Please Help

[Mrs Trifle]

My sister has dementia and sadly is in a care home now since last August, her decline has been noticable. She is now so thin with weight loss, to say she is skeletal is an understatment but the home insists she is eating and drinking well. She also has severe choking moments, which are quite scary and you can see the fear in her eyes as she struggles to get her breath. We feel our concerns are not being addressed by the home, she still recognises her visitors as we make a point of asking who we are, and although she has trouble speaking she says our name. She now has a urinery infection and a chest infection, but as she is always in her room in bed, she cannot clear her chest. We are so concerned. Is it normal to lose so much weight? What can we do??? any advise would be appreciated.

 

[longgoodbye]

Hello,

You must be very concerned about your sister. It sounds like the care home manager had had an opportunity to deal with this, and you must now take it further. If you have any contacts you trust the opinion of in the medical or social work team who have been involved so far, I'd contact them for advice. Alternatively a local carers/dementia organisation may be able to help.

Also, the care home should be recording her weight and BMI. Have you asked to see those records?

 

[Saffie]

Your sister should be weighed weekly, the weight recorded and any loss of weight addressed a.s.a.p. I would be asking some searching questions of the manager of the home, especially in the light of the UTI and chest infection too. Has she been seen by a GP? I would ask to see her Care Plan record of what's being done to help your sister. No wonder you are worried about her. Best wishes.

 

[Mrs Trifle]

We have asked and they show us her kg weight, I don't know about the BMI, but to be truthful, she hasn't any BMI. She is like a concentration camp victim. As she cannot stand unaided, how is this a true reflection of her weight? After another choking episode before Christmas, I insisted that she was taken to hospital in case she had inhaled her own vomit, so reluctantly the home let her go. The hospital stated she was malnourished, so a dietitian was brought into the home to assess her, but the family wasn't informed when this was or what had been recommended. I know she is now on esure (?)supplements, but if no one is there to help her drink it ... she cannot do this for herself. Water jugs are in her room, but she is in bed unable to reach and get the water. They say she eats well, but is this a 'dementia' thing that the brain is not telling the stomach to take the nutrients? I really want to take it further, but sadly her husband is scared of 'rocking the boat' as he doesn't want her back home. Her children are asking us what can they do..... so really in a catch 22 situation with with it all, but at the end of the day it is my sister ........

Hello,

You must be very concerned about your sister. It sounds like the care home manager had had an opportunity to deal with this, and you must now take it further. If you have any contacts you trust the opinion of in the medical or social work team who have been involved so far, I'd contact them for advice. Alternatively a local carers/dementia organisation may be able to help.

Also, the care home should be recording her weight and BMI. Have you asked to see those records?

 

[Wolfsgirl]

This situation is so shocking to hear! I would be out of my mind with worry especially after the hospital's feedback. Ask the CH how they managed to weigh her!

In my Mum's care home there is a lady there who sleeps all the time in an armchair on wheels which reclines, she does not speak or eat or feed herself but I have watched staff patiently giving pureed food, yoghurt and fluids to her and she is kept comfortable.

Someone has got to start thinking about the possible consequences and to fight for this lady - sounds like there is no way she would be able to go home and her husband should be fearing for her welfare not his own!!!!! Sorry but that is just plain selfish and he could just refuse to care for her anyway IF he was asked and couuld not be forced.

I so hope compassion will overide any fears so that family will act to help the poor thing.

Good luck, please keep in touch - it would be good to hear that she is being fed and watered.

 

[Onlyme]

Mum care home have a ramp that they wheel the chairs onto, weigh, weigh the chair afterwards and take one figure from the other.

I am shocked at your sisters was malnourishment. I would have thought the hospitals concern would have triggered a safeguiding issue.

 

[geum123]

Dear Mrs Trifle,
No wonder you are worried about your sister.
What an appalling situation.

I can understand her husband not wanting to rock the boat,
but sometimes it is necessary in order to achieve good care,
and surely he would want his wife to be as comfortable as possible?

I'd be wanting to see the care plans.
maybe her children could be involved in this?

