Mum needs surgery

[crossons]

I wonder if someone has experience of the consequences of surgery on dementia sufferers.

A specialist has recommended my Mum have surgery for a painful bowel condition, but, as she suffers from moderate dementia I am very concerned that her dementia will worsen permanently. I'd be grateful to hear the experiences of anyone whose loved ones have had to undergo surgery.

Thanks.

 

[jenniferpa]

Hi crossons

Hopefully someone with personal experience will be along soon. All I wanted to say is that while surgery and the following hospital stay "may" make your mother's dementia worse, I would think that being in what I assume is fairly constant pain will almost certainly make it worse.

It your situation I would be most concerned about the experience (or sadly lack there of) of the ward staff following the surgery: very few staff memebers particularly on surgical wards will have any experience with dealing with a confused adult. So you'll need to be proactive: how long will she have to stay in hospital following the surgery, will she need to have an IV (lots of dementia sufferers will remove these if not watched constantly), how will they deal with someone who probably will have no idea why they are there? Really the same sort of questions you would have if a very young child was to be in this position.

Jennifer

 

[susiewoo]

I also have just been told Mum needs a hip replacement. She didin't do well 2 yrs ago when having a re-do hip. The staff on the ward were useless and called security one night to restrain Mum. I then spent most of the rest of her stay in with her. She is now having lots of pain with the other hip and has fallen several times because she lurches along.
I fully intend to stay with her during her entire stay and have family support. The NHS have difficulties looking after people properly who haven't got extra problems like dementia. Mum would pull her drip out and be out of bed crashing around in a second of being left alone.
I work within the NHS so speak with full knowledge of the drawbacks. I have spoken to the manager at her care home and they are happy to provide the care Mum will need on discharge from hospital.
My only thought is whether it might be better for all to pay for Mum to be treated in the private sector.
Advantages would be being able to pick the date to fit in with the family and she would be in her own room and not disturbed by other patients. Hospitals generally are very noisy places especially at night.

 

[Helena]

I honestly do not think paying for your Mothers ops is in any way sensible also you are talking about a huge bill for a hip op and a bowell op

Most private hospitals actually do not have the staff especially at night to deal with such patients or any kind of disruptive behaviour

 

[Grannie G]

I would regard Pain as a deciding factor, when considering surgery for people with dementia.

If they were suffering severe pain, I would opt for surgery. If not, I would think twice.

Unfortunately, they may not be able to communicate the level of their pain, and be made to suffer in silence.

 

[Nell]

Yes, Mum was more confused after surgery. In her case she had a broken hip. Like others have said, I don't think you can avoid surgery if the person is suffering and in pain. Even if this leads to greater confusion (and I hope for your sakes it does not) I think you will have to go ahead with the surgery.

I do hope it will be as trouble free anexperience for all of you as possible. Sending you caring wishes.

 

[crossons]

Thanks for the feedback

Thanks for your responses.

It's interesting that the private sector may not provide the support Mum needs. I have spoken with a District Nurse who also felt that being in a bay on an NHS surgical ward may be the best option. My worry with that is visiting hours - the local hospital is very strict about visiting.

It's such a worry and the feeling of lack of control over Mum's care is a difficult one as the family have had a 'good run' of late with a stable period.

Thank you for your opinions, it's very difficult to get professionals to give the time necessary to explore the options and I appreciate your input.

 

[MillyP]

Hi...my Dad is in the same situation...he has Vascular Dementia and has got to have surgery to unblock the pipe that allows him to pee...for want of a better description, and also to have a bowel complaint looked at via a Colonoscopy. He will need a general anesthetic and I did ask the Doctor if he should still go ahead and have it done...he assured me that the surgery should still go ahead as toxins can build up and that can lead to Dad becoming more confused. He has his Colonoscopy due at the beginning of July and the operation at the end of July. The only thing that concerns me is, how the hell they are going to stop him from escaping and keep him in bed if he has to have a catheter fitted

 

[Carolann]

Hi,
My Mum had a repair to a previous hip operation last year. Just thinking about that time now has my stomach in knots. The hip op. went well but poor Mum did not know she had an operation and even though they were giving her pain killers she used to scream when the nurses moved her in her bed to give her a bed bath etc.and also when she wanted to go to the loo and they gave her a bed pan she did not realise what it was for and just kept shouting that she needed the toilet.

The nursing staff don't or can't cope with Dementia patients on a general hospital ward. My Mums Dementia deteriorated so badly and she went down hill rapidly.
They used to put her bed in the day room at night because she disturbed all the other patients!

My memories of this time are so painful- but I do appreciate this was our experience and I do so hope yours will be so much better.

Thinking of you,
Take Care
Carolann

 

[TinaT]

What a problem to wrestle with! I was on a 'bone' ward last August. As it was an emergency hospital stay and quite unplanned my poor husband had to go into emergency respite. Husband has LBD and I am his sole carer so I have my own experiences of Alzheimer's disease to draw on.

