Wow... I feel so sorry for you folks, it’s of no comfort that the system is broken but maybe our voices will be heard to improve how dementia is approached & treated.I'm not sure it is of any comfort to all of you in the UK, but the Care system in Canada is also broken. In Ontario, the options are a private pay Retirement home which is about $4000 a month if you are mostly independant and just want to have meals and medication assistance. If you can afford it there are some retirement homes which offer Memory Care wings which can be between $6000 and $8000 a month. The option for most people is Long Term Care Homes which are partially government subsidized for everyone, but everyone has to pay something. The cost of a shared room, usually 2 residents, is $1900 a month, a private room is $2700. If you have a very low income you can apply for a higher government subsidy but only if you are in a shared room. There are thousands of people on the waiting lists, some homes have 4 and 5 year waits, which continue to get longer because the government entity Local Integrated Health Network manages the lists and determines who needs the placement the most. What has happened is that the only people getting into the homes are in a 'crisis' situation because their physical or mental needs are so great that they can longer live at home or in a retirement home, or with family so they jump to the top of the queue. This is placing such a strain on the system that there is serious burn out among health care workers, and the field is no longer attracting people who want to work like dogs for not much more than minimum wage. Each Personal Service Worker is responsible for an average of 9 residents, on my Mum's floor, all but 1 resident on each team are in wheelchairs, with the majority needing at least some assistance for feeding. They are given 2 showers per week, most residents needing a lift and shower chair to accomplish this.
The result is that there is no time for the residents beyond the basic feeding, cleaning and toileting care. There are residents who sit staring at the wall from 7 am until 9 pm , moving only when it is time for meals, toileting or a shower. Once you are in a home your only contact is the resident manager in the home, you are no longer a 'customer' of the LINH, so your ability to effect change is limited to how much they decide to help you, and what resources they have available to them. I have had to fight for every safety aid, proper dressing, attention to hygiene, and care in transferring without causing massive bruises and skin tears on a weekly basis for the almost 3 years my Mum has lived there, and as a PWD she has no ability to even speak for herself so I will continue to do so.
It is a sad situation with no remedy in sight, it is only going to get worse with the aging population and the increased life spans, and rising numbers of cases of dementia. The PSWs , mostly in their 30's are saying they are already afraid of how bad it will be by the time they need long term care.
So we just soldier on and do our best to provide some comfort to my Mum by visiting everyday to try to normalize this terrible situation. The best thing I have found to help me deal with my struggles is this community of fellow carers. There is no better place than DTP to find people who understand the challenges we face, regardless of where we live,and the agencies we have to deal with and I thank you all for your posts.