Vascular Dementia query

[maryjoan]

Thank you so much everyone! It is so good to read your stories and realise that we are not as alone as we think we are... so many people in the same boat, and it's up to us to make sure our little boats do not sink!

Sometimes I have difficulty in getting my head around things, and I think this is because we are not married, and because we have not been together all that long. I cannot ever see me walking away from him, but I do wish the GP had not told me that was my only way out of this situation.

Once the snow has gone and people are back in work, I am going to phone social services about a new care plan, as I was stupid enough to think once they did it, that was that. They now tell me it has to be done every year!

We learn so much in this new job as carer don't we?

 

[maryjoan]

I am very new to this (husband diagnosed the week before Christmas at the age of 58) but we have a friend whose wife is in the final stages of vascular dementia and he pointed me in the direction of Contented Dementia (it won't let me post the link here so you'll need to look it up). I realise their techniques won't be for everyone but I can truly say that since I put a couple of strategies in place our lives have been transformed. Before, my husband was always anxious and irritable as well as completely losing his sense of humour. After, most of the time he is (almost) his old self. I am sure this won't last but they give you strategies to work with and I think it's worth considering.

I am going to have a look at that - thanks a lot

 

[Marnie63]

No follow ups here for mum. She 'bypassed' any need for the memory clinic as she went from 'normal' to very confused and no memory in about 3 days! My only contact with the local memory clinic was to attend their very excellent 'Understanding Dementia' course.

It's a shame there aren't more Admiral Nurses - we have none in our area it seems. I'm not really sure what they would be able to do to help us exactly, but even just having some kind of constant 'dementia expert' on hand would help. You know though, I've found that so many healthcare professionals I've come across have so very little knowledge and experience of dementia, that even if an Admiral Nurse did come to see us, I would expect him/her to be the same! The cynicism is well justified based on my experience.

We are lucky in that mum and I share the same GP (she lives with me) and he does seem to 'get it' and every time I go to see him about mum related issues, he is most helpful and supportive.

Most of what I know I have learnt by observing mum over the past two and a half years and by being on this forum. The best 'experts' are those who have lived the experience.

I hope you do get some support maryjoan. Someone, somewhere, perhaps even on TP, said that with dementia you have to grab every scrap of help offered to you. I can vouch for that. It's nigh on impossible to do what we do without any support.

 

[maryjoan]

No follow ups here for mum. She 'bypassed' any need for the memory clinic as she went from 'normal' to very confused and no memory in about 3 days! My only contact with the local memory clinic was to attend their very excellent 'Understanding Dementia' course.

It's a shame there aren't more Admiral Nurses - we have none in our area it seems. I'm not really sure what they would be able to do to help us exactly, but even just having some kind of constant 'dementia expert' on hand would help. You know though, I've found that so many healthcare professionals I've come across have so very little knowledge and experience of dementia, that even if an Admiral Nurse did come to see us, I would expect him/her to be the same! The cynicism is well justified based on my experience.

We are lucky in that mum and I share the same GP (she lives with me) and he does seem to 'get it' and every time I go to see him about mum related issues, he is most helpful and supportive.

Most of what I know I have learnt by observing mum over the past two and a half years and by being on this forum. The best 'experts' are those who have lived the experience.

I hope you do get some support maryjoan. Someone, somewhere, perhaps even on TP, said that with dementia you have to grab every scrap of help offered to you. I can vouch for that. It's nigh on impossible to do what we do without any support.

Thank you Marnie, I see that you understand exactly what I am going through as your experience with your Mother was such a rapid thing. My poor ould fella is not here at the moment, and I am enjoying a very welcome hour or so on my own - there are two really lovely fellows in the village who know the situation and will give him a game of snooker one evening a week - it is a lifeline.....

 

[Dove from above]

I am going to have a look at that - thanks a lot

How strange, until today I'd not heard of Contented Dementia your the second person to mention It, which encourages me to look into it.

