n Dementia patients and carers lower than the bottom of the heap for care?

[Rufus£]

This is my first post and would like to express my anger at the indifference most carers and dementia patients are being treated or more to the point not treated by the NHS.
I am currently caring for my wife who is entering the later stages of Alzneimers. This is the third Alzheimers sufferer I have cared for end on end since 2007. First it was my mum who came and lived with us, then my sister-in-law who was Down's and before her death I could see things changing in Margaret's, my wife's behaviour which terrified me.
sadly my suspicions became a reality 6 years ago when she was diagnosed as having Alzhiemers and it has progressed as expected.
My reason for making this post is to say that over this period the amount of constructive care or help I have received is pitiful and I assume that this must be the same for other patients and carers.

The impression I get from the GP surgery is that as they cannot really treat dementia patients why bother to put them any where on the list for medical care. When my wife was discharged by the GP Dementia Consultant from his care we were not seen by him but by his clinical pharmacist who was more intent on telling me about the medication Margaret was going on and that after she had shown no adverse reaction to the medication she would be discharged to "care" of our GP practice.
The performance of my GP practice can only be described as pitiful and it is a battle to speak to anyone who I believe cares, I have not spoke to our GP about Margert's condition for4 years and this is not due to a lack of me trying and often information passed to the reception team is triaged out and I get no response at all.
I had hoped that since my first encounter when we cared for my mum interest of local medical services dementia sufferers and carers would have improved but sadly they are only a little better.

Sorry to anyone who reads this rant, but if you are a carer there is nothing worse than watching a loved one leave the stage as unknown to you I feel that you are slowly leaving it as well but don't realize this.

Love to all dementia patients and carers
Rufus£

 

[Jessbow]

When someone isdiagnosed with say cancer, there is usually plan made- the way forward and what possible treatments there maybe. Cancer isnt always terminal.

Sadly the opposite is true for dementia- there is very little that can actually change the course of the disease, other than perhaps medication to slow the process.

What i do think is desperately neede is help - both physical and emotional suport for those, supporting and particually living with ,like you say , those we love leaving the stage

 

[Izzy]

I’m sorry you have had a such a bad experience over the years @Rufus£. I can understand your anger.

I hope that you find this forum helpful. Members are always willing to share their experiences and provide support.

 

[DawnR]

Hello @Rufus£ sadly mine, and most if not all of the people here have had the same experience as you.
My husband was diagnosed with alcohol related dementia in 2018 and changed in February this year to Alzheimer’s.
The help I have received is pitiful, I wish I had discovered this forum earlier. The professionals I have met have no idea.
I am now experiencing incontinence issues and night time aggression while trying to work full time so I have had to make the heartbreaking decision to let my husband go into full time residential care.
I feel with more support I could have kept him at home for longer.

 

[Rishile]

I totally understand your frustration. I looked after my husband for eight years and it was no real problem. We lived a near-normal life with the odd challenge thrown in for good measure. I asked for no help as I was managing very well. Then, within an hour, things suddenly changed.

I reached out for help only to hear numerous ringing tones and 'your call is important to us, please hold the line' and 'you are number 32 in the queue and your call will be answered in three hours 24 minutes'. If I did manage to speak to someone they would give me another six or seven phone numbers that all had the same response. When you are nearing crisis-point, this is no help at all. My GP was useless. He asked me if I thought my husband should be on anti-depressants. How would I know? He is the doctor. Beyond that though, he didn't want to know. Social Services eventually got involved and then my problems really started. I can look back now and say that what I needed, as a carer, was some practical help but I received none. They put him in a Care Home and left him there to die. Luckily, I have now got him back home following him being sectioned and well looked-after by an excellent (but rare) dementia unit who got to know him and got his meds right. He is now so much better. He is back home, I am now able to care for him following advice from this dementia unit and I have more useful support if things go wrong. I have been lucky but I went to hell and back many times over the course of nine months before I reached this stage.

I had many meetings with social workers, doctors, consultants and 'experts' who all told me I should have reached out for help earlier and I should be more prepared to reach out for help now. I told them of my experiences and the general opinion seemed to be '[shrug of shoulders] - that's what's happening in the NHS'. Again, this is no help for us carers struggling to cope.

 

[JaxG]

@Rufus£ I share your anger and frustration. When my husband was diagnosed with mixed dementia I could not possible have known how little support and care there was. 10 years ago I was diagnosed with breast cancer - how different was that experience. It is a national disgrace that both the PWD and their Carers are left to struggle, alone, help available only when you reach breaking point. Disgusting.

