What should a carer do?

[Seansdad]

Hey @Tot thanks for the message. I was going to post tonight anyway!

As planned I told my wife about my decision last Saturday with a nurse present.

I have been told that although the events of last Friday wasn’t good for anyone, the medical staff breathed a sigh of relief at my decision and that the events had taken place whilst my wife was under their care rather than at home. I really don’t know how I would have managed if my wife had been at home at the time.

We have now moved into a process which isn’t pleasant. I’m looking at care homes which is pretty stressful. Having some homes tell you they can’t take your loved one because she is too young may be true but is not pleasant to hear.

Meantime the doctors have determined that my wife does not have capacity to make a decision about her future care. I’m no expert here but I can se how they could come to that view after five weeks of caring from my wife 24/7. As they explained it she is really intelligent and sometimes she can use this to mask how much she is struggling. I can totally recognise this in her.

There is of course also a social worker involved. She has a rather unfortunate way of communcating which can be best summed up as “talk first, engage brain later”. she has already upset me in our first conversation by mentioning that we own our home jointly and then changing the subject. when I asked about the relevance of our joint ownership, she said that my wife had as much right to live int eh house as me. I said that is true I also had the right not to be there, she said that in that event, the matter would proceed down a legal route. All of this may be true but to say this a mere 48 hours after coming to the most difficult decision in my life was, in my view, tactless at best.

Having spoken to hospital staff today, they have formed a view that the social worker might not agree with the doctors view of my wife’s capacity and that if she did hold that view, the question would then be determined by mediation at the Court of Protection. This all seems nonsensical to me. If my wife returned home, they would need to put in-place 24/7 care at home and the social worker has already said they can’t do this. Moreover, this is not at all helping my feelings of guilt about the whole situation and it is taking some effort to remind myself of the reasons (borne out of love for my wife) why I (and the hospital staff) think that residential care is required. I find myself being exhausted every evening I think just from the mental strain of all of this.

The social worker is coming back in next Tuesday to continue her assessment although a couple of visits hardly compares to the five weeks of experience the medical staff have or the two years of experience me and my sons have living with my wife’s condition.

If the Court of Protection did determine that she had the capacity to return home then where does that leave us? I think she needs social and nursing care available 24/7. The medical staff who I have looked after her these past five weeks agree. I know that they have administered medication some nights to help with sleeping which I couldn’t do, for example. I can’t provide the help she needs, or not without excessive strain on myself. Potentially this could be seen as pitting me against her and it is not about this at all. I just want the best for both of us,

[TheLippyOne]

Hi Seansdad,

AFAIK before it would even get to Court, you could first challenge the outcome of the care assessment made by adult social care (if you didnt agree with it). My advice is to have a look online at the format the assessment takes, in terms of what is taken into account. You’d then have a bit of knowledge when the social worker speaks to you and can lay out the issues you know they will be looking at. Try to use their language and terms you’ll see in the policies.

I would say that a lot of social workers doing the job are completely desensitised. I think it’s a good thing that your wife is in hospital than if anything was happening at home. To call a spade a spade, management will want the bed freed up. Unfortunately that’s the way it is.

Wishing you continued strength at this stressful time xxx

[Seansdad]

Thanks @TheLippyOne I’ve already acknowledged that the hospital will want the bed - the consultant is pretty good and is I think genuine when he says that whereas there is that pressure, they won’t discharge my wife until they are happy with the care she will receive on discharge. I know not all will have this comfort - we are really lucky to live where we do and to have this health facility so close.

Good advice re next steps - more reading to do over the weekend……

I’ve said before that I’ve had to find new sources of resilience to cope with what PD/LBD has thrown at me - time to go back to the well!

[TheLippyOne]

The consultant is absolutely right and hopefully something suitable for your wife can be found ASAP

[Tot]

Hello Seansdad
You must feel like you don’t know if you are on your head or your heels at the moment. Having made the big decision, you are now facing the difficult task of finding a placement that will meet your wife’s needs and that you will be happy with too.
From reading your post I think it is very important that you know and understand where both you and your wife stand both legally and financially - leaving aside for the moment all the emotions that go with it. Age UK, Citizens Advice and the Parkinson’s uk helpline, should all have information on all aspects of moving your wife into residential care. I say this because it doesn’t sound as if the social worker will be very forthcoming with explanations. You should also be able to find information on your local adult care service on what the assessment they do is for, what it entails and crucially, about the financial assessment.

