What would you do ?

[Morganlefay]

I'm sorry: this is very long.....
I need to ask advice and don’t know who to ask. My OH was diagnosed 4 years ago and has mostly been OK – taking Aricept – all that time. But he has never wanted to talk about his illness so we don’t – like stepping on eggshells sometimes. But it has never been mentioned in 4 years. Now, fairly suddenly he has become much more confused – I am wondering if this very hot weather has played a part, and I also struggle to get him to drink enough (he’s very pig headed if he doesn’t want to do something). Our GP practice has jumped through a few hoops to become ‘Dementia Friendly’ though I haven’t the faintest idea what that means. I had a chat with kind Alzheimer's lady about it all and she said that there might be other drugs he could take if the Aricept was wearing off. So I asked our GP (a nice woman who has been our doctor for many years, but who says my OH won’t talk to her about his AD either) and she was quite dismissive and said that there weren’t any other drugs and there was nothing we could do. I then wrote to her a bit later on when it became obvious that he was moving into a different phase and I (politely) said that I wondered what ‘Dementia Friendly’ meant as they didn’t seem to have been very friendly towards my husband since she seldom sees him and can't discuss his AD with him. I got a sternish letter back saying that she is regularly monitoring his condition and is looking after him. This is simply not true. I don’t want to fall out with her, but she has already told me that she doesn’t discuss his AD with him, and all she seems to do it occasionally send for him to have his blood pressure taken – and this might well be done by the nurse in any case. I don’t want to involve Social Services or make a fuss but I would really like to feel that a doctor – ANY doctor - actually keeps a gentle eye on him. I would also like to feel that as his carer it would be possible for the same doctor occasionally to discuss what I might do to help him. The surgery also makes a thing of knowing who the carers are on their list, but as far as I can see there’s no point to that since they don’t seem to have time to help carers in any way at all. I don’t want to make a big fuss or fall out with the GP (who, I have discovered now sits on all sorts of important NHS committees and works very few days in the practice, no wonder we are short of GP time). What would you do if you were me ? I just want the BEST for him, like I wanted it for our children, and like we all do for our ill loved ones, but I feel we are failing properly to care for him.

 

[maryjoan]

I'm sorry: this is very long.....
I need to ask advice and don’t know who to ask. My OH was diagnosed 4 years ago and has mostly been OK – taking Aricept – all that time. But he has never wanted to talk about his illness so we don’t – like stepping on eggshells sometimes. But it has never been mentioned in 4 years. Now, fairly suddenly he has become much more confused – I am wondering if this very hot weather has played a part, and I also struggle to get him to drink enough (he’s very pig headed if he doesn’t want to do something). Our GP practice has jumped through a few hoops to become ‘Dementia Friendly’ though I haven’t the faintest idea what that means. I had a chat with kind Alzheimer's lady about it all and she said that there might be other drugs he could take if the Aricept was wearing off. So I asked our GP (a nice woman who has been our doctor for many years, but who says my OH won’t talk to her about his AD either) and she was quite dismissive and said that there weren’t any other drugs and there was nothing we could do. I then wrote to her a bit later on when it became obvious that he was moving into a different phase and I (politely) said that I wondered what ‘Dementia Friendly’ meant as they didn’t seem to have been very friendly towards my husband since she seldom sees him and can't discuss his AD with him. I got a sternish letter back saying that she is regularly monitoring his condition and is looking after him. This is simply not true. I don’t want to fall out with her, but she has already told me that she doesn’t discuss his AD with him, and all she seems to do it occasionally send for him to have his blood pressure taken – and this might well be done by the nurse in any case. I don’t want to involve Social Services or make a fuss but I would really like to feel that a doctor – ANY doctor - actually keeps a gentle eye on him. I would also like to feel that as his carer it would be possible for the same doctor occasionally to discuss what I might do to help him. The surgery also makes a thing of knowing who the carers are on their list, but as far as I can see there’s no point to that since they don’t seem to have time to help carers in any way at all. I don’t want to make a big fuss or fall out with the GP (who, I have discovered now sits on all sorts of important NHS committees and works very few days in the practice, no wonder we are short of GP time). What would you do if you were me ? I just want the BEST for him, like I wanted it for our children, and like we all do for our ill loved ones, but I feel we are failing properly to care for him.

