ALISONGS' DIARY
- Thread starter Alisongs
- Start date
OH doesn't. Either he doesn't understand or he's hiding it to protect me
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If you download the NHS app you can email the surgery directly. I use it regularly as I can never get through on the phone/ cant hear them anyway
I'm afraid that one of the difficult things about dementia is the uncertainty: around symptoms, speed of progression and life expectancy. Many doctors don't even inform the patient that dementia is a terminal illness and I think that many patients and their carers don't want to ask about life expectancy. On the main site there are some general guidelines about life expectancy but that's all they are: general. How long someone lives with dementia varies enormously but the type of dementia, the age at diagnosis, the stage at which the person was diagnosed and other health conditions, if any, all have a bearing. Some people live with dementia for well over a decade but most people seem to live for less time than that. For example, my mother was diagnosed with Alzheimer's Disease at 80 after showing symptoms for three or four years. She had no other health conditions and lived until she was 87 after a slow but steady decline until she was a shell of her former self. The elderly friend whom I supported was diagnosed at 90 and died quite suddenly at 93 after a short stay in hospital for an infection. She had Heart Failure. Her dementia was still at quite an early stage when she died.
The memory clinics diagnose and often their role ends after diagnosis. I suspect that the doctors in the memory clinic don't have much of an idea about dementia in the later stages and, in particular, the challenging behaviours that can arise. It's the GP and the community mental health team who deal with this.
The memory clinics diagnose and often their role ends after diagnosis. I suspect that the doctors in the memory clinic don't have much of an idea about dementia in the later stages and, in particular, the challenging behaviours that can arise. It's the GP and the community mental health team who deal with this.
I don't get that option on my NHS account.
Instead I use the email address on the surgery website.
Regarding your wanting the medical profession to sit down and explain what is going to happen in the future/how long/effect on your OH and so on. They don't know - period. That is the problem. We all want answers but we cannot get or be given them They are not being obstructive , obtuse or passing the buck. Each and every one of us with dementia is different, and the medics are not doing harm by not explaining. They would be doing harm if they gave false hope or information to a situation they have absolutely no control or insight to. Neither are they deliberately cruel or cowardly.
As for denial, it is a well documented part of the dreaded disease. Friends and relatives do not know how to cope with it either, and become scarce pretty quickly.
I am attending an NHS commissioning group at the end of the month and am hoping to be able to put my side of the story as both a person with alzheimers and someone with nearly 40 years as a frontline health professional in both acute and community settings. Should be interesting.
At the end of the day, we are both dealing with non quantifiable factors, with no treatment or hope of cure in our lifetimes.
Anger (towards dementia) is a normal part of the human grieving process as you see your husband changing from the man you first knew.
As for denial, it is a well documented part of the dreaded disease. Friends and relatives do not know how to cope with it either, and become scarce pretty quickly.
I am attending an NHS commissioning group at the end of the month and am hoping to be able to put my side of the story as both a person with alzheimers and someone with nearly 40 years as a frontline health professional in both acute and community settings. Should be interesting.
At the end of the day, we are both dealing with non quantifiable factors, with no treatment or hope of cure in our lifetimes.
Anger (towards dementia) is a normal part of the human grieving process as you see your husband changing from the man you first knew.
Lorazepam was prescribed in the hospital (not the surgery) last time. I have been told OH is not getting it this time round. It's a double concern, because it makes you sleep. If OH sleeps through a very high or ver low blood sugar episode, he could die. If I have misunderstood the point you are making, I'm sorry
I access my NHS account via a browser not the app.
Happy enough using email.
Everything gets recorded in relevant section of Health Records
This is great @Dunroamin - I hope you are able to bring both your own story and your own clinical settings to the table in a professional manner to contribute to the discussions. You will have much to add. Do update us if appropriate.
Tuesday 9 July 2024 5.30am
What do I wish for?
That OH loses his mind quickly?
That he dies quickly of a hperglycaemic or hypoglycaemic episode?
That he comes home while he still has memories and financial and legal competence and a desire and ability to live as full a life as possible?
That he gets frustrated at every turn by third parties who don't care for him holistically?
