Dad keeps changing his mind!!

[Ash148]

Sorry, this is a bit complicated. I will try to be as brief as possible:

Mum with advanced dementia in a lovely nursing home (although dilapidated building) with 24/7 one-to-one care. This is deemed necessary by psychiatrist in the hospital from which she was discharged last month because she is in constant motion - and doesn't sleep - but is very unstable).

Nursing home is 40mins drive from dad's house; about equidistant for myself and three siblings (two of whom live close to dad) but in a different county.

Three siblings (including me) very happy with current set-up and can and will fund one-to-one while we pursue State funding - which may or may not be available - or even indefinitely if needed.

One sibling wants mum moved to a hospital with a long stay unit in same county as mum & dad's home. Unit does not provide one-to-one and have said that they would look for family permission for restraint (lap belt) as an alternative. Mum was in this unit for three months last year and we have several concerns, including over medication, unkindness of staff and one occasion when several staff were off campus when we arrived to visit.

The sibling in favour of this option is finding it difficult to articulate her reasons, but it seems to be partly about money (her financial circumstances are different and she could not afford to contribute to the cost of mum's care but there is no need for her to do so, the other siblings can cover it), partly about having mum closer to her (the unit is the same distance as the nursing home from her house, but very close to her business), and partly because she thinks mum might be better off being sedated more and made to sit rather than walking all the time.

THE PROBLEM IS: Dad has (earlier stage) dementia too (MMSE 20ish but he is unaware of the diagnosis). He is still functioning reasonably independently but changes his mind about what he wants for mum depending on whom he has last spoken to. Plus he goes for dinner most days to the sibling who wants mum moved. Whenever any other sibling speaks to him, he easily understands that the move would not be in mum's interests (although he worries that mum does not currently have an en-suite room and about the cost, even though he understands that he doesn't need to). Then, the next day, he has changed his mind again. The poor man is going round in circles.

The sibling in question will not engage in family discussions and has not stuck to any agreements that we have reached. A few weeks ago, we all five sat down and agreed that we would only consider a move if one-to-one care could be provided, but she has since gone back on this; she is also trying to keep dad away from the rest of us, or make sure to see him immediately after he sees any of us.

How do we ensure that mum is not moved by dad under the influence of this sibling (he is next of kin and there is no power of attorney for her)? Is he even competent to make such a decision?

I have thought about having her made a Ward of Court but am concerned that the court might take cost into consideration. Also we don't have much hard evidence to back up our concerns about this unit, and the doctor who oversees it does not seem to think restraint is a bad idea (which I cannot understand but the court may not favour the opinion of other doctors over this one).

Any advice would be appreciated.

 

[Beate]

Oh my God. Restraining someone in their seat is not only unacceptable plus should require a DOLS assessment, it's also incredibly dangerous. People can die if they try to wriggle free and the belt goes over their throat. Restraining plus sedation are in my eyes hugely irresponsible actions done by care home staff that want a quiet life. I have no practical advice but I would fight this with all you've got. Is your Mum self-funding or are Social Services involved?

 

[jaymor]

I have no knowledge of restraint but to me a lap belt should be used to keep someone who cannot walk but is able to lean forward and may be at risk of falling out of a chair not t be used to stop someone from walking about. Surely it is wrong to deprive someone of walking if that is what they want to do. The care home being discussed does not in my opinion offer the best care for your Mum.

She should be encouraged to Remain mobile for as long as possible. My husband was a walker or to be more precise a marcher and had a 1:1 carer. He is now immobile and had to have a special chair which is higher than an armchair and I purchased it on the understanding a lap strap could be used as he could lean forward and it was a distance for him to fall. Whilst he was mobile I would never have consented for him to be restrained and I know the care home would never have done it.

Over medication and restraint are worrying words. I hope you can sort something out as dementia is bad enough without agro.

 

[canary]

The idea of restraint in a dementia ward horrifies me. I know the doctor says its OK, but I would not want my mum to be somewhere that advocates that.

 

[Ash148]

Beate, Jaymor, Canary, it is reassuring to have others confirm my abhorrence of the sedation/restraint options as alternatives for one-to-one support to allow mum to be as actives she feels compelled to be.

The latest twist this evening is that the "dissident" sibling apparently called mum's nursing home this morning to advise them that "the family" wants to move mum. She is refusing to answer calls or emails from any of us! It feels like a cold war movie.

Why is she doing this? We used to be a close - not perfect but looking out for one another - sort of family. She seems oblivious to the distress she is causing, especially to my brother whose father-in-law died last weekend and is therefore also dealing with his wife's grief.

