When you want to help but can't?

[7alley7]

Sorry for the long first post but here goes...

My Dad has Alzheimer's. He was diagnosed 9 months ago with firework type issues (wanting to Kick mum out of the house as she was some random stranger) starting about 6 months before that. It is effecting his frontal lobe mostly (ATM). Although the mixing of keys, things being "stolen", urinary incontinence and inability to complete a task are all now present the biggest hurdles we face are
misidentifying Mum (His primary carer)
fixating on ideas (no amount of distraction seems to work)
wandering & wanting to drive (and we have tried everything to have his license removed )
My parents live on 5 acres and there is stuff everywhere. Dad is a retired farmer and has collected "useful" things to use in the shed all his life.
Last time we went to the geriatrician he said that where Dad is now is usually where he sees people presenting when they are placed in care because their behaviours become such that their caregivers are unable to manage any more.
My sister and I sat down with Mum and had a hard conversation with her about making the area safe for Dad, removing tools from his shed, cleaning up as there are tripping hazards everywhere, creating a closed in areas for when he is determined to go "home", a place to lock the keys so he no longer has access to cars etc. and doing the paperwork so we can at least place his name on the list of places where she might like him to go. We even mentioned the idea of moving so she could be closer to him if he needed to go into care (1.5hr round trip to the closest home IF she is able to get him in that one). We are more than happy to do all of these things for them if we are allowed.
Four weeks have past now since all this happened, including having to get the police out twice because he took off at night and she couldn't stop him and all that has happened is we insisted and organised for some locks for the house so he couldn't get out while she is asleep and we organised and insisted on her getting a morning of respite a week (she refused any more). Their relationship has always been him making the decisions but she seems to be incapable of helping herself or giving us the okay to help her. I know she is in denial but... How can we help her see that this is moving really quickly and is not going to end well if she doesn't start being proactive? Or do we have to wait until she/he falls and be there to pick up the pieces in the end? Anyone been in a similar position? My head hurts just thinking about it

 

[marionq]

Your last sentences sum up the situation a lot of people find themselves in. You want to help but your Dad can't change and your Mum won't change. The choices are bleak. With medication he might calm down or there may b e a crisis which will result in being sectioned. This often is the best thing to happen because then the problem is fully addressed and a lot of people on here have found that is helpful.

Good wishes.

 

[angelface]

Sometimes all you can do is to wait for that crisis,and the waiting is horrendous.

Are you in the UK? If so,then it is worth contacting SS urgently and pointing out that dad is a danger to himself -'at risk ' is what rings the bells with SS.

Also your local alzheimers society may be able to help.

 

[nicoise]

Hello 7alley7,

Welcome to TP - this forum will help you more than you can realise just now - but it sounds as though you and your sister are pretty clued up already about the practicalities.

I suspect your mum is in denial about what has happened to your father - she may step forwards, but even then she might find it just too difficult to change a lifetime's behaviour and be the one in charge, making decisions about and for her husband.

My mum still had capacity although she was declining, and refused to make any changes which would have helped and protected her - and so we had to wait for a fall as the crisis that made the decision for her. Not what we wanted, but we were powerless to change that. It sounds so weak saying that, but I suspect you will understand what I mean.

Keep gently trying with your mum, and do the things you can to support her and make your dad safe if possible. But I know a little about farmers, and they tend to be very opinionated and bloody-minded, and blinkered if they've decided to do something - and nigh-on impossible to try to stop!

Good luck

 

[canary]

I hear you about the frontal lobe problems - you are describing typical behaviours.
Are you in US - the style of writing makes me think that perhaps you are? You might find this forum helpful - it is for people who have/are caring for people with FTD and associated conditions involving the frontal/temporal lobes. It is based in USA, but there are people from all over the world who are members. There is likely to be someone who knows what is available local to you.
http://www.ftdsupportforum.com/

 

[7alley7]

Thank you

Thank you for your comments.
I am in Australia but I will check out that forum. Thank you.
You are right about dad being determined; he drove the tractor to the neighbour place today so they could go to work. But that is a whole Nother issue.
We have been in contact with our aged care team and had an ACAT done but really need the documentation complete. I guess we kep plugging away at it until it happens. Some days are easier than others aren't they?

Until then my philosophy for today will be laugh rather than cry

Again thanks

 

[Onlyme]

I would go ahead and say to Mum that why don't you and your sister do the paperwork for both of them. Hers can be enacted later on but that way 'they will both be safe your your care and won't have to worry. She will then be able to look after Dad better'.

It sounds as if your Mum wants someone to make the decisions for her so will be only too happy to not have to do it.

Perhaps a letter to the Police stating you do not think your Dad is safe and if anything happens you will not be responsible for his actions. Hopefully they will then pester someone to retest him.

