Mother with vascular dementia who has had a stroke

Old forum user 03/01/18 Dignity Champions forum

Need advice please. My mother has got vascular dementia on 23rd Dec I got her up and noticed that she wasn't her usual self. She had a right side weakness and her speech was slurred but understandable. I called the shrop doc who then called ambulance they did their usual checks asked questions did her stats all ok apart from her weakness no temp , Ito , blood pressure fine . The decision was made to keep her at home ( because mum refused to go to hospital ) even though I explained she had vascular dementia . They told me see how she goes if you are not happy give us a call and we will come out.

The next day mum was still eating drinking , and looked better than day before so I decided to see how she continued to be but on the 26th I called shrop doc and explained she was not getting any better and this time I would like a doctor to see my mum . Again they played safe by sending ambulance. This time she was rushed to hospital with exactly the same symptoms she was having on the 23rd Dec. The ambulance drivers asked me a lot of questions and told me they were going to put an official complaint about the ambulance service that attended mum previously.

After 3hrs waiting in the ambulance at local hospital we eventually put in accident and emergency had lots of tests done and it was confirmed that mum had had a stroke and at 1.30 am admitted on to a ward .

Mum was put on thickener for drinks and her food was of a puréed consistency. She hated it but would have a couple of mouthfuls. I would take in a chic mousse and after a little persuasion she would eat it all and tell me it was nice . The nurses would ask if she wanted her breakfast, dinner tea but if mum was sleepy or said no , they would leave her and take food away . If she says no to her thickened water they walk away . I suggested to them that if they put thickener in her lucazade she will take it spoon fed .

It has been a week now my mum has been left sleeping, no bath or shower, just a wash , offered food but taken away offered drink without persuasion. I raised the concern of her not being persuaded to eat or drink knowing she has vascular dementia her no's may mean yes . She was assessed by memory clinic 4weeks prior to her stroke and they said her memory had definitely deteriorated.

The ward at the moment is closed to all visitors because of the flu bug but as leaving hospital after being told this I noticed there was a visitor on the ward who was talking to her mother in the bed next to my mum and I wasn't allowed onto ward so upset I rang and asked why was it one rule for one and not for me ( I had travelled from work and refused entry even though I said I could help feed my mum then leave )
They said the lady in question had been dropping off some towels and nighties that her mum had run out of .. but she was there all day the day before ?? And why had she taken her coat off and why did they not take the things off her by door and refused entry like I was ?? I was not happy and also asked them for a copy of her food and drink intake as I was worried that she may be starving and dehydrated only surviving on a yogurt and a couple of drinks a day . They said her bloods are taken daily so they would know if she was . I feel because she has dementia they are not bothered so much . She was even fed by a patient the other day who could of choked her . What can I do ? Surely it's her human right to be fed and watered I know they are not allowed to force feed but surely they must know a person with dementia will say no but lack the understanding of it . Her food chart says Breakfast-refused , lunch- 1-3 mouthfuls, tea - too sleepy, how long can this go on for ??? Am I right to be upset ?


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Vanda Ivo 04/01/18

I understand that you are upset, but generally in these situations it might seem easier to be near your mother, seeing that you are angry and that will be reflected on her, and she might become agitated by seeing you like that.
Seeing that you are angry, take it to the management of the hospital and explain your situation. If that won't satisfy you, take a formal and written complaint to the safeguarding team.
I hope my advice gave you some clarity.
Thank you

mike stone 04/01/18

I can understand why you are upset - the 'access to the ward' seems odd, to say the least.

It doesn't necessarily follow, that your mum lacks the capacity to make her own decisions because she has dementia - nor, indeed, because she has had a stroke. But it is quite complicated: if you think 'her no [sometimes] means yes', or that she doesn't understand the consequences of her own decisions, ask the hospital 'has my mum's mental capacity been assessed by someone? If so, I would like to talk with whoever made the assessment'.

I must admit, that I find this rather disturbing:

'Mum was put on thickener for drinks and her food was of a puréed consistency. She hated it but would have a couple of mouthfuls. I would take in a chic mousse and after a little persuasion she would eat it all and tell me it was nice . The nurses would ask if she wanted her breakfast, dinner tea but if mum was sleepy or said no , they would leave her and take food away . If she says no to her thickened water they walk away .'

