediate family have more or less given up trying to help in recent years because it has repercussions. They feel that she is being difficult, always has been and that this is her personality and not down to mood swings or depression caused by MS. I can’t honestly make the assumption that it isn’t because the diagnosis has always been there in my lifetime. We had respite for our son in October of last year and spent the three days trying to clear the house, whilst my mum went out shopping on her scooter and brought in more of the same leading my husband to say enough is enough, we can do no more. I have battled on trying to help, looking at alternative accomodation, looking at ways to adapt yet there is no easy solution. The biggest issue is that she does really need an extra care apartment but she isn’t willing to look at any options that are above ground floor or disallow pets (she has three cats that mean the world to her and I understand this but it isn’t fair on them either, at present).

My own health has suffered because my mum will phone daily in distress, I am trying to look after my children and suffer sleep deprivation from my son, I then cannot sleep on his good nights because of anxiety. My mum can be very spiteful, angry and vindictive on the phone and will blame me for events that are completely out of my control. This can be very hard to take and at times I have felt like walking away and letting her get on with it. A crisis meeting was held with Social Services because it was getting out of hand but they felt that despite the hoarding, mental health issues could not be explored because of the reasoning my mum was able to give about her hoard and they also noted manipulative behaviours that indicated she was lucid in thinking, even if negatively so.

Social Services have said that I need to take a step back and concentrate on my children but this is impossible. I cannot ignore the phone in case there is a serious problem, my mum’s health is deteriorating and there is a genuine need for help and the mood swings come and go. At the moment, I am hoping to try again and get some domestic support in and this will involve me being present, at least initially. However, I need my mum to see that she cannot keep putting the pressure on me and I also need space to live my own life. The phone calls take up pretty much all the time we have after dinner to going to bed and then I am either in with my son or lying away stressing. I just dont what to say that gets the message through without seeming heartless.

Are there any organisations outside of Social Services that can assist with housing needs or that can manage MS needs from her own home without the restrictions that agencies typically have.

Any advice would be much appreciated.

Hi Runlkka so sorry to hear your story I feel that you have helped me with some of the symptoms my hubby has and I felt that I was being silly or his obsessions where something else. He hoards stuff two wont get rid of anything not much room left for me, he has been depressed now for a couple of yrs., consultant advised gp to pop him on antidepressants, but gp wont he sys he has two many other symptoms and not happy to drug him up.

So conflicting issues, he hates being alone, wont tolerate change, noise, kicks of at the slightest, mood changes, character changes, buys the silliest of things from eBay. He has food and taste issues, one day he loves something the next he says I must have bought it some where else. I two am at a loss as where to go and get help. From my part I had a heated debate with him because I contacted the M S nurse when he was off his sea legs and running a tempreture for a day a two only to be told to mind my own business.

M S nurse agreed it has to come from him, if they can have a rational conversation then he is the one in charge of his treatment. I think we career’s need to club our resources with new ways forward, competent request, and areas for help and support. Sorry I can’t advise any but if I pick up some good info then I will pass it on to you. Carolx