LIVING WITH LUPUS

We have a family friend who has suffered from Lupus for thirty-five years. As we are half way through Lupus Awareness Month, we would like to share her story.

Initially she felt very tired all the time. She had two sons under five and was expecting her third son when the family situation changed and she was left on her own to cope with three sons. Unlike the eldest two sons her youngest son wouldn’t settle and it was five months before he slept through the night. Naturally she felt tired even after sleep and although she visited the GP several times, he just said it was natural to feel tired with three small children.

Eventually she arranged to have a blood test, which showed anaemia, lupus and rheumatoid arthritis, although it took another ten years before ITP (connection between rheumatoid arthritis, lupus & platelets) was diagnosed.

Initially she was treated at St Thomas’s Hospital but saw patients in wheelchairs & with disabled stickers & found it too much so she transferred to her local Hospital. She was given various drugs but they proved unsuccessful. Gold injections were tried but they gave kidney problems so the Gold injections were stopped. A Locum Doctor from St Georges’s Hospital, Tooting, thought that having her spleen out would help the platelet problem but the removal of her spleen made no difference. It was decided to try Retixamab, a chemotherapy drug and she has been receiving infusions every 6 months in 2 fortnightly, 5 hourly sessions for the past few years. At last, this treatment has on the whole been successful.

Lupus brings with it many related difficulties. Her Autoimmune system is damaged and her platelet levels have been as low as 1. Her joints become very stiff, especially coming up to an infusion of Retixamab. She has Thyroid problems, suffers from migraines and is prone to kidney infections and pleurisy.

She is also however, the most positive and up beat person we know. Recently retired at 67 after a long career supporting young children, her work ethic was excellent. She was a real ‘Girl Friday’ willing to help with any task in a cheerful manner. She made cakes for staff every Monday morning and would welcome visitors with a tea or coffee, despite being unwell or in pain. She is still very hard working, gardening, decorating, sewing, etc. She is always ready to help people and is a real inspiration to others with the belief you only get out what you put in. Living with lupus may not always be easy but if you have the right attitude, you can achieve anything.

If you or anyone you know has been affected by lupus, we would love to hear your story at katiee@theablelabel.com

For more information on lupus, including symptoms, triggers and some pointers, take a look at Lupus UK’s website

HOME INSTEAD SENIOR CARE

Last week, Katie visited the Home Instead Senior Care head office of the Tunbridge Wells, Sevenoaks and Edenbridge branch. Greeted by the 
lovely Symone, they had a cup of tea and a long chat about domiciliary care. 
So impressed by the homecare services they offer, Katie felt it was important 
to write about them.

For those of you who have not heard of Home Instead before, they are 
specialists in non-medical homecare of older people. In the same way 
The Able Label was started, Symone too was moved by a personal 
experience with her Grandmother. This led to her leaving a successful 
career in management in pursuit of starting up a business whilst making 
a difference.

Catering for a variety of individual needs, Home Instead offer many 
services ranging from a few hours a day up to 24 hours, 7 days a week. 
There are three key categories of service; companionship, home help 
and personal care. A few services available under these categories include:

Companionship Services

– stimulating mental awareness through conversation, reminiscing and 
recording family history

– accompanying on trips, visiting neighbours or family, going out for lunch 
or to appointments together.

– participating in hobbies and crafts together or helping with reading

Home Help Service

– assisting with weekly tasks including changing bed linen, washing, ironing 
and dry cleaning.

– preparing shopping lists together, doing shopping and putting items away.

– providing light housekeeping, take rubbish out, care for houseplants and pets.

Personal Care Service

– assisting with daily tasks like morning wake up and evening tuck in as well 
as bathing, grooming and dressing.

– providing respite and convalescence care

– helping with medication reminders and assisting with eating.

A victim of their own success however, the Tunbridge Wells, Sevenoaks 
and Edenbridge branch of Home Instead are so focused on finding the right 
staff, they are currently unable to meet demand. Symone maintains satisfying 
current at-home clients’ needs first is the priority but even these individuals 
are requiring increased hours from their services.

The shortage of staff is predominantly down to their high standards when 
recruiting. Symone explained that in order to give at-home clients the best 
possible care, they only employ individuals who have been pre-screened, 
scrutinised and carefully checked. With compassion at the heart of employment, 
caregivers go on to receive extensive and continuous training before they 
are paired with an at-home client. “The match has to be right for both if the 
service is to work” Symone emphasises.

Katie found herself moved by the compassion of her and the team. Everything 
they do is centred on one simple question, “would I be happy with my 
Grandmother receiving this care?” This is what sets Home Instead apart. 
There is a focus is on building trusting relationships and providing mental 
stimulation, which is all to often neglected within care. It is not about ticking 
off a to-do list, it is about speaking to individuals and working with them to 
tailor a care plan around their specific needs. This in turn helps to give the 
at-home client as much independence as possible as they work with them 
not to them. This gives them much more meaningful and fulfilled lives.

If you are keen to find out more about the services available, please take a 
look at the Home Instead website. Otherwise if you are based in the 
Tunbridge Wells, Sevenoaks and Edenbridge area, contact Symone 
directly at symone.salwan@homeinstead.co.uk to see how they can help 
support you or you loved ones.

Alternatively, if you are interested in flexible and rewarding part-time work 
around the Tunbridge Wells, Sevenoaks and Edenbridge areas, Home Instead 
are looking for caregivers. Please contact Symone directly on 01892 731264. 
No specific experience is needed, you just need to be reliable and have a 
passion for caring for other people as full training will be provided.