You are not alone - we are here for you.

You are certainly not alone when you feel that you have been given the brush off by doctors and other medics - I feel like that, and a lot of others here feel the same.

There is no cure, there is no real treatment, the path is unpredictable. Dementia is the most foul of diseases. There is not a lot the doctors can do - they do not monitor patients with dementia, as carers would wish.

My greatest help is TP - I have learnt so much here and found so much support and genuine people who are all in this boat together.

I also want to do the best for my OH, but I fear he has gone elsewhere - the person I live with is not him, and it is really hard to come to terms with that.

Come on here as often as you like, talk to us, and we will do our best to support you ........

good luck

 

[Amy in the US]

A sudden change should be checked out. It could be the dementia progression, but it could also be an infection (especially urinary tract), other underlying illness, dehydration, constipation, electrolyte imbalance, blood pressure, a medication reaction, I think that's all the common ones. I'd get him seen by the doctor ASAP. Best wishes.

 

[Kat.moo]

You are not alone - we are here for you.

You are certainly not alone when you feel that you have been given the brush off by doctors and other medics - I feel like that, and a lot of others here feel the same.

There is no cure, there is no real treatment, the path is unpredictable. Dementia is the most foul of diseases. There is not a lot the doctors can do - they do not monitor patients with dementia, as carers would wish.

My greatest help is TP - I have learnt so much here and found so much support and genuine people who are all in this boat together.

I also want to do the best for my OH, but I fear he has gone elsewhere - the person I live with is not him, and it is really hard to come to terms with that.

Come on here as often as you like, talk to us, and we will do our best to support you ........

good luck

I have to agree with this. Dementia is unpredictable. Sadly, What we perceive as ‘change’ seems insignificant to medical professionals unless it is drastic. Meds slow things down but will not cure. I would try to get a second opinion if it was stressing me out though. Good luck xx keep strong

 

[marionq]

This is why I asked the Memory clinic not to discharge us. John was diagnosed six years ago and we see his psychiatrist every six months or more frequently if I want. She talks to both of us although John is less able to tell her anything as his illness worsens. I feel she takes into account what I tell her and is interested to the point that she has stopped me in the street twice when out walking (we live near a hospital where she is a consultant).

If you feel things are not going well ask to be referred back to the clinic which prescribed Aricept and have a list ready of your concerns.

 

[Kat.moo]

This is why I asked the Memory clinic not to discharge us. John was diagnosed six years ago and we see his psychiatrist every six months or more frequently if I want. She talks to both of us although John is less able to tell her anything as his illness worsens. I feel she takes into account what I tell her and is interested to the point that she has stopped me in the street twice when out walking (we live near a hospital where she is a consultant).

If you feel things are not going well ask to be referred back to the clinic which prescribed Aricept and have a list ready of your concerns.

i didnt Think to ask memory clinic not to discharge us back to GP. We had 4 appointments in the past year. Which seemed far too less to me. But was told gran’s fine and is getting on well. Whatever that means. She is incontinent and doesn’t know who I am!

 

[karaokePete]

Hello @Morganlefay, there are other drugs for Alzheimer’s dementia. My wife is on both Donepezil (Aricept) and Memantine, and others exist. On the GP front, maybe there any other doctors at your surgery who you could try.

As has been said already, there are other possible causes for a downturn. UTI was mentioned and this would be a particular risk in hot weather so good hydration is important. Maybe you could speak to a different doctor on that issue and leave mentioning the ‘D’ word to either your OH or the GP until you are at the surgery.

