New to the forum

Hi My name is Audrey and I am carer for my husband. We are both 70yrs. He has been diagnosed for 4 years and we have a great pd nurse. However as his condition is deteriorating and the daytime sleeping is continuous (But not the night time) I am battling a bit myself with feeling very low. Don’t really know how to handle this. Like many it is not the retirement we expected. Am I being pathetic?

hi Audrey have you thought of having carers in to sit with your husband for a few hours so you can have a break
don,t know if you have help now or not but definatly worth looking into as you need some time to yourself

Hi Audrey
Please do not even begin to think you are pathetic - you are not. You are coping with something totally unexpected and not planned for in your retirement years. And yes, your life has of necessity changed.
I have only recently received my diagnosis so am in the process of changing my life. My biggest change being unable to drive has taken away my independence. It has also taken away the ability to continue to take out others disabled by various medical problems. But many of my thoughts that had become negative I am now turning to positives.
I agree with the suggestion that you investigate the possibility of someone to sit with your husband during his daytime sleeping hours but be careful that this does not leave you with a feeling of loss as to what to do with yourself so I would suggest you start my finding an interest you would like to start/continue with. The library is often a good starting place with events like ‘knit and natter’. The knitting could continue at home. Or a book club where you all read the same and discuss it’s merits - again would continue at home. Gentle exercise class but fun, not silent.Do you use computer or mobile phone? I play scrabble with my cousin on our mobiles.
Having sorted some interests you would then know how much help you would need from a ‘sitter’ and what hours.
Hoping this is of some help to spur you on to bigger and better things you never thought would happen.
Thinking of you - Linda

Thank you for your replies. I do use a computer and keep in touch via this. My children and grandchildren do their best but they all work so time is short. Also I think that coping with personal care for their dad is difficult. John has severe arthritis which means he can do very little for himself. We live in a small isolated village and I do see my neighbour for a chat but we do not have shops or library etc without travelling. I have considered a carer but don’t really know what I would do with the time for myself. I must look into this more. John’s brain works 100% so he is aware of the stress it is causing me although I try not to show it. Talking on here I am sure will help. Thank you again

Hi Audrey

I can understand being in a small isolated village does not help you expand your horizons but perhaps you could let us know what interests you regardless of whether you have the expertise or not. This would enable other forum users to perhaps make suggestions how your interests could become activated possibly in a way not thought of before. Just by way of suggestion I know my granddaughter (i’m 72) receives a monthly baking box. Also I have given up painting and have paints and paper I no longer require. I shall continue my drawing. You may have a hidden talent. In fact, I am sure you have. I volunteer for an alzheimer group but searching on-line for things they can make or do (e.g. have found and send them details of making paper daffodils). You don’t have to be local to them as it’s all on-line. Another thing I do on-line is volunteer for a county wide dog organisation by keeping their membership details up-to-date. Send us your interests and we’ll see if we can expand on them for you.

Best wishes