Watching Dad suffer

[gill123]

Hello

I am new to the site and not sure why I have registered, maybe I am just wanting to speak to people who understand the huge amount of stress, strain, suffering and immense upset Dementia causes.

I will try to keep my story short as I could be here all night with tales of what we have all been through as a family over the last 6 months. My Mum and Dad have been married almost 50 years and never spent a day apart. My mum had a triple heart bypass in August last year and ended up being extremely poorly and in hospital over 3 months. During this time of separation my Dad found it extremely difficult to cope and started hallucinating. We thought it was just stress related. Apparently not, they have diagnosed him with Lewy Body Dementia. Maybe it was a coincidence it happened whilst Mum was in hospital, or maybe the stress triggered it, I don't know.

A few weeks after my Mum came home in November, my Dad was admitted to a Mental Health Unit as the stress he was causing my Mum, himself and the rest of the family was immense and we were no longer able to cope alone.

To cut a long story short he has rapidly deteriorated, the drugs they are giving him aren't working. His hallucinations and delusions are so vivid and immensely distressing for him and also us, we are all so devastated by this illness and I feel so lost, helpless, sad, angry and totally and utterly devastated by the destructive nature of this disease.

My Dad is no longer the happy, chirpy, witty and extremely friendly guy we all knew as the disease is taking this all away from him and its just not fair. Why my Dad? He did not deserve this. I can't stop crying - it has taken over my whole life. I feel so helpless and hate it every time I have to leave him at the Unit. He sobbed so much tonight as he thinks he is about to be killed for something he has meant to have done. It's just so very, very, very sad.

Thanks for reading.

Gill

 

[cragmaid]

Gill hello and welcome to the "you are not alone" gang. I cannot help with advice, I have no experience of what you are going through, but I can tell you that you will not regret registering with TP. There is a wonderful support to be had from a stack of caring people. Keep in touch Maureen.x.

 

[Reb]

Losing a parent to dementia is the greatest loss of all, a living hell. You have my sympathy. The devastating deterioration in your father must be a huge shock to you. You must get a carer's assessment of YOUR NEEDS, they are of the utmost importance at this time. **Hugs**

 

[piedwarbler]

Dear gill, welcome to TP. My mum spent months in a state of nameless terrors that were harrowing for me to witness, I was thankful when that stage passed. I can hope and I pray for the same for you. I know a little of how you feel. Sending love, xx

 

[sleepless]

Dear Gill, I can sympathise with your feelings of anger against the disease. I too have watched as over fifty years of married life together was cruelly ended with separation and then my mother's death.
I think it is the worst aspect of these illnesses, to see husbands and wives parted by the sheer impossibility of staying together. I used to literally scream at fate for what it did to my parents (there was no-one near to hear me, luckily.)

I hope that this is just a phase for your father, and that these hallucinations will cease, either through medication or the progression of the disease.

You can always tell it like it is here on TP, there is always someone who understands.

Kindest regards,
sleepless

 

[apple]

Dear Gill,

I'm so sorry to hear about your Dad, your post touched me and I so understand the feelings of helplessness with this wicked disease. TP is a fountain of knowledge and will truly help you as no one from outside the 'dementia' world can. There a quite a few people on this site who have partners/parents with Lewy Body Disease and they will no doubt give you advice.

My own Dad has Vascular Dementia and is now in the latter stages but I'm on this site nearly every day and don't know how I would have managed without it. Keep posting and look after yourself.

Lynn

 

[scarletpauline]

What a sad situation, I can only send you my love and hugs, and hope things do get better, keep posting, love Pauline xx

 

[Heather777]

Gill, wanted to say hi. My dad to was diagnosed and within a short space was in the mental health unit. It is such a shock to see things go downhill so fast. This type of progression makes it hard to 'come to terms' with the disease and the impact is has on you all.