Because we are in Ireland, the legislation and protections are much less satisfactory, but I am going to look for professional advice tomorrow in case we have to go down that route. In the meantime, any "human" advice on how to deal with a completely irrational sibling would be appreciated.

 

[Jessbow]

tell the nursing home that you want a 'best interests' meeting before ANY move takes place. Explain to the home manager why - you and your siblings cannot agree on the sutability of the alternative placement.

In my opinion a 'paid' nursing home will be reluctant to let her go anyway, so will quite happily 'play for time' whilst this is sorted out.

I very much doubt they would take instruction from your sister whilst your father is next of kin.

 

[RedLou]

When you say the better-off siblings are paying for the care -- are your parents also contributing?

 

[susy]

Restraining and sedating make a person who is perfectly capable of mobilising immobile. Immobility vastly increases the risk of chest infection, sores, dvt. Sedation increases confusion. What on earth is she (and this antiquated place) thinking of? Fight this and keep fighting this. I'm quite frankly horrified that in this day and age this is a "plan"

 

[canary]

RedLou makes a valid point.
Am I right in thinking that the sibling that is advocating the move does not contribute to Mums care and will not be contributing if she is moved, but the other siblings will be expected to continue to contribute?
If this is so, then perhaps you could make it explicitly clear to the other home that the money to cover her fees will not be forthcoming if she were moved. I doubt any care home would be willing to take on a resident under those circumstances.

 

[Risa]

Hi Ash148

If this were my family, I would ask the sibling that the "dissident sibling" has the closest relationship with to sit down with her to understand her viewpoint. She sounds very defensive so maybe best to avoid a group meeting with all the siblings as maybe it could be perceived by her that she is being ganging up on?

If the "dissident sibling" has previously been supportive of how your Mum was cared for and doesn't normally create dramas then she could have valid reasons (in her view) for wanting Mum moved. Could she be more concerned about the financial arrangements then she is letting on? You mentioned your Mum doesn't sleep and is always in motion - could this be distressing your sibling or making her question the current treatment plan? Are there any external influences (a partner) that could be influencing her behaviour?

Personally I don't agree with your sibling's idea but family fall-outs can be very painful and long lasting. Your family all sound very invested in caring for your parents so it would be a shame for a disagreement to tear you all apart. I really hope you work something out.

 

[RedLou]

RedLou makes a valid point.
Am I right in thinking that the sibling that is advocating the move does not contribute to Mums care and will not be contributing if she is moved, but the other siblings will be expected to continue to contribute?
If this is so, then perhaps you could make it explicitly clear to the other home that the money to cover her fees will not be forthcoming if she were moved. I doubt any care home would be willing to take on a resident under those circumstances.

Ah - you have another take on it from me! I assumed the long stay ward was free. What I was wondering was whether that sibling is watching 'her' inheritance being eaten up by fees, and because she's materially worse off than the others is eager to protect it. She may feel the others are being cavalier because they don't have money worries. She may have persuaded herself the long stay ward is just as good - she doesn't have to be doing this consciously. But if that might be at the root of it, then perhaps the others can offer to disinherit themselves, as it were - so anything that is left at the end of this awful journey goes to 'poor' sibling? That might help defuse the situation?

 

[canary]

Sorry, RedLou - I thought I was following your train of thought, but looks like I mistook it

 

[Quilty]

I think you need to put your mum and dad first and sort something better out. Does anyone in the family have power of attorney for mum and dad? I think you need to forget what this sister wants as her needs come second to your parents. If yoiu have POA you can make those decisions

Your parents might hope to leave something for their family but its no-ones right. Social services would be on your side given the choices.

My sister has walked away from Mum as her "inheritance" is going on care home fees. My attitude is "tough". Mums care is all that matters to me. I want to know that I can control where Mum lives - in a lovely place with people who clearly love and care for her. All of loved ones deserve this. Not being tied to a chair for any reason.

Bets of luck. You are going to have to be strong and try to get a concensus from the rest of the family. I will be thinking of you.

 

[Ash148]

Thank you to everyone who has given such thoughtful and sound advice above. I haven't posted in a while, because it's been such a roller coaster.

We persuaded Dad that the proposed facility was not in mum's best interests and my sibling backed down a little for a while. As a compromise, we moved mum on 10 June to a nursing home near the village where she and my dad both live, as one of the issues was about having mum closer to home and this sibling. We had a long discussion with the nursing home as to whether they were sure they could meet mum's needs, because it doesn't have dementia facilities but they were adamant that with one to one care there would be no problem.

