Parents refusing to accept help

[windowdrawing]

Hi, I wonder if anyone can advise about our situation. My mum and dad live independently and are happy doing so. My dad has Alzheimer's and my mum cares for him. I can see it's a lot for her but they are both adamant they won't accept anyone else coming to the house to help - they have someone who comes once a week for shopping etc, although my mum can go to the nearby shop fine, and my dad has a psychiatric nurse who visits him at home and they can also pop in to her with any queries they have. One of my brothers visits every week or 2 weeks to see how they are, put bins out etc (his is 3 hours away by bus), and my other brother visits as much as possible - he is 4 hours drive away. My dad is more confused and my mum is spending a lot of time searching for things for him. He is struggling to shave but goes to the barbers in town. His Psych nurse says they are fine with washing, cooking, taking meds etc and she has also spoken to them about accepting help and they absolutely won't. She has offered a weekly group for him but isn't sure he'll go. It is a worry but one of the most upsetting things is that some of our relatives can't seem to accept that we can't force them to accept anything and we wouldn't want to. These relatives phone us and say things like that everyone in the town is judging us because we are not doing more, and that the only care they have is the once a week home help (ignoring my brothers' and the psychiatric nurse's input). My dad still goes out for short walks around the town, generally with mum, but sometimes on his own, and he may get a bit muddled at times and does sometimes look more unkempt than he did due to the shaving, which may be why our relatives think people are judging. Apart from explaining all this again to them we don't know what to do. I live a distance away and have an autistic child, so visiting is hard but we go when we can. Also does anyone have any experience of helping their parents accept more help - I feel a daily visit from someone who could help them sort out mail, and any appointments would be good as well as maybe someone who could take my dad out to give my mum a break. Thanks

I share your frustration too (similar situation with DM) and don't have anything helpful to suggest.

PS The only time my mother 'agreed' to accept help was one with hospital would not discharge her unless she agreed to home help for a limited period following discharge

Thanks Aridane - so hard isn't it? They are both very healthy it seems so it never gets to hospital care

All I have managed to do is find a local agency that provides flexible 'carers' that will do a whole range of stuff as required so that as and when my mother is willing to accept help, I know where to turn.

Ah thanks - I have found the same!

When both of mine were at home, one with Alzheimer's, one with dementia the Alzheimer's group locally sent someone for two hours a week. As time went on the visits increased.
I bet these relatives are voicing their own insular opinions and that 'people' aren't judging at all... next time suggest they visit your dad and go out with him rather than phoning you.

To be honest my experience is that society is increasingly kinder and tolerant of older people with dementia as more people know about it and have family members affected.

While things are still calm there are a few things to put on your radar literally... things like a GPS tracker device for when your dad goes out on his own, considering where to put a key safe if you do eventually need carers to intervene, hurrying power of attorney along if they haven't already done so, and maybe sending an occasional online food shop with 'goodies' rather than 'necessities' to introduce them to the concept and let them warm to the idea...
I think the route at this stage is certainly to be guiding and supportive rather than 'imposing' and 'alarming'. Deep down they may be quite frightened.

Thanks Fortysix - some lovely ideas there. Definitely need to be supportive rather than imposing as said relatives have tried being forceful and of course it's made them dig their heels in and refuse any help and assume relative is bossy and trying to take over. I am also assuming people will be mostly kind and tolerant and I'm sure not everyone is judgy - and if they are - tough - we have to do what's best for mum and dad. Will have a think about those ideas and see if we can put some into practise. They wouldn't cope with anything technical - how easy is GPS tracker?

I think the GPS trackers are literally like a SIM card in a watch or a pendant or at worst on your dad's phone if takes it with him and keeps it turned on. Some dogs in our local park have them so I think they are relatively inexpensive (circa £50) for the peace of mind.

If you can keep a handle on your parents' paper work that would be good too. Helping them get the best deal for their utilities is one way of getting involved without being over bearing. When things did go belly up with mine at least we had all their bills going in and out on direct debit/standing order. Then when the time comes to ask if you can help the with their banking it's not such a giant out the blue leap.

Is there anyone else you could ask to speak to them and encourage them to get help? I went through this last year. DM didn't want anyone else coming in to the house to help with DF and it was causing a lot of stress for everyone. I asked my cousin to advise her to get help and she listened to them. It made such a difference having that outside help.

Thanks Fortysix and JaneJeffer - my brother has the paperwork kind of under control - will check on best deal for utilities to see if he's done that - and standing orders - i suggested that a while ago but not sure if he's done it will check - good idea. I will also have a think about someone else speaking to them re help - maybe an old friend. Thanks everyone

I have enough guilt about not helping my parent more without having real people criticise - you have my full sympathy.

