I REALLY DONT KNOW WHAT TO DO, PLEASE HELP

Caring for someone with MS
1

Please can anyone help me?

My mother has been suffering from MS for a number of years, not long after her diagnosis she just gave up hope. Despite having a very close family network she told us all it was her problem and she would deal with this her way. We have watched her deterioration and she rapidly lost the ability to weight bare. She has been living in her bed for a few years now and although none of us were happy with this as a way of life for her she always reminded us it was her life and we should allow her to live it the way she wants. I recently saw my mother and she was skeletal. This is no exageration! Her bones are jutting out from under her skin. She has had minimal input from healthcare professionals although recently she had been engaging a little with nurses. She will not let us (her family) discuss her situation with these nurses and I feel that they are failing her. Surely when they saw her emaciated appearance they would have been able to do something. I, along with the rest of my family am at my wits end and really dont know what to do or what I can do. I can’t go to see her doctor because I have tried this before and was told they could not discuss her case with me. Can anyone give me information on whether this is normal in sufferers of MS?

2

Hi Robbo,

I’m sorry to hear about your mum.

What you describe does not sound “normal” for MS, but then it such a hugely variable disease. Some people can be confined to bed within literally months, but I would say that’s at the more extreme end of the spectrum, and not typical. From the way you describe it, it does sound as though your mother’s problems may be primarily psychological, rather than physical, and that she has chosen to stay in bed, rather than having it forced on her by disability.

I’m afraid that if your mother is of sound mind (I’m assuming she is, as making choices others don’t approve of wouldn’t be enough, by itself, to conclude otherwise) then the nurses won’t be able to intervene further, without her consent. For example, you cannot force-feed someone, or start making plans to get them up and out of bed, if they won’t cooperate.

You can surely express your concerns to the doctor, so that he or she is in the picture, even if professional ethics stop him or her openly discussing it with you? I’m wondering if your mum needs an assessment by occupational therapy, or even mental health?

Somebody on these forums recently recommended a character called a “Community Matron”, who is for people like your mum, who cannot very well access services or go to the doctor by themselves. Could you ask the doc whether your mum could be referred to a community matron? The community matron should be able to do some sort of assessment of what is needed, and engage other professionals, if appropriate.

But again, it does rother depend on whether your mum will cooperate. If the community matron thinks she should be seeing, say, a psychologist, or a nutritionist, this can’t actually be forced on her. You say she does interact a little with some of the nurses. Is there any she would trust enough to accept suggestions without becoming angry and defensive?

I’m sorry I can’t offer anything more concrete. I do think making the doctor aware is an important step, even they’re unable to discuss it with you. Does your mum like/trust her doctor? If you could persuade the doctor to do a home visit, would your mum be open to what he or she might say, or just be angry that the doctor turned up at all?

Tina

3

Hi Robbo,

You seem to be, quite rightly, concerned about your mum. I have an alternative suggestion in that sometimes progress can be made by involving Social Services. It appears that your mum is not getting sufficient nutritional intake for her level of activity, hence why she has lost so much weight. I suggest that this is unusual for someone who is less active - normally people do not cut their intake and with being less active they tend to increase their weight. The loss of weight can give rise to a number of problems other than the most obvious eg pressure sores.

Does your mum have a care manager or other regular contact with Social Services? If not you should get a social worker involved, often they will instigate a multi-disciplinary review which will include health and social professionals. They will also consider her mental state/condition and if they believe she is taking decisions deliberately detrimental to her overall well being will involve family members.

I am not suggesting that you should go down this route to the exclusion of other suggestions and what you are doing now - merely to add this as a possible course of action to bolster what you are doing already.

Hope it helps.

4

My husband (now bed bound) is the most obstinate man ever when it comes to his care.

Between me and his dad, we deal with ALL his medical needs. Husband didn’t want the carers… he thinks me and his dad can manage and are just being ‘lazy’!!! But we told him carers were needed, and he actually now accepts them, indeed gets on well with his regular one.

