Memory Clinic Visit

[Woolly Bully]

Hi everyone - Well, we have progressed! We are off to the Memory clinic tomorrow (Thursday) - my husband has a psychiatrist appointment- hopefully to get a diagnosis 🙂. He had some tests at home 4 weeks ago where he had a very poor score on the spatial awareness testing. He was strongly advised not to drive - thank goodness as he wouldn’t be told that his driving skills had deteriorated badly.

Does anyone have any thoughts on what should be asked? Also, has anyone gone private after diagnosis?

Answers would be very much appreciated, thank you for reading xx

 

[SAP]

Just wondering what you think private healthcare might offer following a diagnosis? Usually people want to look at a private consultation in order to get a diagnosis in a shorter time frame or a scan , both of which have waiting lists months long.

 

[Woolly Bully]

Just wondering what you think private healthcare might offer following a diagnosis? Usually people want to look at a private consultation in order to get a diagnosis in a shorter time frame or a scan , both of which have waiting lists months long.

Thank you. I was thinking along the lines of any treatment plans and the waiting times for anything further they may test for. It was my son that brought up the idea. I have no idea what happens in terms of care that my husband will get and just want to make sure of the best outcome for him.

We waited a long time to get a second home visit prior to this appointment - made lengthier in part because they had discharged him and we didn’t know. I really don’t want to delay anything again because of mishaps like this. Quite worrying really as I really want to trust the system but feel let down by that incidence of non communication. Hope that makes sense?

 

[canary]

I'm afraid that there aren't any treatment plans for dementia.

If it is Alzheimers then there is medication which can help improve the symptoms, although it doesn't suit everyone, and there are meds for specific symptoms (like psychosis) which can be prescribed if necessary, but there is nothing else. My mum got given the diagnosis of Alzheimers, was started on donepezil and was promptly discharged back to the GP

I'd save going privately until there is a need for meds for a specific symptom

 

[SAP]

Yes that makes perfect sense , the system is very unreliable now.
Following a diagnosis I’m afraid that there is very little in terms of further support and medication. Any medication will have to come from the psychiatrist in the first instance and then your husband will be discharged back to his GP.
There are no treatments plans as such and only limited medication for certain conditions with no guarantees.
I would suggest you would be better keeping your money for the time when you may need extra support with your husbands care.

 

[Sarasa]

It might be an idea to have a bullet point list of your concerns, things you've noticed to slip to the psychiatrist tomorrow so you don't have to say anything in front of your husband. My mum could sound very together, but having a list of our concerns enabled him to probe a bit deeper and see how confused mum really was.

 

[Woolly Bully]

Yes that makes perfect sense , the system is very unreliable now.
Following a diagnosis I’m afraid that there is very little in terms of further support and medication. Any medication will have to come from the psychiatrist in the first instance and then your husband will be discharged back to his GP.
There are no treatments plans as such and only limited medication for certain conditions with no guarantees.
I would suggest you would be better keeping your money for the time when you may need extra support with your husbands care.

Thank you very much - that is very helpful. X

 

[Woolly Bully]

I'm afraid that there aren't any treatment plans for dementia.

If it is Alzheimers then there is medication which can help improve the symptoms, although it doesn't suit everyone, and there are meds for specific symptoms (like psychosis) which can be prescribed if necessary, but there is nothing else. My mum got given the diagnosis of Alzheimers, was started on donepezil and was promptly discharged back to the GP

I'd save going privately until there is a need for meds for a specific symptom

Thank you very much for your response - it makes a lot of sense x

 

[Woolly Bully]

It might be an idea to have a bullet point list of your concerns, things you've noticed to slip to the psychiatrist tomorrow so you don't have to say anything in front of your husband. My mum could sound very together, but having a list of our concerns enabled him to probe a bit deeper and see how confused mum really was.

Thank you - good thinking. There are a lot of people, friends and family who think he is fine - even him at times 🙂. He is far from fine and is very wearing.

 

[My Mum's Daughter]

Thank you - good thinking. There are a lot of people, friends and family who think he is fine - even him at times 🙂. He is far from fine and is very wearing.

When he sees friends and family, he probably goes into "hostess mode" for the duration of the visit. This is where the PWD manages to mask their symptoms for a short while but this can not be maintained.

Mum became an expert at masking and could hold what sounded like a perfectly reasonable telephone conversation but most of what she said was made up.

 

[Woolly Bully]

Hi everyone - Well, we have progressed! We are off to the Memory clinic tomorrow (Thursday) - my husband has a psychiatrist appointment- hopefully to get a diagnosis 🙂. He had some tests at home 4 weeks ago where he had a very poor score on the spatial awareness testing. He was strongly advised not to drive - thank goodness as he wouldn’t be told that his driving skills had deteriorated badly.

Does anyone have any thoughts on what should be asked? Also, has anyone gone private after diagnosis?

Answers would be very much appreciated, thank you for reading xx

Hi everyone - well, we now have a devastating diagnosis. My husband has been diagnosed with Lewy Body Dementia. The consultant was great as were the rest of the staff at the clinic. I followed the advice of some of you from this thread and it really helped so, thank you again.