 

[Brickie]

This is my first post and would like to express my anger at the indifference most carers and dementia patients are being treated or more to the point not treated by the NHS.
I am currently caring for my wife who is entering the later stages of Alzneimers. This is the third Alzheimers sufferer I have cared for end on end since 2007. First it was my mum who came and lived with us, then my sister-in-law who was Down's and before her death I could see things changing in Margaret's, my wife's behaviour which terrified me.
sadly my suspicions became a reality 6 years ago when she was diagnosed as having Alzhiemers and it has progressed as expected.
My reason for making this post is to say that over this period the amount of constructive care or help I have received is pitiful and I assume that this must be the same for other patients and carers.

The impression I get from the GP surgery is that as they cannot really treat dementia patients why bother to put them any where on the list for medical care. When my wife was discharged by the GP Dementia Consultant from his care we were not seen by him but by his clinical pharmacist who was more intent on telling me about the medication Margaret was going on and that after she had shown no adverse reaction to the medication she would be discharged to "care" of our GP practice.
The performance of my GP practice can only be described as pitiful and it is a battle to speak to anyone who I believe cares, I have not spoke to our GP about Margert's condition for4 years and this is not due to a lack of me trying and often information passed to the reception team is triaged out and I get no response at all.
I had hoped that since my first encounter when we cared for my mum interest of local medical services dementia sufferers and carers would have improved but sadly they are only a little better.

Sorry to anyone who reads this rant, but if you are a carer there is nothing worse than watching a loved one leave the stage as unknown to you I feel that you are slowly leaving it as well but don't realize this.

Love to all dementia patients and carers
Rufus£

I can only agree with all you say. Once my husband was diagnosed I realised we were basically on our own. Admittedly it was during 2020 and everything seemed closed down/reduced “because of covid”. As the disease advanced at an alarming rate, he lost most mobility and became incontinent. Absolutely zero help from any NHS dept to advise on incontinence and having to trawl the internet to get pads etc through expensive trial and error. I was grappling to physically care for him alone. This resulted in my vertebrae fracturing leaving me in immense pain, but still having to soldier on (a 5 hour wait in A&E resulted in being told no x-ray needed and to take painkillers, whilst a year later a physio referred me for X-ray where the old and new fractures were revealed). Apart from my lack of physical strength to lift him, I felt my mental state was going into meltdown. Any sane person reading this is probably saying ‘why didn’t you get help? Because I didn’t have a clue who or what could help, it was all so new to me. Eventually, I had to call out an ambulance one night as my husband couldn't even stand to be helped to bed. He was admitted to hospital and ended up staying in for eight weeks. They wouldn’t send him home because of unsuitable house and my physical inadequacy. We’ve been very fortunate in now settling him into a care home which we are fortunate to have enough savings to self fund. Not initially easy for either of us, but he is very settled and I’m gradually coming to terms with not having him with me. The authorities are sticking their heads in the sand as this problem is going to explode before too long. I worry what will happen to me if I end up the same way!

 

[canary]

I am so sorry @Brickie
There is help out there, but you have to know where to look and who to ask.
I expect you tried your GP. They could have referred your husband to Social Services, the Continence clinic and to the community physio/occupational therapist. Some GPs are very good, but others know almost nothing about dementia and are as much help as an ashtray on a motorbike
(((((((((((((((((((((((((((((hugs)))))))))))))))))))

 

[Brickie]

I am so sorry @Brickie
There is help out there, but you have to know where to look and who to ask.
I expect you tried your GP. They could have referred your husband to Social Services, the Continence clinic and to the community physio/occupational therapist. Some GPs are very good, but others know almost nothing about dementia and are as much help as an ashtray on a motorbike
(((((((((((((((((((((((((((((hugs)))))))))))))))))))

Thanks, Canary. I’m now in a ‘different place‘ in that I don’t have to worry about him, but feel I’ve had no time to come to terms with my new life owing to the speed of deterioration. Although I believe he knows who/what I am to him, I sometimes wonder whether he even cares whether I visit or not. Such a lonely existence.
(thanks for opportunity to offload x)

 

[Thomasina]

Yes carers do get a raw deal. This is a lonely road. My husband was diagnosed with mixed vascular Alzheimer's 3and half years ago. Th Alzheimer's support worker has been a godsend. Most of her experience is from dealing with her family. But she knows what I am talking about. The main statement I get from social worker is everyone is different. It disappoints me that they know so little about dementia. Memory clinic seen to only deal with medication and GP general care. This forum has been a life line. In our area there is no support gtoup. It seems. Find what works for you and get on with it.