Hi all - I'm not entirely sure where to start this query and I'll try to keep it as short as possible as it is quite long winded! But I am extremely concerned about my Mum's home care situation and have no idea if I'm right to be, or what to do about it.
My Mum has suffered with MS for 22 years and has been bed bound for about 8 years. For the past 10 years she has had home care visits (from the council home care companies) to take care of personal hygiene, food and medication needs among other things. We have had no end of problems in the past - one care worker from the first company, used to not show up for three/four days at a time, leaving Mum in a disgusting state (I was 13 at the time and the visits where scheduled for when I was at school so I had no idea). When this was uncovered, the care worked tried to bribe Mum with cartons of cigarettes and then lost her job. A later company, in 2009 (at which point I had moved out of home but was living locally) ignored huge warning signs of illness in Mum for two days, and took no action until they found her unconscious on day 3 - she ended up in intensive care on a life support machine for three months as she had pneumonia that her body couldn't fight. She also had a burn on the stomach that was the size my hand and swollen out like a balloon - I still don't know how that happened.
On coming out of hospital, a new care agency was sent as I wouldn't allow the old company back into the house. She has three visits a day to cook her meals, change her catheter and administer medication (along with anything else that Mum might need). Myself and my partner have battled with this agency from day one - the first visit resulted in double dosing her tablets as they didn't read her notes properly. Since then, there has been a grill left on over night, a tumble dryer over loaded so that it burned out and caught fire, two months of rubbish stored outside of my Mum's bedroom window, Mum fed raw meat (accidentally), and many more incidents that it would take forever to list. I issued a formal complaint and had a meeting with a director to discuss the issues and re-draft Mum's care plan to make sure I was happy. One month later, nothing changed - the director had left the company without evening reporting the meeting had taken place.
Anyway (sorry this is getting long now...) - there is one carer in particular I have a huge problem with. I should point out here that as far as the powers that be are concerned my Mum is of sound mental health (even though she has depression and is on medication for that...) I however, disagree strongly. I feel her judgements are impaired due to the depression, her memory is terrible - she will say something and then an hour later have no recollection of it. She will shout and scream at me one minute, saying the most horrible things you could imagine, then she'll calm down and genuinely believe it was me doing the arguing. She allowed my partner a motability car a few years ago, as he did all her shopping, collecting prescriptions etc - a few weeks later she phoned the car company and got them to cancel the insurance and revoke the car as she didn't remember agreeing to him having the car (even though we had to hire a vehicle to get her to the showroom to sign the agreement...)
This carer that I am concerned about, has a key to Mums house that she takes home with her (it is on her own personal bunch of keys) - even though there is a lock box on the wall outside the house with keys in for carers to gain access. She also has my Mum's bank card and pin number. She now does Mums shopping (at Mum's request) - even though Mum has diabetes, she buys her chocolate, sugar, donuts, cakes - all the things that are so dangerous for her! She allows Mum to have full control over her sleeping medication. She has now set my Mum up a facebook page, that she logs on to from home and various other locations to update her status - the page is completely unrestricted and shows Mum's home location and personal information.
This carer really dislikes me for some reason, she treats me like something she's trod on when I'm at the house - she gives met he most filthy look and will then act as though I'm invisible. She hasn't said a single word to be in several years. I am so worried about the level of access and control she has over Mum's life. My Mum and me don't have the greatest relationship, 22 years of her illness has taken it's toll on us - but I do understand it is the illness that has taken my Mum away and it would destroy me if anything happened to her. I am so worried that Mum views this horrible woman as a friend, not a care worker - there is no professional relationship left and the agency don't seem to care or keep tabs on what their employees are up to. My Mum is a vulnerable person, but as far as her GP and the care workers are concerned, it's up to her what she does.
Is there anything I can do?
Hi all. i got a letter today imforming me that someone from dla is visiting me for a medical. it is a doctor. i applied for dla last october and a decision hasnt been made yet. i did ring them last week to ask about my claim. they informed me that my consultant hasnt written back to them and it has been forwarded onto the medical team so i guess this visit is the result of that.
Has anyone had this medical by dla and what happens in the medical. i hope someone can give me an insight of what will happen during the medical. they are visiting meon the 1st feb
Hi everyone thanks for all ur messages recentlu. im now home from the hospital thank god. still not in a good way tho. good really bad shakes body feels totally numb as well. walking is not so good either. not sure if the steroids r going to work and i think if they were offered again to me i would refuse. ive had really bad reactions with them and i dont like it. just feel totally crap now.
Sorry for the moan
Went to see occupational health doc today with my fingers crossed that he would let me go back to work. I last seen him in September and was in middle of having a relapse so pin balled my way down the corridor to his office.
Today I was feeling good and just a bit wobbly and stompy but nope I'm still not allowed back to work even though I said that I've improved and feeling much better plus I'm keen to get back to work.
I'm gutted! I don't know how/what I'm meant to do to get him to allow me back so I'm having coffee and cake and a wee cry.
I wonder if anyone has any ideas - I work from home part of the time, (I have made this choice to try and reduce the impact of feeling tired!) and occasionally have large batches of academic work to mark which entail long periods at the computer (laptop) - I am finding at the moment that I just cannot physically get comfortable - I alternate between sitting at the kitchen table, and sitting in the front room with the computer on a padded laptop tray...
Wherever I am, after about 20 minutes I find something hurts, either my back, my shoulders or my bum! I have tried sitting on cushions or propping them against my back, putting my feet up on the coffee table etc.. however I sit, I still feel sore quite soon - this is wrecking my concentration, and I have a lot to do between now and early next week. I have also bought Dragon simply speaking, so I can dictate (rather than type) for some of the time, to try and reduce the tiredness in my shoulders..
Does anyone else ever feel like this? Is it a symptom of MS or just 'one of those things'? Have you found any solutions?
thanks in advance,
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.