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  • Sarah Whitebloom

Things I wish someone had told me: Sally's fantastic new blog


  1. You will feel guilty – terribly guilty for a very long time. The guilt may never leave you. I know it’s easy for me to say this, but really fight against this. Don’t dwell – do something useful. It’s nobody’s fault.

  1. You will never be able to offer the person with dementia the kind of care you feel and know in your heart of hearts that they deserve. This is bigger than any of you and the family will inevitably disagree and this WILL cause disagreements, even amongst the closest of families. In fact, OFTEN the closer you are, and have always been, the greater the 'fallout'.

  1. Try to acknowledge that whatever phase you are going through, 'it is all part of the process'. You are doing all you can – you can’t do anymore. You will each deal with it in different ways. Don’t compare one person’s way of coping with yours, no matter how angry you may feel.

  1. All care homes are horrible. Even the really nice ones are horrible when you first visit them, because you don’t want your loved one to be there – under any circumstances. You will come to realise that this is possibly the only thing you could have done at the time and although imperfect, it has actually been OK. I have now grown to 'quite like' visiting.

  1. Things will go missing. You won’t be able to keep track of every little thing in their room. Expensive perfumes and the odd shoe will go missing and it’s probably, (through no-one’s fault), stuck in a duvet cover in the laundry basket or a very, confused, elderly lady has picked it up and put it down somewhere. Don’t get angry with them or with staff or you’ll drive yourself mad. You could have a full-time job on your hands trying to do the jobs, which the carers are paid to do, (on frankly pitiful wages).

  1. Self-care is important. Visit, but sometimes don’t visit. Sometimes, it’s all just too much and can be depressing. Your loved one won’t even miss you. They will be eating somebody else’s chocolates and watching Judge Rinder.

  1. They aren’t dead yet. Don’t feel you have lost them forever. This is a different phase of their lives. You often won’t get much back from them, but then newborn babies can be like that. Just try to enjoy the bits you can. Every day is different and you will get glimpses and surprises every now and then.

  1. Tell them you love them, while you’ve got a captive audience. At some level, they are hearing it and liking it.

  2. Physical touch can be more important than words. Don’t worry about what to talk about. Sometimes just sit holding hands for half an hour, whilst you read a book or watch telly with them.

  1. Make an effort with their room. Keep it bright and cheerful: cheap shops are fine. I spent under £100 on second hand nick-nacks: an IKEA bookcase and canvas prints from a well-known discount store. Keep it airy and modern, not like an old person’s room. That way, YOU won’t feel depressed, when you’re in it! (Think Premier Inn bedroom, rather than a scene from an Call the Midwife) – unless that’s really their thing.

  2. Always be mindful, you never know the minute. Your Mum or Dad may be in this place for three months or five years. Each visit is precious to them and to you, but that doesn’t mean it’s got to be emotional each time. Keep the mood light, have a laugh, be the way you always were. If you want to chat with the other people, then do so. But if you would prefer privacy, don’t worry what people will think. Go to his/her room and watch telly or play a daft game. A time will come, when you will miss this.

  1. Try, if you can, to find a care home that isn’t too far away from the main visitor. It’s always better to be no more than a few miles away – a walk away is perfect, so you can just drop in on a whim, in passing.

  2. Never, never, make enemies of the staff, because you just can’t bear to see your relative doing things they wouldn’t normally do. I remember seeing my Dad, (in my eyes), 'pitifully' having a hotdog for his Sunday tea, when he has had silver service meals on cruises and in hotels all over the world. The staff will come to dread your arrival and those exacting standards. They are doing their best and unless there is a particularly genuine issue of neglect, they are looking after your loved one usually very well. (My Dad seemed to actually enjoy that hotdog).

  1. You are likely to undergo the same pattern of grief, as you might following a bereavement: denial, anger, bargaining, acceptance, etc. Be aware that this is what is happening. You are not going mad. You are doing an amazing job.

  2. Don’t be afraid of silence and feeling like you’ve got to keep up a running commentary. Most 'language' is non-verbal. Be relaxed around your loved one and don’t feel you’ve got to say much – or even anything. Sometimes you say it best, when you say nothing at all.

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