My son and daughter are both determined as my Carers and even have Power of Attorney in regard to my finances and health, but I don’t think they care!
Let me clarify, they don’t need to care yet and care in the sense of looking after me totally! They of course care for me, as I care and love them. I think this a very important distinction when we use the word Care and Carer.
I see the word carer used for people that are looking after someone that has been a part of their life for so long, that they cannot imagine a time without them, but this type of care is different. When they were together before dementia devastated their lives, they cared for each other, it was a mutual, bonding existence. Now, the carer, looks after the other, decides for you, enables you to live, it becomes totally one sided and dependant on the Carer alone.
This Carer, is governed by love and can create the hardest lives alone, with someone else.
Then there is of course, the Carer in the Care-home, or as a part of a community system. I think these play a vitally important role when dealing with sufferers of dementia. A true carer, of this type, see their role as a vocation, rather than just a job. This, I think, is a good way to assess a care home, or carer. Ask yourself, do they look, or act as if they see your loved one as a job. I do think most are first class and truly do care, or at least I hope so!
Then there are those like me, that liked to be cared for, who doesn’t, and love to care too. But, do I need the care in the sense of being controlled, or governed, at this moment in time… then I have to say no! What I need and get from my Son and Daughter, is total support. They talk to me, with me and we share everything. They know what I want as far as life goes and happily accept my wishes. This does not mean I have free run on anything I do. I know that often I’m not really level headed and some things just can’t happen. Such as, driving, some days I think I could just get it the car and drive away, but in reality this would be so dangerous. My son and daughter are my sanity. They support me, they guide me. They do care, but the greatest thing is they support me, to be me and help me Live with my Dementia!
I have Supporters and not Carers… this is a distinction that is really important when you try to consider someone that is suffering with the symptoms of some form of dementia. You have to assess, do they need care, or support? I think often the difference is lost in confusion and this means what is thought to be needed by the sufferer, is not really what they need! We also have to be aware that the time between support and care can vary and we may need care with some things and support with another. This is a balancing act we hear about all the time. I think my clinic has a clear demarcation between the two and only those needing Care, need the attention. Those of us that require support… is another matter!