I want him back in his mum's arms if he can no longer be what he wants to be.
Safe, loved, free, his best self, with his loved ones, his favourite time of year forever.
But I have to advocate for the here and now. Crying all the time because third parties frustrate what he can still be.
Ten months from diagnosis to denial of freedom. Any commentators should bear that in mind..... What if this were you and your loved ones?
What do I wish for?
That OH loses his mind quickly?
That he dies quickly of a hperglycaemic or hypoglycaemic episode?
That he comes home while he still has memories and financial and legal competence and a desire and ability to live as full a life as possible?
That he gets frustrated at every turn by third parties who don't care for him holistically?
I want him back in his mum's arms if he can no longer be what he wants to be.
Safe, loved, free, his best self, with his loved ones, his favourite time of year forever.
Ten months from diagnosis to denial of freedom. Any commentators should bear that in mind..... What if this were you and your loved ones?
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My husband has late stage Parkinsons and has had dementia for 5-6 years. He did not have a gradual decline but woke up in the middle of one night and neither knew me, himself or his home. It is brutally hard there are many worse stories than mine on here.
I have done a best interests meeting and I guess failed it. My husband wanted to come home but they absolutely focus on the safety of the person.
You have to show how you would manage all aspects of their care including how you would mange if carers fail to arrive on a weekend etc.
Your husband's diabetes sounds very brittle, has anyone ever suggested an insulin pump or is that not suitable for him.
Does your husband hallucinate? Parkinsons drugs especially Dopamine agonists tend to cause hallucinations. They make it more difficult for the dementia drugs to work. It can take a long time to get the balance quite right. In early to moderate dementia PWD rarely think there is anything wrong with them that increases the risk they pose to themselves so safety in the house becomes an issue.
Good luck with your meeting, I suggest you make notes on how you can manage things and what emergency plans you can have in place.
I have done a best interests meeting and I guess failed it. My husband wanted to come home but they absolutely focus on the safety of the person.
You have to show how you would manage all aspects of their care including how you would mange if carers fail to arrive on a weekend etc.
Your husband's diabetes sounds very brittle, has anyone ever suggested an insulin pump or is that not suitable for him.
Does your husband hallucinate? Parkinsons drugs especially Dopamine agonists tend to cause hallucinations. They make it more difficult for the dementia drugs to work. It can take a long time to get the balance quite right. In early to moderate dementia PWD rarely think there is anything wrong with them that increases the risk they pose to themselves so safety in the house becomes an issue.
Good luck with your meeting, I suggest you make notes on how you can manage things and what emergency plans you can have in place.
Hospital only considers diabetes. Insulin usually given twice daily by community nurses giving a set dose at random times am and pm. They do no other management. That would happen in a nursing home as well. My husband will be better off with his Mum
I thought that nursing homes - as opposed to residential homes - have onsite nurses, in which case surely they could administer the insulin.
You seem very knowledgeable about your husband's Diabetes. What is the reason for you not managing it yourself? I don't think that relying on two visits a day from district nurses is going to work for someone like your husband whose blood sugars are very unstable.
You are firmly opposed to a care home but are clearly struggling to cope with looking after your husband at home (not a criticism). What do you want to happen? Be careful that you are not looking for solutions that don't exist. Would district nurses come four times a day? I don't know but you could ask. Dementia is almost uniquely difficult as there is no cure and little effective treatment and the person with dementia is, beyond the early stages, unable to manage his/her own health conditions.
I do think that you should be considering Continuing Health Care because of your husband's complex health conditions.
You seem very knowledgeable about your husband's Diabetes. What is the reason for you not managing it yourself? I don't think that relying on two visits a day from district nurses is going to work for someone like your husband whose blood sugars are very unstable.
You are firmly opposed to a care home but are clearly struggling to cope with looking after your husband at home (not a criticism). What do you want to happen? Be careful that you are not looking for solutions that don't exist. Would district nurses come four times a day? I don't know but you could ask. Dementia is almost uniquely difficult as there is no cure and little effective treatment and the person with dementia is, beyond the early stages, unable to manage his/her own health conditions.
I do think that you should be considering Continuing Health Care because of your husband's complex health conditions.