I can't really be of much help, Mike


SUE JONES 04/01/18

I am extremely sorry that both you and your mother have been through so much. I work in a nursing home and care and support individuals experiencing different types of dementia. Very often an individual will decline food and fluids, but gentle persuasion techniques are very often successful. Just because an individual with dementia says no, doesn't necessarily that they don't want something. You can try eating and drinking with your mother, I have found this to help sometimes. Hospital staff should be returning to your mother and offering fluid and food when she declines her drinks and meals. It is normal practice to thicken fluids  and puree food for someone with dementia, but a soft diet should always be tried first. As the individual may be able to swallow fork mashable foods. You should ask if your mother has been assessed concerning her ability to chew and swallow. I really hope that I have helped in some way

Neil Purcell 04/01/18

Sorry about the situation you find yourself in,firstly I would ask for a meeting with the ward sister explain concerns about your mother and also ask if mum has been assessed by the salt team this is the speech and language team who will draw up a care plan regarding eating ,drinking ,and speech for your mother.
Hope this has been some help for you ,your doing all you can in a very difficult situation.Neil Purcell.

Stefka Deneva 04/01/18

No, not just upset, you should be furious. If you give me some more info regarding the hospital or the local authority your mum lives in I can try and help you further. The care your mum has received in this hospital is disgraceful. Your letter is written brilliantly and it is a very good evidence for CQC - they need experts by experience exactly like you. They need your letter to improve the care your mum and all other patients who cannot speak for themselves receive.
For all of them, please email your letter to: http://www.cqc.org.uk/share-your-experience-finder?referer=contactus

In general: PALS (Patient Advice and Liaison Service) at the hospital will be willing to hear about the poor care provided: https://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68 They can escalate a complaint further.

Also, the local Health watch https://www.healthwatch.co.uk/ would be very interested to know about your experience.

Let's put this right and improve the quality of care your mum and others receive. Together we can make a difference. My number is 07514134641, you can call me any time you need.

All the best!

Stephanie

Danielle Viljoen 05/01/18

I agree with other comments already posted that you need to request an urgent meeting with the ward sister/manager regarding your concerns. Ask if she has had capacity and SALT assessments. If you don't get anywhere with requesting this meeting then speak to PALS in the hospital. In my personal experience PALS have helped to resolve issues of concern.

Graeme Stark 05/01/18

Not washed or showered? Concern about nutrition and hydration? If that was a care/nursing home a safeguarding alert would be raised - deprivation of contact, poor care practice at the very least - that's the approach I would take. https://www.england.nhs.uk/wp-content/uploads/2017/02/adult-pocket-guide.pdf

I hope you get the care your mum needs.

Old forum user 05/01/18

Thank you for everyone's input you have passed on some valuable and appreciated advice .

I have a cousin who works as a anaesthetic nurse in the theatre opposite the ward my mother was on . I told her what I was upset about and she said she would pop over for visit after her shift . After her unexpected visit to ward she rang me at work absolutely fuming. She said looking at my mums fluid and eating chart you would of sworn she was on the pathway. She said my mum was extremely poorly , her oxygen levels were 85 and she needed oxygen , nebuliser and immediately put on a drip . Her colour was grey and she took ages to arouse . I was devastated she also said that she needed a pressure mattress as not having nourishment her body will start to break down in places where she is lying . Her chart said she was 0 but after doing obs 1 1/2 hrs after it had been written up it suddenly became a 7 my cousin reckons it would never jump that much in that length of time ?? . I rang hospital immediately and said I was visiting and demanded to see ward sister to explain what the hell is going on . They said that my cousin had visited ward and said that she shouldn't of scare mongered me as she is also a resperitory nurse and explained to me all the things my cousin had asked me to demand for my mum..( that she told them to do ) I got to ward and after being on oxygen and given water and antibiotics intravenously she looked brighter. The ward sister apologised , explained that my mum was poorly had been eating food but now seems to think some has been going onto her lung causing infection which they are now fighting with the correct antibiotic. They asked if mum had a choice would she want to be force fed I said she looked after her own mother and I know she would of said yes so I said yes she would . They are now going to feed mum via nose until her infection clears . Then she will have swallow X-ray to help prevent further infections in future.