 

[Izzy]

I'm sorry you are having problems with your husband's medical care. I do think you should continue to explore whether there is a change of medication which could perhaps help him. He could also be checked out for an infection which might be causing the change in behaviour.

My husband was diagnosed in 2001 and was immediately put on Aricept (Donepezil). He was on this for a good number of years. We reached a point where the memory clinic doctor felt that it should be changed to another drug in the same family (anti-cholinesterase inhibitors). This was Exelon (also known as Rivastigmine). He was kept on that for a few years until his score on the MMSE (mini mental state exam) was very low.

Bill died in 2016 and we never once discussed 'dementia'. I just took him along to the appointments and he was happy enough to go through the hoops of the memory clinic tests etc and we got our prescriptions.

As Marion said perhaps you could ask to be referred back to the clinic which prescribed the Aricept.

 

[kindred]

I'm sorry: this is very long.....
I need to ask advice and don’t know who to ask. My OH was diagnosed 4 years ago and has mostly been OK – taking Aricept – all that time. But he has never wanted to talk about his illness so we don’t – like stepping on eggshells sometimes. But it has never been mentioned in 4 years. Now, fairly suddenly he has become much more confused – I am wondering if this very hot weather has played a part, and I also struggle to get him to drink enough (he’s very pig headed if he doesn’t want to do something). Our GP practice has jumped through a few hoops to become ‘Dementia Friendly’ though I haven’t the faintest idea what that means. I had a chat with kind Alzheimer's lady about it all and she said that there might be other drugs he could take if the Aricept was wearing off. So I asked our GP (a nice woman who has been our doctor for many years, but who says my OH won’t talk to her about his AD either) and she was quite dismissive and said that there weren’t any other drugs and there was nothing we could do. I then wrote to her a bit later on when it became obvious that he was moving into a different phase and I (politely) said that I wondered what ‘Dementia Friendly’ meant as they didn’t seem to have been very friendly towards my husband since she seldom sees him and can't discuss his AD with him. I got a sternish letter back saying that she is regularly monitoring his condition and is looking after him. This is simply not true. I don’t want to fall out with her, but she has already told me that she doesn’t discuss his AD with him, and all she seems to do it occasionally send for him to have his blood pressure taken – and this might well be done by the nurse in any case. I don’t want to involve Social Services or make a fuss but I would really like to feel that a doctor – ANY doctor - actually keeps a gentle eye on him. I would also like to feel that as his carer it would be possible for the same doctor occasionally to discuss what I might do to help him. The surgery also makes a thing of knowing who the carers are on their list, but as far as I can see there’s no point to that since they don’t seem to have time to help carers in any way at all. I don’t want to make a big fuss or fall out with the GP (who, I have discovered now sits on all sorts of important NHS committees and works very few days in the practice, no wonder we are short of GP time). What would you do if you were me ? I just want the BEST for him, like I wanted it for our children, and like we all do for our ill loved ones, but I feel we are failing properly to care for him.

Alas, I think the expression dementia friendly is pretty meaningless. Our church believes it is dementia friendly and I am challenging them to put this into action by helping me set up a carers group which I will run. It may work but it will be the only manifestation of the so say dementia friendly.
our doctors surgery is drop in and I used to take a note in saying I care for a man with severe dementia and have had to leave him to come here. They always let me jump the queue and go in first. That is dementia friendly in action. OTher than that, I am with you, what does it mean in practice? thank you so much for postipng. Warmest, Geraldine aka kindred.

 

[maryjoan]

This is why I asked the Memory clinic not to discharge us. John was diagnosed six years ago and we see his psychiatrist every six months or more frequently if I want. She talks to both of us although John is less able to tell her anything as his illness worsens. I feel she takes into account what I tell her and is interested to the point that she has stopped me in the street twice when out walking (we live near a hospital where she is a consultant).

If you feel things are not going well ask to be referred back to the clinic which prescribed Aricept and have a list ready of your concerns.