Same with the OT - he didn’t want bed rails, or a hoist, or a ‘hospital bed’. Me and his dad got the OT in - he refused to engage with her, so me and his dad sorted out what was needed - they are all in place, and he is much more comfortable (and safer) for it. Although he doesn’t “want” any of the equipment, he will accept it when it’s here.

Maybe you can ring Social Services - explain the position. My husband has gone as far as telling our OT to “f*** off out of my house”, but she knows he rages against things and she accepts/ignores. Please don’t think we bully my husband - the fact is that he has a hard time accepting his level of disability - hence he doesn’t see the need for help - until it is actually there.

As for the GP… our GP talks to me directly about his medication (regular or changes to), I attend GP appointments instaed of my husband where he gives me advice, prescriptions etc, in fact the neurologist appointment a few weeks ago was just the neuro, me and his dad. I’m not sure why you’re GP is telling you he cannot discuss your mother’s condition - I know there is patient confidentiality, but if you’re asking for advise and help, surely they have a duty to do this? If your mother is bed bound, surely it is a better option for you to attend a GP appointment than it be a house call? Maybe it makes a difference that I’m officially logged with the GP as his carer - maybe you can officially notify as your mother’s and see if that makes a difference to their attitude?

As for your statement about ‘normal’… what’s normal in MS!!! My husband lost the ability to weight bear in March, and since the summer has spent all but 20mins or so in bed. He draws the curtains because of his sensitivity to light. He is asleep most of the day. If I go in there during the day, he will tell me to go away more often than not because he wants to sleep. His way of dealing with things. Maybe not what I would choose - but he seems to have lost the will to fight.

Perhaps he summed it up for me last night when he was waiting to go into the hospital for another urine infection. He didn’t want to go and told me to cancel the ambulance. As it had taken nearly 2 hours to pursuade him to go in the first place I refused. (OK I didn’t, after 3 hours sleep the night before I shouted at him) “you know you have to go in - you’re dehydrated and have an infection and it could bl**dy kill you if you don’t. Is that what you want?”. His reply? “Yes. I’ve just had enough”

Sad, isn’t it? He’s 43 - we’ve got kids of 5 and 8. Maybe everyone has their cut off when enough’s enough - maybe he’s reached his, and your mum’s reached hers.

Hope I’ve not offended you with anything. I hope you get the help you’re after - but I think you and I have to understand that we’re not the ones living with the pain, and the knowledge that every day we may be worse. We live with the pain of watching them - but it’s their choice.

x

5

Hi, you`ve received some excellent advice, from people who are caring for very difficult folk. So you can relate to them.

It was me who mentioned the Community Matron. This woman was a Godsend when we were having problems with my ma in law.

Your GP surgery will have her contact details.

Good luck.

luv Pollx

6

Thank you all very much for responses. I am very much aware that my mums condition has been greatly enhanced due to her psychological frame of mind. She has been playing ‘mind games’ with all of the family. She continuously tells the most ridiculous lies to us all. She threatens us that if we go against her wishes then she will not talk to us again and my dad is a shadow of the man he once was due to the effect that all this is having on his own mental and physical health. I am still unsure of what routes to take but just knowing that there are people out there who have or are experiencing the same problems is a source of relief for me. It seems every time a speak to people with experience of MS they have an inspirational story of how they fight on. For my mum she gave up as soon as the doctor gave her a diagnosis.

Once again,

Thank you all very much.

Robbo

7

Thank you all very much for responses. I am very much aware that my mums condition has been greatly enhanced due to her psychological frame of mind. She has been playing ‘mind games’ with all of the family. She continuously tells the most ridiculous lies to us all. She threatens us that if we go against her wishes then she will not talk to us again and my dad is a shadow of the man he once was due to the effect that all this is having on his own mental and physical health. I am still unsure of what routes to take but just knowing that there are people out there who have or are experiencing the same problems is a source of relief for me. It seems every time a speak to people with experience of MS they have an inspirational story of how they fight on. For my mum she gave up as soon as the doctor gave her a diagnosis.

