Torn between mother and brother

[jstmcm]

I am totally distraught and don't know what to do for the best. My mother has Alzheimers, lives on her own 2 hours drive away from me and 3 hours from my brother. A carer calls in for 30 minutes a day to check she is OK. Physically she is fine - can wash, dress etc and is very fit. She can still cook one meal for herself (grilled steak with boiled potatoes & peas) so has that for lunch every day. The problem is the confusion she suffers from. She does lots of "silly" things, like putting things in strange places, losing money around the house, etc., etc., and has great difficulty understanding anything that is said to her. Occasionally she does something more worrying - she has at least once (to our knowledge) left the iron on, face down on the ironing board, and several times she has switched off the fridge or the Careline alarm system at the plug, and been unable to understand what she has done, let alone been able to switch them on again.

The problem is how my brother and I react to these things. My brother is extremely stressed with it all, can't sleep, has very high blood pressure, and every time there is a new problem he blows a gasket and insists that she has got to go into a home. A year ago my Mum was talking about wanting to go into care, but since then she has changed her mind and is now refusing to consider it "yet", always saying she will move in "a year or two" or "when she's in her 90s" (she is 87). Although I would be very happy if she chose to move into residential care, I don't think social services would say she needed to be in residential care, as she is just about coping with just 30 minutes of care a day, (but she is self-funding so social services are not involved).

2 weeks ago we had several problems in a matter of days, and my brother told Mum (over the phone) that he was coming up to collect her and take her to a care home whether she liked it or not. Needless to say this upset her greatly, but apparently she packed a suitcase. Of course, he had not checked whether the care home we have chosen had a vacancy, and they didn't then, so the suitcase was unpacked again, but we thought she had accepted that she was going into care soon. Now I am with Mum today, and tried to talk to her about the move into care, which could happen in mid-September. She got very upset and was adamant that she was not moving any time soon, because she is coping at home and once she moved into care she might as well "give up". (She was amazingly lucid when talking about it, much more lucid than she usually is.) The thing is - I agree with her. As I said, I don't think she NEEDS 24 hour care, although of course I constantly worry about her doing something dangerous, be it leaving the iron on or causing an accident in the kitchen etc. But I sometimes worry that my brother might have a heart attack he is so stressed. I would never forgive myself if something happened either to my Mum or my brother, but most of all I want my Mum to be happy and to stay in her home for as long as she can.

Who has the ultimate decision? If someone is OK physically, how much do we take into account the chance that she might do something dangerous one day soon? I feel that it should be my Mum's decision whilst she can still express an opinion (although we do have Power of Attorney for health & welfare) and that she has the right to take the risk of staying in her home if that is what she wants, but my brother thinks she should be put into a home even if it is against her will. How would that even work?

Sorry that this is so long, but I just don't know what to do.

J

 

[Wolfsgirl]

It is my understanding (I may be wrong) whilst she has capacity she can refuse and cannot be forced against her will unless she has been assessed by gp, care home and social services etc.

Could you perhaps reach a compromise so she has at least x 2 checks per day from carers, perhaps one seeing her into bed for the night? I truly understand the fears you both have it is terrible not living on the doorstep.

When she does go in, probably best soon before she deteriorates, she will be safe and have companionship plus you know today, she is more lucid when with you and possibly she would be the same with others...

Keep posting x

 

[susy]

Can she go into the home for "respite" / a holiday? And see how she feels about it then. She might find that she settles and enjoys the company of others. Care homes really shouldn't be seen as a place to "put" people, like a prison or a work house but that in reality is how we see it. It is a home with care.

Best wishes xxx

 

[garnuft]

The thing is, it has to be established that your Mum lacks capacity to make decisions for herself, she retains the right to make what would seem unwise choices as long as she's deemed to have capacity.

My Mam was the same, she was adamant she was managing everything herself.

Gradually my sister and I cut down the dangers in her home until Mam's dementia progressed to the stage that she went out of the house in the early hours of the morning on January 2nd this year, in her slippers and no coat.
I always knew that would be the 'line' for me.

We disconnected her gas cooker one year before this, Mam was reheating some soup in a saucepan and sat reading the newspaper, with the pan in full view and the house full of black acrid smoke, as the pan handle melted, oblivious to it all.

She continued to live in her own house until she died (there was one week of respite that my sister and I begged her to take to give us a break but she would have been sectioned at that time as it was after her early morning walk-about and her dementia was causing her to be constantly confused. My sister and I were spending 24 hours a day with her by then).
We were on constant call for her whole last year though, she couldn't really be left on her own but she would not allow any outside support, my sister and I were driven to our knees in caring for her, care she didn't think she needed.
I think she thought my sister and I were taking refuge in her house to keep out of the way of our partners.

My Mam kept switching the central heating off, even with it blocked off with plastic and a big notice saying 'Don't touch this switch!' she used to pull it all off and switch the heating off, luckily she used to ring and say she was cold but conversations about it were a waste of time, as soon as she was on her own...she would switch the heating off again.
And she was constantly getting into a muddle with her TV...but I missed those calls when they stopped as it was then her dementia accelerated; she no longer had any interest in the TV and was just sitting on her own, quietly staring.