I wonder if things are different in Scotland, as we were not given any options on remaining with the memory clinic once the diagnosis was made......

 

[Izzy]

I wonder if things are different in Scotland, as we were not given any options on remaining with the memory clinic once the diagnosis was made......

My husband died two years ago so my knowledge of his things are managed in Scotland now may not be up to date. To begin with we visited the memory clinic every 3 months. During this visit he was given the MMSE exam and I had to answer a questionnaire on his daily living abilities. The appointment was very short and at the end we were given his prescriptions for the next 3 months. After a number of years it became a shared management situation. He still went to the memory clinic for the tests etc but he doctor there then advised the GP and we got the prescriptions from him. I'm not sure if that was the process across Scotland.

 

[maryjoan]

Postings like this make me so angry. The dismissive nature of some health professionals leaves a lot to be desired. Ultimately it means if you are not strong, articulate and willing to stand your corner for your loved one then, you are lost. You need to involve social services and make sure you get a social worker who is a mover and shaker involved to fight with you. If you think they are rubbish, sack 'em and demand an effective replacement. I did and it worked. This is not pleasant journey, it's not pink and it's not fluffy. It's hard and exhausting and the more people that know about this the better. Sorry to be rather negative but I've been involved in this game for years. People know my name now and I know some pros quake when they hear it mentioned. Best of luck, don't be ground down by the weight of so called clinical professionalism. You know your loved one more than anyone and your input is priceless.

Wonderful! You are a person exactly after my own heart! I agree with everything you say. I have been asked if I am willing to speak to a BBC reporter with the view of putting THE CARERS POINT OF VIEW onto the local BBC website - and, I am going in all guns blazing.

 

[kindred]

all

Wonderful! You are a person exactly after my own heart! I agree with everything you say. I have been asked if I am willing to speak to a BBC reporter with the view of putting THE CARERS POINT OF VIEW onto the local BBC website - and, I am going in all guns blazing.

yes!! YES!!! Thank you, thank you! Geraldine with all lovexxxx

 

[mumsgone]

I'm sorry: this is very long.....
I need to ask advice and don’t know who to ask. My OH was diagnosed 4 years ago and has mostly been OK – taking Aricept – all that time. But he has never wanted to talk about his illness so we don’t – like stepping on eggshells sometimes. But it has never been mentioned in 4 years. Now, fairly suddenly he has become much more confused – I am wondering if this very hot weather has played a part, and I also struggle to get him to drink enough (he’s very pig headed if he doesn’t want to do something). Our GP practice has jumped through a few hoops to become ‘Dementia Friendly’ though I haven’t the faintest idea what that means. I had a chat with kind Alzheimer's lady about it all and she said that there might be other drugs he could take if the Aricept was wearing off. So I asked our GP (a nice woman who has been our doctor for many years, but who says my OH won’t talk to her about his AD either) and she was quite dismissive and said that there weren’t any other drugs and there was nothing we could do. I then wrote to her a bit later on when it became obvious that he was moving into a different phase and I (politely) said that I wondered what ‘Dementia Friendly’ meant as they didn’t seem to have been very friendly towards my husband since she seldom sees him and can't discuss his AD with him. I got a sternish letter back saying that she is regularly monitoring his condition and is looking after him. This is simply not true. I don’t want to fall out with her, but she has already told me that she doesn’t discuss his AD with him, and all she seems to do it occasionally send for him to have his blood pressure taken – and this might well be done by the nurse in any case. I don’t want to involve Social Services or make a fuss but I would really like to feel that a doctor – ANY doctor - actually keeps a gentle eye on him. I would also like to feel that as his carer it would be possible for the same doctor occasionally to discuss what I might do to help him. The surgery also makes a thing of knowing who the carers are on their list, but as far as I can see there’s no point to that since they don’t seem to have time to help carers in any way at all. I don’t want to make a big fuss or fall out with the GP (who, I have discovered now sits on all sorts of important NHS committees and works very few days in the practice, no wonder we are short of GP time). What would you do if you were me ? I just want the BEST for him, like I wanted it for our children, and like we all do for our ill loved ones, but I feel we are failing properly to care for him.

