I'm the sole carer for my Mum, who lives in a care home now with what has become advanced stage dementia, as I was for several years previously when she was still able to live in her own home with less advanced dementia. My siblings have played almost no part at all in her care at any point. They do both currently now live abroad, so being physically present in not now possible, though in both their cases the decision about where to live was one they had some choice about. I don't resent that, however. What I have found hard is their unwillingness to engage in any meaningful way with my Mum's care at any point. My early suggestions about them helping were responded to but so half-heartedly there was clearly little point in pursuing it, for example I recall asking one of them to help my Mum choose meal options from a list when I was arranging delivered meals for her at her home. Now that Mum is in a care home the emergency visits when she could not make her heating work etc, the liaison with the Police and Court appearances when people defrauded her, the time she set the cooker on fire and so on and so on are all in the past. I did all that alone too.
There is a lot with easy electronic comms and systems that can be done remotely to help a main carer. For example, handling finances, handling the dreaded heartless automatons at the DWP, checking in by email or phone with the home or carers and sharing the results, helping make decisions about aspects of her ongoing care as her health changes, keeping in touch with Mum's friends and family for her, and so on. And last but not least keeping in touch with the person with dementia. And chasing things up (goodness knows there is an endless amount of that !) It has all been left to me.
Judging from what friends and family have told me about their experiences in similar situations, this is not uncommon. And, if by some freak chance of fate, one of the siblings is reading this, I'd also add that telling the main carer that you really appreciate what they are doing periodically does not cut it !
(This is not specifically in response to the above.......haven't posted before and couldn't work out how to do it!)
I would like to send out some love and sympathy to all the other invisibles out there.
As seems to be the general flavour of many of these posts, we are always accused of having it easy/not caring about the pwd or the carer/self indulgent etc etc.
Have you ever asked yourself what it's like to live 100's of miles away from your loved one with dementia?
Knowing you can't be there straight away if something happens to them or their situation escalates, be there to share the load with the family carer or maybe God forbid, because you just miss them and want to see both of them?
Endless worry because you know they both need a lot more care and support than they have or will allow?
Not being able to just 'pop in' at short notice for a chat and a cuppa or take either of them out for a few hours for a change of scene?
Unable to regularly stay overnight for carer to have some respite, pwd to have some different company, some extra practical help and you to worry less?
Being able to do some nice, familiar things together, (albeit in a different way) when your loved one with dementia looks or sounds worn down, fed up or upset?
When they have difficulty with remembering you or your situation because it's unfamiliar to them?
When professional services never contact you with updates, or to keep you involved and informed about things that have happened, despite numerous pleas to the contrary?
Being snapped at by the family carer when trying to have loving and honest conversations about your concerns regarding certain things with both the carer and pwd? It's not a criticism of their valiant efforts but they seem to forget or perhaps feel undermined that a fresh pair of eyes and being one step removed from the day in, day out reality of the situation, can be really useful.
The holier than thou attitude from those who not by default but complete personal choice, (despite going offered several alternatives) wish to be the main carer, whether living directly with the pwd or not?
Being ordered by the family carer to do certain tasks for the pwd, rather than spoken with or discussed?
Being treated like an uncaring stranger because you may be unfamiliar with certain new habits or behaviours with the pwd and sometimes because you feel the family carer is deliberately keeping you out of the loop?
Issues with financial affairs and personal differences as to how this is looked after or spent?
Being made to feel guilty and that you don't care because you're constanly reminded of how little you visit and that phone calls to talk to your loved one aren't the same?
Sorry to sound upset and bitter but please be mindful of the tone of your conversations to those of us who are unable to change our day to day situation and try to understand what our perspective's like sometimes, despite your own difficulties.
Sometimes we tell you about things our kids have been up to, or other nice stuff not to be unthinking, selfish or insensitive but just for a change and so that the conversation isn't always all about the pwd. It's communication of a different sort and can sometimes help all feel connected.
For what it's worth and despite being told not to, I actually think it's right and worth thanking the carer and showing somebody your appreciation for all that they do in an essentially, thankless job. A bit like regularly reminding your nearest and dearest that you love them.