How to deal with the decline

[MissDiane]

Hello everyone, I hope you have managed to have a good Christmas with your loved ones as best you can given all our difficult circumstances.

Mum came back to our house Christmas eve day, and enjoyed herself drinking sherry and eating mince pies. She came for a full Christmas dinner on boxing day as we decided it would be better for her to come then, as we would not be rushing her and our young kids could enjoy the day. We made a family visit to the care home Christmas day and all went well, although she was a little unhappy about some of her gifts and grumbled quite a lot!

Now just before Christmas the care home spoke to me to explain that the sleeping tablets mum has been on had affected her mood and mobility that it was not far to mum to continue it. She was tearful most of the day and very distressed. So they rang the GP, there was some to-ing and fro-ing with the CPN (I was not consulted - even though I have LPA) and they decided to take her off it. She was put on it as she is very vocal at night and wanders and the home were not able to deal with it every night as it is not a dementia home.

I agreed this was the right thing to do and to see how she settles without the sleeping tablets with a view to reviewing it again.

In the meantime the care home manger has rang the GP and CPN and got Haloperidol prescribed to use as required as mum can get very upset and vocal and I presume they can't deal with it. They are not a dementia home but said initially they could cope with anything but I am beginning to wonder if we have reached a point where we need to look for a dementia home.

I wasn't consulted about the Haloperidol, and have just read it is an anti-phychotic and these are very dangerous for those that have Lewy Body dementia, which I am being told is very likely that she was mis-diagnosed with Alzheimers and Vascular dementia when in fact it is probably Lewy Body dementia.

I am having trouble dealing with all of this, as I have two young children both having additional needs and they are a handful. I also have my dad who is terribly upset that mum had to move into a home back in July. When the kids go back to nursery and school I can begin to think straight.

I visited mum today and she was sleeping, she did speak to me and my dad but none of it made any sense, and she was crying, and deeply unhappy and resentful that we had put her in a home. We had to leave after an hour as she was just winding herself up and nothing we said made a jot of difference. we left her rambling on in distress and told the manager.

Should I be taking more control over the meds, should I have been consulted, should mum now be in a dementia home. She can be very lucid one minute and totally confused the next. It is so variable. She is so depressed. We all are. I have no support.

Do I ring the CPN tomorrow about the Haloperidol? Or the GP? I have run out of energy and answers. Sorry for the ramble I just needed to get it all out.

 

[Quilty]

I would talk to the home first. They might nit specialise in dementia but will have some experience. Then the gp. Sorry its so hard for you. Take it a day at a time. Love quilty

 

[sleepless]

Some years ago I was concerned when my father was prescribed Haloperidol, because he had not received a diagnosis at the time, and I too had read about it not being suitable for those with DLB.
Also, he deteriorated overnight when he was given this drug.
It was replaced with Quetiapine and he improved.
I have read on this forum of others benefiting from it, but if you are concerned, especially as there is the possibility of Dementia with Lewy Bodies, then I would raise it as soon as you can.

 

[Beate]

If you have health & welfare LPA then yes you should have been consulted. You are right that Haloperidol is an antipsychotic that should only ever been given as a last resort, and certainly not because a home that's not specialised in dementia cannot cope with her. I would demand that she is taken off it immediately, have a consultation with the doctor and look for a home that can look after her properly without trying to dope her up!

 

[sleepless]

I would talk to the home first. They might nit specialise in dementia but will have some experience. Then the gp. Sorry its so hard for you. Take it a day at a time. Love quilty

Quilty, as it is not a dementia home, I doubt they would have much experience with antipsychotics.
My dad is in a dementia care home and the staff administer the drugs but I would not ask them about anything medication-related. I think the CPN may be the one to ask, and they should speak to whoever prescribed the Haloperidol.

 

[MissDiane]

Thank you for the comments so far. I will ring the CPN in the morning.

 

[Amy in the US]

Disclaimer: not a medical professional and as such you shouldn't listen to me more than any other stranger on the Internet!

I would be VERY, EXTREMELY concerned about the use of haloperidol by the home. Ring the GP, the care home manager, the CPN, whoever is in charge and discuss this as soon as you can.

After you get the medications sorted, then I'd have a talk with the care home about their policy/procedure for changing medications, getting your consent, and informing you. As I'm in the States I'm a bit unsure about how it should work, but I should think that if you have power of attorney that they can talk to you and should be required to consult you at least, if not get your consent, before starting/stopping a medication.

And I do hate to say it but perhaps the current facility is not going to be able to provide your mother the level of care she needs.

