Desperately need advice re Dad's illness

LegacyUser

Hi all,

I am in a desperate place at the moment and badly need advice. Will try to summarise and keep it as simple as I can.

My dad is suffering from lewy body dementia for over a year now- in a lot of ways it is more serious than Alzheimer's and it occurs in some people who have Parkinson's disease which my father has had for many years now.

We were lucky before the dementia set in as before this the Parkinson's was at least manageable, there were limitations for Dad but his brain was overall good.

I had been Dad's main carer up until a year and a half ago in terms of getting his medication, food shopping, bringing him places, making sure he was happy, etc. and as at that time he didn't want anyone living at home as such and he was pretty good anyway I was able to visit him every weekend, which I did, hardly missing a single weekend and this was enough to keep it all going well.

I have three siblings. One very young so I don't expect him to be as involved but let's just say that my good relationship with my sister previous to that is now at an end for good as a result of how little she did for Dad. That's another long sad story but one I have to accept. One of the biggest disappointments of my life though.

However about a year and a half ago Dad had started not eating properly and we weren't sure if he was taking his medication properly. I arranged for carers to call in to him 4 times a day to cook and give him tablets, etc. and again this was working very well. We had the best neurologist in the country looking after him and he had a great mix of tablets to suit him. This is the situation last summer.

Sadly I got a really good job offer which took me to the north of Ireland and I had to accept it as my careers had been stuck in a rut and I am at the age where I just needed to get this going before I'd lose the chance. I thought since Dad was doing so well and since I would be home at weekends (but maybe missing some) that Dad would still be okay and would be happy that I was going for this job. And he was.

I was delighted at the time when my brother took over the care (he had hardly been involved before that apart from visiting at weekends, and not all, coming and going) but he is supposed to be intelligent and I thought this was a lucky stroke and while he has done some great things this is where it all has also all gone so horribly, horribly wrong.

First off I have to say that even though I'd had a great rel with my other brother and sister, I haven't had with this brother who took over the care. I still trusted him though.

What he did next was this. He took Daddy away from his neurologist who had been brilliant up to that, and put him in with a care team in a regional hospital with the main person and doctor there being a consultant for elderly people, a psychiatrist basically. He then had Daddy take a memory test and just because he failed that (he did also fail the one the neurologist gave him but that seems to be an inconvenient fact for my brother) he discredited the neurologist and tried to say that dad developed severe dementia under his watch! He went with this new team who introduced a patch called Exelon which is meant to improve cognition and apparently my brother saw a great improvement in Dad in the four months from my leaving up to Christmas.
This, I maintain, is completely not the case. Dad was consistent and level in all that time leading up to Christmas and I do not give any credit to this patch.

Now what happened after this is factual and isn't one person's opinion against another's. This new doctor overprescribed the medication and doubled the dosage of the Exelon patch and at the same time forgot to take Dad off the medication this was meant to replace. So, what happened is that my father lost all sense of anything and was admitted into a dementia/alzheimer's centre for one week as he had gotten aggressive and more importantly hadn't a clue of what was going on. Couldn't speak, couldn't understand what we were saying to him, etc. and this had never happened before obviously. It was a very hard time that week or two and I thought we were going to lose him completely. I let this go as I put it down to one human error and I made a big deal about it but my brother has never acknowledged this and even credits this doctor with giving Dad more quality time!!!!!!!!!!!!! Incredible. I just can't believe he would even think this.

This doctor visits Dad every so often and the psychiatric nurse in the team does most of the visitations and updates the doctor, etc. They don't change the medication much so this works. They have cut off the neurologist from what I can gather and as he is can't visit Dad we can't bring Dad there.

We didn't get power of attorney sorted out in time so no one person has the overall say in this matter but on things such as medication we have a voting system and sadly my sister sided with my brother as she normally does, and my little brother also went with them. So Dad has been on this patch ever since, albeit on the lower dosage again and the other one removed.

I have left the responsibility with my brother as I had been the main carer for all those years up until then and needed to move my life on. I have also met someone in that time and am now engaged. None of that would have happened if I hadn't of loosened my grip. But I also now feel responsible for what has gone wrong as I would never ever have moved from that neurologist to the hospital team as my brother did as I know deep down they wouldn't have the same know-how. I trusted them all and I got it wrong.

My father is now doing okay enough but I'm worried he is getting too much of one of the sedation drugs and I now need to get in touch with the doctor. I don't want to contact this team to be honest but what can I do?

Also, going forward, I can't live with this set-up but what can I do to change it? And, am I too late?