Once again,

Thank you all very much.

Robbo

8

Mind games are common with MS!! My husband rings his dad (lives 4 doors away) to tell him that I’m not doing stuff for him - last week I had “refused” to put his socks on for him, get him a flannel, give him painkillers…Me and his dad are wise to it - he hadn’t asked for his socks or a flannel, and he’d taken his maximum pain killers (we’d had a discussion about it a few minutes before he rang his dad). He then told his dad that I had asked his step mum to give him 2 sleeping tablets - it was actually paracetemol. Oh, and he told the doctor that me and his dad are keeping him in bed and refusing to let him use his walker, or get in the car, because then we would be done for fraud for claiming carer’s benefit and DLA (he hasn’t been able to load bear for 7 months!)

The mind games will be easier for you guys if you’re all aware… talk to your family. Me and his dad used to be at loggerheads the whole time because we believed what husband said - now we realise that most of it is pure lies (intentional or caused by confusion I don’t know) we get along fine. It released a lot of pressure, when we stopped fighting against each other the whole time, believe me!

x

9

Hi, just thought I`d tell you about mindgames my ma in law played, when she came to live with us, to help me when I retired on ill health in 2000.

At first we all got on great. Ma and I went out together and had fun. Then she began telling lies about me to my hubby (her son). He didnt see that she was manipulating the situation to make me look bad.

Eventually he did and then let her know. he got her re-housed her, but it was a difficult 2 years. I nearly left him because of her. Ended up she was jealous of any medical attention I got. She said her legs were tired of going upstairs to bed, whilst my bedroom was downstairs. we got a stair lift installed for her. One day I saw her walk passed it and go upstairs. I asked why she wasnt using the expensive stairlift.

She said she could quicker by herself! Chuffin` cheek of it, eh?

There were other incidents, but I wont bore you with them.

luv Pollx

10

The mind games are dangerous, and by far I feel the worst symptom of my mums MS. I dont know if the MS has caused her to be like this or if it is because she has been confined to bed and feels isolated. She isolated herself as she would ban us from going into her room to see her and when she did let us in she would have you back out in a flash. any of us can go in to see her feeling great and by the time we leave we are defalted and disheartened. She will find fault even if there is none. At first I used to think it was because she had built up her own wee world where she had some form of control over things. But now a just her as being nasty and vindictive. She is my mother and I love her with all my heart, she once my best friend but now shes no longer that person. I did read somewhere that the effect MS has on the brain is similar to a stroke in that it can leave scars which can effect the persons personality. I will do all I can for her because I know she is still my mum but I feel that the symptoms of her MS have robbed the world of the truly intelligent, fascinating and wonderful woman she was. Poll I think your a real inspiration to people on here. Ive read other threads that you’ve replied on and threads that you’ve started. I only wish my mum had a little of the determination you do. Big respect going to you.

Robbo

x

11

Hi Robbo, it is really sweet of you to say those kind words to me.

Your mum will continue to control the situation, as long as you all let her. Easy to say I know, but people can be their own worst enemies.

Your mum is lucky to have such a caring son as you. But she probably cant (or wont) even see that, as she has locked herself into this miserable existance. Its gonna take its toll on you, but I hope it doesnt roll on for years.

