Struggling to know what to do for the best

Caring for someone with MS
1

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.

2

eee dear me, you poor woman!

Having got my initial reaction out of the way, I want to try to help you.

Obviously your mum is very manipulative, as already has been said.

As a loving daughter, you are unable to walk away from this situation, but are drowning in despair with it all.

They say hoarding is a mental issue, as a person who is sound of mind and logical,would know that this isnt the normal way of living. Hoarders have an inner impluse to keep things beyond what is ususal. I remember watching a programme about a Polish man who felt the war had taken his family and possessions in his own country, so he felt this country mustnt do the same. it was a Mr Trebus.........I never forgotten his name or story. The council did sort him out, over a few years and he finally went happily to an olds people`s rest home. I felt an affection and was sorry for him.

We all have possessions we`d like to hang on to. Things like birthday cards, baby clothes, photos and all manner of other stuff. But practical living dictates that we simply dont have the space to keep everything.

Now, as an offer of advice, not many poeple know about some called Community Matron. I posted about this a while ago, as I felt it would help some of us here.

These bods usually deal with the elderly amongst us, but as your dear mum is pushing 60 and has serious issues, they could help her/you too.

Ring your mum`s GP surgery and ask about it, yeh?

I hope this helps. I dont know how you are carrying it all. But your own children MUST come first.

luv POllx

3

me again…I forgot to say how I came across the CMs.

We had my mother in law living with us and things had become very difficult, especially when hubby was caring for me too.

We got mil into her own flat and she was fine for a while, then when she became difficult again…saying the carers had stolen her money…saying her neighbours had stolen her tablets and were trying to sell them back to her for £1 a pill…pretending to lose money, then it was found stuffed behind a cushion…other things happened too.

She wasnt safe to be on her own and she had alienated her carers.

I found a CM from somewhere and she was like a wizard…charged into action and mil was moved to a lovely nursing home.

The CM even visited me and got some equipment for me.

luv Pollx

4

What an awful time you are having. I am very moved by your plight. The experience with social services assessment and their acceptance that the hoarding was fine and dandy did give me a mirthless laugh, and their suggestion that you ‘step back and concentrate on your children’ gave me another - I assume they had no suggestions as to you you might manage that! These people seem to be living on another planet sometimes.

With such a briar patch of difficulties, there are no easy answers, obviously. A couple of half-thoughts did occur as I was reading. First, might your husband, suitably deployed, be a real asset here? You are probably too close as the daughter. Can you, for instance, envisage a case where you have come up with an action plan for her to move into somewhere small and easier to manage, with her cats and a minimum amount of her junk, and your husband reads her the riot act and says that this is what is going to happen and no nonsense? She wouldn’t take it from you, but might she take it from him? Just an idea. That’s all longer term, but can he help with the phone calls business now? Whether it is you or he who lays down the law about exactly what is acceptable and what is not on that score, I think you need to bite the bullet and do it, and soon, and then insist that she sticks to it, whatever the resistance. Forgive me if I am totally off beam here, but it might be that your other half would feel more able to be firm with yoru mother in limiting your her scope for burdening you (and him) if he had your explicit permission and support.

This is all calling on you to be tougher than you want to be. But the fact is that your resources are finite, and wishful thinking will not make you able to solve your mother’s problems until she is good and ready. None of this is your fault. It might well be that things will only change when a crisis arrives. Just take care that the crisis is not one caused by you buckling at the knees.

Good luck with it all.

Alison

5

Hi runikka. I am a social worker and have been faced with similar situations many times and feel frustrated when the client refuses to comply with what we would say was common sense, whether that be cleaning up the house moving to a care setting etc… It is the law that restricts us, as we cannot legally enforce anything on your mother if she refuses and this includes care. I expect it has been seen as not appropriate to carry out a mental capacity assessment, or if one has been done it has said that your mother has the mental capacity to make her own decisions despite that these decisions may not been seen as being very wise. Have you tried an answer machine with your phone switched to silent. This way your can periodically check the phone and see if your mother has left you any messages. This way you can have control over when you pick them up rather than having your mother ringing whenever she likes. You can then decide whether you call her back. Thinking about care agencies I would expect that most of them would possibly refuse to visit/enter the building if they believe that their health and safety was compromised. It may be that your mother needs befriending first, building up trust with the carer and who in time may be able to encourage your mother to start looking at her possessions with a view of clearing some out. The carer would need to show acceptance first of your mothers situation and move very slowly so not to offend or seemingly invade her privacy. It may be worth ringing up social services and ask about befriending services, these could be voluntary. The meeting with social services, out of interest was your mother there? And if she was what was her response to things getting out of hand. In my experience some families have used the opportunity when the client has gone into hospital to clear out the property, but usually hoarding resumes once back at home. Community matrons can be useful when someone has a long term condition but it will be up to them to assess and determine if they can support, and how. Thinking of the Polish man, I think he got sectioned under the mental health act, I may be wrong, but that is the only way professionals can infringe on someone’s human rights. Has your mother got any friends, or places that she regularly visits (church, day centre, cafe) they might be links there to a person, not necessarily bound by health and safety, who could support your mother. It will be harder for you to maybe know this living 40 miles away. I wish there was an easy answer. Yvette x