 

[Dove from above]

No follow ups here for mum. She 'bypassed' any need for the memory clinic as she went from 'normal' to very confused and no memory in about 3 days! My only contact with the local memory clinic was to attend their very excellent 'Understanding Dementia' course.

It's a shame there aren't more Admiral Nurses - we have none in our area it seems. I'm not really sure what they would be able to do to help us exactly, but even just having some kind of constant 'dementia expert' on hand would help. You know though, I've found that so many healthcare professionals I've come across have so very little knowledge and experience of dementia, that even if an Admiral Nurse did come to see us, I would expect him/her to be the same! The cynicism is well justified based on my experience.

We are lucky in that mum and I share the same GP (she lives with me) and he does seem to 'get it' and every time I go to see him about mum related issues, he is most helpful and supportive.

Most of what I know I have learnt by observing mum over the past two and a half years and by being on this forum. The best 'experts' are those who have lived the experience.

I hope you do get some support maryjoan. Someone, somewhere, perhaps even on TP, said that with dementia you have to grab every scrap of help offered to you. I can vouch for that. It's nigh on impossible to do what we do without any support.

They're looking at reinstating the Admiral Nurses in the East Riding,Unfortunately as with most things it's down to funding so won't hold my breath!

 

[longlostfan]

Well it seems like going down memory lane reading all these posts if you’ll excuse the gallows humour. Just like most of you the memory clinic discharged my husband 5 months after their official diagnosis after a memory test where he scored 66/100, the score, so I was told by that doctor, was low enough to confirm he had AD without having a scan, though if “we wanted one” it was possible to arrange. I should have asked for one to be done really but the attitude was almost “next please” and I wasn’t sure how to relate to anything that day. We had follow up visits at home two or three times by a nurse who was very pleasant but that was it. Since then I was told any problems see your doctor. Who doesn’t like talking about Alzheimer’s, but prefers to use the phrase “memory problems”. If only that was all it entailed.

 

[Spamar]

To be fair, OH didn’t like the terms Alzheimer’s or dementia after the first six months, but was happy with memory problems.
There are a lot of carers whose PWD don’t like the terms, it seems their problem is the gp using those terms!

 

[fortune]

I think follow-up support varies a lot by location. Here in Gloucestershire there is some help. We get a visit from a community dementia nurse twice a year and there are regular memory cafes etc in the locality. Our GP surgery has quite a lot of info on local services. You may have to really go and look for help. It may be there in some form. I also attended an understanding dementia course that was run by ex-carers and found that very helpful. There are sometimes carer support groups as well. Good luck

 

[Marnie63]

I found 'Contented Dementia' by Oliver James not particularly helpful, but looking back that's probably because mum was 'too far gone' very quickly, so some of the strategies were not possible with her any more. But I think it would be a helpful read for others.

At the risk of harping on about it (!) I will mention again a wonderful booked called 'Loving Someone Who Has Dementia' by Dr Pauline Boss. Again, looking back, I realise that some of the strategies she suggests for coping as a carer, I had already put in place myself. What it did for me was suggest some 'hope' in what can seem, at times, a very hopeless situation. Just having some of her thoughts and ideas to cling onto during desperate times was priceless for me. One of the things I've struggled with most over the past few years is the very hopelessness of it all, the fact that there really is absolutely nothing you can do to make things better. What you can do though is adapt your view towards it, the way you deal with it and how you handle things. You cannot control the dementia or the person with it, but you can control how you react. This books helps and confirms with ways of doing this, from start to finish. Highly recommend as a good read to give us, as carers, some hope in this situation.

 

[WA123]

How strange, until today I'd not heard of Contented Dementia your the second person to mention It, which encourages me to look into it.

They run a 2 day course which my son and I are going on this week so I should know more after that. As I said, I'm sure it won't suit everyone, but for us, for now, it has made such a difference.