Bad Day

[Doreen]

Hi everyone,

For the past 4 years my husband has had visits from a lovely CPN who has always cared what was happening, she has visited regularly every month and sorted out our problems as they arose and I always knew that she was only at the end of the telephone. This morning she rang to tell me that she as being transferred to another mental section at the end of January. I am gutted, just the thought of having to start anew with somebody else, and according to other carers at meetings I had struck gold when CPN's were handed out as they never saw theres and I know for a fact that the one we are being passed over to does not have time for house visits unless it is an emergency.

Sorry just had to get it out it has been boiling all day.

Doreen

 

[Chesca]

Doreen, you shouldn't have to start 'anew' Your husband's case notes are the new CPN's reference point and she should research them - you don't say whether it is the 'position' of your CPN that is being replaced (has she been rewarded by promotion because she is so good?), in any case you should expect the status quo to sustain. Regardless of personalities a good CPN versed in dementia will understand the slow introduction process. It may be that in her prior post your new CPN did not have to fulfill the same duties. But if, as it sounds, she has some shoes to fill, try to guide her gently onto your side: none of us like being told in a new job 'so and so did it like this'. You just need to maintain the same level of care and vocation that has sustained you through the last months, you have set the standards that work best for you both - use the Manager route if this doesn't happen.

Seek a meeting with the new CPN prior to her meeting your husband to reassure yourself and her of the way forward, trying to keep an open mind.

Having the choice is a blessing - we had horrible experiences and nightmare nights with CPNs - until we met one who really understood the system, not just a box ticker!

Chesca

 

[Doreen]

Hi Chesca,

Thanks for your reply, the thing is I don't think she is being replaced, I believe that we are being passed to the CPN from the Memory Clinic, a very nice lady but she is too busy at the Clinic to make regular visits ,this worried me yesterday, but today we have had a visit from the Staff Nurse from the Dementia Unit to offer Jim a day a week placing to assess his condition, we are going to see the Unit on Friday and he is booked in to be picked up next Tuesday, if he likes it (fingers crossed) that will give me every Tuesday to myself (doesnt that sound selfish) anyway the point is he will be more in the system than just visits from a CPN,
also seemingly this was done on my present CPN's sayso, she is coming on Thursday so I should find out more.

Best wishes Doreen

 

[Chesca]

Dear Doreen

You're not being selfish in needing/looking forward to a little time for you - your health and peace of mind, such as it can be, is an important factor in your ability to care for Jim. Everybody says much the same - it doesn't stop the feelings of guilt that you are reclaiming a bit of yourself while your loved one is ill, until you realise that they are not suffering and will be back very soon. Use the time as part of the 'caring contract' - a necessary battery recharge.

Good luck with the new CPN, such a pity you are losing a rare jewel in the caring system.

Take care
Chesca

 

[Sheila]

Hi Doreen, how did your Thursday meeting go? Have watched your posts and was waiting for you to tell us, but I'm an impatient tyke at times! Do hope it went well and that things will soon be sorted for your husband so that you can have a little time for you as well as all the caring. Please post soon, love She. XX

 

[Doreen]

Hi All,

Sorry not to reply, but it has been a bit hectic. Thursday's meeting went well my CPN who leaves next week has made arrangements for a nurse to visit regularly, plus on Friday (arranged initially by my friendly CPN)
we went to see the Hospital Day Unit , this is a day centre where patients go to be re-assessed and Jim's Consultant goes in regularly, arrangments have been made for him to go 1 day a week, an ambulance comes for him and fetches him home. I was very worried about this, as the words Day Centre do not go down well in our house, but he had a laugh with the staff and because it is at the hospital he has agreed to go if it will help him. So Tuesday is the day and I feel like I am sending my children to start school again for the first time. I just hope I can keep things calm and have no bad vibes because he sure picks things up quick when it is about him.

I would like to thank you for your concern and I must say that since I joined this forum in December, when I read through the posts I read many with the same problems as me, and it really helps to know I am not doing this alone.

