Elderly mother - please talk me down!

[noneshallsleep2]

DM has a nasty lesion on her leg, which her doctor wants looking at by a specialist. She was supposed to go to the hospital last week but the friend who was supposed to take her couldn’t get her in the car. She hasn’t been out of the house in years and is terrified of falling.

The issue is worse because she is delusional, and claims she went to the hospital (and made me call the friend and the hospital, both of whom confirmed she hadn’t been).

I live 5 hours away - I came down and back in 2 days last week and she agreed (eventually!) that if I went with her she would go to the appointment that had been re-arranged for tomorrow.

I’m now at her house again and she has, in 4 days, become incredibly breathless and almost incapable of walking.

I’ve arranged patient transport for her for the morning, but I suspect she will say she is too ill to go.

I’ve been trying for months to get her to ask for a social services assessment, but she refuses and says she copes fine on her own (and last week she certainly seemed to be). I feel like she’s trying to “play” me - she went through a similar breathless / incapacity thing with the friend last week but was absolutely fine 3 hours later.

I think this is all driven by fear of leaving the house. All I can think is that if she refuses to go to hospital tomorrow I insist on getting the duty doctor out and a social services assessment.

But I do know that I’m very tired and stressed, and I’m conscious that I’m not being as compassionate as I might be.

Anybody wise out there with a bit of perspective?

Aw none this sounds awful. Sounds to me that you are doing all you can.... she is obviously frightened. Send8ng 🌺🌺🌺. Try and stay calm, do what you can, and that is good enough.
Do you have power of attourney in place? If she is becoming delusional that sounds worth doing if not too late.
Good luck.

Has the patient transport arrived, did she go?
Does her GP know of her fear of venturing out?
It sounds to me like you have been patient and helpful but I suspect the more understanding you are, the more she knows she can back out of an arrangement at the very last minute.
Could you contact Age Concern to see if they can advise you?

She hasn't been out of the house in years? Does she have agoraphobia? Does her doctor visit her at home then? Do friends visit? Do you have siblings who are closer than 5 hours away? I'm not surprised you're worried. Have you talked to her doctor? I would definitely want to get here a SS assessment and yes, I would call Age Concern. My friend (who is a qualified OT), goes and visits elderly people in their homes each week, helps them with cleaning and personal care, checks they're taking their meds, sometimes takes them to doctor's appts or to pick up meds from the pharmacy. Usually they are people who either don't have family, or their DC live far away and can't visit regularly.

Thanks for your kind replies. No, we didn’t go. She had a full blown panic attack this morning - couldn’t breathe, asking for oxygen, couldn’t talk. I had to call an ambulance but it turns out physically she was fine. The doctor is coming to see her this lunchtime.

She’s now downstairs happily making herself some breakfast.

I don’t underestimate how big a physical impact anxiety can have. I’m hoping if we can treat it as that we can find a way forward.

How old is she and how's her health generally?

I'm thinking if she's over 80 then maybe a specialist might look at the lesion at home?

Is she scared she'll be kept in hospital for something?

I am convinced that a lot of the behavioural changes seen in old people is down to fear. They are frightened of what will happen next so will either agressively blame others for problems, make up a new narrative, or lash out like wounded animals, or simply melt down in panic. The trick seemed to be not to put them on the spot, but recognise the limitatons and try to work round them.

The approach I discovered was to rent something near by (out of season holiday chalet or AirBnB) come down for the major hospital appointment, so I could be there and then do as many other chores at the same time, often then taking paperwork back with me.

As best you can try to act as her advocate, rather than the relative. So sort out the medical and other stuff whilst keeping your distance from the emotional stuff. The aim is to get beyond her short term concerns to a place where she can relax and be happy.

1. Sort out POAs. Vital!
2. Apply for Attendence Allowance.
3. Consider sheltered or very sheltered housing. As people like a GP what setting might be most suitable for her. My mum has been in very sheltered housing fior five years and even though I had to drag her there kicking and screaming it changed her life and she is very happy. 4. Get a SS assessment done. Useful for when she is being discharged from hospital.
4. Speak to some care agencies who you might all on in an emergency. Plus key holder, emergency cash etc.)

