"Difficulties of caring for a dying relative at home"

I have just had personal experience in dealing with a cancer patient deteriorating rapidly and needing full time nursing care, but has been kept at home as much as possible with a short 2 week stay at a private nursing care home.

The cancer patient and her husband were both in their 80s. The husband has suffered two brain haemorrhages in the past and the cancer patient not only had cancer but also a form of dementia and other factors but these remained undiagnosed by the doctors despite highlighting our concerns they showed no interest as her cancer was terminal.

The patient has since died and during her last weeks in Countess Mountbatten she was diagnosed with Parkinson’s symptoms. I highlighted my concerns here to the doctors and specialists having witnessed my father suffer with Parkinson’s for 20 years.

Some of the issues that have been highlighted over the recent months when dealing with the patient:

1) Too many organisations dealing with the one patient - The GP, the district nurse, rapid Response Team, social Services, occupational Therapist, Macmillan Nurses, Private carers, Benefit team, Oncologist Specialist, plus other team to deal with sanitary requirements, Private Care Home.

2) Communication between all of the above did not happen.

3) No instruction from District Nurses, GP’s or in fact any of the above organisations to the family as to the best procedure, for example sanitary products, instruction on lifting in and out of bed, obtaining draw sheets etc. Instead criticised by one of the above organisations for using the wrong products and procedures even though we were just following on procedures from the Private Care Home and using products that were supplied.

4) No practical advice given for example the importance of keeping liquid intake up to prevent dehydration. No suggestions of using drinking aids example beaker cups straws etc. The rapid changing needs of the patient in my view had not been addressed. All these things were put in place by us, the family.

5) The organisations above would consult only with the patient and therefore reacted to her responses. They never asked for our opinion and when given them were quite dismissive. For example despite the fact that she became totally immobile, she maintained that she could walk well. Very few spent enough time with her to assess these issues fully, they would just ‘breezing’ in and out. The extent of her mobility issues were not realised by the nurses and the doctors. This caused big issues for her husband, especially at night. My question to you all is “what happens to old people on their own and who are not 100% in control and do not have someone looking out for them? This brought it home to me that there must be so many older people in dire situations like this.

6) Equipment that is available to patients and was requested but did not arrive in time therefore by the time it was delivered it was of no use as the patient’s needs had changed due to her deterioration.

7) Even the Hospital failed her by not supplying a measuring spoon with liquid morphine, resulting in her husband giving her an accidental overdose!.

8) “The Team” made a decision to liaise with my father in law who at the time was not capable of dealing with digesting the information and would get very muddled. This is mainly due to the after effects of two brain haemorrhages he suffered in the past. This decision by “The team” was despite being given instructions to contact the family and deal with the family.

9) It took a meeting with 7 of the organisations around the table and the family to decide a plan of action. She was finally admitted into Countess Mountbatten, where she died.