Dear forum, I am a newby to this forum, but desperately need some advice from those who have experienced similar situations. My mum has MS and has had it since she was 28, she is now 76! For the last 40 odd years she has managed her condition extremely well, always taking control of her diet, keeping fit (yoga), latest treatments and advice etc. She has been having bladder problems for the last 4 years and two years ago was catheterised with a long term catheter. Since then her health has taken a slow decline, she was diagnosed with dementia in march this year. She was hospitalised for acute treatment of a bladder infection and kept in a bed for four days. She came out of hospital unable to walk and with a grade one pressure sore on her right hip. That was in June, since then her diet and pressure sore have both taken a decline. The district nurses and social workers are trying to convince my father to put her into a nursing home, which neither my mum or dad would want. They are frightening my dad saying the pressure sore is life threatening and they are seriously concerned that her dietary intake is inadequate. I am a qualified nurse and work in the field of home care, my thoughts and gut feelings are that mum should stay at home near my dad. The emotion of separating them would be too much to bear for either of them to cope with. They have been married for over 50 years! And I truly believe that both the pressure sore and the diet can and should be managed at home. My dad can manage at home but just needs some rest bite care periodically, and perhaps step the carers up from morning to morning and afternoon to allow my dad to get out for a couple of hours in the day. Has anyone had any similar experiences dealing with social services? My feeling is that a nursing home is the easy option for them and they therefore are passing the book of care onto someone else. Any help or advice would be great fully received. Many thanks Banksv
I agree with you Banksv, your mother should be able to stay at home if that’s what she wants, and all the agencies should be doing everything in their power to allow this. With a suitable care plan, equipment and support this should be possible, although the pressure sore could be really problematic. BUT, there obviously won’t be 24 hour support in the home, and I wonder if your father will be able to manage in the long term? I was in a similar position with my husband who was bedbound for the last 3 years. He was at home with me and we did have visiting carers, but there were times when I needed help with him when no carers were due and I had to call on one of my children to come and help. I was in a lucky position that they live quite local and we muddled through! He had occasional pressure sores which did take a long time to heal (and every nurse had different ideas on treatment), but over time I got to recognise the early signs of a new one and managed to control things before they got severe. Do you live nearby and can support them? And your Dad should also have a carers assessment because his well-being is so important too. I really feel for you, and wish you all luck - it’s not easy dealing with all these agencies! June x
Hi, I work for a charity that deals with dementia. I am not medically trained or high up just a lowly administrator but my understanding of this is that social work cannot force someone into care unless they can prove that being cared for at home is doing them harm. They take into account what help is available from family and up the package of care to include visits from carers morning, noon and night, they also have self directed support which means you can choose to purchase a care package that suits your needs. I know this is what happens in Scotland so apologies if you live elsewhere and things are different. Have you contacted Alzheimers Society (I think that’s what it is called in England, in Scotland it’s Alzheimers Scotland) to ask them for help, they may have Dementia Advisors who can help with your dealings with Social work. As you are a nurse and you and your dad are willing and able to take care of your mum and with financial help in the form of the directed support and the backing of Alzhiemers Society you should be able to convince them your mum is better off at home. I hope this helps. Linda x
Hi Banksv. I’m sorry to see that you haven’t had much response on this site, and wonder if you should post it again on Everyday Living. Many more people go on there and I’m sure you’ll get lots of constructive advice and support. x
I don’t know how much help I can be as you’re a qualified nurse so will probably know most of this anyhow. But I’m a student nurse, and recently looked into pressure sores. A couple of useful sites might include http://www.epuap.org/ ; http://www.npuap.org/ ; http://www.nice.org.uk/cg29. From what I know about social care provision, your mum gets the choice about where she wants to be and where she wants her care to be provided - the only exception being if she lacks capacity (and a senior doctor would have to have done a mental capacity assessment on her if there was any question over this). Even if there was, they have to act in her ‘best interests’, and I imagine that includes what the family (you and your dad) feel is best for her, unless they can show sound medical evidence to the contrary. In regards to providing the care, she should be entitled to an assessment of her needs from an occupational therapist who may be able to come out and assess the home. I agree with comments about that your dad should have a carers assessment to see what support he needs and may be entitled to but is not recieving. But no, I don’t believe that they can force your mum into a home, and they shouldn’t be allowed to unless it’s what you all feel is the best thing, and most (not all - some can be life threatening) PU’s can be treated with good nursing care.
Forest has put most of what I was going to put around capacity and best interests. I work for social services and deal with situations such as your parents. Yes some people I’ve dealt with have gone into care but our ultimate aim is to keep people in their own homes. We often have a problem with this when they have nursing needs as health can be quite pushy stating that they need to bein care etc. I do think this is a way of passing the book as nursing needs can be met in the home by district nurses etc? I’ve just dealt with one lady who had dementia, pressure sores etc…health have been very pushy over the last few months trying to get her into care. I did a mental capacity and best interests assessment which stated that whilst she lacks capacity it is in her best interest to remain in her flat and the care can be provided (carers on site) . This was done with professionals and we managed in the end to get health to fund under chc. This lady died last Tuesday, peacefully in her own home where she wanted to be and where her family wanted her. What I’m saying is don’t give up, speak to your social worker. If services are needed direct payments is a good route as you can get PAs who are more flexible … Again I worked with another lady who was confined to bed, had PAs and great family support. She too remained at home until she died and was I’m her nineties by that time. Good luck and keep us posted on how you get on. If you need any advice feel free to pm me and I’ll see if I can help xxx
Hi, like everyone else has said, if your parents want your your mum to stay in her own home, then that`s what should happen.
I``ve had and still am having, great input and care from District Nurses, Social Services and OTs. My own condition has progressed quite rapidly over 13 years and our house resembles a nursing home! But all this equipment helps us enormously.
There was a time when I would have said I wouldn`t want all these gadgets and gizmos in my home, but they help me live an easier and safer life. So why would I not want them?
i do know pressure sores are a dangerous and very painful thing to have, but with careful nursing, they can be managed. Hopefully no more will occur.
As you are well up on the subject of home care, can you have a word with the district nurses and explain how their actions are upsetting your dad?
It sounds like more care would help both your mum and dad. Can you get this sorted on their behalf?
I hope things settle down for you all.
My mother, Della Lundquist, was a resident of the Care Center from 1/15 until 9/16, and she loved it there. There were activities going on every single day, the food was good and the staff was so caring and dedicated. They kept us informed of any changes in her or her routine. We felt like the [Edited by moderator] staff was part of our family, and we knew she was being well-taken care of! It was a wonderful place for her to spend the last of her 105 years.
blasted UTIs cause no end of misery.
i realise that i go loopy if i have a UTI (well a bit more loopy than usual).
it makes me cross to read that your mum was kept in bed for 4 days resulting in a pressure sore.
fight her corner and get support for your dad.
also look after yourself because caring can have an impact on your own well being.
Reading you post it seems uncomplicated, she got the pressure sour in hospital, so, how would a home help her. But ? Can you and your dad cope with meeting her needs ? Can you get the help & support you need. She is your mum not your patient. That must be very difficult.
All the very best with making dissonance. Big hugs