Are the Doctors giving up?

[leigh]

Hello all,

Yesterday my mother went for a further memory test/update with her consultant, she was diagnosed with Alzheimers earlier this year after three years of early stages. She has tried three different medications and none of them have helped so the consultant decided yesterday to take her off the meds altogether.

He said he will write to her GP and notify him of this and that she wont be required to come in for further memory tests. We now have to contact him if there is a significant change in her.

I am confused because it feels like she is being let go by the system. I liked the fact that the past few years she has been under various consultants because atleast every three-six months she was being monitored. Now it seems they just want to send her home for us to deal with on our own. My mum is only 65 and physically well for her age, so it could mean years of supportive care if her symptoms dont worsen too quickly.

Is there any kind of help from the state that we can get that I dont know about. I dont mean financial, I know about Carers allowance, I mean visits or support really. My sister looks after her as far as doing her washing, cooking her a hot meal every evening, taking her shopping and to doctors appointments (she cant really go out without company incase she wanders). I have power of attorney and make sure all her bills are paid every month and she has savings for birthdays and Christmas. She also goes to her local AZ daycare centre twice a week.

I suppose I just feel helpless today because she is 2 hours drive away and I won't be seeing her for another week. I dont want to be concentrating on the negatives, I'm usually a very positive person. I feel let down by what the doctor said yesterday, because it feels like they have given up on her.

Does anyone else know what I mean? and if you experienced this with a relative, how did it all turn out and can we get any other support? Not sure if she would be able to get a CPN visit? and what good this would do?

Many thanks for any advice.

Leigh

 

[BeckyJan]

Does the consultant give a reason for 'the meds not helping her' - is it because the memory test results are poor? How long was she on the meds for - cos in the case of Aricept they told me it could be 3-6 mths before there was any benefit.

It may be a good idea to have a chat with your Mum's GP (hope she has a good one). Many of us here on TP go armed with notes of how the deterioration has developed and any interesting factors to do with your Mum should help him.
In all fairness I do not think many 'consultants in the mental health field' really want to give up. Sometimes we do have to accept that there is little else they can do. HOWEVER I am sure your Mum should be getting masses of support - and a CPN can or should be doing that.

Is there someone in the Alz. Society local branch you could talk to - they usually have all the inside knowledge of the system in your area and may put you on the right track. (I know our local Branch organiser would certainly be steering us through it).

Hope you get more help and advice here.
Good luck Beckyjan

 

[Skye]

Hi Leigh

I can understand that you feel 'cut adrift', and worried about the loss of support from the consultant.

My husband has benefitted greatly from medication, but he now approaching 'late stage', and the time will come when the meds are withdrawn. John's consultant has told me that when this happens, he will be taken off for about three months, and if there is significant deterioration in that time he will be put back on them.

Perhaps this is what your consultant meant by telling you to contact him if there is a change? Perhaps your GP could clarify this.

As for help, BeckyJan's suggestion of ringing the local branch of Alzheimer's Society is a good one. They will put you in contact with relevant agencies. What you need is an assessment by social services, to see what help they can provide in supervising your mum.

I know it's scary, feeling you have no-one to support you. But help is there, if you ask for it, and you will always find support on TP.

Good luck,

 

[leigh]

Thank you Hazel and Beckyjan, it is really nice to read your advice. I will try and contact mum's GP on Monday and have a chat about it.

Am going to try and organise a CPN to put her on a regular check list, because we arent sure how much longer we can care for her on our own. Mum is still living on her own, in a small bungalow about 2 minutes walk from my sisters house.

She hasn't started wandering about but she is getting very confused a lot of the time and her short term memory isnt working at all really. You can speak to her on the phone at 7.30 and by 8pm she wont remember you have called

We try not to see the bad bits though, try to look to making her time as happy as we can, she gets down a lot these days.

Anyway, thank you for your support ladies

Hope you are all well

Leigh

 

[lady racer]

are the doctors giving up

I am an RMN and a Manager of a unit for people with dementia. My advice to you is dont give up, fight for the help that you need and deserve, yes you are entitled to a CPN there is lots of help you can get, the sad thing is you have to fight for it, this should not be the case but it is. Dont let anyone tell you what to do, you know best and it is you who makes the choice not the authorities. I hope you do what you need to do my love is with you both.

 

[Margarita]

Does anyone else know what I mean

I only know so well that feeling.


When you’re diagnosed given medication, dementia nurse come around for a week, they do all the referral for day center with social services, OT come around to do assessment for adoption for the house, social worker ask me what help I need with help for my mother.

Then your left to it, year go by if you don’t ring saying that her needs are higher they leave you to it, another year go by I notice a drop, I go to doctor he does a referral for memory lady, to come around to do anther she does not like it that she been called out by my doctor, so she kindly tell me the reality of it all.

They not anything more that they can do for my mother, once all the support has been set up.

Hope you phone a social worker, that is the hard stage for the career I feel after being diagnosed, not to bad if they live with you , but I was like you in the past mum not living at home with me and I working .

Br strong, be positive yes it can make you feel negative, but if you have been a positive person in the past, it all come back, and that positive feeling make your get all the services to help keep your mother in her home, till the time come that you feel she needs 24/7 care, then that’s another hard stage for the career.

I choose my mother to live with me, when she got to that stage . Every one different.