Neyite

OP- Posters here cannot offer medical advice.

However, I'm happy to leave the thread open for discussion on non-medical suggestions on how to manage your fathers illness.

There is also a Carers forum, where you might find useful information.

Lorna123

OP I would not be qualified to offer medical advice, but from what I can see from your post you are blaming yourself for the deterioration of your father by not being there for him and I don't think you are being fair on yourself. You did your best, did everything you could do while you were able and that is a credit to you. You had a duty to yourself to get on with your life and because we all differ your brother did what he thought was best for your father when it was his turn to look after him. You cannot control what is happening in anyone else's life so you have to let go, knowing that whatever happens now is beyond your control.

I am sure that your father is comfortable and he was always going to deteriorate sooner or later, so never feel that had you been there all along none of his symptoms would have changed. You are feeling sad because your father is losing his grip on life but that comes to us all and nobody can stop it. I am sure that your father is happy that you have gotten on with your life as this is what he would have wanted for you. From where you are you cannot control what medication your father is getting whether you speak to the medical team or not. They will do what they think is best, and you have to accept that. It is hard watching someone else take care of your father and not doing what you would like to be done, but there is no guarantee that you are right and they are wrong. I looked after my parents when they were dying and I often have regrets that I could have treated them better but at the end of the day you just do what you are able to do at the time. Sorry I can't help you more.

Star Lite

hi Im quite a similar situation re medications with my father and a very similar diagnosis/situation!! please feel free to Private mail me if possible thanks

Esoteric_

Hi OP. I can't give medical advice, as I'm in no way qualified, but I felt I had to reply to this thread.

My grandfather recently passed away as a result of dementia. Up until the point when he went into a care home, myself and my younger sister were his main carers, along with my grandmother. Eventually, he had to go into a care home, because he was a danger to himself, but we still visited every single day.

Watching somebody you love deteriorate is hard, REALLY hard. I don't think a single day went by since he was diagnosed, where I didn't think about him, worry, get upset, stressed, you name it and I felt it. Unless you've been there (which you have), it's impossible to describe what it's like to see somebody you love so much just disappearing in front of your eyes.

With my family, one of my sisters didn't do anything really for my grandad. My dad helped a hell of a lot, as we're a very close family, but none of my father's brothers (my grandad's sons) did anything to help, let alone visit. Once my grandfather got to a stage where he was starting to forget people, they just stopped visiting, stopped calling my gran, just distanced themselves, basically.

I was angry about that for a long time. How dare his sons leave it up to his young grandchildren (I was 17 at the time, my sister was 15) to look after him and my grandmother (she's physically in a bad state due to old age)?? They didn't care, they didn't visit, and the very odd time when they did enquire about him, they made useless suggestions which they tried to force as decisions, much like your brother.

Thing is, it's grief. I cannot commend you enough for looking after your dad so well, I really can't. I know how heartbreaking it is. But while you're managing to put your grief aside to look after your dad, your siblings simply may not be able to. My older sister couldn't, and it kills her that she didn't spend much time with him before he died, but mentally, she was not able to cope with seeing him like that, just like his sons weren't. Every single one of them feel awful regret over it, but I've come to realise that it's not their fault. We all react to grief differently.

Personally, I'd be like you, OP. If I'm upset over something, I just get on with things as best I can, no matter how much it hurts. We can't all do that, though. We all have our different ways of coping.

I know you're angry and hurt, and I can 100% see why. It sounds as though your brother was struggling to take on the role of carer, couldn't cope, and tried desperately to find a way to 'fix' your father, even though with dementia, obviously it cannot be 'fixed.'

As hard as you're finding it right now, I can guarantee you that your siblings are finding it just as hard. No, they shouldn't stay away, yes, they should help out more, but maybe they just can't cope with doing that right now?

I wish you all the best, OP, and I'm not trying to take sides on this. I was in your position, and I understand 100% where you're coming from.

artwellington

Hi there,
I can realize your sense of dismay and frustration with you fathers care. Longterm chronic neurological disease like Parkinson's disease dementia / LBD isn't at all easy to care for and you have my respect and the respect of the readers in this forum for your work.You have spent many years caring for your father and no doubt have made personal sacrifices during that time to do so. From reading between the lines, you believe that other siblings like your brother 'hardly visited at all' prior to your move.

Since your brother took over the care, you perceive that things have changed for the worse in that eighteen months. You cite the fact that your father is now on medications and has an old age psychiatrist and had an episode of delerium last year as evidence for this.