I would request that all of your questions are addressed.
If she has been malnourished, how is her skin integrity?
Has she bed sores?

I'm so sorry, I know this post may upset you, and that certainly
isn't my intention,
but sometimes it is necessary to poke a few people in the ribs,
(the care home) in order that poor care may be addressed.

I do wish your sister the best of care. xxxxx

 

[Sox]

Hello - can I just say my husband sounds as if he is in a similar situation to your sister but is in a very good nursing home who keep me informed at all times and his care is excellent. I managed him at home with some help until last September - he was referred to SALT (Speech and Language Therapist) who checked his swallow and recommended finely chopped up food and I had to feed him and help him with his drink in case he tried to drink too quickly.

He has had difficulty with eating and swallowing for about 12 months. gradually getting worse and eventually about 6 months ago he started choking. He was in the Nursing Home by this time and they asked SALT to come in again and she recommended all food to be pureed and his drinks thickened. He has been seen again recently by SALT and his drinks are now thickened even more because his swallow has worsened and everything has to fed to him on a teaspoon and we have to watch for a double swallow between each spoonful. All his medications are either dissolvable or liquid and he is on patches for his pain (Arthritis). Needless to say this all takes a great deal of time and I try to go as often as possible at meal times to help the staff but when I am not there they spend as much time as is needed with him.

From experience this does seem to be a progressive thing with AZ sufferers and I think it may help your sister if you ask for a referral to SALT.

Hope this helps. Good luck. Sox

 

[FifiMo]

Hello Mrs Trifle,

I can understand your concern for your poor sister. Can you tell us what kind of care home your sister is in? Is she in a nursing home as I notice that there doesn't seem to be mention of much involvement of a nurse is there is one. Can you also tell us who pays for your sister's care. Eg is she self funding or is she Funded by the local authority?

I can understand if her husband doesn't want her at home, but in these circumstances what is necessary is to find her a home where her needs are being properly met. From what you have said, my personal view is that this home is not capable of giving her the level of care that she needs.

Is your sister on thickened liquids? Puréed food? This would be an absolute requirement for anyone with swallowing problems. My concern would be that because of the experiences of choking that your sister might either be scared to eat or drink or is refusing it as she does not want to choke. It kind of smacks of when my other stopped drinking because she didn't want to go upstairs to use the toilet! Her lack of understanding and logic ended up with her having a a bad UTI!

In a properly organised and responsible home they would be keeping fluid charts and food charts and you should be able to view these. If they are not being done then that would be a red flag to me.

Is your sister hungry or thirsty? Have you tried taking in things to offer her? Ice cream, jellies, little pots of custard can provide her with calories but they also add to the fluid intake too. Might be worth doing a little experiment of your own as to whether you can coax her. If she is hungry or thirsty that would be another red flag to me as it could indicate that the home are not giving her the additional time it might take for her to eat or drink anything of any significance. Is there anyone in the family who could go in and feed her to see if that might help, particularly if she recognises you and is content with you being around.

If these deteriorations have happened rather quickly, then there may have been an underlying infection around for a while. This could be what has manifest itself again with her current UTI/chest infection. When you take all these factors together then my plan perhaps would be

Ask for GP to be called out and make sure you are there when they arrive. I would push the GP to have her hospitalised to get right antibiotics to manage the infections quickly. Then can give IV antibiotics if nothing else than to stop the chest infection developing in to pneumonia. Whilst she is in hospital I would get them to get some nourishment into her, maybe with a feeding tube. If a feeding tube can be used then perhaps the family could sit with her so that she doesn't pull the tube out. Whilst she is in hospital I would see if there is any improvement in her general condition and if there is then I would be talking about her moving to a new care home, one that continue the progress that has been made.

Unfortunately, this sounds like a situation that needs action quickly. Your BIL has to realise that this is not about your sister being sent home. This about saving her life. The only guarantee that he has is thad if he does nothing, then his wife wont survive, let alone be shunted back home as he fears!