All the best to everyone

Doreen

 

[Sheila]

Hi Doreen, great! Looks like things are getting sorted then. Glad your lovely CPN has made sure you will be looked after, it's such a worry. Having Jim picked up and returned home will be a blessing, it will ease it for both of you not to have the trauma of leaving him there each time. I used the same ploy, that it was to help with memory problems. Mum went fairly happily most of the time. What you said about feeling like it was your child, I remember feeling just like that, they are so vulnerable with dementia, just like littlies starting school. Hopefully things will start to fall into a pattern that gives you some time to yourself. Make sure you use some to rest as well as catch up on things. Oh and thanks for your kind words about our TP, much appreciated! Love She. XX

 

[angela.robinson]

hi doreen ,
good to hear your jims , reaction to day centre it sounds promising ,try to persevere at all cost a few days with time for your self will be great .my Jim went last year but he was sent home after 2 hours ,they thought it was may be to long ?the next week they sent him home after half an hour,he was to distressed,and aggressive ,they said they could not have him as they could not cope.and he would be better on a ward ,jim came home from the ward (respite)yesterday the second in 6 months it was very beneficial for me i feel ready to start again ,but no so good for him they had to double his dose of quetiapine to 400mg aday plus another drug ,dont know the name of till tomorrow any way he is as good as gold to day ,without the extra dose,well really just meant to say good luck,and let us know how it goes.ANGELA

 

[Doreen]

Hi,

Update on Jim's visit to the day ward on Tuesday.

Ambulance arrived and Jim went as quiet as a lamb, I couldn't believe it. Rang the ward after dinner and was told he was OK and had eaten his dinner. At 4 pm the phone rang and it was the staff nurse to tell me he was on his way home, she said he hadnt done too bad for his first day, just been a bit BOLSHI (my word) every now and again, had unfortunately he had to have a change of clothing, but nothing prepared me for his arrival home, he would not get out of the ambulance, and then after a struggle with the ambulance men they literally carried him out and down the garden path and into the house. Jim looked terrible and it has now been arranged that he travels by wheelchair. When they left I asked how he enjoyed his day and he didnt know he had been anywhere and it has not been mentioned since, SO what is going to happen next Tuesday??? Only time will tell.

Doreen

 

[Sheila]

Hi Doreen, I was wondering how things were going now? Love She. XX

 

[Doreen]

Hi She,

Things not too good at the moment, Jim went to the Day Ward (unwillingly) last Tuesday, in the afternoon I got a phone call to say he had pushed one of the staff and it had taken 3 people to quieten him down. I was quite upset at this because I knew when he arrived home he would bring the aggression with him. True to form, he started shouting as they wheeled him off the ambulance. The aggresion this time has been with everyone who has been brave enough to put their nose through the front door, including (unfortunately) the poor lady physio who was sent by the hospital to see if she could help, I am not sure whether she could help or not because he refused to do anything asked of him, so she has passed the buck and is going to arrange for an occupational therapist to visit and see what they can do for us both to help (so as you can see being in the system is paying off after only 2 weeks) now all I have to do is to get him to go again next Tuesday. I am not looking forward to that because today is the first time he has been quiet since Tuesday. I feel terrible telling him he has to go, but I have to keep him in the system where I can get help from someone who assessess him l day per week.