Dementias aren't static - they change, and no doubt your fathers cognition and behavior has changed over that time frame. The referral to an old age service is a godsend. They are the specialists who look after dementias in the community. They also have better access to OT, social work and community than a neurology opd - even if he was the best neurologist in the country.

From reading your letter, I sense that you have your own difficulties with members of your family - definitely your younger sister and also your brother. Its all too easy to allow such feelings colour how you feel about the situation. Its even easier to unconsciously bring such feelings to your interactions with family. I would strongly advise against this. Your father needs ALL of you pulling together at this time. Whether you like it or not your brother is there more often for your father than you can. If you feel your father is over sedated then chat with your brother and sister about. Don't go behind their backs - for a start you mightn't know the full story. Parkinson's dementia and esp lewey body disease is strongly associated with terrifying hallucinations and delusions - and he might just be on tablets for this.

Good luck but stick with the family.
Artwellington.

LegacyUser

artwellington wrote: »

Since your brother took over the care, you perceive that things have changed for the worse in that eighteen months. You cite the fact that your father is now on medications and has an old age psychiatrist and had an episode of delerium last year as evidence for this.

Hi. My father has been on medications right from when he was first diagnosed with Parkinson's. Medications changed gradually for this itself but more so when lewy body syndrome was diagnosed- and this was diagnosed by the neurologist. The neurologist understands he can't magic away all of the hallucinations, etc. and so had kept Dad on the tablet that had been keeping him as good as you can expect in terms of hallucinations, confusion, etc. , with other tablets for parkinson's and sedation. There has always been a mix of tablets. The 'episode of delerium' you refer to was not 'delerium' at all. It was a week, and more, of my father not recognising his own brother (had never happened before, hasn't happened since) and of him not being able to say one coherent word. He actually sounded doped. And, he had been. The new consultant for the elderly had, by mistake, left him on the old tablet that deals with the hallucinations, while at the same time prescribing a new drug in that same category, and doubling it. Of course Dad lost the plot. He had already shown a history with the neurologist of not being able for a double dosage of this type of drug.
So what the new consultant doctor did was lethal.

artwellington wrote: »

Dementias aren't static - they change, and no doubt your fathers cognition and behavior has changed over that time frame. The referral to an old age service is a godsend. They are the specialists who look after dementias in the community. They also have better access to OT, social work and community than a neurology opd - even if he was the best neurologist in the country.

I can certainly see how this might be the case when you have a competent consultant but sadly it does not if like me you have a consultant who over-prescribes the medication, which is a serious and gross mistake with someone like my father with so serious an illness, and even worse takes that patient off a tablet that he is doing relatively okay on, too early.
So I have to disagree. Had this doctor done their job properly, I would not be on here right now.

artwellington wrote: »

From reading your letter, I sense that you have your own difficulties with members of your family - definitely your younger sister and also your brother. Its all too easy to allow such feelings colour how you feel about the situation. Its even easier to unconsciously bring such feelings to your interactions with family. I would strongly advise against this. Your father needs ALL of you pulling together at this time. Whether you like it or not your brother is there more often for your father than you can. If you feel your father is over sedated then chat with your brother and sister about. Don't go behind their backs - for a start you mightn't know the full story. Parkinson's dementia and esp lewey body disease is strongly associated with terrifying hallucinations and delusions - and he might just be on tablets for this.

Unfortunately there is nothing that can be done now. He has been changed to Exelon patch much too soon and it has speeded up his deterioration at a pace I believe to be probably unstoppable now. Remember this serious deterioration happened 4 months into the Exelon and the Exelon overdose (overprescription) so it's not something that happened over 18 months.
My brother sadly has denounced the neurologist, and as you can see I certainly have nothing positive to say about this consultant for the elderly, and just as I won't back down, he won't. But then, the stakes are much higher for him. He is better off thinking he did the right thing and I'm not going to tell him that he really messed up. Not so directly anyway. I had my time being Dad's main carer and I had the luxury of having the neurologist as my only consultant. He did his best though and I don't blame him for that. He too placed his trust in the wrong person.

I appreciate your reply though and agree that family should pull together but my sister was virtually useless as a help for years until Dad got worse and needed the 24 hr care less than a year ago. My brother is well intentioned but as Esoteric_ stated earlier, he was trying too hard to 'fix' Dad or to save a situation that he thought was not under the best control it could have been, when in fact it was.

Sadly, doctors are not all created equal. I hope someone else reading this might get the warning on time.

LegacyUser

Thanks to all who replied. Really appreciate your having taken the time to read through such a long post and for your advice which has really helped.