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End stage multiple sclerosis - any experiences?

(3 Posts)
bringinghomethebacon Fri 07-Oct-11 17:32:17

Can anyone tell me about this? My mum after about 10 years of being stable (although paralysed neck down) now is losing her ability to speak, keeps choking when swallowing and has just had a bad bout of pneumonia. She is very resistant to additional care and absolutely refuses admission to hospital. I have been visited by the hospice at home team and also we are being fast tracked for NHS continuing care.
We seem to be going into the end stages and I want to manage it at home - any tips on what I should expect or how long I should expect it to last?

hiddenhome Sat 08-Oct-11 18:05:46

So sorry to hear that your mum is so sick.

End stage MS care involves keeping the patient comfortable and supporting their functions as best as you can. How long it goes on depends upon the individual patient, but generally a few weeks is realistic. It often depends upon whether or not infections (usually chest) are treated.

Swallowing difficulties resulting in choking and aspiration (inhalation) of fluids can be helped with the insertion of a PEG tube. This is a small device that goes directly into the stomach through the abdomen. It's done in hospital and is a fairly routine procedure. Food is given in the form of liquid nutritional drinks either via a pump or in several feeds through the day.

Other care will involve pressure area care - this can be helped by nursing the patient on an airflow mattress with regular positional turns throughout the day/night. Pressure sores are a constant risk and need to be carefully managed to avoid breakdown of the skin and subsequent infections.

Pain control - if oral medication can no longer be taken, then pain relief can be given via a syringe driver - a small 'butterfly' needle is inserted just under the skin on the abdomen or thigh and regular, timed doses of pain relief are then delivered.

Chest infections - very common in the later stages. Can be treated with antibiotics and hyoscine (to dry the secretions) to keep the person comfy. Some people choose not to treat infection and just let nature take its course, it all depends upon what the patient wants and how realistic it is to treat after several occurences.

Emotional distress/agitation - this can be treated with sedative medication via the syringe driver. Sometimes something like valium can be used and sometimes something stronger is needed.

Incontinence - most people have a catheter fitted and the usual catheter care is carried out each day. Infections can occur though and will need treating with antibiotic - sometimes a regular dose of antibiotic is given each evening to prevent a full blown infection developing.

Nursing somebody at home can be stressful and you will need support yourself. It's also exhausting, both mentally and physically, so you need to look after yourself and try to get enough rest, food and time away from the situation.

If you want to pm me please feel free to do so. I'm a care of the elderly nurse and I also nursed my first dh through his terminal cancer.

celeriac Sun 09-Oct-11 08:38:22

Have no advice to offer, but just wanted to send my best wishes to you.

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