I did arrange meeting with ward sister and discussed all I was worried about . She asked if I would like to complain but I said all I want is the care my mum deserves and that I know there is a restriction on the wards ,and with my mum having vascular dementia her anxiety will be high if she does not know , or have , familiar faces around her , so I want a family member by her bed afternoon and evening . Luckily they have agreed . My mum tonight asked me to come home 😢😢I wish , but hopefully this will be a learning curve for this ward ...ALWAYS TRUST YOUR INSTINCTS if you feel something is wrong challenge the professional they are only people . Because someone has an illness doesn't mean they don't deserve a happy life .

mike stone 08/01/18

Hi Old Forum User, I hope things go better for you and your mum now you have 'kicked up a fuss'. It is widely understood, that patients with dementia are often helped by the presence in hospital of family and friends who they know (less 'disorientation' when there are familiar faces around).

However - we do not all have the advantage of 'I have a cousin who works as a anaesthetic nurse in the theatre opposite the ward my mother was on' do we?

Karen Leach 08/01/18

This is quite true; if you don't have the knowledge or resources...
I am a nurse and I frequently support friends and relatives to get around these minefields, most recently and ongoing, a situation with my own mother. Sometimes you have to use the 'professional card', this does not mean that it is right, what we need to is be more aware and apply these experiences to our practice.
It is really hard to see poor practice go unchallenged, those who have the experience and knowledge need to be more vocal and those working in the environment need to be more aware of the affect their care has on the people they are caring for. Its the 'lead by example' format, I also understand that there is awfully heavy pressure on the professional care givers, it is not an excuse, its a fact that the staff are overstretched. I welcome the involvement of relatives who know how to help their loved one, it's important to work with them and assess the situation and risks.
I don't think we should slam the person who involved their professionally trained cousin, it got the job done, we need to be more supportive and encouraging those who want to help.

mike stone 08/01/18

Hi Karen - just for clarity, I hope you did not misinterpret my comment:

'However - we do not all have the advantage of 'I have a cousin who works as a anaesthetic nurse in the theatre opposite the ward my mother was on' do we?'

I wasn't being critical of the help available there, nor of asking for the help: I was trying to point out that most relatives wouldn't be in a situation when they could call on such help. Put bluntly - there seem to be 'things that look wrong' which happened here, and because of the cousin, they were perhaps sorted out: these 'wrongs' firstly shouldn't be happening, and if they do happen, they should be sorted out for all patients/relatives, without the need for a 'lucky circumstance' (the cousin) which most of us will NOT have.

Karen Leach 08/01/18

Thank you Mike, I did slightly misinterpret, but understood the point you were making; it is a difficult time for our care providers.

mike stone 09/01/18

Hi Karen, I completely agree with you about 'a difficult time for care providers'. It is 'time' which allows nurses to show they care; it is 'time' that allows for better diagnosis; it is 'time' that allows for mistakes to be picked-up and put right. In the current cash-strapped climate, 'time' seems to be in short supply.

It makes me think of the Francis Report, and the way the Government immediately started to spin the issues: notably, they kept 'pushing' 'do our nurses still care?' and AVOIDING discussion of 'do our nurses have the time to show that they care?'.

chianta williams 09/01/18

I don't think it's a question of anybody caring, it's a question of too much paperwork and no time for hands on basic care ,therefore ,who is the sacrifice... the patient .

I remember the NVQ's being three quarters hands on obs ,now its paperwork has increased with fewer obs . It's the same with nursing although I do believe now ..slowly ,they are realising how better it is seeing /doing the a way job is done is more valuable ,and easier ,to understand than writing about it .

Linda Hughes 09/01/18

I couldn't agree with you more. Yes I remember when N V Q,S where that way . I work in a care home and have seen all new paper work which means that nobody has time to give the best care . I also watched my mum in a care home last year as she was dying . The care staff where as good as they could be but with lack of staff and all of the paperwork . Mum would have died alone except that I was allowed to stay in her room all of the time . So yes I agree we have to have paper work but must there be so much

Robert Smith 23/03/21

Galantamine is helpful in vascular dementia. it may help you better.