Desperate and don't know what to do

[tryingmybest]

My poor Mum who lives with me, is really starting to decline since her short hospital stay last December and still is not eating so has lost 2 stone and is very frail. She is now constantly having to be reminded to drink her cups of tea/coffeee/juice and is not really drinking enough. I have taken her to see 3 different doctors and to be honest just get met with total apathy and they have been of no help really. One did however put her on Mirtrazapine but Mum suffered side effects so came off them after 2 days. The idea of these was to lift her mood and encourage appetite.

We are now waiting for a dietician to visit but have been waiting such a long while. She comes on 3rd April so not long now but I cannot see how she can help now at this stage as all she will do is recommend all the normal things such as adding things into food etc to increase calories but Mum wont eat or hardly drink so I don't know how this is going to help. I've tried absolutely everything as suggested on the Alzheimer's fact sheet to no avail. She used to at least eat a banana but only will peel it and eat one bite now. She refused the complan I got her too so if prescribed fortisip I dout she will drink it.

She had a uti last week and was prescribed antibiotics over the phone by a doctor who told me off for taking a sample in......how dare I suggest what was wrong with her!!. His attitude was appalling and not the first time to have spoken to me like this. My Mum has lived with me for 2 years. I do absolutely everything for her so I think I know the signs of a uti. She has finished the course but I wonder if she requires another?

Anyway, I think you get the picture that we do not have a sympathetic GP!

We always go out to lunch on a sunday. My one treat a week so I dont have to cook and my fiance comes with us and drives so I can have a glass of wine. It also does Mum good and she enjoys seeing other people, although eats nothing but does have a latte. On getting her ready yesterday, she said she didnt want to go and looked very peaky but I carried on as was so looking forward to getting out. I now feel so selfish as she obviously couldnt have been feeling well and had a funny turn as I took her to the toilet and fell backwards and banged her head again. This is now the 3rd time this has happened and I think what happens is her blood pressure drops and she passes out then seems unresponsive for a few minutes then when she comes round is violently sick and diarrhoea everywhere. The last time this happened is why she went into hospital in December as she fell off the toilet and banged her head so the paramedic wanted her to be checked over. They couldnt find anything wrong after doing all the relevant tests and a cat scan but she was given antibiotics intravenously as also had a chest infection.

This time I didn't call an ambulance because I didnt want Mum to have all the upset and confusion of being in hospital again. After phoning 111, a doctor called me back and felt the best thing was to just observe Mum. She sat in her chair all afternoon and was very quiet. Didn't eat anything as per usual and scarcely drank anything. I put her to bed at 7.30 and kept popping in but she slept through until 7 this morning.

She's very quiet today but oh so weak. I managed to get her to the toilet but she didnt go, although her pullups were very wet so she has passed urine. I could scarcely get her back to bed as she can hardly walk today. I don't know what to do. If I call the doctors they won't come out and I can't get her to the surgery like this. I don't have any help and am doing this alone and just don't know what to do anymore. I wonder if Mum has reached the end stage?

 

[Grannie G]

Hello tryingmybest

Your doctor is not being helpful at all.

I can only suggest you contact 111 again, say you are observing your mother and are seriously concerned you may be missing something.

If she is as she is because she is coming to end stage dementia you would appreciate being told so you are not left floundering wondering what to do for the best.

If she can be helped you would like information to know how this can be achieved.

 

[irismary]

So sorry to read this tryingmybest. Easy for me to say but ring GP and insist on a visit. Also get social services assessment and get some help, you cannot go on like this alone. Tell social services its an emergency - it is for your sake. Ring now.

 

[LadyA]

Morning TMB, I'm sorry you find things so desperate with your mum at the moment. I've just been having a speedy read through some of your other posts from around Christmas - so this has been going on a while, hasn't it? I'm afraid I can't offer much advice - except I do think you need to find a more empathetic GP! It can make all the difference. My late husband's GP used to tell me that I was the expert on William, and I would know if he was becoming ill. As William lost the ability to communicate, I knew when he was developing an infection by a sort of "look" he would get about him, and all I had to do was ring the surgery and say that he had that "look" again, and the GP would write a prescription.

One thing, the weakness (dizziness?)/falling and the vomiting with it might indicate a kind of vertigo/balance thing, which could be an inner ear problem, like an infection. A friend of mine had something over Christmas, which she said wasn't painful, but made her so dizzy and sick, she was miserable. It did pass, eventually.

On the eating/drinking front, I am afraid I can't help. Does your mum like sweet stuff? My husband ate very little in his last months at home (before he went to a nursing home) and was rapidly losing weight. But he loved sweet things, and would happily eat ice cream, mousse etc. - so tbh, I gave him those if he wouldn't eat anything else. Ice cream and he also liked very mushy mashed potato (I beat it with an electric mixer, with lots of butter & milk until it was puree) with plenty of gravy. However, once in the nursing home, his appetite returned, and he gained weight.