Would they accept help if it were advised by an "authority figure" eg a trusted GP? I think it's hard to accept advice from your children who you brought up and taught - it can be difficult to accept they may have a better understanding of the situation than you.

Loss of autonomy and loss of capacity are difficult things to come to terms with. Your parents may be better off psychologically (which knocks on to physically) being a bit unkempt/disorganised but managing by themselves, than by having a tidier house but having to put up with people doing things in a way which is not their way. So in a way I think your first problem is to deal with all these relatives, by cutting off contact if you have to.

Thanks Mere - it is piling on the guilt without achieving anything. I can only think that they think if they keep saying the same things about people judging us we will then make them accept something, however we are already trying our hardest - the relatives aren't listening to that though. In terms of advice from an 'authority figure' we are lucky in that my dad's psych nurse is very good and is in touch with us now and she has had some very frank conversations with them and they are adamant to her too, so she is not sure what she can put in place for them at the moment. She also knows they are managing though a bit muddled. Not sure about GP - how does it work with confidentiality? Would the GP even speak to us about them? - The house is always spotless when we go and we wouldn't make an issue anyway if they were ok with it. However other people are very bothered by appearances like the fact that my dad looks more unkempt due to the shaving etc. We feel though that as long as he is happy with the situation, fine. I think they are scared especially with the pushing from the relatives and we feel for them so much. I'd be exactly the same and keep my independence as long as possible - don't know why relatives can't understand this. I had another go at explaining things to two people yesterday again, and it's as if I haven't spoken as they answer by saying they need someone coming on every day to check on them. When I replied that we would love this too and that we're working on this but we can't force it there is no reply - til next time when I'm sure they will repeat the same message. Hard to cut off contact though I think as they are people who visit and do provide help, despite also causing stress. Good point about the importance of being better off psychologically though,

Is your dad still driving?

No he stopped driving a while ago

You GP won't speak to you about them without their authority. But if you write him a letter saying who your are and your relationship and expressing your concerns and what you would like him to do, he will read it. Whether he acts on it is then up to him.

If the psych nurse says they are managing, then is that something you could pass on to the nagging relatives?

I think your attitude is the right one and very understanding, so really your problem isn't getting someone in to check on them every day (it doesn't sound as if they need it, and they certainly don't want it), your problem is to protect yourself from remarks by people who appear to have little understanding of what it's like to get old.

Thanks Mere - it's making me feel like I don't know which way is up any more - Today I actually passed on the Psych nurse's actual words - that they don't need round the clock care and are managing cooking, cleaning, washing etc. Also that she has had discussions with them about accepting more care and they are adamant about not accepting anything. To which relative replied she agrees about not needing round the clock care (though she also thinks we should be putting them in a home), but that someone needs to be popping in every day. I mean she's just not listening.

Someone on another thread has just said extreme old age is a foreign country where the control to make things worse is better than lack of control. Your DPs aren't in extreme old age, but the same principle applies.

That's a good quote

Is the area your parents live in covered by Admiral nurses? We contacted them and Age Concern for advice about getting (and accepting) help for relative.

@windowdrawing
@MereDintofPandiculation is spot on.
Your 'relatives' are free to pop in daily if they wish ! But you have- no reason nor lawful power to override their wishes. They have professional support who would certainly advise you if more was required. CPNs aren't slow in saying if they felt situation was too risky!

No one becomes at risk of life & limb due to a bit of 'unkempt not quite shaving as neatly as they used to', but can certainly distress and disorientate someone by forcing care on them that they don't require nor want. The Mental Capacity Act principles is very clear on 'least restrictive interventions' where someone lacks capacity to decide themselves. And your mum lives with dad and is the first (& key!) person CPN would consult.

As a PP said
Loss of autonomy and loss of capacity are difficult things to come to terms with. Your parents may be better off psychologically (which knocks on to physically) being a bit unkempt/ disorganised but managing by themselves, than by having a tidier house but having to put up with people doing things in a way which is not their way.

You sound a very understanding and caring daughter. By keeping in touch with CPN, and working with him/ her and your parents, you are doing right by them.

Thanks Cosyjimjamsforautumn and Whereismumhiding2 - I will check out the Admiral nurses - and thanks for the support - gives me strength to carry on doing what we think is right and resist attempts to shame us into forcing things we know aren't right. Thanks everybody so much for taking the time to help