Good luck and bless you.

luv Pollx

12

Hi again. Have you made enquiries about your mum`s local Community Matron? If not, i do urge you to.

luv Pollx

13

just to let you know, maybe,just maybe your mums ms has affected her mental state in a way,she might NOT be able to help herself,in the same way as loosing the use of your legs, due to where the ms chooses to do the damage, its like saying people that cant walk choose NOT to walk,my ms is affecting my mind,like demntia now, i know exactly what its doing to my mind and theres NOTHING at all i can do to stop it,i have had ms along time now, and this lesion that is causing the dementia like symptoms is by far the worst ms symptom i have ever had, be very careful not to judge your mum like lots of people judge me and others, by thinking that its somehow our own fault why our ms is bad.i have fought my ms for years and vowed it would never get bad,but it has,i know for a fact ,that many think its ‘because i am not fighting it’ and i am all for positive thinking helping,but maybe your mums ms has damged that part of her brain,and if it has .well theres not a lot anyone can do.some people need to realise that for some of us, ms can be severe,through no fault of our own.you could ask for her to have a physciatric assesment.and then you would know if she can indeed help herself,or not.i would much rather loose the use of my legs than loose my mind,and the worse thing is KNOWING that you are,and no able to do anything to stop it.

14

Hi I’m new on here. I’ve been living with my partner for just over 5 years. He was diagnosed with MS in 1996. Last year I left my job as a care assistant and am now employed by him via direct payments. This works very well for us on the whole, but since I took over this role his social worker and O/T have both closed their files on him as they say he no longer needs their input. It’s true to say he has all the equipment needed for his daily living. The only people we have dealing with him now apart from myself are his community nurses. Although in general we manage well, and as a trained carer I am well qualified to accomodate his needs, it feel a bit as if they are saying " we are paying you to look after him, so get on with it." The only visitors he has now are his mum once a week, his sister once in a blue moon as she is very busy and a one pair of married friends wh once again visit rarely. All his other friends have drifted away, and I moved here from Norwich, leaving all my friends and family behind, so social interaction is difficult.

WE go out out when we can, but as he’s in a moulded wheelchair now we have to use a mini bus which can be very expensive and as with a lot of disabled transport, subject to school pickups which take priority. Also it can be difficult to go out out for too long because of issues that prevent him being out of bed for more than a couple of hours at a time. When I was working nights and looking after him during the day I was entitled to a sitter to give me a break, but that stopped as soon as my new contract started.

I am able to leave the house for short periods of time to visit the local shops or go for a walk, but due to his needs that’s all I can manage.

My partner is a very loving , caring person, and helps me in my caring role as much as is possible for him, and I have no complaints about him. He is very intelligent and has a wicked sense of humour, and we laugh a lot. Although he curses MS itself he is able to make light of the majority of the symptoms. I hope nobody minds me ranting on, but I don’t want to be gloomy in front of him and have nobody else to talk to.

Megabird x

15

Thank you Anon for saying what you did. I am exactly the same as you. I know my mind is going and I dread going to bed every night because I feel (rightly or wrongly) that each night takes another little bit of my brain. As you say, it is by far worse than losing your mobility (or it is for me). I can’t make decisions, can’t stick to them if I do try and make them, can’t remember things from minutes previously, never mind days or weeks ago. (Long term memory is much better). Am just hopeless at anything that involves using my mind and I used to work in Personnel, Pay and Finance in my previous life lol.

Very best wishes to you

Dawn

16

Hi Dawn,just think people should realise that ms lesions can and do, affect the mind, i was the most efficient ,organised,strong minded person, i brought 2 kids up,worked full time,in admin,ran, an office fulltime,and was so proud of the way i coped,with everything, now i am bedbound,and i know for a fact people think i have a choice in the matter,when in fact i dont ,i can just about manage to get to the toilet,on a good day.i kept dong brain training,had to stop,because anything that makes my brain work,floors me,for weeks, cant even do a simple crossword.if i try i get really upset and confused,even reading has to be done,no more than 10 minutes at at a time, i used to read a book in a night,i think that lesions in this part of our brains are so played down, even by the medics, i know when i was assesed by a neuro physio,they realised that it was a lesion causing the problems, that sort of helped me,because for years i was told it was all in my mind, when i knew it was more than that.i knew all along just what it was,its trying to get it through to others.

17

i meant neuro physciatrist,not neuro physio.