The social worker may well decide to challenge the view by doctors that your wife no longer has capacity to make decisions for herself. From what you say I suspect she sees her role as doing what’s best for your wife as she is the client - which is exactly right. However most would not see your wife’s needs in isolation and look at her needs and legal rights etc alongside those of yourself and anyone else affected by the decision for residential care. The fact is the social worker has come into the situation late on and has not yet seen your wife when in the grip of anger etc. I also suspect that your wife may well have presented with an oscar winning performance on meeting the social worker, seeing her as someone she can convince everyone is against her etc. It is not unusual, experienced workers will recognise this but it can make if difficult to get the evidence needed to support decisions.

With regard to challenging the decision that your wife lacks capacity, I think the social worker may have an uphill battle on her hands. Being considered as lacking capacity is not easily achieved. It takes two doctors to agree and they need to be as sure as they can be that in this case your wife, is no longer capable of making decisions about her care, treatments etc and is therefore putting herself at potential risk - which is different to her making what is perceived by others to be bad or wrong decisions but which she is perfectly entitled to do. You may not agree with her decision but that doesn’t mean she cannot make it, if she is still considered to have capacity. There is however a lot of evidence that I think, would make a strong case supporting the lack of capacity view; it would be hard to imagine how the social worker can build an equally strong case.

Try not to take the comments from the care homes you visit too personally. She may be considered too young for some, others will not offer a place because they would not be able to manage her anger when it erupts, etc, There are all sorts of reasons why a particular care home won’t be able to take someone and it is better they are honest if your wife is to end up with a placement that can manage her needs, where she stands the best chance of settling and feel secure etc, that is the important thing.

You also need to think about you and how you see your own future. I suspect at the moment you have given this little thought seeing your wife as the important one but you do have to consider what is acceptable to you. Do you want your wife to be near enough that you can visit every day, indeed do you want to visit every day? You may think that a ridiculous thing to even ask, of course you want to see your wife every day - but that means some part of every day is given over to your wife. When do you get a full day for you, a full day to recharge your batteries and relax - and that is possible if you know your wife is being looked after. Maybe call in each day but if she is angry don’t stay and leave it to the care staff or do you stay all morning irregardless because that’s what you said you would do and guilt won’t let you do otherwise. What if there is not an appropriate care home as close as you would like, how far would you be prepared to travel. It’s not that you need to answer these sorts of questions now, nor indeed that they can’t be changed later rather it’s a case of not assuming once a placement has been found everything will fall neatly into place. It’s rarely that cut and dried and not only are you entitled to a life I think it is essential that you sometimes at least put yourself first for the sake of your mental health and being able to stay strong for your wife as I am sure you want to do. This is not being selfish, it is being realistic and the emotional impact can make such thinking almost impossible. In a way Seansdad, you need to do again exactly what you have already done when making the decisions you have ie go with your head not your heart as much as you can. It is not easy. It is exhausting and sometimes, even if only once in a blue moon you will want to stop the world and get off. Just give a bit of thought to such things is all I am saying.

It sounds like your wife has an excellent medical team who fully support you. It is right they probably need the bed, but they also have to plan for a safe discharge, which will involve the social worker. It you are at all unhappy with anything that is being proposed you must speak up.

Finally, I don’t know if anyone has mentioned this but your wife has been in hospital for a while and has probably become a bit institutionalised as many do. It is almost inevitable that it happens and it is as well to be aware of this as the transition to a care home may be affected by it either positively or negatively, so ingrained does the routine become.

Yet again I gave gone on at length but I hope some of it helps if only to make you stop and consider things from a different angle or gives you a bit of background so that you maybe understand a little better.

Look after yourself
Tot

[Seansdad]

I’ve been reading up on the Mental Capacity Act (how did you spend the Bank holiday weekend ), and I have also spoken to the doctors who made the capacity assessment on my wife. Fortunately, it turns out that he is specialist in the area and both writes and lectures on it so he is confident that his opinion is correct and it is also extensively documented. He says that he will have a word with the social worker…

Meantime I have told my youngest son what has happened with his Mum over the past ten days (he had been away and I didn’t want to worry him). We had a long talk and he said that although he obviously wished that none of this had happened, he was relieved. He said that he had been home at Christmas from university and found that a very difficult time. He could see how my wife’s condition was affecting both of us and he could see how I was struggling. He said that he hadn’t come home at Easter for that reason - he wanted me to swallow my pride, accept that I couldn’t do this 24/7 and look for help for his Mum. He was pleased that I had now done this.

Looking back, I think that the increased needs on me just sort of crept up on me, a little at a time. I probably needed someone to give me a shake and, when I couldn’t see the wood for the trees, tell me how big the forest was! effectively, this has what has happened over the last five weeks or so.