Need, those things can only happen if OP mum agrees.

OP for the record my mum is 79 and discharged herself from hospital after feeling she'd been kept too long for a heart issue. A friend's mum is in her 80s and blatantly refused to be admitted to hospital for pneumonia.

A few incidents over the years have made me realise that one day I might be that person. I think a lesion is a bit different because I'd be more scared of it becoming horrendously icky but generally if I could avoid a hospital stay, I would.

If you can get to the bottom of the fear and promise, for example, you won't "make" her stay in hospital if she doesn't want to, that might help?

Womaningreen,

"Need, those things can only happen if OP mum agrees."

Yes obviously. However I was trying to be helpful. I was probably particularly naive but knew next to nothing about provision for the elderly when probblems with my mother kicked off. It would be very easy for OP to spend a lot of time trying to ease her mother's anxiety, but not get very far. My suggestion is that if you can get the fundementals sorted (with her mother's agreement) the presenting problems might ease. Or indeed without things like a POA problems could get far far worse.

But happy to leave discussion to those more expert.

Need as usual offers some brilliant advice and good suggestions which could be researched and then worked on with dm.
I have learnt too the hard way that elderlies have to agree but having done the spadework and research is really helpful- identifying the right possible care home for respite, getting hold of the right forms etc for attendance allowance, researching contact details for the right agencies- and being able to do this in a planned way rather than when the crisis really hits- always out of hours. And on a personal note I find having done some prep helps my stress level and ability to cope.

I totally agree with the PP that sorting out a few practical things is key. It is simpler than the emotional rollercoaster you may be on, getting something like Attendance Allowance sorted will get your mum in the system at least, you will feel a sense of achievement, and it's one way of dealing with the overwhelming worry/guilt that can arise. There are lots of good helplines out there, Age UK are good on practical advice, for instance, and will make good suggestions.

I understand that prep is good but I thought op was seeking help with the immediate aspects

That's why I'm thinking what might be at the heart of the anxiety her mum has,

OP I hope it went all right this afternoon.

"I thought op was seeking help with the immediate aspects"

Yes but I was then suggesting that some of this anxiety might be comiing from fear, uncertainty and a feeling of not coping. Especially as it seems to come on when there is a sympathetic audience. I have no idea whether I am right but one approach then is to take a step back from the immediate issue, and focus instead on what is needed to ensure that the elderly person can be looked after efficiently and effectively. It certainly worked for my mum who, five years down the line, is genuinely happy sheltered housing, with no bills or anything to worry about. Her stress levels when she was clinging onto independence, and worried about what might happen to her, must have been through the roof. Her behaviour, particularly to me, was awful, especially in front of other people where used the audience to play the victim.

Yes persuading someone to sign things like the POA, or accepting help, a move or a SS assessment, is not easy. However knowing what needs to be done helps. Then you can slowly pursuade, or seize the moment if the crisis comes.

Part of what you can do is prepare for the next step. It does sound as if your mum is not at all realistic about her situation, and probably feeling very scared too. Things can change really fast, but if there's a crisis at any point it's much better if S services have seen her recently and have a full understanding of her needs, so if for example she had a fall she might go to hospital. By the sound of it, your DM would be desperate to leave ASAP, and might well not give an accurate picture of how she's coping at home. It's much easier for the discharge team if they have an accurate and recent picture of her needs, then the hospital social worker would be involved and your mum's safety would be the priority
And it can't hurt for you to have a think about carers, or sheltered accommodation, even if your mum isn't looking ahead, you will be informed about her choices.
There's a really practical feature about all this in the current Good Housekeeping.

Thanks again for the replies.

I was posting last night to try to get perspective - I was in danger of reacting badly to the stress of the situation.

I know that there are long term issues that need to be sorted, and the advice on that has been helpful. Thanks

None it’s so easy to feel like screaming in those situations. My mum always has a reason why whatever I suggest won’t work, she also tries to delegate things to me that ahe is absolutely capable of but now thinks are ‘too difficult’. The truth of the matter is, she’s old, she’s lost confidence in herself and and sticks to what she knows even if it isn’t the best path. It’s really hard when you’re trying to get them help and they’re refusing.
When it comes to the social services assessment, you could try asking her what she would do if it were you - would she leave you with no help when you’re struggling or would she want you to get the help you need? Sometimes looking at things from a different perspective can be a good way to get them on board with changes. Best of luck!!

