The Memory Clinic is a Joke!

[camkam]

Well, due to circumstances that have happened recently I've actually made some progress! Mum had a fall a couple of days ago and was taken to A & E for stitches and they kept her in overnight because of the bang on her head. The OT at the hospital rang me yesterday morning so say she was concerned at sending Mum home to be on her own, and she asked if I had any particular concerns so I told her everything (I bet she wished she hadn't asked!). Anyway Mum is now staying in hospital until a Reablement package is put into place for her, this will continue for six weeks following discharge from hospital and the OT is arranging for Age UK to go in and help Mum with cooking, cleaning etc. Once the six weeks is up they will then re-assess her to decide what her needs are. I'm so relieved because at least she's on the Social Services radar now, and I can't see them withdrawing help once they have put it in place because they will now see how bad she is.

I'm not really bothering about the memory clinic now because from what people have said on this thread, it doesn't really make any difference in the longrun, it just confirms what the family already know, and ticks a box for the NHS.

 

[Countryboy]

The memory Clinics carry out numerous tests if and when your G.P suspects dementia, what help or support the person get from the memory clinic depends on several things , the obvious one is what stage the person it at when diagnosed , if the person in the early stage and wants to continue working believe me you would get all the help and support you could ever want and would continue until such a time you retire , I know I had that support for the first 8 years the Consultant and Occupational Therapists were brilliant they enjoyed the challenges I faced and supported me all the way obviously now I’m retired I don’t want or expect that support

 

[Lindy50]

The memory Clinics carry out numerous tests if and when your G.P suspects dementia, what help or support the person get from the memory clinic depends on several things , the obvious one is what stage the person it at when diagnosed , if the person in the early stage and wants to continue working believe me you would get all the help and support you could ever want and would continue until such a time you retire , I know I had that support for the first 8 years the Consultant and Occupational Therapists were brilliant they enjoyed the challenges I faced and supported me all the way obviously now I’m retired I don’t want or expect that support

Brilliant, Tony, to read that you got such great support when you most needed it

I hope you will continue to get some support as a retired person, if you should need it, even if it is of a different type or intensity

Lindy xx

 

[Countryboy]

Brilliant, Tony, to read that you got such great support when you most needed it

I hope you will continue to get some support as a retired person, if you should need it, even if it is of a different type or intensity

Lindy xx

Hi Lindy Yes they are still there if I need them obviously I don’t have the challenges now when I was first diagnosed I was 57 so they had something to work with so to speak and they kept me at work until my retirement age 65 I’m 72+ now so work is no longer an issue but because of all the meetings with my employers , Unions, Occupational Health , we travelled together such a lot the Occupation Therapist became like a member of the family to us I saw her more like a daughter

cheers Tony xx

 

[canary]

Well, due to circumstances that have happened recently I've actually made some progress! Mum had a fall a couple of days ago and was taken to A & E for stitches and they kept her in overnight because of the bang on her head. The OT at the hospital rang me yesterday morning so say she was concerned at sending Mum home to be on her own, and she asked if I had any particular concerns so I told her everything (I bet she wished she hadn't asked!). Anyway Mum is now staying in hospital until a Reablement package is put into place for her, this will continue for six weeks following discharge from hospital and the OT is arranging for Age UK to go in and help Mum with cooking, cleaning etc. Once the six weeks is up they will then re-assess her to decide what her needs are. I'm so relieved because at least she's on the Social Services radar now, and I can't see them withdrawing help once they have put it in place because they will now see how bad she is.

I'm not really bothering about the memory clinic now because from what people have said on this thread, it doesn't really make any difference in the longrun, it just confirms what the family already know, and ticks a box for the NHS.

Im so glad that you are going to get some help.
It took a stay in hospital for my mum to get help too
Hopefully, by the end of the 6 weeks re-ablement period your mum will be used to the carers coming in and will be happy for them to continue.

 

[Bree]

Why are we all abandoned by the NHS when we need it. As I see it, if MOH had smoked himself into COPD or some such lung disease, he would be treated for free by the NHS, likewise if he had liver problems due to heavy drinking he would be treated for free. Why is it that he didn't do either of these things, and yet a disease he has due to no fault of his own, is basically ignored after initial diagnosis ?

Because we the spouses or children are prepared to care for our relatives afflicted by dementia, the government sits back and allows us to struggle, it stinks. It needs a revolution by carers shouting loudly from the rooftops to bring about change, and lets face it, which ones of us have the time or chance to do that ?