I continue to see my wife daily. She continues to be in some sort of denial about the severity of her condition and seems to believe that what we need is some form of relationship counselling rather than long-term care for her needs. Her recollection of the events of ten days ago (which led me to come to the decision that I could no longer look after her 24/7) is sketchy at best and this will make the next stage, to long term care, difficult and painful but I don’t see another option. Theoretically, I suppose she could get 24/7 care at home, with me moving elsewhere but funding is an issue of course unless we were able to get NHS Continual HealthCare, which is another avenue for me to explore.

[Tot]

Hello Seansdad, you are absolutely right. The increasing demands of the caring role do often creep up barely noticed until one day you realise it is all consuming and you have no life except for that of the person you are caring for and their quality of life is by then poor at best and so by default is yours.

I have been mulling over what I can write because on the one hand there are a 1,001 things I could say you should be mindful of and on the other what is there left to say? It may be stating the obvious but not necessarily something to which you give much conscious thought ie your number one priority is to get your wife the best possible care; however you cannot do this in isolation. Decisions you make for your wife will impact on you, your sons and the ripples caused by your dropping that stone in the pond can travel much further than you think and you need to think in broad terms as well as the detail that affects your wife directly.

I have written on the forum there are no winners with Parkinsons and that is the truth of it; but don’t beat yourself up at every turn when you are doing the best you can because that’s all you can do. Also although it may feel like the whole weight of any decisions is entirely on your shoulders it doesn’t have to be like that - share the load with your sons (or whoever), it can make them feel a part of what is happening rather than an onlooker and that their voices will be heard.

Finally, take some time out and do something nice for you, it doesn’t have to be for long but it is important. There’s nothing that won’t wait an hour or two.
Tot

[Seansdad]

Thanks @Tot - my boys and my dog are keeping me focused and deep down I know that what I am doing is best for all of us. I know that, for my boys, it is important that one parent is able to help them as they move through life. They are both in their twenties and are pretty mature, but they still have a lot of life ahead of them and they need to be able to rely on someone. They have each other and they are close but sometimes they will need to refer back to an old’un! I know that I did this pretty regularly with my Mum even when I was in my fifties and she was in her 80s!

There were also many times, particularly when I was a young father, that I longed to be able to discuss parental responsibilities with my Dad, but he had long since passed away by then.

What’s more, I know that if my wife was able to think clearly about it, she would agree. We made sacrifices during our marriage to make sure that our children got what they needed, as many couples do. All of that would count for nothing if we both became victims to PD/LBD.

As for me, well my daily walks with my dog are all I need at the moment. The poor dog had gone months without a long walk and proper exercise because I couldn’t leave my wife for more than 30 minutes. Seeing her excitement when I get her lead and ball out of the cupboard is enjoyment enough!

[Tot]

I know it’s not much and makes no difference but for what it’s worth, I think you are doing great and you have my utmost respect for your honesty in what you are facing and in your decision making and reasoning. Keep walking the dog - very important member of the family are pets lol
Tot

[Tot]

Hello Seansdad, how are you getting on? You are probably beginning to realise that in many ways the decision you so agonised over about your wife’s future care and that residential care was the best option for her, you and your sons, was the easy bit. I hope you have been lucky and that maybe a suitable place has already been found. I wouldn’t be at alll surprised however to find this isn’t the case for one reason or another. If a place has been found that’s great and I hope the move goes/went well. However if it is the case that you are still looking, try not to lose heart, something will turn up but it does often take longer than you expect. It sounds so simple when everyone agrees that residential care is the best option, but finding that placement can be a complex business. Hang on in there as they say.
Best wishes
Tot

[Seansdad]

Hi @Tot

It’s been a while. I’m still here and my wife is still in the hospice. She has been there 12 weeks now. Obviously a long story but the edited highlights are:

We’re now on our third social worker as the previous two were useless (including emailing me at 6pm one night to tell me she was going on holiday for two weeks but not providing any contact details for whoever was going to take over my wife’s case - turns out it was no-one!). Four page complaint letter from me swiftly followed.

My wife has been assessed as lacking capacity but it is pretty borderline apparently. hospice taking lots of a legal advice to make sure that the process they are adopting is watertight and transparent.