Hope this helps

Fiona

 

[Mrs Trifle]

Please help - so far

Well, I have taken on board everyone's suggestions and have spoken to my niece's to give them key questions to ask and get clear facts, and not be fobbed off with she is eating / drinking well. Alas, I think it is a lost cause, as one quoted to me 'they can't go against their dad!' I have seen documentation of written notes for my sister for 2012 where recommendations were suggested then but I don't think implemented. It is a Council run CH, her sister's thoughts are a NH would be more suitable. Another thing is that the doctors she was under has been changed to another surgery.... when I asked if this was the CH doctor I was told no. So how come her own doctor is not on their register. My niece is going to ask this today (!). I am the big baddie aunt at the moment, but I am asking the family questions and they are not providing me with logical answers as they don't know themselves. I ask the CH (who dreads my visits, scared of what now I am going to ask them)
How far do I push to ensure the quality of care my sister is getting is sufficient for her? I have taken in yogurt, custard and she wolfs them down. Drinking, she gulps at the water then takes too much and starts spluttering. Oh dear, I KNOW she is not long for this world due to her physical and mental state, but I want her moments to be more comfortable for her and not what she is receiving at the moment. I am not criticizing the family, as this Dementia world is all new to them, but how you care for someone so precious as your mum should not be new, but I feel instinctive?

Hello Mrs Trifle,

I can understand your concern for your poor sister. Can you tell us what kind of care home your sister is in? Is she in a nursing home as I notice that there doesn't seem to be mention of much involvement of a nurse is there is one. Can you also tell us who pays for your sister's care. Eg is she self funding or is she Funded by the local authority?

I can understand if her husband doesn't want her at home, but in these circumstances what is necessary is to find her a home where her needs are being properly met. From what you have said, my personal view is that this home is not capable of giving her the level of care that she needs.

Is your sister on thickened liquids? Puréed food? This would be an absolute requirement for anyone with swallowing problems. My concern would be that because of the experiences of choking that your sister might either be scared to eat or drink or is refusing it as she does not want to choke. It kind of smacks of when my other stopped drinking because she didn't want to go upstairs to use the toilet! Her lack of understanding and logic ended up with her having a a bad UTI!

In a properly organised and responsible home they would be keeping fluid charts and food charts and you should be able to view these. If they are not being done then that would be a red flag to me.

Is your sister hungry or thirsty? Have you tried taking in things to offer her? Ice cream, jellies, little pots of custard can provide her with calories but they also add to the fluid intake too. Might be worth doing a little experiment of your own as to whether you can coax her. If she is hungry or thirsty that would be another red flag to me as it could indicate that the home are not giving her the additional time it might take for her to eat or drink anything of any significance. Is there anyone in the family who could go in and feed her to see if that might help, particularly if she recognises you and is content with you being around.

If these deteriorations have happened rather quickly, then there may have been an underlying infection around for a while. This could be what has manifest itself again with her current UTI/chest infection. When you take all these factors together then my plan perhaps would be

Ask for GP to be called out and make sure you are there when they arrive. I would push the GP to have her hospitalised to get right antibiotics to manage the infections quickly. Then can give IV antibiotics if nothing else than to stop the chest infection developing in to pneumonia. Whilst she is in hospital I would get them to get some nourishment into her, maybe with a feeding tube. If a feeding tube can be used then perhaps the family could sit with her so that she doesn't pull the tube out. Whilst she is in hospital I would see if there is any improvement in her general condition and if there is then I would be talking about her moving to a new care home, one that continue the progress that has been made.

Unfortunately, this sounds like a situation that needs action quickly. Your BIL has to realise that this is not about your sister being sent home. This about saving her life. The only guarantee that he has is thad if he does nothing, then his wife wont survive, let alone be shunted back home as he fears!

Hope this helps

Fiona

 

[Saffie]

I do find it strange that your sister's GP has changed to a doctor that is not the one that is allocated to the Care home. Normally, the surgery closest to the home undertakes to care for the residents there, unless a previous doctor is close enough to visit. This is what happens in my husband's nursing home anyway.

I hope your neices do ask pertinent questions and can get some satisfactory responses. surely, her husband wants what is best for their mother. I can understand the desire not to upset staff and rock the boat, but I think in the caring world, if you don't do this when you are worried about something, you will live with regret - and guilt. For the sake of our loved ones, sometimes we have to stick our heads above the parapet and shout! good luck.

