Admiral nurses

[yorkie46]

When my husband was diagnosed with ftd the consultant told me she would refer to the admiral nurses for support for me. At no point did she mention that this would be support for both of us. I have had one meeting with my Admiral nurse which I found quite difficult partly because she was talking about my husband and how I needed to prepare for the future yet the only things she knew about him were what I told her or she read in the letter I showed her from the consultant. At no point during our meeting did she suggest that she would meet my husband. I have been given the impression all along that the admiral nurse was there to support me. I am now wondering if I have been misled or have misunderstood because I've just received a patient satisfaction survey which asks if I'm the patient or the carer! I feel unable to answer the questions in the survey because they appear to relate to the patient.
Does anyone have any experience of this service and what I should expect from the admiral nurse?

 

[maryjoan]

Tell you one thing - if you have an Admiral Nurse - you are very lucky - they are like gold dust.......

 

[Louise7]

This link explains the role of Admiral nurses: https://www.dementiauk.org/get-support/admiral-nursing/

 

[Grannie G]

It is my understanding Admiral Nurses are there mainly for the benefit of the carer but if they don`t make an assessment of the person with dementia I can`t see how they can assess the needs of the carer.

We had an Admiral nurse and I`m afraid it didn`t work for us. I won`t go into details other than to say I felt my husband`s fears and anxieties were bypassed in favour of my well being and it didn`t sit well with me.

I`m sure as in every profession some are better than others and at least I had the experience.

I did consult the same Admiral Nurse at a later date and found her much more flexible, so perhaps as she became more experienced she developed a better understanding of dementia.

 

[yorkie46]

Thank you Louise7, I have read this but had been given the impression by the consultant that the admiral nurse was only support for me.

Like GrannieG I really don't understand how they know what sort of help and support I need without at least meeting my husband.
I have decided that will phone my Admiral nurse after Christmas before out next planned meeting to ask about this because I really need to know what I stand and how any support she can offer fits in with other help for both of us. I was totally unprepared for some of the things I was told at our first meeting regarding taking charge of things, not trying to make my husband understand things because he won't be able to, had I thought about 'do not resuscitate form'! Maybe I should have thought about these things before we met but I have been quite depressed recently and just wasn't prepared for such harsh reality. Hopefully I can talk some of these things through with my GP next week. I really need to get myself organised soon.

 

[Philbo]

When my husband was diagnosed with ftd the consultant told me she would refer to the admiral nurses for support for me. At no point did she mention that this would be support for both of us. I have had one meeting with my Admiral nurse which I found quite difficult partly because she was talking about my husband and how I needed to prepare for the future yet the only things she knew about him were what I told her or she read in the letter I showed her from the consultant. At no point during our meeting did she suggest that she would meet my husband. I have been given the impression all along that the admiral nurse was there to support me. I am now wondering if I have been misled or have misunderstood because I've just received a patient satisfaction survey which asks if I'm the patient or the carer! I feel unable to answer the questions in the survey because they appear to relate to the patient.
Does anyone have any experience of this service and what I should expect from the admiral nurse?

My wife was discharged by the memory clinic consultant back to the care of our GP (yeah right!) after 2 years. I asked where I could get more help and he reluctantly said he could arrange for me to see the admiral nurse.

I got to see her a few weeks later and I went along with a few questions about how to deal with some of the issues that I was struggling with with my wife's behaviour at that time.

Her replies generally involved letting my wife do whatever she wanted, even if that could potentially put her at risk. For instance, having explained that my wife often didn't want to go upstairs for bed, she suggested that I simply leave her downstairs then!

I found the whole session a bit pointless and my only other dealings with them (or not, as it turns out) was a few months later. My wife was starting to get incontinent and one weekend, desperate for some advice on how to cope, I rang the local AN helpline. I got an "office now closed" announcement, suggesting I leave a message and they would get back to me ASAP.