I would add that it is normally not possible to put right the consequences of decisions and behaviours parents have made in the past. So if a parent has not been social, it is very unlikely they are suddenly going to want to go to the University of the Third Age etc. As their world closes in they may seek more support from family, but you can only give what is realistic to give. There need to be other approaches, like moving to sheltered housing or something less isolated. Or accepting visitors/volunteers or carers. Or accepting that loneliness etc is a consequence of earlier actions and not something OP or others can put right.

What my own mother wanted initially was unrealistic. She basically wanted a time capsule to take her back 50 years. I get that. But things had changed. She was struggling on her own. For me it was a bit easier as DM was never particularly maternal and never interested in the GC, so was not looking for my company to alleviate her loneliness. (And perhaps why she enjoys the community aspect of sheltered housing.) However the truth remained that it was essentially a two way bargaining. I can only help you if you meet me half way. It is not just about what you want, but also about what I need.

Obviously easier said than done. But my advice remains which is to take a step back and rather than exhausting yourself trying to sustain the unsustainable, try to take a view on needs to be done so that you can support her without giving too much of yourself. And so you have something left if it proves to be a long haul.

And sorry about being snitty upthread. MN seems to have got a lot harsher recently. Especially whilst supporting our parents, there is no right and wrong. We are all feeling our way. The point of sharing experiences is to allow others to consider alternative approaches, and adopt or disregard as they choose. If only it were as easy as going NC or LTB. Becoming a parent was one thing, parenting my parents was the point at which I felt I had finally become an adult.

To thank you for the posts on this thread, especially Sandwich and NeedSleep. Its wonderful when other people can put into words what you are experiencing.

I think you need to explain what's going on to her gp and ask for the nurse to visit and casdess her

Thanks green dot🌺.and good luck none- you are not alone.

Needsleep, spot on advice. Going through similar with my Mum.

Dot and Queen thank you.

Another piece of my hard earned wisdom, again not right or wrong, just something I found helpful when in the thick of it. (And honestly at one stage almost six years ago I thought I was going under.)

If you can take a step back it really helps to have an idea of where you want to end up. Not necessarily a fixed point, as things change constantly, but a range of preferred options. I ended up asking everyone I spoke to, even the British Gas engineer (he spoke very positively about the sheltered housing my mum is in, as he also found the staff supportive and the residents happy). Estate Agents know where people move to, priests visit, etc. The trick with NHS and similar, where staff cant make recommendations, is to ask for suggestions of places/settings that might be suitable that you could look at. Expect them to include their faves in the list.

Once you have a sense of direction you can introduce it at the right moment/mood, and be ready to move quickly in a crisis. For example short term convalescence in a care home you are interested in.

I ended up writing options down in an email to my sibling as I did not want him to disagree. He did not reply, but I found the process of thinking it through useful.

Inevitably it will be slow, two steps forward and one back. But a sense of direction; the tools (POA etc); and an understanding that you cannot solve many of the problems associated with aging; and an understanding that your own needs and boundaries are important, will help you help your parent.

And good enough is good enough. There are no right answers, you can only make decisions on the basis of what you know now, and things change.

Doing the longterm things like POA and wills are a very good idea.

Next step is to think about what does your mum want to achieve and what is realistic.

It does sound like she does cope at home and her priority would be staying at home. It also sounds like she has some sort of mental health problem that stops her leaving the house that is probably very longstanding and has got worse over time.

This is where you and her GP working together on a realistic assessment comes in - ideally she should see the specialist in hospital. But what is the specialist going to do, is your mum mentally able to cope with this, would it involve stays in hospital that she would find intensely distressing? Would she be better being at home and being supported at home while the leg deteriorates but being happy. Is there a role for a psychiatric assessment here to see if they can give her support to improve things so she can get the treatment she needs for her leg.

Just book patient transport to get her to the appointment is not going to work, the GP needs to think about your mum as a whole person and this has thrown up a whole lot of other issues about how she is and lives her life.