I have mentioned my wife a couple of times in my Posts on
Linked In and the fact that she is disabled.
This, therefore, seems to me a good time to fill you in about our
situation.
My wife has a number of health issues which, collectively
have hit her very hard and I am now her full-time carer.
There are thousands upon thousands of carers across the
country. The permutations and
combinations of situations are very wide: there are husbands looking after
wives and vice versa; there are
mother or fathers looking after sons or daughters who are afflicted by a
significant health issue; there are adult men and women looking after either
their father or their mother whose health has declined. The list is very wide, some have a family
support network who can step in and help at critical moments, whilst some do
not, but they all put in an enormous effort to look after their loved one.
My wife said she does not want to appear as if she is in a
poppy show, but this is not the case as I am writing specifically about
our situation and her problems.
For Mrs A. the significant issues (to the medical
profession) are Rheumatoid Arthritis, Raynaud’s Syndrome and Lupus, the main
visible indicators are pronounced curvature of the spine, also the fingers and
thumbs of both hands are twisted and distorted by the Arthritis. She also has Osteoporosis and has an
injection every six months and a scan every two years to monitor the situation. A stairlift has been installed in our house which
makes getting up and down stairs much easier.
But, the major problems, really, are the chronic leg
ulcer all around her right ankle and the ensuing damage to her right foot
coupled with a number of falls in the last few months.
The ulcer flared up just about twelve years ago now and
grew quickly in size destroying quite an area of skin. It has reduced in area in recent years but
recovery is very slow. Treatments that
have been tried include:
Compression bandaging
(the standard treatment that helps most leg ulcers to clear up, but not all);
Varicose vein removal
(did not make any difference – not recommended);
Skin graft (sadly
this caused more problems including to the donor site on the left thigh which took
many years to heal over and still remains very sensitive);
Manuka Honey
(regarded by many as a miracle cure-all, however, for many patients the wound
will start stinging soon after application.
We had to get the dressings off and the wound washed clean very
quickly on the single occasion we tried Manuka honey);
Potassium Permanganate
Tablets (dissolved in water and used to soak the wound area to help
clean off surplus matter);
Granuflex Hydrocolloid
Dressings (help to provide a moist wound environment);
Granugel Hydrocolloid Gel
(helps to create a moist healing environment);
Maggot treatment
(otherwise known as the ‘wrigglies’ which are great for removing slough and
detritus from the wound to encourage healing);
Hyperbaric medicine
(this involves the patients sitting in a pressure chamber – equivalent to being
fourteen metres below sea level – breathing pure, high pressure oxygen. The service is delivered by the Royal Navy /
Qinetiq and the NHS in partnership and it is the same equipment used to treat
divers who have got the ‘bends’). This
helped many people recover quite quickly from various injuries and treatments
but, sadly, did nothing for the two ladies with leg ulcers who were treated at
the same time;
Granulox (a
haemoglobin spray which delivers an oxygen-rich film to the wound surface to
aid recovery);
Granulated sugar (interesting
treatment which is supposed to aid wound recovery, but is very effective indeed
in removing slough and much less messy than the wrigglies);
Zinc Oxide (the
wound is dressed in bandages which are impregnated with a Zinc paste, The dressings did seem to encourage skin
growth at the margins, but my wife found the bandaging too painful so they had to
be discontinued).
These are some of the various treatments that have been
used in conjunction with a range of specialised dressings to protect the wound
and encourage the healing process. A
while ago, I was changing the dressings three times a day because of the level
of exudate leaking through, then that improved to twice a day. Now, I am changing the dressing once a day in
the morning and checking each evening before bedtime to make sure it has not
leaked through (sometimes it does and needs a bit of extra padding to keep
everything ship-shape overnight).
We see the Practice Nurse once a week to keep the
situation carefully monitored. The skin
surrounding the wound is quite valid and, as far as I can see, there is nothing
to stop the wound recovering.
Coupled with these problems, Mrs A has had a lot of
difficulty with her hearing for a year now; we are consulting the Ear, Nose and
Throat Department and have had a number of appointments. Treatment is still continuing as infections
and a polyp have been found in her ear channel and until these have been cleared
we cannot get anything further done.
Mucus is being produced in industrial quantities through
the nose and the throat and mouth! Antibiotics
and sprays have been prescribed on a number of occasions for this but nothing
seems to abate the flow. Also, to make
matters worse, she has frequent nose bleeds for no apparent reason; and, no,
she does not blow her nose too heavily – the bleeds just happen. This is very debilitating.
Since having her cataracts operated on a couple of years ago
her eyes have experienced numerous problems.
Following consultations with the Ophthalmology Department at the
Hospital, we are managing the Blepharitis and Dry Eye conditions carefully at
home.
She has a fistula (hole) in the roof of the palate in her
mouth and an obturator is used to block the gap. This device does not always fit securely so
there are times when the hole is not protected and food or liquids can get into
the sinus cavity. Also, she is having
difficulties with her lower teeth. We
are consulting a Prosthodontist recommended by our dentist to see if he can help
alleviate these problems.
Our day to day situation is determined by the level of
pain she experiences and how difficult it is to move about. Mornings are particularly uncomfortable and
we have to avoid booking medical appointments in the morning wherever
possible. The act of getting to and from
various surgeries and or consulting rooms is also something that has to be very
delicately arranged. Up to about one
hundred yards or so, my wife can manage to use her stick with me supporting her
to walk to our destination (from the car), but, over that distance we have to
use the wheelchair. Fortunately, our
wheelchair is of the lightweight and small-wheeled variety which means that it
is very nimble to manoeuvre in tight spaces – but is not comfortable on steep
hills or bumpy pavements!
The range of issues that Mrs A suffers from is quite wide,
as you can see. Collectively, these hit
her hard and this, coupled with the painkillers used much of the time, frequently
make her very sleepy. The mere act of
going out to see a film or the theatre or anything can often be difficult. On many occasions we have had to cancel an
appointment or a trip out, but always very reluctantly and after serious
consideration. And, even so, the waiting
times for clinic consultations nowadays can be very long which adds to the
level of discomfort.
I am using my wife’s condition to try to get her to enjoy
drinking tea (like me). But she still
insists on coffee some of the time. She
frequently describes herself as a bad-tempered old so-and-so and, as far as the
odd cup of tea is concerned, she may be!