For what it's worth, I'm so sorry about what you're experiencing.

 

[Aitchbee]

My Mum has LBD and I am aware that antipsychotics are potentially dangerous for people with this condition. Mum's psychiatrist prescribed Quetiapine for her which I believe is a safer drug. I would speak to the GP or CPN re your concerns. I hope you get things sorted soon

 

[MissDiane]

Thanks again for your comments, It helps immensely to be able to ask questions on here and get others opinions.

I rang the CPN, who is on leave, so spoke to the Team Manager who accessed mums file.

The CPN team manager said the file said the GP had discussed it with the care home manager. She agreed the GP should have consulted me before prescribing it and that I should complain to the GP.

I emailed the care home owner and manger to state my concern that Haloperidol had been prescribed without my consent. I restated that I was to be consulted regarding all changes to medication as I have LPA. This kicked off a series of telephone calls between me and the manager.

The care home then said that the meds were to be give PRN (as required) and I said I didn't want her on them. I was told they would only use them if mum was ransacking the place or attacking other residents. This has never happened!!! Mum can be awkward but not aggressive. The worst she had done is thrown a glass of water. I said I was confused why they have been prescribed in the first place. They said they would only use them in an emergency. There is either more to this than they are telling me and they can't meet her needs. It didn't seem right to me to get them prescribed, just in case?

I requested mums psychiatrist to review her again as I did not think the Haloperidol was warranted. He has contacted the home today and is looking at other options.

In the meantime the home agreed to put in mum's care plan not to administer without gaining my prior consent.

I said to the manager I don't understand why I wasn't consulted, why we hadn't had an open and frank discussion about it. She now maintains they were for emergencies but this was not what she told me on 24th Dec when she said they would be used as required up to 3times a day. At that point I had no idea these things were anti-psychotics.

I have yet to ring the GP and complain. That is tomorrows job.

 

[Beate]

Looks like the home is doing this routinely. Let's get some strong antipsychotics prescribed just in case they are needed. That's totally unacceptable. They should know how to deal with people without having to resort to this. Yes, they are saying it's for emergencies only, but who defines that? It basically gives them carte blanche to dope people. Not cool. Complain strongly.

 

[canary]

I think you said that its not a specialised dementia home. I think its likely that they dont know how to handle dementia symptoms and just medicate them.

 

[MissDiane]

I think I have always feared mum having to go into a dementia home as, at times, she is well aware of her illness and her situation and can have a reasonable but simple conversation. She also remembers some surprising things from days or weeks ago but other times she can't remember the last sentence she just said. It is so variable from one minute to the next, literally. Its no wonder she is depressed.

From the dementia homes I have seen people don't seem to communicate much. I have not found a good dementia home yet where people seem stimulated.

But, mum can also have periods of delusions and suffers from terrible dreams which she believes are real. So she has one foot in our world and one foot in hers. I was hoping to keep her in ours a little longer by giving her the opportunity to be with other non-dementia residents but if the staff aren't trained or qualified then I must look again at the options.

When mum is on form she says she likes the home, its the best place for her, she understands, and doesn't want to move. When she's not on form, its a prison, and she wants to be with her husband at home and is being detained against her will.

She likes the fact its a small home, familiar staff, all one floor, 200 yards from my house, enjoys the food. I guess my next mission is to see what other options there are.

I've raised the issue/complaint regarding prescribing anti-psychotics with the GP surgery, and they are looking into it. The home are talking about anti-depressants now, but mum is bored, and would like to get out now and again for a walk, but this has never happened in 6 months. The residents only go out for hospital appointments.

 

[MrsTerryN]

Diane your mother sounds very similar to my mother re lucidity and delusions though I think my mum is further along now.
Mum did have aggression originally only verbal but it did develop into some physical aggression.
Only due to mum's horrific delusions and distress was she put onto risperdone. Have to say such a major change in medication i would have expected discussions about.
I had discussions with the manager of the home, the nursing director and the geriatrican about mum being prescribed this medication and I was the one pushing for some form of medication for mum

 

[MissDiane]

Does anyone know if you have to 'activate' health and welfare POA or can you enforce it as long as its registered. The difficulty is the home are saying mum has agreed to things (other new meds) when it is clear that she does not have the capacity to agree to anything. That is why I have POA! They said if the GP prescribes drugs then I can't stop the home giving them to her.

 

[canary]

Unlike the finances POA, a H&W POA only applies once they have lost capacity, so you do have to activate it.
I only know this because OH and I have recently signed POA, so I dont know how you actually go about activating it, Im afraid.