Wife continues to be very “up and down”. Good one day and difficult the next. More accusations have been coming my way, affairs, abuse etc. I still find this difficult.

hospice staff have been superb and very supportive. They all believe a care home is the best place for her. Nursing bed recommended but two care homes have assessed and both have said a dementia bed is required and they do not have those. Hospice staff and I believe that my wife needs more interaction than is often provided in a dementia unit so we are pushing for that. there are now two care homes in the frame to take my wife and the move might happen next week. I’ve visited over a dozen care homes and contacted/Discounted many others in the ten mile radius of our home. Before she is transferred, the lawyers have advised that we need to have a “best interest” meeting given that my wife doesn’t want to go to a care home and has told us where we can stick it! the meeting might be tomorrow if they can track down the current social worker who, it seems, has “variable” working hours (a polite way of saying she appears to work when she can be bothered).

All of these complications have lengthened the process but it seems that not manny of the hospice staff have been through this process before which makes me realise how complex this must be and supports the decision that I have made. In addition the fact that two care homes who have assessed believe that a dementia bed is required also supports the view that I would struggle to care for her myself. Obviously I am still working through all the guilt……

[Tot]

Hello Seansdad
It was good to hear from you but what a saga. There is so much talk at the moment about the care system as it is quite high up on the political scene just now and, I might say not before time, but complex cases like your wife’s are rarely mentioned in the headlines. I well remember when I was still working a man who had MS and a personality disorder and was eventually put under a guardianship order but whenever he was in hospital - which was often - and it came to discharge planning there was always debates about whether he needed to be somewhere to meet his physical MS needs or his mental health ones. The fact is he needs both and care homes that can manage both are few - exactly as you are finding now,

Also as you are finding, part time workers do complicate things in terms of contact and as you have also found, social workers are something of a mixed bunch. I have met some wonderful ones who go the extra mile - and to be fair I wouldn’t want to have to make some of the difficult decisions they do - but equally I have met some who were next to useless and I expect one of the problems is complex cases like your wife’s are outside the experience of many. She/he really needs a very senior SW with a good manager to negotiate everything that is going on but then I guess that’s easy for me to say. SWs like OTs are considered shortage categories, meaning there is never enough to meet demand and it doesn’t take an expert to tell you what impact that has on everyone - clients, families and staff alike. That’s no consolation to you I know, but that’s how it is.

However hard, you are clearly doing the right things as best you can. Do keep complaining and saying your piece as clearly as you can and I hope the legal minefield you are now in ultimately works out as you need and one of the homes is able to take her. I do hope this has shown you very clearly that whatever else is going on, taking her home would have broken down probably almost straightaway. You hsve absolutely made the right decision - please do try to remember that when you feel at your wit’s end when you are exhausted with it all, can;t think straight and want to stop the world and get off just for a little while. When I wrote in my last reply that you were probably beginning to realise that making the decision was the easy bit, even I wasn’t thinking of a whole load of legal stuff entering the fray and that’s a whole new ball game altogether. It does sound though that the hospital are still backing you 100% and at least you know she is safe there and being looked after.

I can only imagine how you feel trying to cope with it all. It’s a scenario you couldn’t possibly have imagined in all the years since marrying your wife and probably planned and saw yourselves having a long and happy retirement having raised your boys and so on. Sadly fate has other ideas and there is nothing you can do but turn onto that new, unplanned for road and pick your way along it as best you can, but there will be times - probably 2 o/c in the morning when your brain is in overdrive and won’t let you rest - when you feel like screaming ‘I can’t do this anymore’ You have done and are doing incredibly well. You have my utmost respect and I am sure your sons are proud of you for the care and love you have for their mother even when she makes it hard to love her by accusing you of all sorts. One way or another it will get sorted but please do look after yourself. I hope your lovely dog is keeping you going. I no longer have a pet but love seeing those of my friends including Bear a wonderful cockapoo of an elderly friend of mine - I’ve attached a photo. Seeing him makes my day as he always gives me such a welcome - and he can do a great high 5 for a treat of course lol…

Do take care and keep me updated as and when you can.
Tot
PS Bear has the most amazing eyelashes they look to me like those you see decorating car headlights lol

[Seansdad]

@Tot snap! My Millie

[Steve2]

Do I need to get a dog ?

Best wishes
Steve2

[Tot]

Gorgeous I can quite understand how she keeps you sane seansdad lol
Tot

[Tot]

Sadly Steve2 Bear is not mine, I just borrow him when I visit my friend but it’s impossible to be miserable when he’s around - for a start he is always unbelievably happy to see any visitors. He runs up to say hello then runs off to pick a slipper out of my friend’s shoe box and brings it to whoever is visiting. He’s three years old now and we actually share a birthday. Nobody can be in his presence for long and not smile or laugh. I am seansdad will say much the same of his Millie.
Tot

[Tot]

Hello seansdad
You mentioned in your last post that there were two homes ‘in the frame’ and that a move may happen this week. I was just wondering if that has happened or if your wife is still waiting.
Tot