Dementia, Life, Uncategorized, Wider health care

How to help?

Today has been a difficult day.

Two weeks have passed since I moved in with mum. We are slowly adapting to each other. Me, I am trying to work out what is best. To do lots of work around the house or get my mum to do as much as she can.  I hoped it would be the latter.

Sadly, she sits in her chair a lot, in the quiet.  The thing she despises about care homes.  People sitting around not talking.  No TV, no radio, no music. She says she cannot be bothered. She sleeps a lot too.  But she tells me she does do lots of stuff. She remembers that that is what she used to do.

Then when I get up and do things now, I apparently make her feel bad.  I make her feel guilty because she is not doing the cleaning, the changing of beds, the washing etc.  But if I suggest she can still do them, she says she does do them – every week! She has a routine!  She then makes me feel guilty for breaking her routine.  I do feel like an interloper into her life.

However, I suspect even when I am not here she is not doing very much. She says she changes her bed every week, however I know the bed is the same as I changed two weeks ago. She swears blind she did.  To interfere or not to interfere?  To include or not to include is a major dilemma.

She says she goes and gets a paper every day. I offered and went for a few days. But on the days I did not, she did not go.  But she still says she did.


But to challenge her memory is fraught with angst. She rails against me and says if I think she cannot cope, then she’ll have to move into a home. I am sure she has not quite got it, that I moved in here to prevent that.  I am beginning to realise that this will not be as smooth and easy as I thought. I had anticipated some practical difficulties, but not the constant psychological torment.

I am sure, if I just did the housework my mind would be appeased. The house would be clean and all would be done.  It is me trying to do things with her consent and do things with her that is causing the problems. She takes everything as a condemnation of her ability to cope.

But it is amazing that after each confrontation an hour goes by and you would not think we had had crossed swords at all. She forgets. 

Until of course she goes to bed and finds different sheets and asks. Why did you do that?!!!

Wider health care

Who cares?

There are a couple of recent government changes to the way the people are either cared for in the community and how they obtain payment for those services that has prompted this blog.

To say recent is not entirely true. These changes have actually been going on over several governments in the UK, but I believe it is only now that we are really seeing the results of that poor decision making and poor execution of those changes.

  1. When someone is disabled or sick and needs care they receive a payment Direct to them for them to purchase their own care. Direct payments

On the face of it this may seem a laudable thing to do. Share out the massive pot available for such care and leave the decision making to the person who needs it, marvelous.

Well, marvelous if the person still has the mental capacity to do this. Really good if the person wants the responsibility of employing staff. Excellent if they have the knowledge and expertise to ensure those staff are competent to do the job and have the relevant police checks and annual health and safety training. Oh and the Tax returns and National Insurance payments. This has all now become the responsibility of the person receiving the money.

It begins to fall down when the person either does not have the mental capacity or is too ill or disabled to want to be “bothered with all this”. There was plenty wrong with the old paternalistic system of care but I find this new system just a little bit impregnated with need to save money and defer local and national government responsibility for its less able citizens.

Imagine an autistic young person who is now an adult. He has neither the mental capacity, nor the imagination to want to get into this. He of course needs support and care to continue a productive life but he does not know how to purchase care or what good care looks like. If money is given direct to him in his bank account he is likely to spend it on computer games and pizza not for a daily carer support person to guide him through life.

So in this brave new world this leaves him now open to exploitation either by unscrupulous private companies who provide services for young adults with special needs or his family are left with the burden of purchasing care. Many of them too do not have the skills, experience and patience necessary to wade through the mountains of bureaucracy to apply and if successful keep the essential records of payments given to prove it has gone where it should.

And out there, there are unscrupulous companies who say they are providing care but they employ people with no qualifications. Young people with no life experience or caring experience but who are cheap to employ.  They work on an individual basis with a vulnerable young adult.  They also provide care on an intermittent not continuity basis, which is not good for the disabled person. And if things do go wrong often the person receiving care is not listened to or heard when they express complaints about the care they have received. Their “disability” used as a way to mistrust what they say.  In my opinion often the managers of these organisations are just interested in the money they receive to provide care, not the caring in itself.


  1. Elderly people living in their own homes needing care also have the above minefield of financing their care to negotiate.  But my issue here is about care in the community. Although it is a laudable aim to have people if at all possible cared for in their own homes rather than hospital, how that is supported is causing a great deal of unseen distress.

So people are discharged from hospital and care is arranged for them at home. There is no old fashioned “home help” type service anymore. So an agency is employed to provide the care. If there is nursing to be done a nurse will attend but she may only attend for medication or the ‘getting up’ or ‘helping to bed’ times of the day. This is not the Agency Nurses fault she has a list so long of people to attend in a given time, that she has no time for the kind caring of old. To sit and have a cup of tea and talk.

Yes, there were things wrong with that system too. No system is perfect but this new system is so open to exploitation that really someone should look very closely, very soon.  CQC in the UK take note.

If nursing is required the only option to the patient is to purchase it from a nursing agency. At least that way they know that the person has qualifications,  is police checked and has annual updates.  This is what people who are purchasing this care think and trust, but how is this followed up. Who makes sure that all these agencies do this? Who is protecting the patient in their homes?  Please don’t get me started about nursing homes. The clue should be in the many relatives having to place secret cameras in these institutions to find out the “none” care their relative is receiving.

In the home, if no nursing care is required, can the person trust the “carer” coming into their homes. Yes before I get lynched, I know many people providing this support role are motivated by compassion and caring and want to do the best for the elderly person in their care.  But many roles are minimum wage again attracting people for short terms only. This again is not the continuity an elderly person needs to build up trust with, especially if there are dementia issues.

There will also be the dreadful person who uses this role to access the homes of vulnerable people to steal from them. They do not care as they will move on once they have got what they want.  Who ensures these agencies appoint people of good character and how do they monitor their staff? Yes this happened in the old system too all vulnerable people are open to this abuse but at least in the old paternalistic system it felt like someone cared.


So, harping back to those old days, I make no apology. These kinds of services used to be under the jurisdiction of the local authority. You had a clear line to the person responsible if the young person did not get his visit as arranged, or the “carer” did not do what was required in the elderly person’s home. Now it has become a nightmare for all concerned.

The new word on the block is ‘integrated care’. This embodies the idea that all services required would talk to each other to ensure a seamless transition in and out of services as needed.  This is only possible really the fewer services that are involved. Look at the number of nursing and caring agencies listed in your area. Yes, they are within the NHS or Social Service banner using money from the Government, but these are private companies motivated by profit which is an amount taken out of the pot available to provide actual care to the person.


Again, I repeat I am sure that the majority of people working in these sectors are motivated by caring and compassion. They will be honest individuals with integrity and passion, many are appalled by the current state of affairs but where else can they find employment.

Alas in such a disintegrated system I am losing hope that people who need care do actually receive it. And as for the government and local authorities well, their get out clause is now ‘but we paid to provide the services via these companies. It is up to the consumer to ensure they receive what it is they need’.

Mmm smacks of the shop that sells you goods and then sends you back to the manufacturer to sort it. A proportion of people just won’t be bothered and just put is down to experience. But this is healthcare.  No one at any level in my opinion is currently taking responsibility. So eventually people don’t access care. Don’t ask for the money they are entitled to. This in the long term is cheaper for the government. They will not complain.

I quote from a recent encounter “if people don’t apply, then they cannot access the money for the service”.  What if their illness or disability really does preclude them from doing that? Who cares?!