Who Cares? I care. We care. We all care!

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!