Hey Hum Roll on Tuesday

Best Wishes Doreen

and thank you for your kind thoughts, I read all the posts and there are people on TP a lot worse than me,it makes me feel I am whinging about nothing

 

[Sheila]

Hi Doreen, good grief, your not whinging girl, your hanging onto a cliff by your fingernails, hoping the powers that be haul you and Jim, (who you have tightly clutched to your side) up before you fall. Sorry if that's a bit overdramatic but it's how I see it! This is a really difficult time for you, you are right, you must keep him in the system, does your head in though doesn't it? I used to get myself in a right state too, before the time to go, while she was there,(wonder if she's OK) and then the agro when she came home. But it did pay off, medication was prescribed, a permanent day care place found and a wonderful SW all came from it. I do hope they get things onto a calmer footing soon for both of you. Watching someone you love so very much, struggle with what they see as reality, unable to put things right for them, it breaks your heart I know. Thinking of you both, much love, She. XX

 

[Nutty Nan]

Dear Doreen,
It sounds as though you have to be cruel to be kind. It is such an awful task, and I do hope the the stress won't be too bad for you, and that it will pay off in the long run.
Thinking of you - best wishes, Carmen

 

[angela.robinson]

hi doreen .
you have got all my sympathy,i know just what you are going through .i think the aggression must be the hardest thing to deal with especialy when it is so out of character for the person you know and love,i have just been given an extra tablet ,to go with the quetiapine,it is called lorazepam,it is to use only when things get out of controle ,though how i am going to get him to take it when he is in a state ,i dont know . i think i may use it when i think a situation is going to arise it seems that they are addictiveso are to be used sparingly,anyway i will be thinking of you on tuesday ,good luck .ANGELA

 

[Sheila]

Hi Angela, yes that's what I used to try to do. When I noticed small signs, her cheeks pinking up, more restlesness etc. I got the pill(s) down then so they took the edge off. Hope you can do it too. Love She. XX

 

[Doreen]

Hi,

Thank you all for your replies, Jim is verbally aggressive again today, he takes Prozac but I think maybe it is not working anymore and he needs a low dose tranqualiser, as I have heard nothing about a new CPN, the old one used to give her input to the Consultant, I am hoping the Day Ward will come up with something.

I dont know how long they will allow him to keep going there,(a few month I hope) as there is a waiting list. I have already been told a normal Day Centre would not be able to cope with him. If I go to the GP about the aggression he will just write to the Consultant I have been down that road before and it takes for evermore.

Once again thanks a lot I will keep you posted

Doreen

 

[Sheila]

Hi Doreen, Jim needs a special EMI day care unit, there must be somwhere fairly near to you, because they must send them on there from the hospital one. Just keep asking, you get to feel like a parrot I know, but it's the only way. Hope the aggression soon eases, it was scary with my Mum, but dealing with a man is harder as they are so much stronger. Do hope the sun shines for you tomorrow. Love She.XX

 

[angela.robinson]

hi doreen, can you not just ring the consultants secretary ,and ask for help? i dont have a cpn only if i ring the hospital,where they are both based ,one of them usually comes pretty quick ,though i normaly only get a consultants visit every 3 months .i rung just last week to see why i did not have a regular CPN they said they only came when asked ,they were more for seriouslly mental patents idont know how much more serious there meant to get ,but at least the consultant came and sorted a few things for me ,ANGELA

 

[Norman]

Hi Doreen
I think Angela's idea is the best,ring the consultants secretary.
Our consultants secretary is always most helpful,and the message will get to consultant.
We have a lovely CPN, only comes when tablets are due and have a chat,but I am sure she would be there if we needed her.
Norman

 

[Doreen]

Hi Angela and Norman,

Thanks for your replies, I have this morning rang the staff on the Day Ward and they have spoken to Jim's consultant who has prescribed a syrup called Promazine to be taken morning and night. The lady I spoke to said she will give him his first dose tomorrow when he arrives for the day, I just wished her the best of luck and hope it works while he is there, they then may be able to manage him better. Regarding the CPN it is now two weeks since ours changed jobs and so far no one has been in touch. I mentioned this on the phone this morning and she said they were so short staffed she didn't know when I would get back onto a monthly visit and if I had any problems to ring them at the Day Ward, so I will see how that goes, she certainly sorted this medicine out quickly this morning so here's hoping, and please let him go peacefully tomorrow, at the moment he is asleep in the chair and looks like butter wouldn't melt etc.

Doreen