Handling relatives when DM is on a mental health ward

[orangemapleleaves]

Not sure how to handle this. My DM is currently in a mental health ward with dementia. A lot of it is also severe anxiety and depression.

I know from what she's said to me that she hates people seeing her like this, hates being confused, hates what she's become and is very frail and anxious.

Today when I got there she had a cousin visiting. I could see from the visitor's book that she'd been there for 1.5 hours. She said she'd be back for "another shift" next Saturday.

Mum looked utterly exhausted and went straight to bed afterwards, in tears, saying she felt very bad.

I messaged the cousin and said it's lovely she visited but mum is too unwell for visitors so she doesn't need to come again next week. I was polite but I also feel it was really insensitive - this cousin hasn't visited her at home and is not regularly in her life at all, so why is she now assuming a weekly visit is a good idea? And why stay for so long?

My sister has told me that "I have to remember this is sad for a lot of people" and implied I'm being unreasonable for trying to set a boundary.

But I know from talking to mum that she is in no frame of mind for small talk. It's like people want to cheer her up or distract her and it's not what she wants. I feel like it should be immediate family only at this point, but is that unreasonable of me? We are only allowed to visit her in the morning so it already feels like we have so little time with her.

When my DM was in her later years she would find visitors exhausting so I asked what her ideal time limit was and we agreed 15 minutes. That was for everyone, even me and my sister. She wouldn’t have told me unless I asked, but once we knew we let anyone who planned to see her that was the limit.

I think that your sister is wrong to be thinking about how this is for others as a starting point. The starting point is what your mum wants and what she can cope with. My mum also had Alzheimer's. She could manage longer visits from me because she didn't try to mask and also wasn't massively aware of how she presented, but it sounds as if your mum is very aware of how she presents to others and the effort of holding herself together as much as she can will be exhausting. I can also understand that it might feel humiliating to be seen like this by relatives she didn't see very often previously. Your cousin might be trying to take some of the visiting burden off you, which is kind, but maybe encourage both her and your sister to start with what your mum can cope with and take it from there.

It's good that you asked her and respected her limit. It's so hard.

I think putting a time limit of say 30 minutes on a visit is a good compromise. Then it's less tiring for your mum but it allows family to spend time with her. Did the cousin reply to your message?

@CarterBeatsTheDevil It's definitely the masking that is the hardest. It drains her completely. Thank you and I'm sorry about your mum. I feel so protective of her right. now because she's always been so proud and groomed and together and I know she still has enough awareness to be upset. I know people are trying to be kind but she has so little energy.

Not yet. I don't know if she's seen it. It will probably upset her but she can't come again next Saturday, it's just not what Mum needs.

My own DM was in a mental health hospital for 2 years before going into a care home, we were guided by the staff as to how much visiting she should have, but generally only my Dad stayed for longer periods, but us visiting did give him a break. These wards, as you’ve probably seen for yourself, some patients don’t get any visitors at all, so whilst over an hour was maybe too much for your Mum, it would be for most patients. I would speak to your cousin, firstly to ask how they found your Mum and tell them that the visit was too much, but I wouldn’t stop them visiting.

We’ve had this a bit, I think it was a combination of misplaced kindness and a perception of what it must be like having a mental health condition. Like “jollying along” was needed? And some of it was performative - visitor would boast to others about visiting “Poor Joan” having not been much help at all prior to this (eg no lifts to appts or shopping offered, but fine to appear, drink tea and talk at someone!).

Might help to establish from your DM how much visiting she feels she can cope with, and then act on that. Even if it’s none from anyone other than immediate family! It might mean a difficult conversation with the cousin but
your DM comes first and it’s about her, not the cousin.

Can it go on her records or above her bed on the whiteboard for visits to only be 30 minutes ?

Is there something else the cousin could be directed towards? Could she go and water plants or feed a pet instead of visiting? Or drop off biscuits, chocolate or similar for “Joan” to enjoy but without visiting.
Then she’s got something to do but isn’t annoying your DM.

Although it’s definitely not your job to create things for other people to do!

Has your DM actually said that she doesn’t want anyone to visit whilst she’s there?