I rang various other support agencies, including Age UK ("we don't deal with incontinence advice", GP surgery (got the out-of-hours unit who suggested ringing GP on Monday!) National Admiral Nurse Helpline (who suggested ringing my local helpline) and finally, got to speak to a lovely lady from the National Dementia Helpline. She was so understanding and took the time to explain to me how a person with dementia can often forget the actual process of going to the toilet.

Needless to say, I never did get a call back from the AN team.

 

[BlueFox]

I can say that I found the AN team quite good. Maybe I just got lucky. I had a very specific question and they where able to point me in the right direction. I wouldn’t dismiss them totally, but , like most support it is who you get on the day.
Having said that I have never been offered a face to face meeting, my enquiry was by phone only. They also sent me an email saying how well they throught I was doing. Not certain now they assessed this on the phone, but it was nice that someone made an effort!!! I must have a good telephone manner

 

[yorkie46]

Well I've been feeling quite low so decided to ask my Admiral nurse if she would ever meet my husband. I had to leave a message and she returned my call today right in the middle of my my meal! She said it was not part of her role to have contact with the person with dementia! She asked why I wanted to know. I said I felt he had been totally left out of any support and felt he needs someone to talk to him to explain about his dementia and how it affects him and me because he r seem to think it affects me at all. I confess I completely forgot to mention the satisfaction survey I received. She said she would think about if there was any support available for my husband before our next meeting in January, not terribly helpful! I'm guessing I'll have to find someone myself. I will mention about the satisfaction survey asking if I was the patient or carer when I next meet with her. She asked how I was and I told her still struggling with my anxieties, she said I sounded a bit flat, well what does she expect?! I had to ring off because of my meal and because I was rushing off to meet a friend this afternoon. She said that was a good thing. I don't understand how everyone keeps telling me I need to get out and have a social life but I still have to come home to my husband who goes nowhere unless I take him. How is that fair or right? Why can't he have a life too? There's something not right there somehow. Maybe it's just me!

 

[PJ]

hi @yorkie46 doea your husband not have a dementia support worker? When I got my diagnosis of FTD I was contacted by one & I go along to Active8, sing for the brain & tea dances (when poss). I’m sorry to hear you are struggling to find support for your husband.

 

[yorkie46]

Hi PJ
No my husband was not offered a dementia support worker or anything at all really. The consultant said that they do two day courses every now and again which would be for both of us but separately, she said she would let me know when next one is but haven't heard anything yet. It's on my list of things to do to find out about it. I'm not sure he will agree to go but I hope he will, if not I'll have to go on my own which I don't think is really the point.
I really feel he was given the diagnosis and they washed their hands of him. I'm seeing GP next week too and will try to.talk to get again. My appointment is for myself to talk about my depression and anxiety but most of that is down to all my husband's problems which are gradually getting worse.
Will update after appointments next week.

 

[yorkie46]

Well I've seen my admiral nurse this morning, this was only our second meeting. I get the feeling that as I've been suffering with depression and anxiety, much of it linked to the problems I've had getting my husband diagnosed, she has taken on the role of counsellor for me. I am having counselling through another NHS agency and the admiral nurse said she doesn't want to stand on her toes so she won't see me again until after those sessions have finished.
However this morning we talked about the fact that I worry that my husband spends most of his time just sitting in a chair watching tv. I feel he should be more active and have more social interaction. I go out at least once every day and often more because I find that a good walk is the only thing that helps me to clear my head a bit at the moment and reduce my anxieties. My husband's mobility is so poor that he is unable to walk fast enough to come with me. I have suggested he should get a small buggy that I could put in the car so that he could come out with me but he's very resistant. That admiral nurse had two suggestions regarding this. One was for me to just go and buy a buggy and present it to him as a fete a complete. I said I can't do that became needs to try it. The second thing she asked was why am I worried about him sitting in a chair most of the day. I said because I feel he needs exercise. She said why does that really matter when he's been diagnosed with a serious life limiting condition. This completely floored me. All my instincts say encourage him to do as much as possibly physically and mentally and I certainly hadn't considered this life limiting at this stage. I feel it will only become life limiting if he's allowed to vegetate. She said she thinks I'm putting too much pressure on myself to make his life better when he's happy as he is and this is having a knock on effect on my health. She also said I might inadvertently be putting pressure on him which he can't deal with.
So it looks like I need to back.off and take things more slowly. I've been trying to get him to help me sort out years worth of things we've collected but I'm told I shouldn't expect him to do too much at a time because won't manage it.
I'm very confused about it all because all I want is to try to give him the best life I can. I find it difficult to understand how she can make assumptions about him having never met him and going purely by his diagnosis.
When I came home he asked me how things went despite the fact he doesn't really understand why I go to see her. I decided to tell him that she said I was putting too much pressure on myself but didn't say it was because I am trying to do things for him. He said he agreed that I'm putting too much pressure on myself and I need to look after myself. I wonder if he'll say that when I tell him I want a few days away in my own again!
I would appreciate anyone else's thought on this.