@Alisongs I've followed all your posts and understand your frustrations. The medical profession doesn't treat holistically. Each symptom is dealt with separately. My oh has borderline heart failure ,early bowel changes that are probably cancer and dementia. We have gone from pillar to post with consultant and dismissed. His stomach is swollen 3 waist sizes of trousers and feet also that shoes are hard to find. But it's not caused by the three so now nothing! Still got the problem
I know your husbands situation is far more life threatening. But .. you are fighting people trying to help. Maybe it's the system that needs changing. The BMA ,the health minister and those who make medical policy ,in my opinion, need to be your target. They are the people who can affect change.
I hope your meeting goes as well as it can .stay calm and and have notes. And as @Violet Jane said. think carefully about what you really want and can realistically handle. X
I know your husbands situation is far more life threatening. But .. you are fighting people trying to help. Maybe it's the system that needs changing. The BMA ,the health minister and those who make medical policy ,in my opinion, need to be your target. They are the people who can affect change.
I hope your meeting goes as well as it can .stay calm and and have notes. And as @Violet Jane said. think carefully about what you really want and can realistically handle. X
I’ve also resonated with the frustrations with physical health. Mum too having rare conditions. I have felt traumatised by the way I was dismissed throughout our journey…..when on each occasion the evidence showed I was right…..but of course no one cares or looks back to learn apart from the family.
There is an attitude I think that when you have dementia and old age ( which Bill doesnr have yet!) good medical care ( certainly in the way of prevention rather than reaction) is not important….But as we know dementia can last a long time and prevention of medical complexities both saves money and stress on services And preserves quality of life which for me was of the upmost importance.
you almost need a specialist in each GP surgery whose GP it is to oversee these complex patients. Who has the time to LISTEN to the families and the POWER to liaise with other medical and social care professionals As well as make appropriate prescribing decisions. But that would require a massive CHANGE of MINDSET and would COST.
@Alisongs …..try to take some space (if you can ) to prepare for the meeting and plan how Bill’s best interests can be met.
There is an attitude I think that when you have dementia and old age ( which Bill doesnr have yet!) good medical care ( certainly in the way of prevention rather than reaction) is not important….But as we know dementia can last a long time and prevention of medical complexities both saves money and stress on services And preserves quality of life which for me was of the upmost importance.
you almost need a specialist in each GP surgery whose GP it is to oversee these complex patients. Who has the time to LISTEN to the families and the POWER to liaise with other medical and social care professionals As well as make appropriate prescribing decisions. But that would require a massive CHANGE of MINDSET and would COST.
@Alisongs …..try to take some space (if you can ) to prepare for the meeting and plan how Bill’s best interests can be met.
Thank you ALL for your thoughts. Any plans we would make are frustrated by the hospital DOLS and social worker assessment. All support and information was frozen on readmittance. Because OH was only on week 4 of post hospital care plan and that has been frozen, the situation is: No contact from community nurses re injections and diabetic management, although I contacted them when OH was readmitted. No contact from support workers Hub, who were coming in 5 x day, although I contacted them when O H was readmitted. No contact at all from their boss, the area coordinator, since the start. Supposed to contact me week 2 to sort out the types of support available and suitable, going forward. Apparently had Covid, did not respond to support workers either, apparently another coordinator allocated. Heard nothing. Social worker supposed to be allocated week 4, to help with plans going forward. No contact, nothing, although Admiral Nurse was given a name. Adaptive Technology provision on hold awaiting Best Interests Meeting outcome. NHCC assessment no information, no reply frm Community Matron, probably frozen pending Best Interests Meeting outcome. Attendance Allowance forms cannot be completed, pending Best Interests Meeting outcome. No contact from Social Services at all about anything. Doctor failed callback appointment last Thursday. I have reenquired, no information yet. A mental health nurse rang last week to make appointment to see me Friday, if they came. I never saw them, and no way to contact.
Purely by chance, I met someone able to make a Palliative care referral and pass it to the inpatient team. No news yet. Everybody's numbers come up as Unknown if they call, and I am rarely given callback numbers.
Specialist solicitor has been instructed
Up the frozen Orinoco without a canoe does not begin to describe it.
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