A close friend has early onset dementia - he's 57 years old, been diagnosed 5 years and also has MS. He's in a care home that is nice, clean, has friendly staff etc etc, but I and my friend's wife and family are concerned that what we'd expect in the way of 'care' doesn't happen. I would be interested to know others' comments on our expectations before deciding whether to raise the concerns with the Home's management. Briefly, my friend had poor mobility, but could dress himself, walk for short distances without problem (more a shuffle, but he could do so for several hundred yards without too much trouble). However about 10 days ago he had a fall in the bathroom and broke his shoulder and arm. Immediately after this he seemed to lose the use of is right leg, which he'd previously dragged a little, but now has lost any ability to support him. Probably MS related, of course.
This is a longish list of our expectations - sorry if it's a bore, but if you have the time to review and pass comment it would be appreciated. If our expectations are too much, then we'll modify the way we are tempted to address the issue with the Home's Manager; however if we are right to expect such standards, then we'd like to know that it is failings on the part of the Home whether they are common or unfortunate. So other people's opinions would be helpful. Thank you in anticipation!
So - I would expect my friend to have a care programme which would be regularly reviewed depending upon his evolving condition. This programme would take into account his cognitive stimulation, his physical condition which, due to the MS, can vary from time to time and his general mental and physical well-being being monitored and recorded, with appropriate action taken to deal with any deficiency - not just leave it to persist. However there is no evidence of this – questions asked of the staff are answered vaguely without any real indication that they even think about what his needs might be other than the rudimentary needs of washing, dressing and feeding. The manager seems to have very little awareness of any specifics of my friend and had no awareness of the hospital treatment or specific care for his injuries.
We expect that all patients' statuses are reviewed at shift change times so that incoming staff are aware of the current situation with each resident. Again, that doesn't seem to occur – I’ve had to tell each member of staff that I’ve come into contact with about his recent injury and what needs to be done to assist the recovery from the broken shoulder and arm. That said, there seems little compliance with those needs.
I’d expect that when a resident has a program of physiotherapy exercises to do, as my friend does to try to get his right leg working again, that he would be encouraged by carers at regular intervals in the day, every day, to do those exercises. He is quite happy to do these, but he needs someone to tell him to do them and make sure that he pushes himself. Despite those exercises being posted on the wall of his room I’ve had staff tell me they didn't know he was supposed to do them! Needless to say, no one other than family and friends have tried to get him to do them. Is this not part of what delivering ‘care’ should include?
In the current exceptional situation caused by the fall and fractures to his shoulder and arm, I’d expect that he would receive additional care and support – I’ve raised with the Home the hospital’s concern that his arm is left to hang freely while the bones knit together, not be supported by arms of chairs while sitting out of bed nor by pillows etc when in bed. Again, I told staff on our return from the hospital last Wednesday and wrote to the Home to confirm the concern. But this isn't being addressed. He’s put in chairs where there is an arm that interferes with the fall of the arm.
I’d expect that if a resident had to be taken to hospital for treatment that someone from the Home would go with them. This didn’t happen when he had his fall. Thankfully his son (18) managed to get to the hospital just in time to provide him some support and answer the doctor's questions, but to send a resident with cognitive illnesses to hospital on their own seems to me to be a dereliction of care. Is this an unreasonable expectation? I am truly shocked that a resident would be let out of a Home's care and supervision when they are not able to provide hospital staff with reliable information or responses to questions.
I’d expect that he would be given some assistance with eating presently whilst he has restricted motor abilities – he can’t use both hands at present and as a result when I saw him after he’d eaten, he’d got food down his front. He has a good appetite, so helping him to eat wouldn’t take long, just for a couple of weeks until the arm is more useable. Is this a reasonable expectation?
After returning to the hospital today to check on progress on his arm, the hospital nurses expressed surprise that his dressing had not been changed since last week’s hospital visit. Surely changing dressings is something that the resident Home nurse ought to be doing on a regular basis? Or is that a wrong expectation?
When he’s not able to be more mobile, I’d expect carers to spend more time with him to help pass the time easier. Is that reasonable? He can't operate a TV remote control, can't concentrate to read, can't tune a radio from one station to another without someone doing it, so needs a bit of stimulation in other ways.
On Sunday there was a garden party at the Home. I assumed that he would be put in a wheelchair and be taken down to enjoy the entertainment with the rest of the residents. His son went along to join in, but he was left in his room. Of most of the residents he’d have enjoyed the band most, I imagine since he's not too old, yet he was left out! Is it unreasonable to have expected him to be involved?
Lastly, today he returned from a hospital appointment at 3:30 in the afternoon and was immediately put to bed for the rest of the day. A 57 year old, who despite the EOD is still able to have a reasonable conversation about all kinds of things and doesn't need or deserve to be shoved into bed for 16-18 hours a day and who needs stimulation to his right leg to stop him losing its use permanently. Is it unreasonable to expect the staff to keep him up until at least mid-evening?
