A history if I may, my mother is 86 and was diagnosed with vascular dementia 4 years ago after a stroke. She lives with my younger sister Amanda, and they have been plodding along ever since. There was a noticeable decline in mum after the death of my brother to covid in January 2021, but she was still able to get to the bathroom with the aid of a frame although she did rely on Amanda for showering, dressing, and food. The family was able to keep in touch with mum via video link, but it was becoming more and more obvious that she was struggling with both her hearing and understanding.
In May of this year, Amanda took mum out to the local supermarket for the first time in 2 years, and unfortunately, they both caught covid. Neither had any devastating symptoms (they have had all jabs and boosters) but mum did develop a cough and went completely off her food. A week later Amanda was met with a completely incoherent mum, who couldn’t move, and fearing another stroke, Amanda called an ambulance. It was quickly determined that mum’s sugar levels had dropped dangerously low and after the administration of glucose, she picked up straight away. She was taken to the hospital for a check-over but was sent home 6 hours later. It was found out while at hospital that the diabetes tablets that she had been taking for the past 20 years were no longer required because her markers showed that she hadn’t in fact been suffering from diabetes for the past 3 years!!
All seemed ok, until a week later. Mother out of the blue has a toilet accident and was devastated, on the way back from the bathroom to her bedroom she stumbled and falls, being unable to get herself up and Amanda (suffering from COPD) was unable to help, so decided to call an ambulance again. This time it was found that her blood pressure was low and dropped lower when the ambulance service tried to make her stand, so back up to the hospital she goes. This time it was decided to keep her in and keep an eye on her.
Mum has always been a very proud woman, but in hospital and because she could not stand, she was told to toilet on a pad in the bed, which she point blank refused to do. After 6 hours of her crying and begging to be allowed to go to the toilet we asked if she could have a catheter inserted and was told that the hospital did not give catheters out on patient request. After 2 days of mum refusing to pee and becoming more and more distressed, a bladder scan showed bladder retention and a catheter was inserted, but by now mother is very confused and believed she had been violated. Her mental state declined at an alarming rate, with her becoming more and more distressed as the hours went on, for the first time since starting this dementia journey she became abusive, racist, and violent. Still complaining that she wanted the police because she had been violated and crying uncontrollably.
On day 4 of her stay at the hospital, she pulled her catheter out, and on this day the hospital decided that mum needed an enema. The results were devastating to her mental health, she now believed she had been raped and that we, her family, were doing nothing to help her, she became non-responsive and just cried uncontrollably. At this point, she has not eaten for days and has only drunk sips of water when pressured. The hospital performed various tests, including taking blood, and a CT scan, which all appear normal, but my sister is informed that the hospital is putting a DNR in place, Amanda protests and says she needs to discuss this with her family and is told it was not her decision to make, it was a medical decision and in the best interest of mum. Obviously, we are shocked and upset. On day 5 of mum’s hospital stay (26th May), Amanda demands to take mum home, who is now declared physically fit, as she is almost catatonic but screaming any time medical personnel came near her. An ambulance is arranged, Amanda is giving an envelope for the ambulance staff that says CPR DNA and within an hour mum is home, bed-bound with no care plan in place, no toileting help, and still not eating or drinking. It was obvious that the situation was declining at a rapid pace, so I contacted our local community nursing hub to ask for help. Within an hour both a nurse and OT turned up at home, not quite believing that we had been left in this manner.
The nurse checked mum’s observations and declared them all fine, which is great. OT arranged a bed to be delivered that day, which it did, and a social worker called to say after assessment a care plan was being put in place for 2 x carers 4 times a day starting Friday 3rd June. In the meantime, it was down to Amanda and me to care for mum.
Mum is still refusing to toilet on a pad (dog pad as nothing was provided and we are still awaiting the incontinence team to come out and assess mum) and is becoming more and more aggressive to us both because we can not lift her out of bed to use the toilet. We are told that although someone will come in to assemble the bed it is down to us to get mum from her bed to the hospital bed which is assembled in the living room.
A desperate call to our GP on Monday (by now Amanda has had 9 hours of sleep in 4 days and I (arriving on Saturday) have had 4 hours) yields a sedative and the promise that a community matron will call in to see where we are at. Mother now is only napping, has not eaten for 12 days, and only takes approx. 300ml per day of fluid after much pressuring.
No matron turns up, we have been sleep-deprived for days and I must go home on Tuesday. After a further 2 nights of no sleep for Amanda, I go back up and complete a night shift, which entails mother crying, wishing to die, begging to be let up, and becoming abusive if you try to check her for wetness. Despite upping the sedative (doctor’s advice after another desperate call about no sleep) from one tablet to two she is still not settling let alone sleeping. So here we are at 3.30 am 4th June and a desperate text from Amanda that mum is still not sleeping and nor is Amanda. Amanda is at the end of her tether; she cannot cope, and I do not know what to do. I’m going up again on Sunday to do another night shift, but I need help. Where do I turn, and who is best to give advice? How can I get this stubborn, proud bed bedbound mother to sleep? How long can mum survive with absolutely no food and only 300ml of fluid? I just don’t know where to turn.
