Visits just getting worse

[Sarah1208]

I’m unsure what to do...so mum has been in the care home since 1st June, I am now able to visit by appointment, with PPE etc and the home has been as accommodating as they can. Mum hasn’t settled at all and is very upset when I visit and constantly cries, tells me how awful it is and that she can’t stand it any longer. She has deteriorated massively both mentally and physically, she has lost around 10lbs and is very much more confused and now very paranoid about the other residents and staff. They tell me when I’m not there mum is generally ok but obviously I have no idea on their concept of “ok”. I start the visit quite strong and try to chat about various things to distract her but she just wants to tell me how terrible things are and after a short while I can feel myself starting to crumble. I visit around 3/4 times a week but I am worried that I’m making her worse by doing so and also as awful as it sounds I am starting to dread the visits. I want the visits to be something she gets pleasure from but that’s definitely not happening. Yet she begs me to stay and promise that I will come again. It’s heartbreaking to see her so sad. I can accept the confusion and the decline in her condition but I just can’t bear to see her so unhappy.
I just don’t know what to do for the best? Could it be that she isn’t settled and might be better somewhere else or is it just for my benefit because I am the villain who put her in there? The doctors won’t adjust any meds and the home tell me they are doing everything they can......

 

[Canadian Joanne]

Is there any way that you could see your mother without her seeing you? That way you could see how she is when she thinks you aren't there. Perhaps if you cut back your visits for a while or even take a break for a week or two.

As far as the mental deterioration goes, it is a sad fact that moving a person with dementia does completely unsettle them for quite a bit. It's not so much deterioration as it is the fact that dementia cruelly shows how a person has lost the ability to learn new things and to adapt. Moving her again so soon will not improve things, I believe it would only make things worse.

What meds is your mother on?

 

[Sarah1208]

Is there any way that you could see your mother without her seeing you? That way you could see how she is when she thinks you aren't there. Perhaps if you cut back your visits for a while or even take a break for a week or two.

As far as the mental deterioration goes, it is a sad fact that moving a person with dementia does completely unsettle them for quite a bit. It's not so much deterioration as it is the fact that dementia cruelly shows how a person has lost the ability to learn new things and to adapt. Moving her again so soon will not improve things, I believe it would only make things worse.

What meds is your mother on?

Thanks for your reply. I don’t think it’s an option to see mums routine when I’m not there, although it might give me some comfort I agree. I’m not sure I could stop visiting right now it seems to be all she is living for despite her distress when I’m there. Mum is on 50g Trazadone a day that’s all, a couple of docs have said it won’t be touching her yet others have said she can’t have anything else as it will make her too sleepy and prone to falls. The home are shocked that’s all she takes. If she is unsettled and is suffering like she does during the visits surely it would be kinder to have her a little more drowsy than sobbing and feeling like everything and everyone is against her? But if it is only for by benefit then I agree more meds aren’t always the option. If someone was suffering from a physical illness then surely they would have every pain medication possible to make them comfortable? Somehow it seems acceptable that dementia patients are just left to get on with it?? I feel like things have taken a step backwards this last couple of weeks both for mum and for me and I’m scared what’s next if I’m honest.

 

[lemonbalm]

Hello @Sarah1208 . I'm sorry to hear about your visits. My mum has never really settled, even after two years in the same care home but this is very unusual and more down to mum's personality than the care home. However, regular tweaks in medication have helped. She does have periods where she is content and I don't believe that she would be happier anywhere else. I would really push for a medication review for your mum. Perhaps an anti-anxiety/anti-depression medication like Mirtazapine. Also, a regular dose of paracetamol can be very effective.

I had to really push for mum's latest medication review but she went from being very distressed in the afternoons to being calm and cheerful.

Are you happy with the care home in other respects?

 

[Sarah1208]

Thanks for your reply. Some days I am happy with the care home...some days not. I’m scared to ruffle any feathers in case it gets taken out on mum. Maybe that in itself is a bad sign. And I think the SW is fed up of me let alone the mental health nurse.
I think I will ring the GP yet again today and see if I can arrange a ‘real’ visit...a virtual appointment with a dementia patient who is also very deaf can’t possibly be effective in a diagnosis.
I honestly don’t think she will ever settle, there has not been one day yet that she has said anything positive. She has also had 4 falls and a UTI as well as the decline in her weight, mobility and mental capacity. It’s so sad. I just want a tiny bit of quality of life for her, she has been through enough now.

 

[lemonbalm]

I understand completely. I should say that, when I was visiting every day, my mum could be literally screaming one visit and I would feel sick with dread at the thought of the next visit, when she could be cheerful and calm. This is all really heart rending for you, I know, but I do think things can be improved for your mum and for you. It's particularly difficult at the moment, with these restricted types of visit. I still haven't even tried one with my mum.

I do feel that medication could help. It's so easy for people to say "it's just the dementia" but leaving people in distress is not acceptable. What does the mental health nurse have to say about your mum?

 

[Sarah1208]

I understand completely. I should say that, when I was visiting every day, my mum could be literally screaming one visit and I would feel sick with dread at the thought of the next visit, when she could be cheerful and calm. This is all really heart rending for you, I know, but I do think things can be improved for your mum and for you. It's particularly difficult at the moment, with these restricted types of visit. I still haven't even tried one with my mum.

I do feel that medication could help. It's so easy for people to say "it's just the dementia" but leaving people in distress is not acceptable. What does the mental health nurse have to say about your mum?

 

[Sarah1208]

The mental health nurse...oh now she is a delight! Her exact words to me when I called asking for a review....”You have got to remember that your mother has a terminal illness and the she will get worse each day...if she had terminal cancel she would do the same but you would accept that.” After statements like that it’s hard to keep asking for help. It’s not like I have another sibling who could try there is literally just me.
I think if mum was up and down it would be easier to accept that the visits were going to be a bit of a lottery but she is in the same distressed state every time.

 

[lemonbalm]

Oh well that's charming. If your mum did have terminal cancer, she would be on every drug they could give her to help keep her comfortable. Grrrrr.

Is the care home manager approachable or is there a sympathetic senior member of staff you trust? I took up mum's medication review with my mum's care home manager and he did give in. The staff at mum's are good and genuinely seem to care about the residents but I still got a lot of " there's nothing we can do, or the doctor can do" along the way.

Mum was distressed and very angry for months before things started to get better. I did have to move her from her first care home but that was because they couldn't deal with her "challenging behaviour". Your mum really could be still just settling in at this stage but I am sure it could be made easier for her.

 

[Sarasa]

My mother hasn't really settled at her care home ether. She move in in May 2019 and tried to escape whenever she could, and was so rude to the carers. They all took it in her stride and a low dose of lorazepam seemed to help to a degree. What really helped was moving floors. I'm not sure if it's the different residents on the floor she's now on, or that she took to one of the senior carers (he's a man and she's always liked me better than women), but she seems, if not exactly happy, to be far more content. Of course I haven't seen her since lockdown, but from what I've been told she is OK.
I'd keep on plugging away to try and make things better. Yes dementia is a terminal illness and your mother won't get better, but everyone should be trying various strategies to make things as good as they can be for your mother.