 

[Rodelinda]

It is really difficult. The reality is that if there isn't a medical intervention to help, then the NHS cannot do much. That's where social care should help take over and support but it is woefully underfunded as the system wasn't really set up to cope with degenerative illness such as dementia. When the NHS was set up, the average age at which people died was much younger and most people died before dementia became the all encompassing problem. With the projections about future rates of dementia, increasing life expectancy and ongoing cuts to public spending, it's hard to see how things will improve unless all us carers, people with dementia (and indeed with other degenerative illnesses) make it a top issue for governments, health care providers, researchers (pharmaceutical and others) etc. I know this doesn't help now, but something has to happen. p

 

[chrisdee]

We needed a memory clinic for this reason:

We had huge difficulty getting Mum's lack of capacity formalised, as we had POA and knew she needed to go into residential care. Our cpn saw our dilemma and got an appointment for us. A psychiatrist actually wrote a letter to our doctor, copy to me that Mum lacked capacity. This cleared the way forward for us, a have rarely been so grateful to anyone, we were all desparate and of course 'there was nothing wrong with her' it was all very sad but necessary. Apologies for jumping the gun for some of you, yet others will have been down this very difficult road too.

 

[DMac]

Other reasons for a diagnosis?

We had huge difficulty getting Mum's lack of capacity formalised, as we had POA and knew she needed to go into residential care. Our cpn saw our dilemma and got an appointment for us. A psychiatrist actually wrote a letter to our doctor, copy to me that Mum lacked capacity. This cleared the way forward for us, a have rarely been so grateful to anyone, we were all desparate and of course 'there was nothing wrong with her' it was all very sad but necessary. Apologies for jumping the gun for some of you, yet others will have been down this very difficult road too.

Oh dear, having just had a really distressing first visit to the memory clinic with Mum-in-law this week, I was rationalising it all by thinking, "It's got to be worth it". Maybe I'm wrong.

For what it's worth, I'm still hopeful that a diagnosis, when received, WILL be worthwhile. Here's why.

* It would be useful to know what TYPE of dementia Mum-in-law has, so:
* We know what treatments are available
* We can get some sort of prognosis
* Mum-in-law can get access to whatever support is out there
* We can make some broad-brush plans for her future care needs

It was interesting to read that Chrisdee needed the support of the clinic to get his/her mum's lack of capacity formalised. Apart from Donezepil, has anyone else had a positive outcome from going through this distressing process? Or should we just stop now?

 

[Suzanna1969]

My Dad has Vascular Parkinsonism (Mum has Vascular Dementia) and I have noticed recently that his memory has been problematic, with him forgetting major events mid-term.

He had his annual appointment (Yes! Annual appointment! He is 88!!!) with the neurologist and I nabbed her before Dad got in to the room and asked if she could refer him to the memory clinic because I suspected Minor Cognitive Impairment. She nodded that she would.

And guess what? She forgot!!!!

Many many MANY phone calls later I got him an appointment, although I had to complain to the PALS service first. This prompted a phone call from the neurologist and a long chat, during which she claimed not to remember our conversation.

You couldn't make it up!

So you are not alone up there (I Googled the line you quoted in your post and found your authority easily) as we down here in the SE suffer the same.

When my Dad was in hospital last year he was horribly neglected and mistreated. I knew the only way I would get him out alive was to take over his physio and motivation myself so, after another fruitless conversation with the nursing staff, I went over to him and said 'Ok Dad, looks like we're on our own. So we need to do this.' Four days later he came home.

Not so easy when you need an official diagnosis of course, do my heart goes out to you. But it's not just your postcode, it's not even your individual hospital, it can be the team you're dealing with, the timing, or just pure dumb rubbish luck.

I still see our situation as being 'We're on our own'. I have no faith in the NHS.

 

[Kevinl]

1. It would be useful to know what TYPE of dementia Mum-in-law has, so:
2. We know what treatments are available
3. We can get some sort of prognosis
4. Mum-in-law can get access to whatever support is out there
5. We can make some broad-brush plans for her future care needs

Point by point
1. The type is pretty much irrelevant, we're all different, so I don't believe it matters, it's the reality of the situation you have to deal with. If your car is broken down at the side of the road all you want to know is when the AA will get there you don't need to know the exact fault, just how soon can you get on your way.
2. Donepezil/Aricept there are other options but it's all of a muchness.
3. The general health will give you more of a prognosis than any AZ diagnosis can.
4. Help will relate much more to her physical need than her AZ, there is very little help relating to people with AZ it's much more geared to people with physical needs.
5. Massive question, you need specialist advice (available on here for free) but it depends on her financial situation and to a point yours, where you live, if she has physical needs, so many things, would she go into care, who'd pay.
Broad brush plans don't really exist, "the devil is in the detail" and all or circumstances are very detailed so very different. So Expect the unexpected is my advice.
K