Again, apologies for the length, but these questions are what we will ask the Home's management - but before doing so we would like to calibrate whether we are being idealistic. I'm just unable to understand what 'care' actually means in a 'Care Home'. Whilst my friend may have no hope of cure or recovery, no one wants to see his physical and mental decline be accelerated by inadequate care, treatment, therapy and support. Thanks for listening!
This is a longish list of our expectations - sorry if it's a bore, but if you have the time to review and pass comment it would be appreciated. If our expectations are too much, then we'll modify the way we are tempted to address the issue with the Home's Manager; however if we are right to expect such standards, then we'd like to know that it is failings on the part of the Home whether they are common or unfortunate. So other people's opinions would be helpful. Thank you in anticipation!
So - I would expect my friend to have a care programme which would be regularly reviewed depending upon his evolving condition. This programme would take into account his cognitive stimulation, his physical condition which, due to the MS, can vary from time to time and his general mental and physical well-being being monitored and recorded, with appropriate action taken to deal with any deficiency - not just leave it to persist. However there is no evidence of this – questions asked of the staff are answered vaguely without any real indication that they even think about what his needs might be other than the rudimentary needs of washing, dressing and feeding. The manager seems to have very little awareness of any specifics of my friend and had no awareness of the hospital treatment or specific care for his injuries.
We expect that all patients' statuses are reviewed at shift change times so that incoming staff are aware of the current situation with each resident. Again, that doesn't seem to occur – I’ve had to tell each member of staff that I’ve come into contact with about his recent injury and what needs to be done to assist the recovery from the broken shoulder and arm. That said, there seems little compliance with those needs.
I’d expect that when a resident has a program of physiotherapy exercises to do, as my friend does to try to get his right leg working again, that he would be encouraged by carers at regular intervals in the day, every day, to do those exercises. He is quite happy to do these, but he needs someone to tell him to do them and make sure that he pushes himself. Despite those exercises being posted on the wall of his room I’ve had staff tell me they didn't know he was supposed to do them! Needless to say, no one other than family and friends have tried to get him to do them. Is this not part of what delivering ‘care’ should include?
In the current exceptional situation caused by the fall and fractures to his shoulder and arm, I’d expect that he would receive additional care and support – I’ve raised with the Home the hospital’s concern that his arm is left to hang freely while the bones knit together, not be supported by arms of chairs while sitting out of bed nor by pillows etc when in bed. Again, I told staff on our return from the hospital last Wednesday and wrote to the Home to confirm the concern. But this isn't being addressed. He’s put in chairs where there is an arm that interferes with the fall of the arm.
I’d expect that if a resident had to be taken to hospital for treatment that someone from the Home would go with them. This didn’t happen when he had his fall. Thankfully his son (18) managed to get to the hospital just in time to provide him some support and answer the doctor's questions, but to send a resident with cognitive illnesses to hospital on their own seems to me to be a dereliction of care. Is this an unreasonable expectation? I am truly shocked that a resident would be let out of a Home's care and supervision when they are not able to provide hospital staff with reliable information or responses to questions.
I’d expect that he would be given some assistance with eating presently whilst he has restricted motor abilities – he can’t use both hands at present and as a result when I saw him after he’d eaten, he’d got food down his front. He has a good appetite, so helping him to eat wouldn’t take long, just for a couple of weeks until the arm is more useable. Is this a reasonable expectation?
After returning to the hospital today to check on progress on his arm, the hospital nurses expressed surprise that his dressing had not been changed since last week’s hospital visit. Surely changing dressings is something that the resident Home nurse ought to be doing on a regular basis? Or is that a wrong expectation?
When he’s not able to be more mobile, I’d expect carers to spend more time with him to help pass the time easier. Is that reasonable? He can't operate a TV remote control, can't concentrate to read, can't tune a radio from one station to another without someone doing it, so needs a bit of stimulation in other ways.
On Sunday there was a garden party at the Home. I assumed that he would be put in a wheelchair and be taken down to enjoy the entertainment with the rest of the residents. His son went along to join in, but he was left in his room. Of most of the residents he’d have enjoyed the band most, I imagine since he's not too old, yet he was left out! Is it unreasonable to have expected him to be involved?
Lastly, today he returned from a hospital appointment at 3:30 in the afternoon and was immediately put to bed for the rest of the day. A 57 year old, who despite the EOD is still able to have a reasonable conversation about all kinds of things and doesn't need or deserve to be shoved into bed for 16-18 hours a day and who needs stimulation to his right leg to stop him losing its use permanently. Is it unreasonable to expect the staff to keep him up until at least mid-evening?
Again, apologies for the length, but these questions are what we will ask the Home's management - but before doing so we would like to calibrate whether we are being idealistic. I'm just unable to understand what 'care' actually means in a 'Care Home'. Whilst my friend may have no hope of cure or recovery, no one wants to see his physical and mental decline be accelerated by inadequate care, treatment, therapy and support. Thanks for listening!