I wish I could be more help. But keep at the medics. They can't just abandon you and your mum. And if your mum falls like that again, you do need to call paramedics - even, to be blunt, to cover your own back from future accusations of neglect. But meanwhile, I would say do try and find a GP that is used to dealing with dementia patients.

 

[Jessbow]

my now late mum used to do something very similar, hers was an aortic stenosis- her heart just couldn't pump the blood hard enough, constantly very tired too. Lethargy resulted in it was ''all too much effort'', eating and drinking included.

We pretty much went over to finger food, (and an almost constant flow) jut t pick up and put in her mouth.

We went onto a lidded beaker too- It was less effort to use ( pick up/put down)

When we went out we used a wheelchair to conserve energy ( Hers not mine!)

 

[tryingmybest]

Thank you all for such speedy replies. I have just phoned the surgery and am awaiting a call back from a doctor to discuss. However, unfortunately there are no GPs at the surgery who have much empathy, let alone understanding of dementia!! I've seen them all now. If only there was someone there who was that I could talk to about Mums symptoms it would be so much better and I would feel less alone.

Thank you Grannie G I shall use those very words. That is very helpful.

Lady A Mum used to love all food especially sweet things but I think she no longer recognises food sadly. Like your William did, my Mum is now losing the ability to communicate which is really tough for me as well as her I'm sure. I also quite understand by your saying about that "look" as I've noticed that with Mum. I don't think it's vertigo as its only happened a few times then she's ok again. The last paramedic felt it was due to her blood pressure suddenly dropping.

Irismary I have just called the GP surgery. I'm ok really coping alone it's just I need some advice on how to cope with Mum being so poorly at the moment. SS have been a nightmare in the past. Long story but truly Mum and I are fine.

 

[tryingmybest]

Doctor has just called. Is going to send someone round at lunchtime but says there's nothing they can do! Helpful or what!

 

[tryingmybest]

Yes Jessbow it certainly seems as though everything is all too much effort. I do do all those things you have mentioned but thank you anyway. Interesting about your dear late Mothers diagnosis. I will mention it but would imagine that would've been picked up by now following all the tests she had in hospital in December but thank you I will definitely mention it. X

 

[Grannie G]

If the doctor says there is nothing they can do, you need to know how to manage end of life care. Will you have to do it all alone or will there be palliative care help available.

 

[la lucia]

How terribly worrying for you.

I would ask for an urgent visit from the SALT team just to check there's nothing going on with her ability to swallow.

My mother needs prompting for everything, specially eating and drinking. You could also ask your GP for a Fortisip prescription too.

I got calories into my mum by making smoothies with full fat milk, cream, plus powdered milk, fruit and crushed cashew nuts.

I do the same with home-made pureed soups. I add torn up granary bread, mayonnaise to chicken and leek. Whatever, the point is to think max calories. I served them in small amounts frequently.

Sainsburys Belgium Chocolate Mousse (300 calories) was the only thing that didn't need persuasion. I bought these by the ton ☺

I never ask but place it in front of her, and for a while, until the Mirtazapine kicked in and revived her appetite, I spoon-fed everything as if she was a baby bird.

It's so hard isn't it and to me it sounds like there's something else going on but food is a vicious cycle - the less you eat, the less you want because the stomach 'shrinks'.

I hope you get the support you need. I'd ask if these visits from experts could be on an urgent basis because she is declining fast.

Best of luck with it all.

 

[tryingmybest]

Grannie G I did just ask her when she phoned if it was possibly end of life stage and she just said "Well she is 87 you know".....hmmm I think I know that. I did say that if it was, I need to know if there was anything I can do to make things easier for Mum and she said No? So helpful!! I would very much imagine I will be on my own to the end as I live so rurally and dont suppose anyone would come out on a regular basis anyway should it come to that. Neighbours Ive helped care for in the past have never had regular people come out and have just been put in the hospice which is 30 miles away. Mums not ready for that by any means!! Let's see who they send out at lunchtime.

La lucia thank you for your advice. I have tried all that but she won't feed herself and turns her face away when I try to feed her and flaps her arms about and cries no. I have asked for a visit from the SALT team but was told no. I'm unsure if they have a team in this area but the GP I asked said there was no point. The GP won't prescribe Fortisip until she's seen a dietician. Weve bern waiting a while but finally she is coming on 3rd April.

Am I being let down by these people or is that the way it is and I have to just get on with it?

 

[cragmaid]

I don't know what time lunchtime visits are, but try to get a urine sample. Mum may need specific antibiotics.
Does Mum use a stick or walking frame at all? The BP drops are often as a result of body systems slowing down and being immobile for a length of time won't help.A stick could give her more support.
Do you have any link to the Admiral Nurses where you live? If not them, try giving your Local Macmillan nurses for some advice and also a local Hospice. They are used to eating difficulties and may be a able to give you some more advice.