I wonder if there were signs before your mums op but as his wife she covered these up? My mum too had dementia and we were a couple of years into hers. This enabled us to both have an understanding of the disease but also great fear and trepidation about the path we were going to be on.

All I can say is that there is no getting off this merry go round but I hope that you have a supportive mental health team. If you don't understand then keep on to them til you do.

You will suffer many moments of sadness and loss so don't be too hard on yourself when you are feeling emotional.


Heather

 

[Coffee]

Hi Gill. I know exactly what you mean. I went through the same feelings when my dad was diagnosed with VD 4 years ago. He is now in the middle stages of the disease.

I read somewhere that you do your grieving at the time of diagnosis - and I think that's absolutely right. I love my dad dearly but the man he is now is not the one he was 10 years ago, and I miss him dreadfully.

However, 4 years is a long time and I am now very pragmatic about his illness. Other people ask me how I cope but in fact, I've done all my crying.

Hope that helps a bit xx

 

[gill123]

Thanks for all your replies. I does help to hear that we are not alone in this nightmare. I do agree it is difficult for 'outsiders' to understand what you go through.

Going to see my Dad shortly and dreading it. He was so very distressed last night I fear they may have had to sedate him again.

Thanks again for your replies, will be back soon x

Gill

 

[invisibility]

Gill i can't imagine how hard that must be. My dad is very confused and sees things - but they are not distressing to him. Only us really as they aren't frightening things.

It is so hard to see your father disappear - i am going through the same. I am living wiht my parents too (and i'm 34... ha), and can't get out at the mometn becuase i can't afford it.

I really hope that your dad's suffering passes and that he can find himself in a more peaceful stage. For your sake too - massive hugs, it is a terribly hard thing to cope with.
xxx

 

[ceetee]

Dear Gill,

just wanted to say hello and I am thinking of you. Hope that awful phase will soon pass. Best wishes, Ceetee x.

 

[gill123]

Thanks again guys for all your replies it's very comforting to have your support.

They did sedate my dad last night as he was being violent towards the staff. They had to empty his room of all his belongings as he kept picking things up to throw.

However, when I went to see him earlier on he was very calm. Don't get me wrong, he was still talking nonsense and I won't go into detail about his stories and what he sees happening as it is very, very disturbing. But, he was not at all distressed like he was yesterday and was very matter of fact about what has happened. I also managed to get some decent conversation out of him which I haven't been able to do for a week or so due to his distressed state.

The staff said he had refused his medication today so they did not force him to take anything as he was quite calm and they didn't want to upset him. So he had no meds today and for the first time in a while we had a decent (ish) conversation.

I went home feeling relatively calmer and hoping he would be the same tomorrow. I then get a phone call from him at 10pm and I could hardly understand him. He was slurring his words saying they had give him a tablet and he couldn't talk properly. My question is this - are the drugs doing him more harm than good? If he was drug free when I was with him and managed to speak fine, then how come shortly after taking his meds he is unable to string a couple of words together???

I feel like telling the staff to leave him alone and not to give him any more meds and lets see how he gets on over the next few days. I am not medically qualified so obviously wouldn't suggest this, but it is playing on my mind that the drugs may be making him worse.

He was taken of his anti-dementia drugs as they were not effective so he has not has these for a few weeks. He has been taking an anti-psychotic drug (Quetiapine) which they increased just recently. They have now stopped this due to the increased distress and are now planning to start him on Aripiprazole. I have read that in Lewy Body these drugs can have severe side effects and this is what worries me.

Sorry for the rambling on, just wondered if anyone had any thoughts or similar experiences with this?

Thanks, Gill x

 

[Jeanine]

thank you for this post - after months of reading this is the first time i have felt i need to get involved.

I am in a similar situation, my Dad as VD and I am helpless and angry and scared. I am an only child and think I need the support of this forum and hope to be able to offer that support to others too.

It is so darn hard

 

[juliejo]

Morning.

Hi Gill,
I just had to post when i read your posting about your dear dad.
I am not in the situation you are but i can so relate to how you are feeling right now.

