Your tips: how to deal with lack of understanding from others

[HarrietD]

Every issue our magazine includes real life experiences, and they want to hear from you. For their Dec/Jan issue, they're asking how do you deal with other people's lack of understanding about what it's like to care for someone with dementia?

Examples of this could be:

• If you think family members don't pull their weight because they don't understand what's involved
• When you do get around to making some time for yourself, it feels like others are judging you for it
• If you're out and about with the person and other people are being impatient or unhelpful

How do you respond? What, if anything, can help?

Please feel free to add your comments below, and they may be featured in the next issue of the magazine.

Thanks everyone

 

[nae sporran]

This will be helpful if anyone has any good tips and ideas how to deal with these problems. 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 metal and emotional reserves I have and if it doesn't suit other people then I am sad, but do what feels right anyway. CBT taught me to always find one good thing that happened each day and 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.
I'm not sure if that is quite what you were looking for Harriet.

 

[HarrietD]

Thanks @nae sporran for sharing this, it's absolutely what I was looking for. It sounds like your counselling has really helped you develop a coping mechanism, and it's also good to hear how you deal with people not understanding. As you said, all you can do is the best you can with the emotional and mental reserves you have. Thank you again

If anyone else has good tips on how to respond when others don't understand what it's like to care for someone, please feel free to share them here.

 

[Helly68]

I agree that CBT is helpful, it helped me to realise that not everything is my responsibility - it just feels like that!
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?

I agree that being honest with your family and saying the toll it takes on you is sometimes better than battling on. I don't expect my fiends to understand - only those who have had a similar experience.

 

[Bunpoots]

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!


I found 3 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 DTP - without that I’m sure I’d have sunk!

I never found a way to make my siblings understand how things were, my daughters and I were frequently accused of exaggerating, lying and even stealing. My sister was better than my brother and, in the end helped to sort out his move to the carehome (the manager rolled her eyes and said that was only because she now knew she wouldn’t have to care for dad herself...)
My brother was useless, when I couldn’t visit dad in hospital because I couldn’t walk I asked him to visit only to be told he couldn’t as he was too busy with his boat...
Some people just won’t understand

 

[northumbrian_k]

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 - taken from my journal and already shared with my supportive friends on DTP - 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.

As for the Invisibles, I gave up trying to get them to understand. My biggest salvation came from the realisation that by cutting them out of my life I was losing nothing and saving myself a lot of unnecessary stress for absolutely no reward.

 

[leslyz]

Hi Harriett,
My thoughts on this for what its worth, could probably write more but if this helps for starters, here goes.....

People definitely judge and unless they have experience of looking after someone with dementia, they do not understand as they may only see the pwd 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.

As the illness has progressed and she's now in residential care, there's still that lack of understanding from even some close friends and family. People think dementia is just having a problem with your memory but it is so much more than that. I've learnt as I've gone along but have needed help. My local carers organisation have been fantastic and gave me many months of support and counselling which has been an absolute lifesaver in giving me "permission" to have a life and to understand about self care and to get a balance.

Having dementia is devastating, it's a cruel illness; but to try and help someone with dementia is also a trial and some people have it harder than others, as demonstrated by the contributors to this amazing forum. You can never really understand it fully, but there is a hell of a lot of judgement and ignorance from those who are not really involved. everyone's circumstances are different but I think only people with inside knowledge and experience really have an inkling of what we go through - to anyone who judges, I guess that famous saying "walk a mile in my shoes" is probably the most apt.

 

[HarrietD]

@Helly68, @Bunpoots, @northumbrian_k and @leslyz - I've just caught up with your replies, and I really appreciate you all sharing your insights and thoughts. I think they will be incredibly helpful for anyone reading the magazine who's also experienced people not understanding, or judging what they don't know. Thanks so much

 

[Flavelle]

Re: being out and about when people are rude or judgemental. Keep going! We need a dementia aware and then dementia friendly community and we can only do that by braving comments and challenging ignorance.
I want to share that personal stories shared by strangers who have recognised my Dad’s condition more than make up for the nasty, judgemental comments of others . They have made me aware how much hidden pain people carry when an outdated shame leads them to hide their lives and their troubled PWD away.
Dad can still walk, with a lot of help and a frame (or occasionally wheelchair) So, we can go to a cafe and he can eat cake, which he loves. He is messy and finds it really hard to wait to be served. Options are confusing to him so I am clear and will repeat instruction many times. This has been misconstrued and once, at a caf, a lady tapped him on the back and greeted him (she recognised him from church- where I used to drop him before whizzing back to deal with housebound M.) He was bewildered at being tapped on the back....and dropped a hunk of cake. I greeted her, but she said: ‘ I am talking to him, not you, as he goes to my church.‘ I left the ‘conversation’ to see how she’d do and, of course he thought the church she meant was in another county and had little idea what she was on about. When interpretation was needed she looked back to me, I explained his memories dated back some years I switched the focus back to cake and cryptic crossword clues, he likes these. Our Turkish barbers is the best...they are kind, have learnt to be very clear and assertive so he is calm there. The barber sometimes says ‘I make you look like George Clooney.’ & at times Dad’s even let them trim his eyebrows! If Bert Reynolds had been mentioned he’d probs have got it. Picture please this white haired old man in a social setting asking the same question repeatedly, being given the same answer but then a random clue with maybe a few blanks and couple of letters. Often he guesses the oddest and perfect answers, it’s great! A gentleman there realised Dad’s condition and he welled up as he discussed how his Mum had had dementia and it had been so hard for the family to deal with because of the lack of acknowledgement socially. Things have moved on so much in the last 4 years. Be proud, keep up the process of change and recognition.