Does your sibling (or siblings) help with the care of your parent(s) with dementia?
Mine refuses to do anything to help beyond making a call to our mum one a week and sending her a hamper at Xmas.
There's no good reason for him not to help. He's very wealthy and semi-retired and with time on his hands for holidays and leisure pursuits aplenty. He lives in another country, but could easily be here, at the door, in three hours. Yet he hasn't seen our mother in years.
When I asked him directly to help so as to give me a break, he bluntly refused and threatened to make things difficult with mum's will when the time comes if I asked him again.
Of course, she dotes on him and has a million excuses for why he is absent.
Now, by any measure this makes him a pretty awful person and to be fair, he always has been, When we were children he was a bully. I have wondered were he to present himself, if he would meet the criteria for a diagnosis antisocial personality disorder or what is more commonly termed a sociopath. It's not that rare, around one in 33 men could meet those criteria.
Yet reading these boards it is clear that he is hardly unique and the number of siblings who refuse to help are far greater than the likely number of sociopaths. I went looking for academic research that might shed a little more light on why siblings refuse to help with care so often. There's not very much out there. Sibling relationships are very poorly researched compared to parental relationships.
It has set me wondering. When one child becomes the main carer:
- is it actually more common for other siblings to avoid helping than for them to help?
- how can this be explained? Could it be that sibling order and longstanding roles and gender expectations have an influence on capacities for empathy?
- is it cultural? Do other cultures share the care more fairly?
I'd love to find some data about this and I'm interested to know what your experiences have been.
Wildflower, you could virtually be talking about my brother and the relationship I had with him as a child too.
The other night my horrible brother had a call from the lifeline service to say that Mum had fallen and was on the floor - about 2,30 am. They never managed to reach me because I / we must have been fast asleep and not heard the landline quite a number of times. Brother told them he couldn't go to her because he was "over the limit". He lives in the same city(well some of the time but was there this night). This next part was my error- I had put my mobile phone by my bed but failed to turn off the night time no calls setting.I know this was unfortunate and a mistake I made but we have a landline downstairs which I would usually hear. As my brother had said no to the lifeline people and the lifeline centre couldn't get through to me they phoned our son who lives 1 and a half hours away. Our lovely son started his journey here. When my horrible brother finally managed to alert me with a call he told me Mum was on the floor. In my half awakeness I first thought he meant he was with her. He went on to rant and rant about why had I had allowed the hospital to send her home(2 days prior to that). The hospital had been lovely and very thorough, and despite 2 scans after 2 falls nothing was broken and they could see nothing on a head scan which could have been causing some one sided "head funniness" and her feeling of wobbling to that side. Note - this was a very, very intermittent thing which only had happened very occasionally. He, amongst his ranting and bullying about what he thought I had done wrong, said that he was "over the limit" and couldn't go out to her. I then learned that it had happened over an hour ago - 1 and a half hours ago to be precise and realised he wasn't with her!! So off we went, my husband who is supportive and to my mother's house. Our son arrived shortly after.
Mum was actually OK really. She had had sense enough to prop herself up against the bed and cover herself up. She had wet herself again only because she couldn't get up and I managed to get her to have a cup of tea and settle her, then sort out cancelling the ambulance and instead contact the lovely community nurse team who were so lovely that I wanted to cry. They told us to go home, get some sleep and that he would be with Mum in half an hour. So all three of us went home to our house.
On another connected note here the community nurse man said that the hospital had really concluded that the loss of balance episodes were to do probably with a manifestation of her dementia. She has had physios and OTs "arriving by the minute" over these last few days to organise adaptions and give equipment. Again am very grateful for all this help.
I had tentatively been trying to get some communication going with brother during or prior to this time but I only do it by email (which he says he doesn't read). He wants a phone call but he rants and is so nasty and wants what he wants. I fear letting him into the care agency system thing as he complains about all these services and has, in the past made Mum aware of his complaints. Sadly she somehow likes this "strong, forceful, get things done as they should be done" attitude....even though what he wants is ridiculous and not helpful. He doesn't seem to understand the process of diplomatic negotiation. So in a recent email before this event I have described there was a hopeful sentence. I quote:
"It is my understanding that if I am here in Liverpool it is as much my responsibility as yours to attend to Mum in an emergency, so at least we agree on that point."
That was 2 days before this incident where he let everyone down.
Thinking about it, as I do not know how he and his wife live their lives except to flit between 3 houses, one on another continent and another some 80 miles away, I can only conclude that he fell asleep for over an hour on this night as I have the times of the earlier recorded calls on my mobile. I wonder how severe his drinking problem is. I hardly drink really and I never drink and drive at all but there are taxis.
Mum wouldn't consider going into respite care to recover. I tried to discuss this with her and in that same email from my brother he said "On a separate point, when I spoke to Mum today, she mentioned in passing that you had asked her if she wanted to go into a nursing home" (which of course I didn't ...but there may come a day...) and there followed a further reprimand from him to me. I know she could have easily interpreted my words wrongly but he has been so against any sort of care in the first place. I am not sure now what he actually thinks about the care after I instated it (mostly only a half hour at tea time) because I couldn't cope and she had been mis-medicating her tablets...and this was while he was on a 3 month holiday over Christmas....but likely my brother would never say anything I had done was good.
It is tricky and I am worn down and I am taking each day as it comes and hoping that we might still go away for a planned 4 night break later this week. I have sent a reminder text to him and said that our son will not be able to do a journey in place of him in an emergency. As usual, no reply.
And yes I also feel that I am going through the motions of care for my mother. It is so difficult. She can wind me up so much,still. She never actually had a mass of tact but this aspect of her personality is now showing more. I do the job out of duty. I wonder how I would feel if I didn't have to be the one to put so much in. Would I feel more affection? Possibly. I need a the planned break but really to see what happens maybe before then- but yes I am nervous about the consequences. My health is suffering though. I know my stress levels have been too high.