Now already they are expressing concerns as mum's behaviour is causing problems for them in the public areas. They and sibling are raising option of yet another move for mum - not back to nursing home that was coping well with mum - but yet another one that is local and has a dementia unit but no beds available just now. This nursing home is part of the same group as the one that we are afraid of, but seems to be very good. However, it's likely if they in turncouldn't cope with mum they would transfer her to the "bad" one and we might not be able to prevent this, as dad is next of kin and can be persuaded into things very easily.

Sibling says she wants mum to stay where she is but she and current nursing home care manager are phoning the other place and checking on bed availability.

If mum has to move again, surely it should be to the tried and tested place?

Sibling is visiting mum every day even though we are told that mum gets much more agitated after visits. She is cross that others are visiting only once or twice a week, and doesn't accept that there are other points of view about this or that by moving mum she has made it much harder for two of us to visit as we are much further away and other local sibling has a busy young family. She is open about the fact that her goal is to have mum close to her, so that she can visit.

She says the issue is not money but that "dad cannot get his head around the expense". She hopes the place that she is now looking at can manage without one to one care because it is a specialist dementia unit. It's a bit unclear whether current nursing home's concerns as now being expressed are as a result of daily dialogue between sibling and nursing home manager or whether they may actually independently ask mum to leave.

It seems that there is no peace for mum or her family, and it feels like nothing will make this sibling happy; she may not even know herself what would, as she gets very upset about mum's agitation and doesn't accept that there is no "answer" to this.

I liked the suggestion about getting closest sibling to talk to her, but unfortunately the two of them are at complete loggerheads now and barely speaking to one another. She will speak to me and I have undertaken to support her preferences provided the "bad" facility is ruled out, but she won't go there, and keeps listing scenarios in which she thinks it would be the only option. Somehow, it feels like cost is a key part of the issue but what she says keeps shifting and I don't know if she even knows herself. I think she also needs to be in control and is grieving for the loss of mum.

There is no power of attorney for mum. There is one for dad, unfortunately held jointly by the two siblings who are not speaking.

Since her diagnosis 18 months ago, mum has been in hospital, nursing home A ( from which she escaped), at home for three months, back to nursing home A, which couldn't cope after a few weeks and sent her to the "bad" facility, then Nursing home B (because at the time nursing home A wouldn't take her back) then psychiatric hospital for two months, nursing home B again for 4 months, back to psychiatric hospital for three months, nursing home C for less than two months, now nursing home A again.

 

[Essie]

Oh Ash, what a mess, your poor Mum. It is so difficult when someone is so blinkered that they can only see their point of view on a situation rather than the bigger picture, which is of course that your poor Mum, after to-ing and fro-ing between homes and hospital was finally settled and is now on the ‘move merry go round’ again.

It does sound as though this sibling’s actions are created in part through issues with costs of care which, as others have said, really has to take a back seat as far as possible and quality and appropriateness of care must be uppermost in any decisions. This sibling also sounds as though they are a bit ‘highly strung’? And this anxiety seems to be being passed on to Mum now this sibling is visiting so frequently which isn’t good especially if Mum isn’t as settled as she was in the previous care home. As I’ve said, what a mess!

It’s good of you to try and support your sibling but I would be concerned that she keeps referring to the home you don’t want Mum to end up in – it does sound like she is seeing that as a distinct possibility in the end. Personally I would say ‘enough is enough’ – you have tried it her way and it isn’t working, Mum is distressed, she isn’t seeing the rest of you as much as she was, the home are saying her stay there is finite anyway, I would say get her back into the home where she was happy, before there are further moves and Mum is further distressed and disorientated which certainly won’t help her condition at all. After all, Mum being as happy as possible is the only thing that really matters isn’t it? If it’s a journey for dissident sibling to visit then so be it – I’m sure Mum put in lots of effort when you were all growing up and if it costs more, well from what I remember dissident sibling isn’t contributing to that anyway so how is that a factor?

I think you’ve done your best Ash, and really bent over backwards to accommodate this sibling but Mum must come first – otherwise how do you decide whose wishes outweigh whose – do you get first choice, dissident sibling, your Dad, other siblings? Put Mum at the top of the list and what she needs as the only criteria and it makes things much easier to clarify to your sibling – Mum comes first.

Good luck.

 

[Ash148]

Essie

It seems so clear when you articulate it that way.

I doubt the discussions will be clear cut but the objective is clear: What's in mums best interests.

We have a family meeting tomorrow, will update after that.

Thanks

 

[Ash148]

Just realised that I should have explained that the place that talked about restraint as a solution is virtually free: Just a nominal contribution would be required. So if mum were moved there by dad and our sibling it wouldn't need any financial input from us.

three siblings want to cover one to one care cost but dad wants to be independent so we've explained to him that we will effectively be paid back by our share of the inheritance from mum and dad.