In May of this year, Amanda took mum out to the local supermarket for the first time in 2 years, and unfortunately, they both caught covid. Neither had any devastating symptoms (they have had all jabs and boosters) but mum did develop a cough and went completely off her food. A week later Amanda was met with a completely incoherent mum, who couldn’t move, and fearing another stroke, Amanda called an ambulance. It was quickly determined that mum’s sugar levels had dropped dangerously low and after the administration of glucose, she picked up straight away. She was taken to the hospital for a check-over but was sent home 6 hours later. It was found out while at hospital that the diabetes tablets that she had been taking for the past 20 years were no longer required because her markers showed that she hadn’t in fact been suffering from diabetes for the past 3 years!!
All seemed ok, until a week later. Mother out of the blue has a toilet accident and was devastated, on the way back from the bathroom to her bedroom she stumbled and falls, being unable to get herself up and Amanda (suffering from COPD) was unable to help, so decided to call an ambulance again. This time it was found that her blood pressure was low and dropped lower when the ambulance service tried to make her stand, so back up to the hospital she goes. This time it was decided to keep her in and keep an eye on her.
Mum has always been a very proud woman, but in hospital and because she could not stand, she was told to toilet on a pad in the bed, which she point blank refused to do. After 6 hours of her crying and begging to be allowed to go to the toilet we asked if she could have a catheter inserted and was told that the hospital did not give catheters out on patient request. After 2 days of mum refusing to pee and becoming more and more distressed, a bladder scan showed bladder retention and a catheter was inserted, but by now mother is very confused and believed she had been violated. Her mental state declined at an alarming rate, with her becoming more and more distressed as the hours went on, for the first time since starting this dementia journey she became abusive, racist, and violent. Still complaining that she wanted the police because she had been violated and crying uncontrollably.
On day 4 of her stay at the hospital, she pulled her catheter out, and on this day the hospital decided that mum needed an enema. The results were devastating to her mental health, she now believed she had been raped and that we, her family, were doing nothing to help her, she became non-responsive and just cried uncontrollably. At this point, she has not eaten for days and has only drunk sips of water when pressured. The hospital performed various tests, including taking blood, and a CT scan, which all appear normal, but my sister is informed that the hospital is putting a DNR in place, Amanda protests and says she needs to discuss this with her family and is told it was not her decision to make, it was a medical decision and in the best interest of mum. Obviously, we are shocked and upset. On day 5 of mum’s hospital stay (26th May), Amanda demands to take mum home, who is now declared physically fit, as she is almost catatonic but screaming any time medical personnel came near her. An ambulance is arranged, Amanda is giving an envelope for the ambulance staff that says CPR DNA and within an hour mum is home, bed-bound with no care plan in place, no toileting help, and still not eating or drinking. It was obvious that the situation was declining at a rapid pace, so I contacted our local community nursing hub to ask for help. Within an hour both a nurse and OT turned up at home, not quite believing that we had been left in this manner.
The nurse checked mum’s observations and declared them all fine, which is great. OT arranged a bed to be delivered that day, which it did, and a social worker called to say after assessment a care plan was being put in place for 2 x carers 4 times a day starting Friday 3rd June. In the meantime, it was down to Amanda and me to care for mum.
Mum is still refusing to toilet on a pad (dog pad as nothing was provided and we are still awaiting the incontinence team to come out and assess mum) and is becoming more and more aggressive to us both because we can not lift her out of bed to use the toilet. We are told that although someone will come in to assemble the bed it is down to us to get mum from her bed to the hospital bed which is assembled in the living room.
A desperate call to our GP on Monday (by now Amanda has had 9 hours of sleep in 4 days and I (arriving on Saturday) have had 4 hours) yields a sedative and the promise that a community matron will call in to see where we are at. Mother now is only napping, has not eaten for 12 days, and only takes approx. 300ml per day of fluid after much pressuring.
No matron turns up, we have been sleep-deprived for days and I must go home on Tuesday. After a further 2 nights of no sleep for Amanda, I go back up and complete a night shift, which entails mother crying, wishing to die, begging to be let up, and becoming abusive if you try to check her for wetness. Despite upping the sedative (doctor’s advice after another desperate call about no sleep) from one tablet to two she is still not settling let alone sleeping. So here we are at 3.30 am 4th June and a desperate text from Amanda that mum is still not sleeping and nor is Amanda. Amanda is at the end of her tether; she cannot cope, and I do not know what to do. I’m going up again on Sunday to do another night shift, but I need help. Where do I turn, and who is best to give advice? How can I get this stubborn, proud bed bedbound mother to sleep? How long can mum survive with absolutely no food and only 300ml of fluid? I just don’t know where to turn.