My parents will have been married almost 50 years and my dad is 86 with Multi-infarc Dementia. He's had it since he was 58 and the strain, stress etc it taken on our family having to watch dad is heartwrentching.

Havent slept much myself last night but had to answer you and tell you i am thinking of you.
God bless.
Julie.

 

[BeckHux]

Hi Gill, I know how you feel. My Dad has VD, he is in the assessment unit after an agressive episode. He's been there for 3 weeks now and they've just changed his drugs due to side effects from the previous one.

I always google the drug he's been given and whatever anti-psychotic they give him, there is always a warning about not giving to dementia patients. At first I was horrified but after finding out more I realise that it is common practise.

My Mum couldn't cope with him while he was on his last medication which had no effect, respite asked us to remove him after less than a day. So, it is an awful thing but I've finally realised that we simply have to accept that he has to take medication, to calm his anxiety and agression, and for the sake of my Mum - in the hope he may come home again.

Hope this helps x

 

[gill123]

Jeanine your words are so very true - "it is so darn hard", and yours too Julie - "the strain, stress etc it taken on our family having to watch dad is heart wrenching"

It's soul destroying and it hangs like a black cloud over the family. I'm sat here now unable to sleep, just got back from Mum's as felt guilty leaving her alone tonight so I crept out of the house when everyone went to bed just so I could comfort my Mum and have a chat and a brew. I know this helps her a lot as she hates it without dad being there.

My Dad had a 48 hour section placed on him on Friday. The Dr reviewed him on Saturday and decided not to make it a permanent section as he did calm down a little. However, he is being re-assessed daily.

Was horrified when the word 'section' was used, but I don't think it is as scary as it sounds - is it? The way I understand it is that he loses his rights and they can force his meds down him and he is not able to leave the Unit - is this correct? Are there any other implications?

Think I better get off to bed and try and get some sleep - at work in the morning.

Thanks for all your support, it is very much appreciated x

 

[Jeanine]

hey gill just hoping for a progress report from you since your post. I hope things are better.

I understand the black cloud hanging over the family I am just so sad all the time and so helpless to change things. It helps so much to know others are going through a similar thing

 

[gill123]

Hi Jeanine

My dad has been placed under Section 3 of the MHA. I think the reasoning behind this really is because he kept refusing his medication.

We have been really pleased with his progress though over the last couple of days - he has been really calm, not scared of anything and no longer believes he is in danger. I am not building my hopes up as I know this disease is so unpredictable day by day, or even hour by hour. However, it has been so nice to sit and have a chats with my Dad without him being in fear of his life.

Dad's memory has not been affected as yet so I've been having good conversations with him about our holidays as kids, how Mum and Dad met, Dad's first job, the good old days!! So it has been nice to get part of him back for a while.

Just hope it keeps up as we all feel a lot less stressed at the moment knowing that he is more settled in himself.

Thanks for asking, will be back soon to update further x

ps - try not to be sad all the time, you must try to have some better days for your own sake, otherwise you will end up being poorly too. (This is the advice everyone keeps giving me!!)

 

[gill123]

What a difference a day makes with this horrible disease. My Dad is back to being really confused, hallucinating and not really able to make much of a conversation.

I took a pile of photos in yesterday of old times and he remembers exactly when and where they were taken and he recognised everyone, even all the names of his old buddies from the 50's. However, he had his mind on other things so wasn't really that interested in chatting about them. Maybe I will try again tomorrow.

Although he is confused and disorientated, his hallucinations are not frightening at the moment. He now thinks he's won a million on the lottery and he needs a code to access the money! I just play along with it and agree to do whatever he wants me to do with his 'money' when he eventually finds it.

Not sure if this is the right thing to do or not, but I just think disagreeing with him would irritate him even more.

Hopefully he may be a bit more interested in the photos tomorrow, and maybe a bit of a conversation too!

Here's hoping x