While holding your temper and being polite might be difficult, given your past history with the GPs and also the SS, it might be worth asking again for a reassessment and ask the GP for the best time, perhaps you could make an appointment, or should you speak to the District Nurses..... for some extra advice re end of life care.

 

[Shedrech]

hi tryingmybest
wish I had something useful to add
maybe call 111 after surgery hours one time and make sure you sound at the end of your tether so that they send an out of hours doctor who may be more amenable to listening to you
Marie Curie nurses come out to help with nights for those at home at end of life (not just for those with cancer) - I believe a referral from a GP is needed but may be worth contacting them anyway
https://www.mariecurie.org.uk/
and Admiral Nurses
https://www.dementiauk.org/how-we-help/admiral-nursing/
is there a local hospice, someone from there may well be happy to talk things through with you
and there's the AS helpline

0300 222 1122 or by email at helpline@alzheimers.org.uk.
•Helpline opening hours:
•Monday to Wednesday 9am – 8pm
•Thursday and Friday 9am – 5pm
•Saturday and Sunday 10am – 4pm

best wishes

 

[la lucia]

I have asked for a visit from the SALT team but was told no. I'm unsure if they have a team in this area but the GP I asked said there was no point. The GP won't prescribe Fortisip until she's seen a dietician. Weve bern waiting a while but finally she is coming on 3rd April.

OMG I am so, so, sorry that you are having to go through this with so little support. I'm outraged on your behalf.

I think the others have given you some great advice re out of hours doctors, Admiral nurses, etc.,. I know it varies regionally but I have had extraordinary advice and support from the paramedics too.

This is just so wrong.... no one should have to go through this. I really hope someone comes through for you. Very best wishes. x

 

[Jessbow]

What a dreadful response from the surgery. No wonder you feel high and dry - anyone would.

Do you know shes 87? What a thing to say.

of ourse there are things you can do to make her life ( and yours) easier...What the dickens did the woman think you were ringing for? Its their job for crying out loud.

I'm furious on your behalf

 

[tryingmybest]

Thanks everybody. I'm feeling a lot happier now. They didn't send a doctor but a nurse so I was a bit peeved at first, but she was very good and told me outside her Mum and grandma had dementia so to always give her a call if I need anyone to speak to. After examining Mum she said she was going to put her on antibiotics as last week's uti hasn't responded well to the antibiotics as they had sent the last sample to the lab and it was of a type that wouldn't improve with the type of antibiotics they gave her. She also noted she's still got a nasty cough and checked her temperature which was high enough to suggest a reoccurance of her previous chest infection she had in.hospital in December. She's given her some extra strong antibiotics that should cover both infections as.we didnt want her going into hospital again. She also has prescribed a general antibiotic to keep here to use as soon.as I suspect a uti as I use test strips anyway regularly and normally can tell if Mum has one starting. So.....fingers crossed!!

Oh and incidentally, guess what else I was told when I asked the nurse about Mums lack of eating and that I was waiting for a dietician to come in order to get fortisip prescribed? Apparently you cant get it anymore. The dietician will give me recipe cards to make my own drinks for Mum! Oh as if I dont have enough to do!! NHS cut backs again!!

 

[Tin]

While reading your thread and your experience with g.p's I was hoping they would send a nurse, was going to suggest this to you, but there, it was a nurse they sent!! We have no problems with mum's gp, but the community nurses at our practice are just amazing and seem to know so much more about dementia. Lets hope things start to improve from now.

 

[la lucia]

when I asked the nurse about Mums lack of eating and that I was waiting for a dietician to come in order to get fortisip prescribed? Apparently you cant get it anymore.

I'm so glad that you've received some back-up and it sounds like it's going in the right direction but........ Fortisip? I'm sitting here with 7,000 mils - 28 x 2 compact bottles a day - delivered on an NHS prescription last Tuesday by Boots.

The NICE Guidelines suggest it shouldn't be a long term thing but generally that's for younger people. My mother now has it on a repeat prescription for the next few months while I try and recuperate the weight she lost after her stroke.

I'm on 'project maintain mum's mobility (ish)' after a major stroke followed by a hip replacement - she's 96! So I am trying, with the assistance of a physio, to build her strength up. Calories and protein are the order of the day. We had her in the (hospital) gym after her stroke!

Hopefully, your mum's antibiotics will help, certainly chest infections are appetite killers and will leave anyone feeling awful - let alone a PWD. I hope things improve for you and your mum. Well done for not giving up when you have such a useless GP. Your mum is lucky to have you.

 

[AlsoConfused]

You won't have the energy now but this GP and the practice sound so bad something should be done about them.

 

[Tara62]

Fortisip? I'm sitting here with 7,000 mils - 28 x 2 compact bottles a day - delivered on an NHS prescription last Tuesday by Boots

Yes, I've got it for my father very recently too, also on prescription.