 

[Duggies-girl]

Well I've seen my admiral nurse this morning, this was only our second meeting. I get the feeling that as I've been suffering with depression and anxiety, much of it linked to the problems I've had getting my husband diagnosed, she has taken on the role of counsellor for me. I am having counselling through another NHS agency and the admiral nurse said she doesn't want to stand on her toes so she won't see me again until after those sessions have finished.
However this morning we talked about the fact that I worry that my husband spends most of his time just sitting in a chair watching tv. I feel he should be more active and have more social interaction. I go out at least once every day and often more because I find that a good walk is the only thing that helps me to clear my head a bit at the moment and reduce my anxieties. My husband's mobility is so poor that he is unable to walk fast enough to come with me. I have suggested he should get a small buggy that I could put in the car so that he could come out with me but he's very resistant. That admiral nurse had two suggestions regarding this. One was for me to just go and buy a buggy and present it to him as a fete a complete. I said I can't do that became needs to try it. The second thing she asked was why am I worried about him sitting in a chair most of the day. I said because I feel he needs exercise. She said why does that really matter when he's been diagnosed with a serious life limiting condition. This completely floored me. All my instincts say encourage him to do as much as possibly physically and mentally and I certainly hadn't considered this life limiting at this stage. I feel it will only become life limiting if he's allowed to vegetate. She said she thinks I'm putting too much pressure on myself to make his life better when he's happy as he is and this is having a knock on effect on my health. She also said I might inadvertently be putting pressure on him which he can't deal with.
So it looks like I need to back.off and take things more slowly. I've been trying to get him to help me sort out years worth of things we've collected but I'm told I shouldn't expect him to do too much at a time because won't manage it.
I'm very confused about it all because all I want is to try to give him the best life I can. I find it difficult to understand how she can make assumptions about him having never met him and going purely by his diagnosis.
When I came home he asked me how things went despite the fact he doesn't really understand why I go to see her. I decided to tell him that she said I was putting too much pressure on myself but didn't say it was because I am trying to do things for him. He said he agreed that I'm putting too much pressure on myself and I need to look after myself. I wonder if he'll say that when I tell him I want a few days away in my own again!
I would appreciate anyone else's thought on this.

Phew @Yorkie After reading your post I think she may have a point. I am like you trying to make things nice for dad by keeping up his interests but maybe I should ease off a bit too.

Dad has some nice books that he used to read and I keep encouraging him but the other day I found that he had stashed them all away under his bed along with his CD player that I encourage him to play his music on. Perhaps it is his way of dealing with the fact that he can no longer follow a book or operate the CD player anymore. I am looking at it differently now. Dad is happy looking out of his window most of the time (perhaps I should let him) I don't know but it is something to think about.

My thoughts on your going away for a few days on your own is 'go and enjoy yourself'

 

[canary]

Apathy is one of the main symptoms of FTD @yorkie46 as is stimulus overload, so it is absolutely typical that they spend all day on the sofa, or in their room - sometimes in the dark too!
My OH spends all day on his android tablet. Goodness knows what he does on it (Ive switched on the parental controls on the wi-fi so he cant access porn, gambling or dating sites), but he sits glued to it until the battery runs down and then he watches TV