I have joined this forum through sheer frustration at the lack of help and support my husband his family are receiving. His mother had a major heart attack in December 2011 and after undergoing several medical tests, they were told she had congestive heart failure. I could furnish you with a multitude of anecdotes about the care she received(or lack of it) both in hospital and when she returned home. After collating all the medical evidence, the family were told she had, at best, three months to live - they could not operate due to the advanced stage of heart failure. Amazingly, she is still with us but after becoming increasingly withdrawn and depressed over the last six months she has now been diagnosed with vascular dementia. She lives with her eldest daughter, just the two of them. The GP has started the process of her attending a memory clinic, waiting time four to six weeks! He offered no support or advice. He is a new GP just taken over the practice and knows nothing about the family. My question is this: how does an 85 year old woman who is, in effect, dying simply get sent home from the GP's surgery with nothing more than a referral in four to six weeks? She is now constantly distressed, paranoid and hallucinating. Her breathing has become more laboured. I had to go this morning whilst her daughter went to work. Her eldest son called and rang the GP who sent a locum out. He prescribed Amoxycillin and seemed surprised that they were not given an information pack or any form of advice at her GP appointment. The family are afraid to phone an ambulance for fear of her lying on a hospital trolley in A and E, confusing and distressing her even more. They are simply lost and do not know what to do. In my opinion, a woman who was given three months to live almost three years ago and who is now a tormented shell of her former self deserves palliative care. Not antibiotics or medication that is meant to cure a condition. The GP told her eldest daughter he can't give her sedation. Why? She is constantly up and down the stairs, crying and hardly sleeping. This woman needs palliative care and the dignity to die in peace.
Palliative care
- Thread starter jen19
- Start date
I'm not sure, that's the point. She is in a great, great deal of distress. Not sleeping and aimlessly wandering up and down the stairs (which, given her heart condition, is not doing her any good). The GP said she cannot have sedatives to calm her or help her sleep. Would that be the case if her treatment or condition was addressed as palliative? At this point I just see a very, very frightened old lady who is in constant mental torment and if it was physical pain I am sure things would be different.
Hi, Jen19
This sounds like a complicated case, because there are two issues here - the dementia and the underlying heart failure. I'm only giving a layman's view from personal experience, if it's any help.
My mum also has both these conditions, and contrary to the name "failure", congestive heart failure can be a process of slow decline over a long time, usually involving fluid gathering in the lungs - which is probably causing the breathing difficulty - and elsewhere in the body, e.g. commonly pooling in the legs. Diuretics are the common treatment for this, but I'd guess your MIL is probably on these already, if she was diagnosed with that 3 years ago?
With regard to the dementia, I'm afraid 4-6 weeks is par for the course for a memory clinic referral; indeed some people sadly wait longer. The distress, agitation, paranoia and hallucinations sound like mid-stage to me; she's probably not "end stage" as far as the dementia is concerned. And upsetting and exhausting though this behaviour is for both the person with dementia and the carer, the doctor is probably right to say that he can't give her sedation for this. Sedatives and opiate-based painkillers can sometimes make paranoid symptoms worse.
If she is aggressive, you might discuss prescription of anti-psychotics, but these can also have side effects and are not recommended for people with hypertension or some heart conditions, as they can cause stroke. Catch 22, I know.
If you haven't already, take a look a this fact sheet on Unusual Behaviours:
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=159
And this one on hallucinations and paranoia:
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1408
In the morning, you can call Admiral Nursing Direct for phone advice from a specialist dementia nurse:
http://www.dementiauk.org/information-support/admiral-nursing-direct/
All this, however, is just about understanding and managing your MIL's condition.
If, by "palliative care" you mean a hospice, that would depend on the clinical state of her congestive heart failure. Otherwise, it may be a case of investigating residential dementia care, but your husband and his sister would have to be in agreement about this, and if your MIL is only recently diagnosed with dementia, it may be too soon to face.
I'm afraid there is no magic wand of support from the GP, as they are not generally equipped for it, and it is indeed best to avoid landing in A&E, unless it really is an emergency acute situation, as the hospital environment can also be very stressful and confusing for a person with dementia. (Also this is the worst time of year to be admitted, as the newly qualified junior doctors take up their posts in August and this is a period of induction for them - i.e. you will get very inexperienced staff, who often don't know their colleagues or that particular hospital's systems.)
If your MIL does have to go into hospital at any time, ask if they operate the Butterfly Scheme, which promotes awareness of dementia needs in acute settings and can discreetly alert staff to the patient's cognitive condition:
http://butterflyscheme.org.uk
The Admiral Nurses may be able to advise you about other services in your area. All the best.
This sounds like a complicated case, because there are two issues here - the dementia and the underlying heart failure. I'm only giving a layman's view from personal experience, if it's any help.
My mum also has both these conditions, and contrary to the name "failure", congestive heart failure can be a process of slow decline over a long time, usually involving fluid gathering in the lungs - which is probably causing the breathing difficulty - and elsewhere in the body, e.g. commonly pooling in the legs. Diuretics are the common treatment for this, but I'd guess your MIL is probably on these already, if she was diagnosed with that 3 years ago?
