by J. P. Forest
Much of this article could be conceived as a work of fiction, I would like to examine care homes and end of life expectation for people with dementia. Most people love their family members, and if possible would like to care for them when they are sick. But for many, the time comes when they cannot cope, they feel that their lives have been taken over; they might feel that they are losing an impossible battle, they argue with themselves, they live in torment, they are being strangled. Then one day they reach the decision, they will seek the services of a “care home”. This is the easiest way forward. The responsibility is passed forward. They visit every day, but see changes that they cannot deal with, so they visit every other day, twice per week, then weekly, they run, they hide, they cry, they despair and sometimes they stop visiting altogether.
This is the lot of the past carer giver now retired, they have choices, they are often hard choices born of desperation, but what of the lot of the person with dementia?
What was once their home becomes a strange place, they drift between today and yesterday, their young wife or husband is replaced by an old man or lady. Worse, their wife or husband is no more, where are they, where is my Don, my Jane. They awake in a room surrounded by strange things. And people telling them what they must do, these strange people hovering over them, getting evermore angry or upset when they knock over a cup, or forget a name.
More strange people visit, then one day their bags are packed, they are going on a holiday.
This holiday will last for the rest of their lives, and where they spend this holiday will be dependent on many factors, Personal wealth, family ties and connections, education level of family members. The list is endless, but life is a lottery. Again I do not wish to generalise. There are many good care homes out there. But my experience is that the best are rare and far and few between. Care for people with dementia is I believe fragmented, eyes close as the front door also closes, frightened, vulnerable people find their bad dream quickly becomes a nightmare, but why?
Let’s start with the fate of many middle or working class people, they find themselves sent for their holiday in a home that has to pay its way, there is a budget, in no particular order lies the owners profit, staff wages, food, running costs of the building, dealing with bureaucracy, late payment by families or funding bodies, it is a financial nightmare, so where does activities and therapies fall, before food or profit, I do not think that this is often the case. I believe that these fall near the bottom of the pile. So you have been booked into a hotel, they have locked the front door, the entertainment is cancelled, you are taken from your room for your own good, and put in a lounge with someone who is calling for their long lost husband or wife, someone else is pouring a drink into a hat whilst another is leaning forward with the intent of falling to the floor, hotel staff are busy in another room filling out forms. And your highlight will be a cup of tea in a plastic cup that goes cold before you realise that it is there, you ask to go to the toilet, but nobody hears you. Then a member of staff walks by, “I need to go to the toilet” you cry, I will get someone they say or, I have just taken you, now sit back and relax. Perhaps they just ignore you and walk away, you have become invisible. The hotel is no good, but you did not make the booking, someone else did. And the door is locked.
In many cases, our care systems are broken. Not in all, but in many homes. There is little stimulation, this costs money, care staff are paid poor wages, and moral is often low, many do their best, but when they ask for help, they too are ignored or told to be quiet if they want to keep their jobs. I am painting an ugly picture, but for many this picture is very real.
“How often do you have entertainment”, “what’s the point, they have dementia, they will forget all about you once you have left today!” why are dentures falling out, why does mother have fungal nail disease, why is fathers hair unkempt, why is gran upset? Why has grandad not had his pad changed, why are my wife’s hands dirty, where are the staff? So many questions, but who is asking them. Not always family members, many of them have not been in for some time, and when they visit, it is for but a short time, and if they did ask the question, who would listen and act?
We see pictures of some foreign orphanage with children lying in their own excrement, we are disgusted. But when we get old… no, this does not happen in our country does it? Some people are lucky, they have won the lottery, they live in the perfect home, they are stimulated, protected, treated with humanity, they are clean and well fed, and the vicar comes every day. But for many this was once upon a time, and a long long time ago. Many people will criticize this article, and some will have harsh words. So I say to you, take out your phone book, and put a pin into 10 care homes in your area, visit them, and ask yourself, “When my time comes to be taken to the hotel, is this where I would like to spend my days”? Then go there every day until you also become invisible. When the staff forget you are there and carry on with their paperwork, or disappear to make beds because there are not enough of them, and they cannot keep up, or get people up who wanted breakfast 3 hours ago, but are given it 30 minutes before lunch is served. If you see such a home, one that makes your skin creep, the home that you would never want to stay in, you can turn and walk away, as you leave, would you turn and look into the faces of those that cannot leave, they have no choice, they have dementia and few people care. The door is locked to them.
This is all lies, it does not happen, don’t you agree?
Some might think that our care system is fragmented, inhumane, a cash cow for the few, peace of mind for many others, and hell for those sentenced to spend the rest of their earthly days within its solitude. I could not possibly comment. I hope that I win the lottery.
There are good care homes; I accept that, I have worked in some of them. The question is, how many bad ones are acceptable,1, 10, 50, would you knowingly put your family member into one of these homes? Would you book yourself into one of them? If you did, how would you get back out again? Now add the fact that you have dementia to the argument, I ask again, how will you get out?
Myself, when I get to the point that my family want to send me to a hotel, I will try to make certain it is on a cruise ship, meals will be brought to me, I will have company and entertainment all around me, a doctor will be on call, my room will be cleaned every day. Each morning I will have a new view, and it will probably cost my family less to keep me there. Being at sea, they will have an excuse not to visit be too often. Win win. Should every care home be based on a cruise ship, or luxury hotel? Who would pay for it? If payment is out of the question, then we will just have to carry on in this world of winners and losers. So what can be done to lift the standards of care within the home system, The care home should be responsible for providing sufficient properly trained humane staff, The home should be clean, and food must be of a high quality and nutritious.
Each home should have an independent professional who will ensure that teeth fit and are in as good an order as they can be, the customer is clean and
hair brushed, nails cut and treated, nobody should ever have to wait for the toilet, no matter how many times they want to go, and pads should be a last resort. This professional should not be an employee of the home, but paid by a government dept., this will enable them to report failings without fear of losing their job.
Entertainment and therapy should not be trusted to the home, it sucks profit, and is often denied. Each home should pay an allowance per resident to a
government agency; this agency will use this money to ensure that everyone is given the best entertainment and therapy available. All therapist’s would be vetted, and their value to the client assessed, they would also be the eyes and ears who might spot abuse, and be able to report it without fear of losing their jobs.
Should staff complain to some outside body, “only if they want the sack” some might say, this must never be the case. We might find ourselves in a hotel when we get older. What is acceptable to you? What hotel will you stay in as you reach the end of days?
This fictional article was written for discussion purposes only, and issues raised are the opinion of the author, they do not reflect upon any individual, company or organisation. Please discuss.