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When reality of dementia hits home - Carers UK Forum

When reality of dementia hits home

For issues specific to caring for someone with dementia.
Most of you will be aware of my dad's passing last week, but this issue is separate to that and hoping friends here will have some pearls of wisdom for me.

It is now almost 3 yrs since hubby was diagnosed with early onset dementia and in that time we have muddled along and found ways to cope, or not cope as case can be sometimes. His cognitive skills more or less all gone and emotions also changing.

Going through this bereavement this week has made it all hit home even more so though. He was always my rock and although he tries, it is not the same.

As eldest and next of kin arrangements have been down to me but the hardest part to cope with has been hubbys moods. He has taken in the news about dad but as soon as I go to do something, go someplace, it is as if I am abandoning him. I take him when I can but not always possible.

He is fine with other people but I get either the silent treatment or accused of neglecting him. This type of situation has been increasing wherein he does not like me out of sight or to leave the house without him.

Our 2 girls have been fantastic, taken time off work to take him out, to distract him but any advice for when we are alone at home??

I cant believe that the gentle man that I have been with since 15 yrs of age, someone who has always been so placid and supportive, could change as much.

He does try, I see it in him, wanting to be helpful, considerate etc, but what comes out of his mouth does not match that.

So difficult for me to put this in to words. Just want to add that this not every day as yet. Some days he is his old self and we laugh and carry on just as much as ever.
Not many pearls of wisdom to give you Rosemary. It is hard to see a person you have known for years and shared so much with begin to become a different person. I saw this with my paternal Nan, she turned from being one of the loveliest, gentle, wouldn't hurt a fly person into someone we didn't recognise at all, she would and swear and hit out, things which would have mortified her to know she was doing. So hard for you and the girls to see hubby/dad change. Sending you much love and hugs. x x
I believe that the negative changes we see in our loved ones with dementia are due simply to fear.

Fear because they know something is wrong, but can't define what.
Fear that we, the one constant in their lives, will disappear or leave.
Fear of being alone in this scary world that they no longer recognise.
Fear makes us all act irrationally and out of character.

It is hard to put ourselves in their place, but try to imagine waking up in a strange place - you have no idea where you are, you have no map to show you the way home, all the people around you are strangers and you don't understand the language being spoken.

So how do you make yourself understood, perhaps you shout at the people around you (like we unintentionally raise our voices when speaking to foreigners) but they still don't understand so you gesticulate, try sign language. All to no avail - you're still lost.

Then suddenly you catch sight of someone you know, perhaps you're not sure who they are but you instinctively know that they care for you so you're not going to let them out of your sight - they are your way home and if they disappear then you'll be lost again.

On some level your Dad's passing has exacerbated your OH's own feelings of loss of the person he was and his fear that you will leave too. He needs lots of reassurance that you are there and not going anywhere, just like a small child needs to know that Mum will always be there.

It will take time Rosemary but as things settle back down to normal you should see a return of the gentle, supportive man you've always known.
My heart goes out to you Rosemary I recognise all of the characteristics in your posting but my situation is with my Mum not my Husband I cannot even start to imagine how my emotions would cope if it were my Hubby (mind you none of us know what is around the corner) but I think Susie's response was brilliant and absolutely spot on - hope things get easier for you very soon my friend xx
Susie is spot on. It is indeed fear. And when the memory is so poor that you cant remember being told where your rock is going (Im only going for a minute - I need to go to the loo) then you are desolate. Fear is also very close to anger. Someone very wise once said to me "if I see someone who is angry for no reason I ask them - what are you afraid of?"
Hi Rosemary,

I struggle with this one too and think Susie is absolutely right. Unfortunately it is a difficult one to resolve.

I watched those video clips you posted on dementia and the one that struck a chord with me is the woman explaining the constant need for reassurance and to break it down into really simple sentences. I tried this yesterday with mum on trip to hospital. "Now I am going to phone for a taxi because we are going out. Then we will get into the taxi to the hospital. ... Now we will go to the eye department .... Now they will test your sight ... etc etc. Practically a running commentary on what will happen next as you might do with a toddler. It did calm her down.

I think dementia sufferers do respond well to routine and sadly, your husband's routine has been shaken by the passing of your dad. Hopefully he will settle down again.
My husband to has early onset dementia and I totally agree that it is routine that matters but unfortunately it is not always possible.

Next week he has to go for a colonoscopy and he is getting in a panic about it, yesterday we went for a pre-assessment and the person who did it had no understanding when he kept trying to ask her questions, some unimportant and irrelevant but not to him and her response was just read the leaflets.
Last night at about 10pm he came and said I haven't got dementia have I dont want to have dementia people get violent with dementia it took me ages to convince him that not everyone becomes violent and that no matter what we would get through it, but sometimes I wonder if we will
It's very difficult, Rea. But you will get through it, and so will I, simply because there is no choice. One day at a time. Don't worry about what might never happen. Denial seems to be all so common with dementia, probably because it is so scary. My mum discusses other people with dementia but fortunately she is fine accoridng to her :dry: . The thought that I might get it one day is indeed very scary, especially as I will be on my own with it.

Hope your husband's appointment goes OK next week, Anne x
Hi All,
Susieq you have a gift in describing this so so well. It is however draining. I have decided this week after Monday to never tell parent about next appointment till it happens to save the anguish /unnecessary fear. Morning sleep so needed but fear of medic related visit stops that and results in bad time for rest of day essentially. Even when knowing reason for behaviour it is very wary at times.
Oral trailing never leaves you not even when going to the toilet. Mood swings etc hard but I find massive discrepancy between days not easy- v.unpredictable. So normal one day or indeed moment and truly confused the next. Haven't had bloods done yet but UTI and chest infection ruled out but yesterday I was so shocked by conversation-very sweet but so not right ie decline. Dr did mention possible TIA but a shock! Today normal apart from fear of stethoscope hurting and hiding from a new person visiting.
Do others find this too?
Rosemary, no words of wisdom from me either I'm afraid but so much wonderful support and advice already offered warms my heart. I remember (sometimes with sadness) my caring days and although dementia was not there, the Mum I though I had changed beyond recognition to the point that I felt that I was caring for a stranger. It was so very hard.

Take care Rosemary. - you do so much for others, both family and our members here and I think you are a very special lady.

Bell x