 

[Pickles53]

It is really difficult. The reality is that if there isn't a medical intervention to help, then the NHS cannot do much. That's where social care should help take over and support but it is woefully underfunded as the system wasn't really set up to cope with degenerative illness such as dementia. When the NHS was set up, the average age at which people died was much younger and most people died before dementia became the all encompassing problem. With the projections about future rates of dementia, increasing life expectancy and ongoing cuts to public spending, it's hard to see how things will improve unless all us carers, people with dementia (and indeed with other degenerative illnesses) make it a top issue for governments, health care providers, researchers (pharmaceutical and others) etc. I know this doesn't help now, but something has to happen. p

I think you put it very well Beate and would only add that all of us need to realise that we can't continually vote for tax cuts and then demand better services. We have to face up to the fact that the cost of health and social care is growing exponentially and be willing to contribute more.

I think too many of the population don't have any conception of how much the services we take for granted actually cost (though TPers know only too well).

 

[DMac]

Point by point
1. The type is pretty much irrelevant, we're all different, so I don't believe it matters, it's the reality of the situation you have to deal with. If your car is broken down at the side of the road all you want to know is when the AA will get there you don't need to know the exact fault, just how soon can you get on your way.
2. Donepezil/Aricept there are other options but it's all of a muchness.
3. The general health will give you more of a prognosis than any AZ diagnosis can.
4. Help will relate much more to her physical need than her AZ, there is very little help relating to people with AZ it's much more geared to people with physical needs.
5. Massive question, you need specialist advice (available on here for free) but it depends on her financial situation and to a point yours, where you live, if she has physical needs, so many things, would she go into care, who'd pay.
Broad brush plans don't really exist, "the devil is in the detail" and all or circumstances are very detailed so very different. So Expect the unexpected is my advice.
K

Kevinl, thank you for your reply. Gosh, what a lot to take in! Time for a deep breath and a cold flannel on my forehead, I think! Right now I feel like Alice in Wonderland who has fallen into a world with no rules, no map, no compass, white hares running here and there, a huge sense of urgency with clocks ticking madly and yet no idea of what time it is or how much time we have left or what to do next....all the while feeling judged and criticised for my inadequacies, like a bad dream... irrational, I know, but I wish I could shake off this feeling. My logical brain tells me that everything I'm doing is with the best intentions, and I do try not to beat myself up. But it's hard sometimes.

But thank you for your advice - it really is welcome.

 

[Beetroot]

It's impossible at times; all you can do is your best by your loved one. I find here is very, very useful - makes one feel not so alone with the responsiblity. The other thing I've found is reading books about dementia - they help give the things in your mind a structure of sorts. Although I found the local post diagnostic first meeting helpful, none of this, however good your local service is, or the advice you get, really gets over the day to day difficulties in dealing with caring for a person with dementia. It's a very lonesome road - and one in which you find out who actually means what they say when they vow to help you - very few I think, including family members who have as much moral responsibility as the carer.

 

[Countryboy]

Point by point
1. The type is pretty much irrelevant, we're all different, so I don't believe it matters, it's the reality of the situation you have to deal with. If your car is broken down at the side of the road all you want to know is when the AA will get there you don't need to know the exact fault, just how soon can you get on your way.
2. Donepezil/Aricept there are other options but it's all of a muchness.
3. The general health will give you more of a prognosis than any AZ diagnosis can.
4. Help will relate much more to her physical need than her AZ, there is very little help relating to people with AZ it's much more geared to people with physical needs.
5. Massive question, you need specialist advice (available on here for free) but it depends on her financial situation and to a point yours, where you live, if she has physical needs, so many things, would she go into care, who'd pay.
Broad brush plans don't really exist, "the devil is in the detail" and all or circumstances are very detailed so very different. So Expect the unexpected is my advice.
K

Kevinl when you say every person with dementia I s different yes thats correct and when you talk about a car / AA when the Car metal starts to rust out the garage can not repair it if you left to late it get to a point there's no good metal left to weld to well the Consultants at memory clinics can't help a person with dementia when they left it to late it all down to us personally only my personal view and I was diagnosed 16 years ago aged 57 the Health clinic supported me to stay at work until my retirement age 65 I never had a choice then when a male was 65 we had to retire ok I know that changed now