Just need to vent. Know so many others are there in the same mire. No sleep at all until 2am last night. Husband calling constantly. Gave him a tablet, he slept until 4. Up again. Slept until 5.45. That was it. I'm past talking at present. I'm grieving for him, for me, for our life .. where did that go. He's in respite for two nights now. I've had so much extra put on my shoulders this week. I feel like some wild woman in a foreign world, trying to make my way but not knowing how to. I'm doing my best. It's not enough, it's never enough, dementia rules. I'm inching closer, I know we are, to the day I have to face that he goes into care because respite won't be enough for me to stay sane. I read on TP all the trials and tribulations of those further up the road with your loved ones and my heart bleeds for you, rosebay, Pamann, Kevin .. so many others. At least I've had the time, space and privacy to howl today and rage against this god awful disease, for all of us. Love to us all X
Night from hell
- Thread starter Florence.
- Start date
I am afraid.
I don't even know what to say. Reading this blog... all of them ... has made me so scared to actually admit that I am on the same journey. You sound like me. I am not sure where to turn or how to live. Tired and petrified. I wish I could give you some advice but you see, I need yours.
I don't even know what to say. Reading this blog... all of them ... has made me so scared to actually admit that I am on the same journey. You sound like me. I am not sure where to turn or how to live. Tired and petrified. I wish I could give you some advice but you see, I need yours.
WE all seem to be having a huge dip down with the dementia journey at the same time. I thought I was almost a prisoner in my own home before, but after yesterdays trauma (David had a seizure) I can't imagine how life will be now. Even our little dog is in a state after what she saw and then the ambulance and all that ,and then doctor a bit later. I posted on this yesterday so won't go into all the details again. Now I am thinking when he feels better how can we even do a dog walk. I will be so worried it will happen again. In the meantime Florence you have my sympathy and my thoughts are with you. It is the most awful life we are all trying to live. I hope things are better today.xxx
Although we are only at the beginning of this journey. I am already angry with the fact that OH's illness puts a stop on my life too.
I cannot make plans, our retirement plans are shattered, I have to accept strangers poking thier noses in, I get told by well meaning people whats best for a man they've know 5 mins and Ive known nearly 50 years..
Dementia robs us of the one we love , it robs them of a future ( and eventually their past) and it worst of all it robs us of hope.
Its a rotten thing all round.
I cannot make plans, our retirement plans are shattered, I have to accept strangers poking thier noses in, I get told by well meaning people whats best for a man they've know 5 mins and Ive known nearly 50 years..
Dementia robs us of the one we love , it robs them of a future ( and eventually their past) and it worst of all it robs us of hope.
Its a rotten thing all round.
Hi Marinette
I'm glad you've found TP and started to post - for me too it was scary at first to read about others' experiences and to face what was happening to my dad
I have gained so much useful information here and a massive amount of support from members walking along this path too - I've benefitted so much and as a result been able to support my dad much better than if I'd had to cope alone
so I hope TP will be a comfort to you as well as a support - actually I know it will be - do stick with us and keep posting
very best wishes
a warm welcome to TP
I'm glad you've found TP and started to post - for me too it was scary at first to read about others' experiences and to face what was happening to my dad
I have gained so much useful information here and a massive amount of support from members walking along this path too - I've benefitted so much and as a result been able to support my dad much better than if I'd had to cope alone
so I hope TP will be a comfort to you as well as a support - actually I know it will be - do stick with us and keep posting
very best wishes
Sometimes a post comes up that makes me think " I wish that could land on the desk of every single person who has control and influence over health and welfare in this country."
Yours is such a post.
In the face of the truth, that dementia does change everything, and cannot be cured, it can be hard to think of anything positive sometimes.
Having seen what my mum's dementia was doing to my parents, when my husband was diagnosed in 2003 I was devastated and heartbroken.
There are short fixes, of course -- respite, sitters, day centres etc. But increasingly I believe that getting through the anger to a stage of acceptance can help the carer, and enable them to cope better.
I experienced a mercifully short but huge outburst of anger, at fate, God, whoever....but after that was determined to make the most of every good moment, hour, day. As it turned out, we are now in year 14 since diagnosis, and I still have the same philosophy.
But I have been fortunate in some ways, haven't had to deal with a lot of the worst aspects of violence, aggression etc. and I still have my husband at home with me.
We all have the journey to make, and it is do different for each of us, but always on this forum there will be someone who understands something of how you feel, your frustrations and fears, and the good moments when briefly dementia seems to let go and there is a glimpse of how it used to be.
I feel for you all,our D journey is over sadly, but in hindsight the only advice I can give is take each day as it comes, don't second guess the future. Get all the help you can and make sure you've got lasting power of attorney if you can. Wishing you all some peace. xxx
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Thanks Jinx. I try to take each day as it comes but we all know there are days when we wonder whether we can keep going and carry on. Thank you for your understanding and support.x
Thanks Trisha. After two nights respite I'm feeling much better and more positive. Having gone from worn out I now feel able to think more clearly and take positive decisions about the way forward, which I hope will last! Thanks to everyone who posted for their supportx
So glad you are feeling more positive, Florence. This is how respite should work, for your physical benefit, and to give you time to think.
Thanks sleepless. I'm determined not to go back to the edge the way I was on Monday. We have another two nights next week so time for me again. I've loved just having the house to myself and,not getting up at night.
This sounds just how I feel too, Zana. Love and warmth to you in these horrendous times. Don't allow it to rob you of all hope - there will be corners of sunshine and respite, plus the support of others who understand. Take all you can get.
Thanks , we do try to get every bit of fun out of life we can.. We are determined to say yes to as many new things and as many fun things as we can before this illness makes it impossible for us.
Re- adjusting and learning to re-evaluate life plans is hard though.
