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My husband was told that he had fronto-temporal dementia in 2005 when he was
68. I cared for him at home for three years until the cost of home care
exceeded that of full-time care in a nursing home. I was beginning to resent
him hugely, and to resent the toll that caring for him was taking on my own
health.
Since then his dementia has progressed. He is now immobile. He has lost weight
and is unable to feed himself. I “pop in” at meal times as I know the staff
are often unable to assist him. He knows what the food is for but cannot
co-ordinate his movements, so it often ends up down his front.
He has been in his present home for six months. When he moved in, his room was
clean and smelt of fresh paint. Now his room holds - oh, how it holds - the
strong smell of urine and sometimes faeces. The smell stings my eyes. I have
mentioned it to the staff and am told that the carpets are professionally
cleaned each month. They are unable to put vinyl on the floor in case a
resident slips on wet patches. This is one of the better establishments, I
hasten to add.
When my husband first entered the home, the manager told us “don't worry about
anything, this is his home”. But I didn't dare not worry. For instance, I
soon realised that his foot, nail and hair care didn't always coincide with
his needs. I began to cut his nails and hair myself.
It also became clear that if the nurse is on duty, things are done
immediately. But, if she is not, it is at times impossible to find a carer.
Sometimes, having rung beforehand to check if he is out of bed for a visit,
I notice that my husband is soiled and messy, despite my provision of many
clothes. When I complain, the staff come when they have time, which may be
20 minutes later, to shower him and change his pads and clothes. When the
nurse is on duty, and we have rung in advance, he will be freshly showered
and changed and “waiting” for me.
The care at the home is respectful, and the staff that I have met seem
diligent, friendly and patient. There just aren't enough of them. I don't
know what they are paid, but it can't be much or there would be more of them
and they would stay longer. A number of residents have bandaged legs as many
of them suffer from leg ulcers. It encourages me to check my husband over
when I see him, and to roll up his trousers, and remove his socks and shoes,
to check his feet.
Some friends and neighbours assume that now my husband is in residential care
my worries are reduced, but the caring doesn't stop just because he lives
elsewhere. We are “fully funding”, so his savings have gone and now all the
pension that he worked so hard for, pays for his care. I have to top up this
amount and so I now live on reduced means.
The rules state that the local Social Services Department (SSD) “will not
deprive the spouse of the house as long as he/she is residing in it”. But
the SSD does deprive the spouse of a house by default. This large family
home is now too big for me and I cannot afford its outgoings on a reduced
income. If I sell the house, the SSD could claim my husband's share to pay
for the care in the future.
When I was caring for him at home, I used to become tight and tense, fighting
back tears all the time. I tried not to look at him while I pulled a sweater
over his head because I couldn't bear to see the confused look in his eyes.
He has become so far removed from me.
Now, every time I visit him I experience a range of emotions: sadness, guilt,
shame that I resent seeing him this way, love, and resentment that he is
still alive. I do not want to experience what he is going through. I want to
read a book quietly, be grumpy and listen to a radio, and eat cake without
crumbling it all down my front.
One day we found him in the conservatory which had been decorated with spiders
and flimsy paper cobwebs for a Hallowe'en party. The staff were attempting
to play Pass the Parcel. The situation seemed almost surreal. Here were
twenty-four people, all of whom suffered from dementia in varying degrees,
playing a game that none understood.
The “present” was a small packet of paper tissues, which the lady opposite me
proceeded to shred in her lap. Some stared into space; one lady shouted
“nurse” at intervals. I wondered at the point of it all, though I admired
the carers for making the effort.
When I returned from a recent holiday, there was a sheet of A4 on the floor
behind the door. The note was from my daughter who told me to ring her:
“It's about Dad, but he's OK now.” While I was away, he had had a stroke.
The home had called her and she had called the family together. My husband
had looked so poorly that they all thought he was nearing his end. The home
wanted to send him to hospital. The family refused as I had always said that
I didn't want intervention at his end. When I returned he was holding his
own and taking fluids and soft foods. He had lost more weight, his feet were
blistered. He was asleep most of the time, and spoke rarely. At home I kept
the phone by my side during the night. After a week he rallied, and his skin
took on a pink tone instead of the yellow pallor he had before. I realised
that he was not going to die and I began to feel that my life was on hold.
When we went to see him before Christmas, my daughter asked what was his
favourite carol? “St. Stephen,” he said very quietly. I asked him if he
meant “Good King Wenceslas”. He smiled and closed his eyes, as though the
effort of thinking was too much. My daughter and I sang the carol to him
while he lay back with closed eyes, in contentment.
Who am I to say what quality of life this man has? Now I understand the nature
of good care homes: they care enough to keep their charges in this world if
at all possible, advanced dementia or not.
We need more money and more staff
Until recently, nursing and residential homes were commmunities where the
stronger helped the weaker. But in the 1980s, attitudes changed, people
believed that older people should stay in their own homes as long as
possible.
As a result, people going to care homes have become much more fragile and
dependent, so all the care now has to be given by staff and few of them are
able to help one another.
At the same time, local authorities are under pressure financially. They may
claim to spend more on the old than any other age group, but some are paying
as little as £350 a week to look after a person with dementia, whereas a
disabled child will get much much more.
So there is a mismatch between the needs and expectations of homes, largely
because society lacks respect for older people. One of the consequences is
an underfunded system where there is a lack of adequate staff.
By not being able to pay good wages, care homes are unable to attract the
right sort of people to a role that requires emotional intelligence,
unsocial hours and undignified jobs, such as changing continence pads.
If the Government wants a better or more consistent workforce, it must put
pressure on local authorities to pay a reasonable cost for care. If they
did, there would be more money in the system and the staffing issues would
be addressed. Why would you bother working in a home when you can earn the
same wage by stacking shelves in a supermarket? The problems will, of
course, become worse now that the Government has changed the immmigration
rules.
In our experience, the Indian and Filipino staff were alwaysvery goodwith the
elderly. The Government is expecting Eastern Europeans to step into the
breach, but they might not have the language skills, so we will be replacing
them with lower quality staff.
Of course, more staff adds to cost, and this is another point of grievance for
many residents and their families. The average cost of a single room in a
British nursing home is £35,100 a year. It sounds expensive, but in fact it
is extremely good value: for £100 a day, you are getting 24-hour care,
somewhere to live,food and specialist nursing treatment and are being looked
after in a secure environment.
If you have paid your taxes all your life and then sell your house, the money
whittles down very quickly. We need a debate about why people with more than
£22,250 are expected to fund their own care, while those 30 times richer
have the needs of their disabled child paid for entirely by the NHS.
Of course, no-one should expect their care home to smell of stale urine or
have their jumpers boil-washed and we need to take the issue of complaints
seriously. It should be seen as feedback and there should be culture of
learning from our mistakes.
Every organisation should have an internal complaints procedure.
Martin Green is chief executive, of English Community Care Association, the
leading representative body for independent care homes
Where to get advice
FirstStop advice for older people (firststopcareadvice.org.uk;
0800 3777070)
Counsel and Care (counselandcare.org.uk;
0845 300 7585)
Anchor Trust (www.anchor.org.uk;
020-7759 9100);
Saga (saga.co.uk/ltc;0800 0566101)
Help the Aged (www.helptheaged.org.uk/en-gb/AdviceSupport/;
0808 8006565)
NHFA Care Advice Line (www.nhfa.co.uk;
0800 998833)
Commission for Social Care Inspection (www.csci.org.uk;0845
015 0120)
Age Concern (ageconcern.org.uk;
0800 009966)