On my first night in hospital an elderly lady in a bed opposite to me was suddenly woken up by a male nurse walking past her bed in the middle of the night. She was obviously frightened and confused. She cried out for the police to come as she thought she was in her own bedroom and that the male nurse was a burglar. No nurses went to her to calm her down. They ignored her completely until she became so agitated that she ripped out drips and started to throw things. They then pulled the curtain around her and peered in at her. They laughed and joked to each other about her behaviour and decided that as she was so 'violent' they had to 'leave her to get on with it' Coward that I am, and to my shame, I did not speak to them about their behaviour. As it was my first night on the ward I didn't know what the history was of the lady's previous behaviour on the ward.

The next day I watched the lady closely and by mid afternoon I went and sat wth her, stroking her hand and talking to her about beng in hospital together because of our broken bones. She began to respond to me and recognise me because I completed the same ritual each time I 'visited' her.

On the second night she started to become agitated. I slipped out of bed to stroke her hand and talk to her a little. Within minutes she had settled down and there were no more disturbances from her. She slept soundly all night.

In vew of the many staff changes (never the same staff on duty two days/nights running) I can quite see how the lack of personal knowledge of indivdual patents happens, although I do feel that the members of staff who were on duty on my first night behaved in an unprofessional and cruel manner towards and elderly and confused lady.

My husband has to go into a specialist hospital later this month to have a cancer removed from his face. I have made it quite clear to the surgeon that if he has to stay the night, then I will be sleeping in a chair next to him. I am lucky that I can make this commitment and realise that not everyone has the time or is able to do this.

Telling the staff the best way to respond to your loved one's behaviour may help. The problem is such information does not get passed on to all the staff who come into contact with the alzheimer sufferer. There may be a specialist ward in the hosptal who have experence/training. My elderly mother, although not suffering from AZ was put on just such a ward. I saw a great deal of difference in the treatment of AZ sufferers there. It is worth while asking if there is such a recovery ward in your hospital.

My very best wishes to you in your endeavours to get the best for your loved one.

xx TinaT

 

[crossons]

Thank you for your responses. The experiences of the last two contributors are exactly what we dread happening to Mum.

She has been violent towards residents at the EMI unit where she lives who 'invade' her personal space by entering her room and, as most of us when confused and agitated, can be very 'difficult' to manage. I also have witnessed nursing staff 'managing' an elderly man who clearly suffered from dementia when my son was admitted to an emergency ward at night;their treatment of him was appalling.

There is a 'modern matron' at the large NHS hospital that could treat Mum and I have been advised to speak to her to find out what support there may be for Mum but I'm not holding my breath.

I also intend to speak to staff at private hospitals to see if they could do anything to help support Mum.

My gut reaction is to leave her safe and sound where she is as and not think too hard about her being in pain when she empties her bowels. That way we maintain her dignity and the dementia doesn't deteriorate - yet. I know that I am avoiding facing the fact that the dementia will deteriorate and it will be so heartbreaking to have to deal with that. Sticking my head in the sand is much the easier option at the moment!!

Thank you all for your kind thoughts and wishes, it does help to have this opportunity to hear from people who do understand the issues.

 

[jenniferpa]

My mother has never had a "planned" admission so I really don't know how much can be arranged in advance, but if she did, I would move heaven and earth to ensure that she (and I) were given the same facilities as a distressed child would be: open visiting hours would be the deal breaker for me. I understand that it's not always possible to get a private room, but I refuse to see why I cannot visit and stay with her as much as I am needed (and this is from someone who doesn't do hospital visiting well). After all, it's for the hospital's benefit too. I was under the impression that in theory at least, it is now possible to "choose" your hospital under the NHS. I know theory doesn't always gel with practice, but in this situation I would be "interviewing" each hospital to find out what sort of services they might provide and GET IT IN WRITING.

Jennifer

 

[crossons]

"GET IT IN WRITING" - good point!!

I've spoken to the Modern Matron this morning and she says that if I ring before Mum is admitted she will arrange for a support worker to sit with Mum day AND night. In light of Jennifer's point I shall definitely be writing for confirmation! I asked about flexibility in visiting hours and she said there would not be any flexibility - we could only visit in visiting hours.

I hope this information about support workers will be useful to other carers.
Thanks.

 

[jenniferpa]

Well if they really will provide a support worker, and if the support workers can be relied upon, I would have less problem with the visiting issue: as I said, I don't do hospital visitng well. I just would have thought that free help (i.e. family) rather than paid help would be soemthing they would consider. However, I suppose it's all about turf and "procedures". At one point I asked if I could employ someone (i.e. an agency nurse) to be solely responsible for my mother's care, but that went down like a lead balloon.

Jennifer

 

[jude1950]

Hi there
I know how you feel . I don't know that I would trust any hospital to look after my husband because of his AD.
I have often pondered on the legallity of being denied access to a loved one who is in Hospital.
If a child was to be admitted to Hospital there is no problem with a parent staying with the child to make sure they are not distressed and to "help" the ward staff look after the childs basic needs ....toileting feeding etc.
The same access should be allowed to a dementia patient...I would point out to the ward suister that you are not asking for 24hour access for everyone who wishes to visit but just to you as the main carer. I would also enlist the help of the patient liason service (PALS) .