Good luck.

 

[Amy in the US]

Many of us have been, and know others who have been, in a similar situation.

All you want to do is to help, and to prevent a crisis or an accident.

I am in the States, so can't speak to how your system works, but urge you to get whatever support you can from whatever agencies you can (police, social services, Alzheimer's society).

My mother has Alzheimer's disease, and no short term memory. She was diagnosed in early 2015, after a crisis and hospital stay (Geriatric Psychiatric/Senior Behavioural health ward in US terms; sectioned in UK terms, not sure what you call it in Australia). She was discharged to a care home. I had known something was wrong, but not exactly what, until her hospital stay and diagnosis. I tried to intervene, but in the end, had to wait for the crisis. Before the crisis:

I did not take my mother's car away and she was in two accidents (that I know of). Luckily she was not badly injured and no one else was hurt (that I know of) but I had nightmares about this for a very long time. I would not have been able to live with myself if she had killed or seriously injured someone.

I did not take charge of my mother's finances and she gave money away to "charities." I was luckier than most and it was not a devastating amount of money, but it was still a significant amount that I would have preferred she spend on her own care, rather than dubious "charitable" organizations.

I could go on, but you get the idea.

It's clear you are very concerned and care very much for your parents and want only what is best for them. That comes through loud and clear.

Sometimes the best we can do, is to do as much as we're able to do, and then wait for the crisis. I'm so sorry.

Wishing you and your family all the best.

 

[theunknown]

I agree that it's not likely that anything will be done unless there is some sort of 'crisis', which may include being sectioned. It's such a balancing act, because no person in their right mind would want somebody being deprived of their liberty because of mental health problems. However, there's a balancing act between that and something physically serious happening. Personally I think that things are only going to get worse because of the massive gap between taxpayers' money spent on health care and money spent on social (ie mental health) care. Not insignificant is that there is such a lack of knowledge about mental health issues within the general population.

I've been a deputy (through the CoP) for my mum for a year. She had far too much money in her current bank account, and that was added to by the selling of her house once she moved into a care home. My responsibility to manage her finances in her favour has meant I've had to move money into different banks, so that she's covered by the government financial compensation if there's a problem. It took quite long appointments with a couple of banks (as they had to liaise with their legal departments) to find out what they accepted as official documentation. What they needed was an original court order and my i.d., which they copied and certified in the bank and sent off through their internal postage system. Once this happened I had access to my mum's current account to use her money to provide for her financial needs.

However there was still too much money in a new account, so the idea was to move some of it on to a different bank. How this was [supposed] to be done was by getting a cheque from the new account to open up another account in a different bank. An appointment was duly made, and the requirement was the court order and my i.d. When I got to the bank I was told that they needed i.d. for my mother. Her official i.d. ran out in 2015 (that was her driving licence). We will never again have i.d. for her. The whole point of deputyship is that they need my i.d., not hers. So then I was told that alongside the court order and my i.d. I needed her latest DWP pension statement. As it happens I have that, because her correspondence now comes to me. The person dealing with the appointment on this occasion had no idea why we there (even though the situation was explained at the time of making the appointment), and obviously had no idea about deputyship. The suggestion was made that 'pensioners' can get a free driving licence (for i.d.). My mother is in a locked EMI unit, so the idea of getting her out of there and placing her in a photobooth for the licence is not even worth thinking about.

Sorry for the rant, but I'm so sick of dealing with officialdom that does know about PoA but has never heard of deputyship. The role of deputy places on you a lot of responsibility. I'm currently in the process of filing my annual report to the CoP and I need to have copies of all financial proceedings. In the age of the internet and Google, how difficult is it to get on there and find out what deputyship is?

 

[7alley7]

I think we have had a break through and mum has filled out the forms. Yay.
We have also managed to hook her up with an hours cleaning a fortnight (which to me seems to be nothing) but a whole day where Dad goes to respite once a fortnight. Couples with the three hours a week we organised two weeks ago, we might finally be getting somewhere.
Now to convince him he doesn't need to go to work/town/anywhere really ...

One of my biggest issues at the moment other than that, is we have organised so many different people to try and help and rather than pass on their information the last person collected we have to go through the whole lot again! Now depending on where Dad is at the time, depends on the information mum gives. Classic example today - oh he eats everything.
If everything looks like no dairy, no deadly nightshade plants, no salads, no rice, no pasta, no red meat, no sandwiches, no cereal but fish and chips then yep he eats everything But he was sitting right next to her and being the social chap he likes to be there was no where else he was going to go.
The lady nearly fell off her chair when I mentioned his ACAT score and said oh I didn't know he had one I will read that later. Wouldn't that be something you would look at first?
Anyway she is still set firm on everything else including letting Dad drive so we will see where this week leads us