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New to dementia journey - Page 58 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
936 posts
So glad you have been able to visit him and it was a good one. S&D bugs do make folk lose weight. You'll have to get all his visitors to ply him with treats when they visit. Add his response to the kiss to your happy memories list.

Are you able to go your estranged sister's funeral? When our work colleague was killed in a tragic accident, that felt surreal to me. I kept thinking someone would tell me it was a terrible mistake. I was able to go to the funeral though and that made it real for me and kick started the necessary grieving process for me.


Thank you Melly. It's more the deterioration with dementia that hit me sadly, and looking more like a Dementia sufferer.
I don't know if I will make it to my sister funeral. Haven't actually been told officially. It's rather a complicated situation.
Pet, sending my condolences for the loss of your sister.
Glad you have been able to visit your husband again and had a good visit.
Thank you for posting to me Henrietta. Means alot especially as you are going through your own loss.

Does it matter if you've not had an official invite to funeral?. It's ok to turn up to the service and then just slip away. Shows respect without intruding... and possibly gives her family opportuntiy to reconcile if they want
( no reply needed just for you to mull over xx)
I keep thinking that I should alter my posts title. Not so new to this awful journey. Then something happens that feels new. Although Im finding it less traumatic to make a decision re visiting. The guilt monster tries to kick me, sometimes wins but not for so long.Ive realised that I have to do what suits me and not to be so sensitive if other visitors spend longer days with their loved ones. Just writing this down to convince myself that I have moved forward and the inner strength must be fed.
Pet you're on a journey that you know will end 'at some point' but you don't know when - you can't therefore 'pace yourself'. I found this too with my husband after his cancer diagnosis. So much of one's life is spent 'day by day' and we want to 'plan ahead' but we can't, because it's the disease that is in control of the timeframe. In a way, I think that being faced with a 'terminal' disease - as dementia is, grimly, in the end - shows us how much we take for granted out ability to 'plan the future'. When that is taken away, it can be highly disturbing and disorientating.

So I do think you simply have to 'go with the flow' for what suits you as and when, day by day. The contours may change over time- this may be a period where your visits space apart and become less frequent and less long in duration - but in a few weeks/months time that may change again.

There is NO objective 'right or wrong' - there is only what you feel, and following your instincts I would say. You know you love your husband, you know he loves you, even if that is masked now so sadly by the dementia. You know you are 'doing your best' in a situation where there is no objective best (because that would be a cure for dementia). You know he is having the best care that is possible for him now. You know you also have your own life to live, and the rest of your family. You know you are in 'premature bereavement' and arming your mind and heart against 'the day' when the end of this long and painful journey must come.

I do think, most sincerely, that following your instincts right now is the best thing to do, because it is the only thing to do - there is no other roadmap.

Kindest wishes, as ever, Jenny
Pet, do you ever look at the statistics for this thread? OVER 40,000!!!

It's obvious from this number that you are helping so many people, many may never make a post, but clearly lots are following your sad journey. Leave it so others can learn from it, I'm sure the title is the key to others finding and reading it.

If you are one of the 40,000, why not say Hi to Pet?
Sending hugs at this difficult time Pet.Agree that you should do what feels right for YOU with regard to your sisters funeral.
Hi Pet, I’m one of the 40000 that B.B. mentioned. I’ve followed your’s and your husband’s story over the months. It’s no wonder your feelings are on a roller coaster, we’d all be the same. The help we all find on these forums is invaluable so please keep contributing when you can, under the same heading! We know where to find you then. Hoping you make the best decision, for you, over your sister’s funeral and I’m sorry for your loss. Wishing you strength and a sort of peace. (Hugs)
936 posts