We got lots of sign posting information but it really is a minefield of support - have decided to do a bit at a time 🙂. Apparently Lewy Body Dementia incorporates “the worse bits of Alzheimer’s and Parkinson’s disease” - doesn’t sound very positive at all. Balance and Co-ordination plus muscle spasms are very present. He also had Polio as a child which left him with a wasted right leg, below the knee and a club foot which exacerbates balance etc. It’s a ****** shame and he doesn’t deserve this.

if anyone knows if we can get help from anywhere with this, I would be most appreciative - thank you xx

 

[jennifer1967]

How's the morning clinic left it? Is he discharged? Alz soc help support with all.dementia. if your husband is pension age? There's The attendance allowance, discount Council tax, it's worth going on age UK website to check what you are entitled to
They also help with filling in forms

 

[Woolly Bully]

How's the morning clinic left it? Is he discharged? Alz soc help support with all.dementia. if your husband is pension age? There's The attendance allowance, discount Council tax, it's worth going on age UK website to check what you are entitled to
They also help with filling in forms

Hi jennifer1967 - the memory clinic consultant will see him again in 4 months and there will be a check to see how he is getting on with his medication patches in 4 weeks, so they haven’t discharged him. I will take a look on Age UK - thank you very much. x

 

[SeaSwallow]

Hello @Woolly Bully I am sorry to read about your husband's LBD diagnosis, it is a lot to take in for both of you. My husband also has LBD and I remember well the shock of diagnosis. if you have any questions I will do my best to answer them. In the meantime you might find the attached useful.

Dementia with Lewy bodies: Understanding your diagnosis

If you have recently been diagnosed with dementia with Lewy bodies, this booklet is for you. It will help you, and your family and friends, to understand more about the condition and how it can affect you.

www.alzheimers.org.uk

Dementia with Lewy bodies (DLB): what is it and what causes it?

Dementia with Lewy bodies (DLB) is a type of dementia caused by Lewy bodies, which are clumps of protein in the cells of the brain. Read more about what DLB is, and who gets the condition.

www.alzheimers.org.uk

 

[maisiecat]

Hi @Woolly Bully ,my husband has Parkinsons with Parkinsons dementia but because we did lots of clubs with the Parkinsons groups we knew lots of people with LBD.
If you haven't had an Occupational therapist in it is very helpful as with LBD falls become a particular problem. They will help you future proof your home with grip rails and equipment. Also my husband has riser recliner chairs which are useful so you are not trying to assist them out of the chair.
You don't have to accept anything they say but its mostly better to be slightly ahead of the game.
Good luck its a brutal diagnosis and you will both be very shocked but try and find some group activities. As symptons develop there is a joy in being with other people who understand and neither judge nor pity.

 

[Woolly Bully]

Hello @Woolly Bully I am sorry to read about your husband's LBD diagnosis, it is a lot to take in for both of you. My husband also has LBD and I remember well the shock of diagnosis. if you have any questions I will do my best to answer them. In the meantime you might find the attached useful.

Dementia with Lewy bodies: Understanding your diagnosis

If you have recently been diagnosed with dementia with Lewy bodies, this booklet is for you. It will help you, and your family and friends, to understand more about the condition and how it can affect you.

www.alzheimers.org.uk

Dementia with Lewy bodies (DLB): what is it and what causes it?

Dementia with Lewy bodies (DLB) is a type of dementia caused by Lewy bodies, which are clumps of protein in the cells of the brain. Read more about what DLB is, and who gets the condition.

www.alzheimers.org.uk

Hello SeaSwallow - that is very kind of you, thank you. Shock is a good word to describe how we feel too and I am sorry that you too are going through the same thing. How long ago was your husband diagnosed? x

 

[SeaSwallow]

Hello SeaSwallow - that is very kind of you, thank you. Shock is a good word to describe how we feel too and I am sorry that you too are going through the same thing. How long ago was your husband diagnosed? x

Hi @Woolly Bully My husband was formally diagnosed almost five years ago but the signs were there for at least two years before that. It is only over the last year the effects have really started to bite. We have good days and bad days.

 

[Woolly Bully]

Hi @Woolly Bully ,my husband has Parkinsons with Parkinsons dementia but because we did lots of clubs with the Parkinsons groups we knew lots of people with LBD.
If you haven't had an Occupational therapist in it is very helpful as with LBD falls become a particular problem. They will help you future proof your home with grip rails and equipment. Also my husband has riser recliner chairs which are useful so you are not trying to assist them out of the chair.
You don't have to accept anything they say but its mostly better to be slightly ahead of the game.
Good luck its a brutal diagnosis and you will both be very shocked but try and find some group activities. As symptons develop there is a joy in being with other people who understand and neither judge nor pity.

Hi maisiecat - Thank you, that is very useful. Where would I get an occupational therapist? Is this something referred to by a doctor? Yes, I feel that I need to be ahead of the game, it’s consuming me at the moment and I have to keep reminding myself to take one step at a time. Thank you again. x

 

[maisiecat]

Hi maisiecat - Thank you, that is very useful. Where would I get an occupational therapist? Is this something referred to by a doctor? Yes, I feel that I need to be ahead of the game, it’s consuming me at the moment and I have to keep reminding myself to take one step at a time. Thank you again. x

Usually it is suggested either by GP or Consultant but definitely ask for one. The trouble with falls is each time they are less confident and then less stable.
My husband has terrible balance,when he was at home we paid for him to see a neurophysiotherapist who specialise in these areas.
You are right to think of one step at a time but ask and ask again, the polite get nothing out of the NHS now

 

[Woolly Bully]

Usually it is suggested either by GP or Consultant but definitely ask for one. The trouble with falls is each time they are less confident and then less stable.
My husband has terrible balance,when he was at home we paid for him to see a neurophysiotherapist who specialise in these areas.
You are right to think of one step at a time but ask and ask again, the polite get nothing out of the NHS now

Thanks again masiecat. I most definitely will! x