I am feeling so lonely and lost tonight, tired of trying to navigate through wierd waters. I want to be loving and patient but the endless questions, the repetition, the reliance, anxiety and insecurity just wear me down and I don't like myself because of my reaction to it. i thought I'd had a Eureka moment a while ago when I realised that I was trying all the time to fight the dementia, to challenge it - "I told you that 5 minutes ago". " You know what day it is - check the calendar" etc. I read some insightful things here and realised that I must go with the flow, realise that dementia is an illness and the hurts are unintentional. But I miss my partner. I miss planning holidays, talking about anything and everything, watching TV together. Confiding in friends about how difficult life is just makes me feel disloyal. People tell me how important self - care is but how do you self care when any time out feels like betrayal? How do we stay sane? How do we like ourselves? How not to cry? I know this is all self indulgent but I think (hope)you will all forgive me because you've been here too. If anyone has any insights into how to cope, please share them with me.
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- Thread starter Katy Lou22
- Start date
Hi @Katy Lou22 I am sorry that you are feeling lonely and lost. I have been there too and wish that I had some insights that would help you. I don't have, but I do know that you are doing a great job in incredibly difficult circumstances. Looking after yourself is not in anyway self-indulgent. I hope that knowing that people here truly understand will help you in some way. Come back here whenever you need someone to listen.
Time out is vital to both of you. You’ll hit carer burnout very fast if you can’t. That’s a necessity, not something to feel guilty about.
You count too @Katy Lou22 . Your needs are important too and are not of lesser importance than his. It only seems like betrayal and disloyalty because he is unable to understand what is happening, wants you all the time and can only see his own needs, not yours. If your needs are not met then you will burn out - Ive been there and it is not pretty. You desperately need to get him used to having someone else around at times so that you can have a break
Of course you miss him, although still very much alive and looking like your husband this gentleman is different to the man you married and shared life responsibilities with.
You are grieving and that is the very reason why you need breaks.
If you can organise someone to sit with your husband while you are away it might help. No need to feel guilty that his needs aren’t being met, for that hour or so they are being met by someone else.
You are grieving and that is the very reason why you need breaks.
If you can organise someone to sit with your husband while you are away it might help. No need to feel guilty that his needs aren’t being met, for that hour or so they are being met by someone else.
Thank you for your replies. It just helps a lot to unburden to a group of people going through the same stuff. The more I read on here the more I realise that my feelings and reactions are common to most of us and there is some comfort in that.
I so understand….i actually found it a bit easier when he got worse as then it was more obvious that it was the disease. Earlier on it is like they are deliberately being annoying. I will listen to anyone that wants to vent as this is just THE most awful thing. Having taken my OH to a care home yesterday years of denying my feelings is taking its toll. Please take care x
Me too @Katy Lou22. I try not to be impatient with the repeat questions, try to write things down simply so he knows what is happening. My OH was diagnosed in 2012 (progression has been thankfully very slow) but it took me years to even tell our adult children and even longer to tell my friends. I also found the Compassionate Communication article https://www.alzsd.org/wp-content/uploads/2017/11/COMMUNICATION-Compassionate-Communication.pdf very helpful and reading this forum has helped me going forward. I don't know how I will cope when things get worse as I'm sure they will. I tell him I'll look after him as long as I can but when I can't he'll have to go into care - he agrees but then promptly forgets. Yes it is exhausting but sadly I think it gets a bit easier when you accept the situation and try to make the best of it. Well that's how it has been for me - I know my situation is nowhere near as bad as many suffer on the forum as my OH is very quiet and easy going.
