Slipping through the net?!

[Trying01]

Hi, this is my first post. My MIL (80) has had obvious memory problems for some years. We arranged a visit to her Drs surgery a couple of years ago and he referred her to the Memory Clinic. They visited, diagnosed early stages of dementia and prescribed tablets, not sure which ones.

Things have gone down hill and I phoned the Memory Clinic a couple of months ago to ask them to revisit. I was advised that she was no longer under their care and that we needed to ask the Dr to re-refer her. We still don't understand how that can happen!!

FIL (82) is caring for her but things are getting more difficult. There are times when she doesn't recognise him which has to be upsetting. Her SIL lives close and they visit her every day. She is bed-bound but has carers in 3 times a day. They treat FIL as her carer so if she needs prescriptions or anything he is contacted.

We live 3 hours away. Daughter lives further North. Son is closer but working full time.

I suppose my main question is how we can be sure that the original diagnosis was correct? From what I have read there are varying forms of Dementia plus Alzheimers. Should we be asking for a referral?

FIL has not wanted to go back to the Drs as there is no cure which we understand but he is her sole carer and is currently waiting to attend hospital as his hand has begun to shake uncontrollably.

I know you won't be able to answer definitively but I needed to rant!! I lost my Dad in August (brain tumour) and the similarities are all there.

She repeats herself endlessly, she forgets her Mum and Dad have gone, she forgets she has eaten - the list goes on. It hurts to see her like this and we feel useless as far as FIL is concerned. He needs help but the idea of Social services being involved is too much for him.

 

[marionq]

My experience is that the Memory clinic will continue to see a patient as long as they wish. Some choose not to go back and prefer to just deal with their own GP. I take John to both on the basis that two lots of expertise might possibly be better than one. Plus we get regular visits from a CPN which has been very helpful. Once you give up the MC then you need the GP to make a new referral.

It's possible your inlaws chose not to go back.

 

[Katrine]

In England I think it is the norm now for patients to be given treatment/assessment and then be taken off the books once they are fully back under GP care. This happened twice to MIL. The CMH nurse said "We haven't got the resources to see everyone regularly and just tell them they are getting worse, because you know that anyway. You have to get your GP to refer you back if you think there is something new we can do for you."

 

[fizzie]

Welcome to TP, lots of support on here
You really really really need to persuade him to go the GP to get re-referred to the memory clinic. It's no good him saying that there isn't anything they can do, if she has Alzheimers there are medications which will stop it progressing so quickly so it is really important at this stage and lots of places take them off the books

My gut instinct tells me that he is finding this all too much and he is probably very worried about his own diagnosis. Is there someone who could 'hand hold' him through this early bit to get some of these things in place? Just a couple of days in his area would start the ball rolling and sometimes people just need that initial support to make things easier.

He should be getting Attendance AllowanceIf you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081. It's worth a call to them anyway to find out about other things and very practical help

If you can possibly get him to speak to social services for an assessment (carers for him will give him some free hours even if it is just to read a book or go for a walk and an ordinary one for MiL) then it would make a difference. They may suggest a day centre for MiL - this was our life saver.

Some places have an admiral nurse so google it and see if there is one in there area and if so please get them to tap into the service - it is so helpful.

I don't know from what you say if she is having incontinence problems but if not it is quite likely so worth storing this for the future and the continence service at the local NHS Trust are usually excellent (waiting list) and will provide pads free which saves massively on mess and washing and smell lolol Lets be practical.

and finally one for all the family.............................................
This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

Do have a look at it
http://www.ocagingservicescollaborat...y-Impaired.pdf

The Dementia helpline is a useful number to have

Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday


I hope that some of this is helpful

 

[Trying01]

Thank you.

Hi, thank you for your reply. We visited for a couple of days, got home and phoned to say we were here - MIL first question was when are we going to visit as she hasn't seen us for ages!!

Attendance Allowance has been claimed and awarded. Drs appointment is made for next week when SIL will be there so hoping the GP will step up. She is off the radar at the moment so have fingers crossed.

Have tried to stress to him that it is him we are worried about without going over the top. My OH isn't handling it too well but we will get there. Baby steps!!

Welcome to TP, lots of support on here
You really really really need to persuade him to go the GP to get re-referred to the memory clinic. It's no good him saying that there isn't anything they can do, if she has Alzheimers there are medications which will stop it progressing so quickly so it is really important at this stage and lots of places take them off the books

My gut instinct tells me that he is finding this all too much and he is probably very worried about his own diagnosis. Is there someone who could 'hand hold' him through this early bit to get some of these things in place? Just a couple of days in his area would start the ball rolling and sometimes people just need that initial support to make things easier.

He should be getting Attendance AllowanceIf you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081. It's worth a call to them anyway to find out about other things and very practical help

If you can possibly get him to speak to social services for an assessment (carers for him will give him some free hours even if it is just to read a book or go for a walk and an ordinary one for MiL) then it would make a difference. They may suggest a day centre for MiL - this was our life saver.

Some places have an admiral nurse so google it and see if there is one in there area and if so please get them to tap into the service - it is so helpful.

I don't know from what you say if she is having incontinence problems but if not it is quite likely so worth storing this for the future and the continence service at the local NHS Trust are usually excellent (waiting list) and will provide pads free which saves massively on mess and washing and smell lolol Lets be practical.

and finally one for all the family.............................................
This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

]

The Dementia helpline is a useful number to have

Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday


I hope that some of this is helpful