With regard to the dementia, I'm afraid 4-6 weeks is par for the course for a memory clinic referral; indeed some people sadly wait longer. The distress, agitation, paranoia and hallucinations sound like mid-stage to me; she's probably not "end stage" as far as the dementia is concerned. And upsetting and exhausting though this behaviour is for both the person with dementia and the carer, the doctor is probably right to say that he can't give her sedation for this. Sedatives and opiate-based painkillers can sometimes make paranoid symptoms worse.
If she is aggressive, you might discuss prescription of anti-psychotics, but these can also have side effects and are not recommended for people with hypertension or some heart conditions, as they can cause stroke. Catch 22, I know.
If you haven't already, take a look a this fact sheet on Unusual Behaviours:
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=159
And this one on hallucinations and paranoia:
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1408
In the morning, you can call Admiral Nursing Direct for phone advice from a specialist dementia nurse:
http://www.dementiauk.org/information-support/admiral-nursing-direct/
All this, however, is just about understanding and managing your MIL's condition.
If, by "palliative care" you mean a hospice, that would depend on the clinical state of her congestive heart failure. Otherwise, it may be a case of investigating residential dementia care, but your husband and his sister would have to be in agreement about this, and if your MIL is only recently diagnosed with dementia, it may be too soon to face.
I'm afraid there is no magic wand of support from the GP, as they are not generally equipped for it, and it is indeed best to avoid landing in A&E, unless it really is an emergency acute situation, as the hospital environment can also be very stressful and confusing for a person with dementia. (Also this is the worst time of year to be admitted, as the newly qualified junior doctors take up their posts in August and this is a period of induction for them - i.e. you will get very inexperienced staff, who often don't know their colleagues or that particular hospital's systems.)
If your MIL does have to go into hospital at any time, ask if they operate the Butterfly Scheme, which promotes awareness of dementia needs in acute settings and can discreetly alert staff to the patient's cognitive condition:
http://butterflyscheme.org.uk
The Admiral Nurses may be able to advise you about other services in your area. All the best.
Her heart condition IS being treated as 'palliative' though, isn't it? Keeping her heart as well as it can be without major intervention?
The distress/wandering is possibly/probably down to the dementia, which in its self isn't life limiting per say.
Things would no doubt be different if it was physical pain- but it isn't.
Its horrible horrible horrible, but the combination of the two problems don't have an easy answer
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You may find these sites helpful for info too:
http://www.dementiachallengers.com
http://www.scie.org.uk/findmegoodcare/
http://www.dementiachallengers.com
http://www.scie.org.uk/findmegoodcare/
My mother had heart failure and COPD for a number of years.
After an episode of extreme confusion Mam was taken to A&E and was found to have pneumonia, she was taken care of at home with support from district nurses and my sister and I staying with her 24 hours on a rota system.
She stopped eating.
She was increasingly confused and began to hallucinate occasionally (the first time it had ever happened to her) She was prescribed Lorazepam to be given as required.
There is a danger of falls when taking any of these sort of drugs so she had to be closely supervised and assisted at every movement.
I'm not sure that they had any effect on her bouts of distress.
The pneumonia didn't respond to AB's and Mam was admitted into the Cardiac Care unit with 'heart block' that would have required a pacemaker and Mam was too unwell to undergo surgery.
She stopped drinking.
She was fast tracked onto CHC and discharged back to her little house with support from the District Nurses, who were the palliative care team and a 'yellow envelope' to ensure all health care workers understood she was on end of life care.
Her medication was no longer given.
My sister, brother and I worked the 24 hour care between us and Mam died in her little cottage one week after discharge from hospital.
She had lived with heart failure and COPD for 10+ years, not breathless and unwell, just taking medication; digoxin, furosemide, using inhalers.
She showed signs and was diagnosed with AD and Vas.Dem when she was 80 and died peacefully when she was 86 and a half, eight weeks after the pneumonia began.
After an episode of extreme confusion Mam was taken to A&E and was found to have pneumonia, she was taken care of at home with support from district nurses and my sister and I staying with her 24 hours on a rota system.
She stopped eating.
She was increasingly confused and began to hallucinate occasionally (the first time it had ever happened to her) She was prescribed Lorazepam to be given as required.
There is a danger of falls when taking any of these sort of drugs so she had to be closely supervised and assisted at every movement.
I'm not sure that they had any effect on her bouts of distress.
The pneumonia didn't respond to AB's and Mam was admitted into the Cardiac Care unit with 'heart block' that would have required a pacemaker and Mam was too unwell to undergo surgery.
She stopped drinking.
She was fast tracked onto CHC and discharged back to her little house with support from the District Nurses, who were the palliative care team and a 'yellow envelope' to ensure all health care workers understood she was on end of life care.
Her medication was no longer given.
My sister, brother and I worked the 24 hour care between us and Mam died in her little cottage one week after discharge from hospital.
She had lived with heart failure and COPD for 10+ years, not breathless and unwell, just taking medication; digoxin, furosemide, using inhalers.
She showed signs and was diagnosed with AD and Vas.Dem when she was 80 and died peacefully when she was 86 and a half, eight weeks after the pneumonia began.
Thankyou all so much. It has clarified a lot and addressed the issues I was concerned about. Although nothing much can be resolved, there is definitely advice and help out there if you seek it I guess. It is all very sad and this terrible disease is awful to witness.
