Hi, My mother is 94 and has been diagnosed with mixed Dementia (Alzheimer's and Vascular). She has had symptoms for many years now (memory issues for at least 10+ years and mobility issues meaning she used a stick / walker and was susceptible to falls but in the last few weeks has been in a wheelchair full time).
Following the death of my father 4 years ago she required increasing support at home from carers (although she was very uncooperative and refused to let them do very much). My brother lived about an hour away and works full time and I live 3 hours drive away so it was somewhat of a challenge. Her health other than the Dementia was quite good, only slight blood pressure issues. Eventually she had a number of falls and was admitted to hospital with broken toes. By this time she had deteriorated and was refusing personal care, medication and had become increasingly abusive. We were advised by social care to find a care home for her to be discharged to as no capacity for care in the community of the level she needed. She has been in an amazing care home (outstanding) for about 18 months now (we pay privately). We had a bit of a battle with social care to allow us to take a best interests decision as Mum wanted to go home and the first assessment had been carried out by a very inexperienced social worker. We got agreement to a second assessment and the social worker agreed we could take a best interests decision.
After a very difficult period of a few months she was calm and settled and loved all the staff (who are incredible). She was eventually seen by the Mental Health Team after some delays/mix ups with referrals from her GP but was uncooperative so they managed to diagnose her through a brain scan that had been done about 10 years ago - they said they would be unable to prescribe any medication as it was too advanced.
More recently she was moved to another unit in the home as following a UTI her confusion and aggression had increased and she refused to stand or try to walk even after physiotherapist input which she refused to co-operate with. She needed to be transferred by hoist to and from bed / chairs etc and was obsessed with thinking she needed the toilet literally every 5 minutes and was becoming increasingly uncooperative. She had blood and urine tests and everything was back to normal but she has become increasingly aggressive over the last few weeks, shouting, has hit staff and spat. She is not sleeping despite prescribed medication and wakes other residents at night with her shouting. Due to the need for more care capacity and the fact that she was upsetting other residents she was moved again after about 3 weeks to the advanced dementia unit which is secure, has a higher staff ratio and more space but is not registered for dementia nursing care. She continued to be obsessed with thinking she needed the toilet and it was taking an hour for staff to help her get on and off the toilet as she refuses to cooperate when they try to use the hoist. She has become incontinent but removes pads (pads, pants and wraps have been tried) and needs frequent changing. She now has another UTI, is on a second course of antibiotics, has been referred to the Incontinence Team and is very aggressive. She can just about feed herself and drink but it takes a lot of prompting and still recognises myself and my brother and can converse about family sometimes, although at other times she is very confused. She has been referred to the Mental Health Team again, has had blood tests which we are awaiting results of and the care home is keeping detailed records. She is on Promethazine to help her sleep, we think she is still on Sertraline and as the GP has recently reviewed meds we will be catching up with the care home to find out the exact position later today. We have discussed a Continuing Healthcare Assessment but know it is notoriously difficult to get help for Dementia patients. We are concerned because the care home is not registered for Dementia Nursing Care and we are worried they may ask us to find somewhere else for her. We are aware that the progression of the disease is different for everyone and had not anticipated the possibility that she may not be able to stay at the care home she is in now (which we are very happy with). We wondered if anyone could offer advice for next steps for us to pursue?
Following the death of my father 4 years ago she required increasing support at home from carers (although she was very uncooperative and refused to let them do very much). My brother lived about an hour away and works full time and I live 3 hours drive away so it was somewhat of a challenge. Her health other than the Dementia was quite good, only slight blood pressure issues. Eventually she had a number of falls and was admitted to hospital with broken toes. By this time she had deteriorated and was refusing personal care, medication and had become increasingly abusive. We were advised by social care to find a care home for her to be discharged to as no capacity for care in the community of the level she needed. She has been in an amazing care home (outstanding) for about 18 months now (we pay privately). We had a bit of a battle with social care to allow us to take a best interests decision as Mum wanted to go home and the first assessment had been carried out by a very inexperienced social worker. We got agreement to a second assessment and the social worker agreed we could take a best interests decision.
After a very difficult period of a few months she was calm and settled and loved all the staff (who are incredible). She was eventually seen by the Mental Health Team after some delays/mix ups with referrals from her GP but was uncooperative so they managed to diagnose her through a brain scan that had been done about 10 years ago - they said they would be unable to prescribe any medication as it was too advanced.
More recently she was moved to another unit in the home as following a UTI her confusion and aggression had increased and she refused to stand or try to walk even after physiotherapist input which she refused to co-operate with. She needed to be transferred by hoist to and from bed / chairs etc and was obsessed with thinking she needed the toilet literally every 5 minutes and was becoming increasingly uncooperative. She had blood and urine tests and everything was back to normal but she has become increasingly aggressive over the last few weeks, shouting, has hit staff and spat. She is not sleeping despite prescribed medication and wakes other residents at night with her shouting. Due to the need for more care capacity and the fact that she was upsetting other residents she was moved again after about 3 weeks to the advanced dementia unit which is secure, has a higher staff ratio and more space but is not registered for dementia nursing care. She continued to be obsessed with thinking she needed the toilet and it was taking an hour for staff to help her get on and off the toilet as she refuses to cooperate when they try to use the hoist. She has become incontinent but removes pads (pads, pants and wraps have been tried) and needs frequent changing. She now has another UTI, is on a second course of antibiotics, has been referred to the Incontinence Team and is very aggressive. She can just about feed herself and drink but it takes a lot of prompting and still recognises myself and my brother and can converse about family sometimes, although at other times she is very confused. She has been referred to the Mental Health Team again, has had blood tests which we are awaiting results of and the care home is keeping detailed records. She is on Promethazine to help her sleep, we think she is still on Sertraline and as the GP has recently reviewed meds we will be catching up with the care home to find out the exact position later today. We have discussed a Continuing Healthcare Assessment but know it is notoriously difficult to get help for Dementia patients. We are concerned because the care home is not registered for Dementia Nursing Care and we are worried they may ask us to find somewhere else for her. We are aware that the progression of the disease is different for everyone and had not anticipated the possibility that she may not be able to stay at the care home she is in now (which we are very happy with). We wondered if anyone could offer advice for next steps for us to pursue?