Personally I’d be blunt and tell them the visits exhaust and upset her.
I was very protective of my DM’s dignity when she had more advanced dementia - I knew her former self would have absolutely hated anyone but close family to see her like that.
So when her sister was over from Canada and wanted to visit, I told her that DM almost certainly wouldn’t recognise her (true) and that seeing ‘strangers’ would distress her (blatant lie!). But TBH they’d never really got on anyway, and I knew Dm would have hated being seen like that. The sister was the type who’d have thought it her ‘noble Christian duty’ anyway, so I never felt bad about the lie.

I think you are thinking too short term here. Elderly care is a marathon not a sprint I think over the longer term you will be glad of having other family members in the visiting roster. Just tell your cousin what your mother needs from these visits. Infrequent and shorter in duration. Keep people on side as best as possible it is a long run in.

I think you should have spoken to the cousin. Text is very rarely the right medium for anything tricky. She probably believes she's doing the right thing to help you mum, and make life a bit more bearable for her, and maybe she is, but the visits need to be shorter.

I was very protective of my DM’s dignity
This, I didn't even want my own adult children to visit my DM when she deteriorated for my mums sake and theirs. I wanted them to remember her how she was.

I think you did the right thing in messaging the cousin. As you say, she isn't a regular presence in your mother's life so why would your mother want a lengthy visit from her now, of all times.

My mother was in a care home for a long time with Alzheimers, and my priority was always my mother's health, not other relatives' feelings. If my mother was up to visitors, fine. If not, they should understand that. If they wanted to do something nice for her, they could send a card or a small gift.

I deleted the message as she hadn't read it and I'm thinking I might be able to do something before next Saturday which is when she announced she was coming for her "next shift." I will probably message more generally at some point to wider family to let people know. It's been years of her at home very unwell and I think everyone is now wanting to say their farewells but it's too late. We don't need support now as she's finally being cared for by a health team, she is so frail and needs rest. She hasn't said not to have visitors but she's kind of beyond being able to say yes or no, I just could tell today she was struggling and she was very upset, plus she'd been saying the day before to me how much she hated how she was now. she knows she's not functioning, she still has that level of awareness, but she can't do anything about it. Like others have said I feel protective of her dignity, a bit like when you have a newborn baby and everyone wants to handle it.

I had this. The way I handled it was to speak to the care team, express my concerns and then get them to 'advise' us on preferred length of visits. In my case M had lost capacity to be involved in that decision.

But, it was a good way of handling it because the decision and advice meant it wasn't down to me and family had to respect it in M's best interests.

Hate to say this but I’m very suspicious of peoples motives when suddenly doing long session visiting when they have previously had little involvement day to day in someone’s life.

This is a good point. Immediate family has already been given limited visiting hours, we can only visit in the mornings.

Update: I got there today at 11am and could see in the visitor's book this relative had arrived at 9.40am. When I got to mum's room she was trying to take her out to the dining area as Mum wanted to go there, but this woman is not a nurse and is elderly herself, Mum is a real falls risk and quite sedated.

She was announcing as she left that she would be back next Saturday before visiting her girls, I said "Mum is very tired, I can see you came at 9.40am, can you keep visits shorter, maybe 20 or 30 minutes?"

She said, "Oh I didn't realise it had been so long, 20 or 30 minutes, OK fine!" and stormed out.

I could tell she was annoyed, but it's a mental health ward and a visit of that length from someone who hasn't been around for years once a week is just too much, it's not adding anything to mum's life as all she talks about is wanting to get out and how much she hates it in there.

Yep having similar issues. Have you mentioned it to the staff? Worth it if not, they keep an eye on visits for me.

That is exactly the right way to approach this.

@orangemapleleaves your relative sounds like a complete pain.

She is visiting for her own benefit, and not paying any attention to your mum's needs. She clearly can't see how exhausted and distressed she's making your mum.

She had a fall last night so may be getting transferred to a different hospital today. I was quite firm yesterday with her and I think she may have got the message, but I've got access to mum's phone so will message her this week and update her on the fall and make it clear that it's now immediate family only.

Thanks for everyone who has shared their experiences and backed me up on this. It's a difficult thing to watch as a daughter and I know there is no benefit to mum, she barely knows who I am let alone some random cousin.