Fight is what you have to do. Change doctor if the one you are using is not being helpful. Ad still seems to be slipping through the net i assume because ultimately there is no cure. This does not mean however that people are not entitled to the best care along their long and ardous journey. Best of luck to you xx

 

[marionq]

I'm not sure @maryjoan that they offered me a choice. Lol. I told them that I felt we were on a journey and I didn't know where it was going so I wanted to be able to talk to someone knowledgeable along the way. John's psychiatrist said a lot of people didn't want to keep coming to the clinic but she was happy to see us if that is what I wanted. I'm glad I did because I feel supported in my decisions.

She and her CPNs have been very helpful from the start. I also think it gives my GP confidence to know that I am getting her backing. Where I see situations breaking down it is often because the carer or the PWD have no one to advocate on their behalf. That is my job to some extent - to be John's advocate and get the best for him.

@Izzy I too get prescriptions from the GP but I discuss what he is taking with the consultant so that eg when I told her I was reducing the amount of Trazodone I was giving him she told me not to change the prescription for a while until we saw how it worked out.

 

[Izzy]

Yes @marionq that’s how the joint management worked for us.

 

[jugglingmum]

I wonder if things are different in Scotland, as we were not given any options on remaining with the memory clinic once the diagnosis was made......

We were with memory clinic for a bit, on 6 monthly checks, which as my mum was fairly stable were of no benefit to her, and used half a days annual leave for me.

At some stage they said policy has changed and left under care of GP unless issues, which I presume means if mum's behaviour would need further meds she could be referred back.

My suspicion is that with increasing diagnosis, the memory clinic no longer had the resources for 6 monthly checks. They weren't doing anything for mum either.

Her GP seems excellent so far so fingers crossed if there is an issue he will help.

 

[kindred]

I've been thinking about this denial of condition business which has come up in this thread and before. I wonder, I believe the ability to reflect is quite an advanced emotional/mental skill and I think it goes very quickly with dementia. I think we may be seeing an inability to reflect rather than outright denial. Could be wrong. What do you guys think?
Kindredx

 

[Morganlefay]

You are not alone - we are here for you.

You are certainly not alone when you feel that you have been given the brush off by doctors and other medics - I feel like that, and a lot of others here feel the same.

There is no cure, there is no real treatment, the path is unpredictable. Dementia is the most foul of diseases. There is not a lot the doctors can do - they do not monitor patients with dementia, as carers would wish.

My greatest help is TP - I have learnt so much here and found so much support and genuine people who are all in this boat together.

I also want to do the best for my OH, but I fear he has gone elsewhere - the person I live with is not him, and it is really hard to come to terms with that.

Come on here as often as you like, talk to us, and we will do our best to support you ........

good luck

Thank you so much, the kindness of people on here is only equalled by their wisdom and experience. My Mum had vascular dementia and ultimately became horribly ill, shouted, bit, ranted - and this a highly respectable ex nurse and doctor's wife. When I tell doctors etc that I am familiar with dementia and say that my mother ( who lived to be 94 before a merciful death) had it, they say ' oh but everyone is different' I want to scream, have any of us ever known a person with dementia to have ended life happily ? I haven't. I realise that there's not much that other people can say to me to make it ok, but just a hug, or a simple, genuine kindly word make such a difference. Thank you .

 

[Morganlefay]

I've been thinking about this denial of condition business which has come up in this thread and before. I wonder, I believe the ability to reflect is quite an advanced emotional/mental skill and I think it goes very quickly with dementia. I think we may be seeing an inability to reflect rather than outright denial. Could be wrong. What do you guys think?
Kindredx