Nobody is available to cover my dad’s basic personal care needs, let alone give my mum the four hour weekly break she has been entitled to take since she began caring for my dad 3 years ago. And then it must have slipped the elusive creature - social workers - mind to mention my mum would be entitled to take FIVE WEEKS FULLY FUNDED RESPITE EACH YEAR!!
Then there’s the day centres who dad could use - if he wasn’t double incontinent!!
I’m guessing this all sounds very familiar…
Anna, welcome to the forum.
Can you tell us a bit more about dad’s situation, age, disability, what he needs help with?
Are you in England or Scotland?
Welcome. Where do you live? Can you tell us more about your dad or not?
Thank you for the warm welcome bowling bun and thira.
So, my dad fell of the roof in 2016, two days after he turned 64. He survived with spinal cord injury at T6/L1, severe communicating hydrocephalus, and significant cognitive impairment. He has, however been assessed as having capacity to make his own decisions though it became clear quite quickly that my mum needed to act on his behalf for everything from phone calls to arranging the home adaptions etc.
His disability impacts him both physically and cognitively. Due to the level of spinal cord injury he isn’t double incontinent and besides catheter changes my mum manages every aspect of I say continence care as he is not capable of doing this himself. He also can’t access the upstairs bathroom or bedroom as he is only ambulant in a wheelchair. This means he has to be moved manually by my mum, whether turning him in bed at night or during the day, or lifting him on and off the toilet. Of course his bowel is not managed well meaning many many accidents a day to clean up. This is all very exhausting for a man with severe brain damage.
As his insight is impaired he needs to be encouraged to wash himself. Carer comes in and runs a basin of water and brings to him and hands him a flannel. Always seems to avoid helping with the commode and catheter bag changes. Accidents on the bed - forget about it. Legs it asap. Spends maybe a maximum of 10 mins helping. Means mum does everything really. Hair washing, shaving, foot care, nails, bum wiping. Takes her all day. He won’t ever go out. He is too afraid of accidents.
He has dysphasia from prolonged tracheotomy and often chokes on food. Always scares us, sometimes needs a massive slap on the back to dislodge the food he’s choking on.
Weird dreams and hallucinations. Gives people different names. Thinks I’m still a child though I have two children of my own. Quite aware of his own loss. Grieves it. Oblivious to our loss and grief. We care for someone who is not who he used to be. Has no empathy, little emotion, extremely libel though. This man is not my dad. My dad died with the accident. My mum lost her husband. He just doesn’t have capacity to be a dad or husband anymore. My daughter can’t bare to be near him. His angry outbursts saw to that. He is very rude to us all the time. Best to just keep quiet and see to his needs.
Becoming OCD about time and objects on his table. Institutionalised i would say.
These are very sad times for us. And full of frustration.
On the upside, we finally managed to pull together enough cash to build an extension that will give my dad a bedroom and a bathroom which will help get him clean and give him some privacy. But it won’t actually change much other than him getting cleaner.
Dad just had a week at a nursing home while the build started. Demanded home early. Told us all we put him there to punish him. Had to Be straight with him. He going back when it’s time for mum to have a break. Like it or no. The care staff did fall short in terms of bowel care Andy that is so importantly with spinal cord injury. One care giver shouted at the nurse demanding how he was supposed to wipe the shit of his arse when he only supposed to wipe his hole. ThAt didn’t go well. 
Sorry only seeing this now! Can you afford a care home or not? I’ve just literally returned from a care home not far from my apartment. I was visiting my 24 yo old friend who has a severe physical impairment that means she requires a permanent trach and is on a ventilator after a bad car accident nine months ago. She is lucky having survived.
That is awful seriously. Have you tried complaining about the lack of initiative by the social care workers or not? Also the shouting has to stop. You cannot have nurses failing your dad either. How much training do they undertake? All of this is common for dementia unluckily. There is very little legally which you can do about it (although the illegal options “sound” appealing you do need to look at the wider picture here).
Regarding the nursing home can you write a article for a newspaper highlighting the state of affairs? Or transfer him to a high quality care home instead. There are good care homes out there. Visit all local care homes on a normal day and look around. Prepare a list of questions to ask. Really pay attention to your gut feeling and make notes too. Find out as much as possible. Look at reviews and reports. Start off with the care quality commission site. I recommend this site http://www.carehome.co.uk.
Ask to talk with staff and families of residents as well. Gather details.
Even inspect the toilets- what are they like? Is the home clean and well lit? How is food prepared? Are the staff trained appropriately? This is a big point to consider when choosing a care home for your dad.
Hi Thara,
It hasn’t come to care home yet, other than respite care, and that was just one week. As you can imagine my dad is other enthralled about going back.
Training, I fear, is bare minimum. My dad, even through his limited cognitive capacity can tell, these people are ‘scraped off the dole queue’. Unfortunately this sums up the standard in a £2000 for five days privately funded care home in Edinburgh.
I spoke with a spinal injuries charity and besides empathising, can only recommend their training services for people working with spinal injured people. At a cost to the individual.
Professionally caring - like nursing - Is a calling. Unfortunately too few people have the empathetic nature and physical strength for it.
It is also impossible to go out and actually visit care homes for us. Having improperly managed bowel care means public accidents that must be avoided at all costs. Unfortunately this keeps him and my mum imprisoned as my dad can’t be left alone.
Email or phone then. Will he allow paid for carers into his life or not?
thanks for sharing
Anna, is you dad getting any help from the GP’s “Continence Nurse”?
I have also the same question which you posted. So, here I got some advice which people shared.
Anna,
Have you seen the amazing toilets that can wash and dry as well? I used to look after a man with CP and he had one. It may be worth trying to get one installed to help?
Victoria Plumbing do these, they are called “Japanese Style toilets”. Under certain circumstances you could ask your council to install one for you, where toileting is a real problem.