Elderly lady bedbound - what is appropriate here?

[DoIneed1]

My 80 year old MIL has cancer and other health issues. She has just come home from hospital, and has carers visiting 4 times a day. She is completely bed bound, and too frail even to be hoisted into a chair.

My husband thinks that she needs a member of the family staying with her every night, and I agree. However other members of the family say that this isn't necessary. MIL herself doesn't want people staying with her, but I am not sure that she is making good decisions at the moment. She has a history of not asking for help and then becoming extremely unwell as a result.

I can't bear the thought of her spending up to 12 hours on her own each evening. But we don't know what to do for the best. She is clear that she doesn't want people there, though hasn't said why.

Any advice or thoughts would be welcomed.

Does she have a way to communicate with family members if there is a problem eg if she falls out of bed? You can get all kinds of gadgets now eg a pressure pad. Can she still use a phone to text or call? You could set up a rota for who is on MiL duty each evening so someone is available. Difficult if she won't co-operate, though.

Marie curie nurses do sit with and care for people to give families a break when they get to the end of their life ( sorry there’s no delicate way to put this) so may be worth contacting.
I agree though someone should be in the house with her

Thanks for the replies.

I think that we just need to insist on staying, and hope that she gets used to it. It's not helped by the fact that other family members are accusing us of bullying by doing this.

We are also worried about someone breaking into the house when she is on her own. I know that is unlikely to happen but it's not impossible.

If someone stays overnight will they be helping her change position and change any pads, maybe she is a bit worried about family doing that. Does anyone have poa for her if you feel she isnt able to make decisions at times. Is she funding the carers herself.

Sorry to be blunt but despite her health problems this could possibly be long term. Once somebody reaches the end of life, and is rapidly deteriorating then it is usually beneficial to have somebody present to reassure/ provide mouth care/ reposition. But this level of input is not usually sustainable for any length of time from a practical perspective. It very much depends on personal circumstances and how unwell she is.
If she is not yet at this point I think I would probably take her lead a little with this. It’s important she feels respected in her own home and has choice in her care, providing she has capacity to make that decision. In order to have put care in that decision will already have been made at some point in the process. As mentioned above she needs a way of contacting somebody if she feels unwell or needs assistance such as a pendant alarm.
All of the above is obviously dependent on whether she needs 24hour supervision to meet her needs and whether she has capacity (insight into her needs).
I hope you find a way to reassure yourselves and that MIL is comfortable

For she have the MECS system installed?
Perhaps it’s time for a discussion about her ability to live alone, does she have a social worker? I think it’s time to have her assessed for independent living as being bed bound and alone is not ideal at all.

I think it is her choice. She is bed bound so its not like she will have a fall. Having carers 4 times a day means someone will be there first thing and last thing I presume.

If I didn't want people staying over and they went against my wishes it would make me very upset.

Unless she's in danger I think you should respect her wishes.

You need to take medical advice. Unless it's absolutely necessary that somebody stays all night then you shouldn't insist because she doesn't want it.

Thanks everyone. Lots to think about, and really useful to have different opinions.

If she's still competant to make decisions about her own health and welfare then let her make them and respect her views. There is so little that she has control over, don't take this away from her too. I can understand that your husband wants to jump in and make everything better for his mum but it won't. It will sour relations with the rest of his family, upset his mum and besides, is this really something he wants to be doing for years?

Presumably she has a phone within reach and can call you if she needs you.

If she is bed bound and can contact help if she needs it then no i would not have someone stay with her if she does want it

It might make you feel better but would it help her if she didn't want it?
It should be about her

What does her social worker say? Presumably she has a care plan in situ.
She may be saying she doesn't as she feels a burden?

Is she likely to need any kind of personal care during the night e.g. to do with urination/medical or comfort needs? If not and she has capacity then she can decide what happens.

If you think she isn't capable of making rational decisions then you could organise a capacity test done by a health professional.

Capacity means that she is able to make her own decisions, it means she can make bad decisions like anyone else but the control of decision making remains with her. I totally understand why you & your husband want someone to stay the night and I understand your concern, but these are your concerns and she clearly doesn't share them.

I'm sure there will be a time where you will sadly have to take over decision making but until then, I'd respectfully suggest you allow her to continue in line with her wishes.

It sounds difficult for all concerned, love to you x

We were in a similar situation with my dgm.
We stayed overnight despite her protests however in reality after a few weeks this became fraught for us and her.
It was decided she needed 24hour care.
All professional agencies involved decided it was in her best interests.

What would the person staying overnight be doing and where would they be?

If she is bedbound then the amount of trouble she can get into is limited. I can appreciate her view that having someone sat by her bedside is intrusive. However someone in the house to get her a drink, ppick stuff up off the floor or change her if she is wet would be useful.

A general discussion about what the person is going to do and where they are spending the night might be helpful. She is not going to get a Marie Curie night sit every night or anywhere near.

Anyone staying the night would be sleeping in a bedroom upstairs. MIL is downstairs. Carers do the vast amount of personal care. It would be literally to make her a cuppa, get her a snack, spend time with her.

Thank you again for all the responses, I am too close to the situation to see things clearly.

I think it might be a good idea to have a chat with her and the carers and ask what help she is likely to need overnight if she agrees to having someone there. She should have a careplan at the house which the carers follow and record what they do. Is she very frail, is she able to move around the bed and change her position by herself, if not then she will need you to help her overnight at least every 4 hours otherwise she will get bedsores. If the carers put an incontinence pad on her for the night this will also need checking and then changing if she uses it. Some carers last visit can be as early as 8pm and then not again until 8am so she will need help getting comfortable and maybe given any medication if she is having any pain. Is she on a hospital mattress and bed that has automatic controls, they are much easier than a normal bed. She may well of had a dependency chart done in hospital which would show what help she needs at at what time which the carers may have in their folder.

If she has mental capacity then you need to respect her decisions as a starting point and work from there.

Sometimes the 4th carer visit of the day will be as early as 8pm, so you could suggest to your mil that a family member could drop in later at 10pm. But let your mil have the final say.

Once again thank you everyone. My dd stayed with MIL last night, she was grumpy for a minute, then dd said if we stay the night we are less worried. MIL seems to have taken this on board. They had breakfast at 7 am, and are planning lunch!

Everything isn't black and white and I don't know how we will move forward. We definitely need more conversations with MIL. And we need to respect her decision after these.

As a family we haven't faced this before, it's a horrible time for everyone. But most of all for MIL.