Gransnet forums

Chat

Funny old Christmas

(30 Posts)
Luckygirl Thu 26-Dec-19 23:30:51

First Xmas since OH went into NH. Lovely moments with DDs and families; and moments of struggle when visiting OH and dealing with his paranoia. Two very different days from the Christmases I have been used to - but thank goodness for family.

Did not quite know how to divide up the time - felt I should be with OH, but he was asleep a lot of the time. NH was holding a party when I arrived and he had been got up and dressed to join in (he does not usually leave his room - his choice) but in the middle of it he told me they were all celebrating that fact that they were planning to kill him - so that put a damper on things a bit. What a sorry state to be in.

How did others with partners in homes divide up their time I wonder.

Namsnanny Thu 26-Dec-19 23:50:46

Luckygirl ...I haven't been in your position, but I have looked after my mother who was saying similar things, and its such a worry.

Its very stressful and I'm sure you did your very best for him.

I'm sorry I don't have any helpful answers. flowers

gillybob Fri 27-Dec-19 07:03:28

Oh Luckygirl .

I suffered a few weeks of my DH’s paranoia and delirium after he had been on LS and can honestly say it was the most upsetting time of my life . Listening to someone who truly believes (in their own mind) that “people” are plotting to kill them and hurt them when there is nothing you can say or do to convince them otherwise is just the worst thing.

I’m not sure what approach you take, but my DH’s doctors and nurses always advised me to correct him (even though he didn’t believe me) that it absolutely wasn’t the case and not to give in to his obsessive ramblings. (I’m hopeless with words, it wasn’t said so cruelly).

Fortunately for me my DH just seemed to snap out of it all one day and although he still mis-remembers some things “that happened” I am able to talk him through it and he accepts that it is his mind playing horrible tricks on him .

I really feel for you and your poor husband luckygirl . He must be living in a nightmare convinced that people are plotting against him . Poor man.

Probably not the right thread but I read up on a lot of the drugs my DH was being given in ICU and found that the side effects of some of the drugs supposed to keep him calm can actually cause paranoia! Is it possible your DH is on a cocktail of drugs that are making him worse?

In answer to your question . I honestly don’t know what I would have done in your situation . I only know that in the almost 3 months my DH was in ICU I spent most of my time there with him and neglected myself, my family and my work too. In hindsight it probably wasn’t the right thing to do and much of the time my DH didn’t know whether I was there or not or even who I was .

“We” are only one person after all.

I’m sorry not to be much help, I felt like I just had to acknowledge your post in my own messy way.

I do hope things get easier for you lucky, I truly do. Life can be so cruel sometimes. xx

Urmstongran Fri 27-Dec-19 07:42:27

I have just read your post Luckygirl and although this situation doesn’t apply to me I didn’t want to just read and retreat.

These are for you dear lady 💐 and these are for you gillybob 💐

kittylester Fri 27-Dec-19 07:49:59

What a lovely post gilly!

I hope that despite everything, lucjy, you day was less fraught that previously! brew

kittylester Fri 27-Dec-19 07:52:47

lucky.

cornergran Fri 27-Dec-19 07:58:54

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.

Oopsminty Fri 27-Dec-19 07:59:06

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

Sparkling Fri 27-Dec-19 08:10:58

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.

travelsafar Fri 27-Dec-19 08:12:16

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.

pooohbear2811 Fri 27-Dec-19 08:15:59

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.

Witzend Fri 27-Dec-19 08:55:10

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

BlueSky Fri 27-Dec-19 09:25:05

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 flowers

vena11 Fri 27-Dec-19 10:07:57

*Luckygirl how sad, hugs and flowers

Luckygirl Fri 27-Dec-19 10:33:13

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.

Jane10 Fri 27-Dec-19 12:34:59

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. 🙏

Luckygirl Fri 27-Dec-19 16:41:40

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.

dragonfly46 Fri 27-Dec-19 17:14:44

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.

Ginny42 Fri 27-Dec-19 18:16:46

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

PamGeo Fri 27-Dec-19 18:33:42

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.
flowers flowers to both of you Luckygirl and Gilly

lemongrove Fri 27-Dec-19 18:48:13

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.flowers

Barmeyoldbat Fri 27-Dec-19 19:08:51

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.

Daddima Fri 27-Dec-19 19:19:39

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!)

BradfordLass72 Fri 27-Dec-19 19:55:16

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 Fri 27-Dec-19 22:16:01

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