Advice

Your answers: Lack of understanding

nae sporran says,

‘My partner's daughter only seemed to realise what is happening and how hard things can get when I told her we couldn't meet for lunch on a particular day because I had to go to counselling. I have learned to ignore people and do the best I can with the mental and emotional reserves I have and if it doesn't suit other people then I am sad, but do what feels right anyway. 

‘Cognitive behavioural therapy taught me to always find one good thing that happened or one thing I achieved each day, then write them down in a diary so there's always something positive to hold on to, no matter how hard the day has been. It works most days as a coping mechanism.’ 

Helly68 says,

‘I have learned to ignore "helpful" remarks from people who have no experience of dementia, saying they would never have someone in their family go into a care home. How do they know? 

‘Being honest with your family about the toll it takes on you is sometimes better than battling on. I don't expect my friends to understand, only those who have had a similar experience.’ 

Bunpoots says,

‘I lived nearest to Dad, so I didn’t mind checking on him most days. But I found that, as his condition worsened, my siblings became more unwilling to help. By the last year of his life I was pretty much left to deal with everything by myself, and there was a lot to deal with! 

‘Three things helped keep me sane. I bought myself a pushbike – getting out in the fresh air, even if only for half an hour, and getting physically tired helped my mood, as did the exhilaration of freewheeling downhill. I learnt to expect nothing from my siblings. I got loads of support from my friends on Dementia Talking Point. Without that, I’m sure I’d have sunk.’ 

northumbrian_k says,

‘I had some difficulty getting my wife's sister to see the truth of our situation. She invited us to her house and spent most of the time talking tactlessly about holidays and (largely invisible) family members. She could not understand why I appeared to be so tired and sensitive to the things she said, as in her view my wife seemed a “little better”. Maybe she was fooled by “hostess mode” or just did not want to see the plainly obvious. 

‘I was so downhearted that I decided to share with her an unvarnished account of a typical day in our life, including some very unsavoury details about toilet habits. It may have been like shock therapy for her but did the trick, as afterwards she finally seemed to “get it” and began to act in a more supportive way.’ 

leslyz says,

‘People definitely judge and, unless they have experience of looking after someone with dementia, they do not understand as they may only see the person at "their best". It's not their fault I guess, but that judgement can be very difficult to deal with. I felt constantly criticised by Mum's neighbours and felt I couldn't win. All sorts of manipulative games were played and snide comments made. It didn't help that Mum could put on that wonderful “hostessy" front and would airily dismiss any concerns. 

‘My local carers organisation has been fantastic and gave me many months of support and counselling. This has been an absolute lifesaver in giving me "permission" to have a life and to understand about self-care and getting a balance.’