She lost the ability to look in the fridge for food.
Her innocent delighted face when I would appear with a cup of tea and a cream cake
'Where did you get that from? Oh..CLEVER GIRL!' makes me smile at the memory as I see her proud, smiling face.

We had to leave snacks out on the kichen worktops and take our chances with food poisoning, longest they were left out was 12 hours though and Mam was reared in a age that made sure she had good antibodies to protect her against an iffy peach melba.

I would remove the iron and other things that are causing immediate worry, I have an awful feeling that one day the cooker is going to cause problems but we were unable to address these things until they were a problem, rather than a worry, if you know what I mean... and I suspect a Doctor would take the same view.

So for now I would take away the iron as it has already proved to be a problem and up the care package to perhaps a morning visit, a visit to suit your Mum's lunchtime and an early evening visit.
Some people go to lunch clubs and day centres...my Mam never would, she liked to be in her own little house.

It's hard for your brother...my sister was the same but her solution was the opposite...for the last two years of Mam's life she kept trying to persuade me it would be a good idea if she and I moved in with Mam on a shared care basis -
we did this for most of the last few weeks of Mam's life but only because we knew Mam was reaching the end-
I couldn't have contemplated it before then as I have an adult son with severe disabilities.

Perhaps the best way you can protect both your Mum and your brother is to put more care in place to help her at home, it's good that your Mum is accepting carers calling in...my mother used to set them off with sparks, she hated 'strangers' being in her house, so Mam closed off all the avenues of help we could have accessed.

It's a big decision to take, especially as you doubt the necessity of it yourself so try every other avenue first, then at least you will know you did your very best.

It's a hard time, I still have the feeling of worry about Mam haunting me five months after her peaceful death in her own little cottage.

The only regret I have is that I didn't try to get outside support earlier on in Mam's illness, not that she would EVER have accepted it though...she was a strong-willed woman my Ma
But I wish I had made the last few years easier for myself, my sister and our families...we all took a battering.

Best wishes to you, your little Mum and your worried bro. x

 

[annie h]

If she can still use a grill and boil potatoes she sounds as though she is still quite capable really! Have you considered moving her somewhere near to you where you can keep a close eye on her but she can retain independence a bit longer? When my mum was originally diagnosed I had some great advice from her local mental health team which was either to move her as soon as possible - because otherwise it would be too late for her to get used to somewhere new - or to leave her in her home accepting that she would have to go into a care home sooner because I was too far away to pick up the pieces every time something went wrong. I remember those frequent calls when you'd realise that something had happened but couldn't quite work out what and do I jump into the car and drive up there right now or not? It's totally impossible to manage the disasters remotely, and it's so much more difficult to manage carers, medical appointments etc etc. I decided to move Mum and managed with great difficulty to get her to agree. I can't say that she was ever happy to have moved as she had a very rosy view of how things had been before she moved although in fact she was really remembering how things were a decade earlier! But it did make it possible for her to stay relatively independent for several years more than she would have been if she hadn't moved, and it was easy to look out for and head off the endless series of danger points around cookers and irons etc that Garnuft mentions.

The one thing that's for sure is that whatever you decide she probably won't think it was the right thing - it goes with the territory I'm afraid!

 

[Beate]

I am looking at my OH and he can't be left alone for longer than 15 minutes without doing something silly! But everyone is different and if your Mum is capable and wants to stay in her home then you should try to do everything to enable her to remain so unless it's no longer feasible. There is a lot of help available, from telecare items that would make her safer, to befriending/sitting services, day care and more carers coming into the house - 30 minutes a day doesn't sound a lot to be honest. But you would need to monitor the situation to be able to step in if this is no good.

I can understand where your brother is coming from - I am one of life's worriers, and leaving someone with dementia alone would drive me absolutely potty. I'd be forever on the phone checking on them. Your Mum would only need to leave the cooker on once to cause a catastrophe. Dementia is progressive and she won't get any better so maybe it is indeed a good idea to try a care home for respite first and see how she gets on? You never know, she might make friends there.

 

[jstmcm]

Thanks for your replies, all. Mum did spend a week at the care home last year - said the staff were lovely, the food was wonderful, the rooms were very nice, but she couldn't possibly live with all those "bonkers old people"
I tried today to persuade her to try another stay, but she refused, saying she had been there "so many times" she had no intention of going again.

Trying to move her to another house nearer me wouldn't help, as the issue is that she refuses to leave the home she has lived in for 50 years. I can quite understand how she feels, nobody is going to want to do that, and as she is definitely going to need to go into a care home in the fullness of time, we don't want her to have to move twice (or us to have to persuade her, since once is proving impossible). She can't come to me because I am already caring for my adult son with autism.

Trying to increase the care she is getting at home looks like the best short-term measure.

Many thanks again