 

[Mrs Trifle]

update from March! re: My Sister

Hi Everyone
From my last post in March, sadly things have gone from bad to worse. I was quite vocal in my questions to my sister's family and the care home, now I am a trouble maker! Update on my sister is that she has been in hospital 3 times now, UTI infection, chest infection and pneumonia! her recent stint in the hospital marked a great improvement in her, as the meds she was on seemed to up her responses. I have been giving her custard on my visits and she thoroughly enjoys them. Sadly, she has been returned to the CH! I have asked to see her care plan which they now have...(surprise) and on reading her notes she was 32kg when she was discharged from hospital 3 weeks ago. Within days this had gone down to 29kg!! BMI 15, which I challenged only to be told she eats well and they now put butter on her potatoes! On recent requests to see it, I have been refused! I have been told the dietician has been in and recommended this powdered stuff to be put in water and on her ice-cream or yoghurt and she will be monitored. So I continued give her the custard on my evening visit 7.00pm ish. That was till this Tuesday, my BIL told me she had been sick. The home has now instructed that she has nothing to eat after 6.00pm. So I am to give them the custard, which they will give her during the day. So she is going from 6.00pm to breakfast next morning 8.30 - 9.00 (or when they get round to her) without food. I have done the custard all these months and she hasn't been sick with them, Now my only salvation that she is having something substantial has been taken away My other sisters are all concerned about her. What do we do?

 

[Dill]

Hi Mrs Trifle
I'm afraid I can't help much but am bumping your post up in the hope someone will have had a similar experience.

Have you or your sisters got POA for health and welfare? Are you able to speak to the dietician or your sister's GP as to why no food is recommended after 6pm?

Hope you are able to get some answers soon.

Dill

 

[Grannie G]

Hello Mrs Trifle

Perhaps you could ask your sister`s home for a Best Interests meeting. This will gather all involved in your sister`s care round a table to discuss her condition. Then you will be able to ask the dietician etc. the questions you want and talk about what worries you.

 

[Aleis]

Assessment for NHS Continuing Healthcare

Dear Mrs Trifle (and others in this situation)
Has an assessment for NHS Continuing Healthcare taken place? This should have happened before she left hospital if not in the past.
Best wishes.

 

[Saffie]

As it is a council run Care home, I would try to contact your local county councillor. He or she is elected to represent your views and concerns and my local one happens to be on the Adult Services committee. Even so, whoever your's is should be able to ask pertinent questions of the relevant members. They have a duty of care towards its electorate of whom your sister is a member and also negative publicity is bad for the council.
I think that the SSs should also be invovlved because it does sound as though your sister would be better cared for in a Nursing home as opposed to a Care home. You must be so worried and I feel for you in your difficult position.

 

[Mrs Trifle]

Update on my sister ....

Well, thank you all for your comments, they have been really informative to me and my sisters. We have now requested a Best Interest meeting with the CH who were taken aback by our request. They have said that my BIL will be written to, I think he has POA, but as she is in the home are they not the decision makers? I can just see him refusing the meeting. We will just have to cross the next bridge when we come to it. Thank you all again, you have been so helpful.
p.s. CH staff meeting has been called, and three staff were in the office tonight with folders everywhere looked like they were doing a lot of paper work

 

[Mrs Trifle]

CH response on my sister

Received a letter today refusing a 'Best Interest' meeting as her husband is happy with the care the CH is providing, and as he is next of kin he does not see the need nor will he attend a meeting. If I have complaints regarding the CH practice then I am to go through the complaints procedure (which surprisingly I wasn't told about nor saw till last night) posted on the notice board. Even the staff did not advise me of this when I asked about calling a meeting. To say we are saddened by this is an understatement. I have printed off Aspiration pneumonia information, as again she has a cough and is struggling to clear her chest, due to the constant choking she is doing on normal feeds and water she drinks. No SALT person has been in to see her as far as we are aware, but then her family are not informing us of anything. Just feel I have to say, Shame on them so where do we sisters go from this brick wall?