Funny old Christmas

This is the first Christmas without my mum. She had dementia and some of the things she said in the early days still haunt me. But it’s not them it’s the illness please keep reminding yourself of this. Sending you a virtual hug.

Oh Lucky I am so sorry.
Your DD did a lovely thing by making that book for him and I completely understand your need to show the home care staff what he had been like. I felt the same about my DM.
The only thing I can say is that you could try not going everyday and see how you feel. It’s obviously not an easy journey for you and certainly not an easy time when you are there. I’m so glad you have family support but obviously you feel that you are his main contact with the world.
Sending you very best wishes.

My father had PD. He was not on drugs but suffered great paranoia in the last year of his life. Hallucinations, attacking my mother convinced she was a danger. He believed my police officer brother was beating him up.

All we could do was keep offering reassurance over and over. Visiting was torture once he was in hospital.

It is so so hard. Luckygirl. You must do what is right for you not just for your husband, take care of yourself as well

What a lovely picture you paint of your DH Luckygirl. You must have been heartbroken to watch his reaction to the book, but you may never know what emotions it stirred in the inner recesses of his mind. He may have glimpsed his former self and his family and it's important for the carers to see him strong, clever and funny with the people he loved and who loved him.

That was a good idea Lucky because others should try and understand the ‘I was not always as you see me now’ point of view.
BradfordL How terrible for you and your children, you did the right thing, but with how heavy a heart I can only imagine.

So many who have endured or are enduring similar - life can be very harsh. to all.

DD3 made a photo book for him for Christmas with lots of pics of him when he was young and fit - I have to say it upset both me and DD2, but he looked through it with no emotion. However I think it is good for the carers to see the book there so that they can really take on board that what they now see before them is not the husband and father we know. He was a highly intelligent and well-read man in the field of science, an excellent violinist, but above all else had a very quirky and distinctive sense of humour.

My DH was paranoid-schizophrenic for many years and he too thought everyone, and sometimes even I was plotting to kill him.

All I could do was offer constant, loving reassurance that they were not, that I was not and hope that a lucid moment might come when he believed me.

As it never did, after 11 years, when I saw it was affecting my children, I decided to leave for their sakes.

It is unbelievably hard to leave the man you love when you can see he is suffering.
But if there is nothing you can do to help or change things, and no 'authority' is prepared to help or support either, what's the alternative?

Not quite your situation Luckygirl and of course you have to choose your own route but I do feel for your heartbreak, having gone through it, albeit in a different way.

Luckygirl the Bodach is in hospital receiving palliative care, but also has dementia. His pain relief means he’s asleep most of the time, so I spent the afternoon in hospital, then had a surprisingly pleasant evening at son 2’s. Glad it’s over with ( as I am every year!)

So sad and so hard to know what is the right thing to do. Please take care of yourselves and remember that your loved ones are in the best place receiving 24 hour care. Best wishes to all.

So sorry to hear that Luckygirl so very hard for you to hear that, and hard for your poor DH too in believing it.
The nine days leading up to Christmas Day, like Gilly’s DH my DH was in the ICU, and although he is now out and will recuperate over the next two months (am told) he was delusional whilst in the unit.No food plus the cocktail of drugs brought it on, and the doctor said it’s quite usual for the drugs to have that effect.
Dementia though, is a different thing entirely and is an awful thing for both the sufferer and their family.

Having just lost a beloved uncle to this disease you have my heartfelt sympathies . Hw had it for 20 years as he was relatively young with a young family.
The final stages of any progressive disease or illness are the hardest for loved ones as I'm sure you already know.
to both of you Luckygirl and Gilly

A friend's husband is similar to your DH Luckygirl and it's a huge blow. She was exhausted coping alone and getting no sleep, so they advised a home. I say to her that he is in the best place being cared for 24/7 by a team of carers. A gentle man, he is now very abusive and accuses her of having him 'banged up' and holding him hostage.

The NH staff have advised her to take days off and not go everyday, but it's very new and strange and she feels she has to go everyday. Perhaps the only consolation is that they are oblivious to the distress their utterances cause. It hurts because you care so much and it's torture for you. Hugs. x

Oh Lucky it is not getting any easier for you both.
Maybe not visiting so often may help you and him.
My mum has dementia but fortunately at 99 she seems happy still.
I have not been able to visit so often recently and she doesn’t seem to notice.

Just been to see him - he is pleading with me to take him home. If it was for logical reasons I would have to think about what I could do - but it is because they are feeding him minced children in his sausages. Visiting is just agony. I have to put my life into different compartments in order to retain my sanity.

You're indirectly suffering from that hard blow too Luckygirl! It's good that you have some support from the family and at least he's not still at home with you struggling to cope.
Keep on keeping on us all you can do. ?

Thank you for your kind and wise posts.

OH has PD, rather than a diagnosis of dementia. Some of the time he is entirely lucid; others he is crazy. But mostly he is asleep.

You are quite right gilly - a lot of the problems are drug-induced. They have tailed down his PD drugs, going from 3 drugs to 1 - and even this is being tailed off too. The side effects of the PD drug is paranoia; and the side effects of the drugs he is being given to curtail the paranoia make him very sedated.

They say they cannot take him off the PD drug completely as he would be unable to swallow - he has already lost all mobility, cannot stand or turn himself over in bed. And mostly he needs to be fed as he cannot control his hands well enough to get food to his mouth - although some days this is better than others.

Sometimes I have the urge to get all the drugs and flush them away. But I can only be guided by those who know what they are doing - I hope.

The decision as to whether his paranoia is entirely drug-induced or part of the PD progression is still an open question and difficult to disentangle.

I do hope things are improving for your OH gilly.

I knew this Christmas would be challenging - I am just so lucky to have family close by and on the other end of a phone.

It is also very hard to know when to visit/not visit. I find that it takes up most of my day when I do - and I go virtually every day. I do not want him to feel abandoned. Poor man - life has dealt him a hard blow.

*Luckygirl how sad, hugs and

Luckygirl so sad. My auntie who had dementia used to say similar things about family members. She would have been mortified had she realised what she was saying. I feel for you, can only send a big hug

Your poor dh, Luckygirl, so sad that paranoia is disturbing him so much.
And poor you, having to witness it and being unable to help him.
Heartfelt sympathy is all I can send. x x

a very difficult situation, no wonder the poor man does not want to leave his room with those sort of thoughts running round his head.
agree with gillybob could be his tablets.
dementia is a cruel illness on the family. Science seems to believe they don't know they have it.
As for splitting the time. Going to join in the party and get him out the room seems fair enough to me, he will not know it is Christmas, just another day to him. Less stressful on you that way as you need to consider your own health first and foremost, which us woman never seem to do.

With all the awful side effects of some drugs it makes you wonder if they should be withdrawn from your DH's Gillybob and Luckygirl, or would their behaviour become even worse do you think??? Dementia is such a cruel illness and there are different forms of it. I believe Lewy Bodies is the form which causes terrible hallutinations.

Lucky girl, you are doing the very best you can, it must be the hardest thing in the world seeing your beloved husband get so upset. From what others say it appears this is normal behaviour for Dementia patients, but that doesn't make it any easier for you to cope with. ? You must be so tired, just try and make time for you.

My mother was in a home

She was convinced there was a kill room where residents were taken

We assured her there wasn't

She seemed placated but the next visit would have her saying the same thing

Seems to be a common occurrence with dementia patients

Very sad and little we can do

It’s so hard lucky. Is there a right and wrong? You tried for a balance, suspect I’d have done the same. Gilly your post is so compassionate, you write from the heart, nothing ‘messy’ about it. Love and a hug for you both.

lucky.