Mum Update - bad to worse

[FlatOutAgain]

Hi, thank you all for you advice in the past on my previous two threads. I am not sure where I left it all.

The advice from the memory clinic (Out Patients Mental Health) was to put mum or sertraline 25mg. No idea why but they pur her on 50mg and we did not spot it. After 3 days she had a reacton and her potassium and sodium levels crashed. She ended up in the high dependancy unit and was there for 2.5 weeks. She came out last Tuesday and we, thanks to advice, got the Urgent Care Team in place for 2 visits per day. We went through it on Tuesday night with the care person who visited Mum's house. Just as she arrived Mum said she needed to go to hospital. We have been her so many times. I explained she had just come out but she had no recollection. I got her on her feet and gave her a talking to and she was right as rain. No suprise. So we got the package in place but mum is refusing to deal with the care people and says she does not need it.

So it seems to be the way that you think you have hit the bottom but realise that you are nowhere near it. I did not realise that I had picked up Covid, most likely from the hospital on my visits. So I carried on with phoning them on Wednesday and then on Thursday I did a test and found I had covid. I had no choice but to go out and do their shopping. I kept a mask on but if there was another way I would have taken it but they had no food.

Dad seem absolutely fine and I had all the windows open and he was managing fine despite all of his physical issues. I could not tell mum as she would have not been able to cope. In hindsight this was a mistake and I know some on here may critisice me but I am worn down and not thinking straight. Dad called yesterday and he was not feeling well. Unsurprisingly he had called an ambulance. We have one every few days with mum. So we (my Dh and I) went round there last night and did a covid test on dad and he was positive. He was on the floor and drifting in and out. My dh chased up the ambulance (it was called at 9pm). Mum was all over the place. I informed the care team what was happening but they have all of the covid protocols in place.

We managed to get dad onto a chair and both he and mum slept through the night with no sign of the ambulance althoug my Dh had chased it. I have had no sleep and am exhausted. At 4:30am I was cleaning their house. We settled them this morning and once again I spoke to the care team. We got home and got 1 hours sleep and the phone rang. It was the paramedic to apologise as there had been a mix up and they were no looking at dad. They asked if mum had mental capacity as she had been saying dad had had heart attacks etc. but of course he hasnt. So we sorted everything on the phone and there was no further action as we had done everything that was needed. Put the phone down and a few mins later it rang again. I would say that everytime it rings my heart sinks.

As the paramedics were writing up the paperwork in the ambulance, mum had seen her chance and told them she was having a heart attack. Sorry for swearing but For Fucks Sake. The paramedic said they had to take her in to the hospital. I was in pieces so my Dh took over and after 40mins on the phone we agreed they had no choice.

I have LPoA but without the formal dementure diagnosis their local capacity check trumped me. We have had the CT scan and her brain has shrunk but we need that official diagnosis but have had to wait as she has been in hospital. My dh explained that now dad was on his own with covid and could not manage and mum had absolutely nothing wrong with her and would be put outside the hospital on her own after after a check and suddenly we had two vulnerable adults on their own in very poor situation.

I am at a loss here. We (my dh and I) are struggling to cope. We both have covid and are feeling dreadful, we havent slept for a day and a half and now have mum and dad in a bad way. The urgent care team agreed to switch over and look after dad and for that I am so incredibly grateful. I have no idea where mum is or what is happening to her. She wont get into a taxi, she had no mobile phone and the paramedic said he would ask the hospital to provide transport but it was their call.

I would like to think this is rock bottom but my experience suggests otherwise. I have made so shit decisions but everything has been done for the right reasons and it is not as if we are young with both being around 60 and the future is looking less than rosy.

Thanks for listening.

Sorry should have said. About the humor, mum lives near to the hospital on a busy road so there are always ambulances passing. We did laugh together (the social worker and I) that mum is one step from standing in the road and flagging them down as they pass. Its funny but very close to the truth

Really pleased for you that this horrendous incident seems to have finally triggered a serious safeguarding incident and opened the necessary doors to keep your mum and dad safe.

Ultimately it may not be possible to keep your mum at home. I always advise people again making promises to 'never put someone in a home' as you have no experience of what caring for someone is like - care workers have a whole team, training, a building designed for care, all the equipment and supplies they need, work shifts and get to go home at the end of their shift. You have none of that plus no breaks or holidays.

However until now you didn't have any of the necessary support. If your mum does need to go into a home everyone will be able to put their hand on their heart and say everything has been tried.

Saw mum yesterday to set up the CareLine service. They now have an emergency button should either of them fall and need assistance. Their first online shopping arrived so its now in place. The anticipatory care information is with the DNR information for the paramedics. Interesting that it is kept in the fridge on the advice of the care team. They said that paramedics look in the fridge for this type of information.

Was doing a bit of gardening when I started to find house items hidden in different bushes. There were vases, photographs (framed) etc. hidden all over the place. Fortunately the weather has been nice so no damage done.

Mum and dad were getting very aggressive with each other which is not nice to see and I can handle it fine but my Dh has trouble seeing it so I need to look after him and have said unless I need his physicality at Mum's then I will go alone. He does so much already.

Have made a complaint to the hospital (PALS) via email especially after it was confirmed that mum got into a car with 2 men. We did explain that this was a real possibility to the paramedic but were ignored. Now with anticipatory care in place and hopefully an investiagtion by the hospital it 'should' not happen again.

Will get ready meals on the online shop but if this does not work then I am looking into meals on wheels. Need to get a cleaner sorted as I am doing the cleaning when I can but its too much to try to do everything

Thank you as always for your care and support x

Thats great news OP, you sound so different in your tone since your first post, finally things seem to be slotting into place, I hope things now stay on an even keele for a bit for you and your family

@Ilikewinter thank you. Yes you are right.

The review from the Community Health Team has been put back a week as the current consultant is leaving and the cases have to be transferred. As I have access to Mum's hospital records I saw today that they were putting the brain shrinkage from the CT scan down to one of three things: FTD, Alzheimers or encephalitis from 14 years back. Looking at the symptoms its a toss up between FTD (much rarer) and Alzheimers with my money being on the later. I certainly hope so as FTD has a genetic element which could be a concern.

No ambulances called this week which is just great and not something I expected. I have been seeing mum and the days I could not make it I have called. The Urgent Response Team are still going in and I think that is helping bring a structure to their lives.

I meant to sort out a cleaner this week but honestly I have not been able to find the time. I must do it next week. Overall we are in a much better place than last Friday night which of course was truly awful.

thank you

Up until yesterday we had been a week or so free of ambulances. Yesterday mum wanted an ambulance and dad called me whilst I was at work and I advised him to call the GP as it was in hours. The GP talked mum down and it was clear that as she had been denied an ambulance it was only a matter of time.

I took some time off work and called in this morning. All was fine and they both seemed ok. This afternoon dad called to say he had popped down the garage and when he went back into the house the ambulance was outside. He showed them the Anticipatory Plan - the Dont take her to hospital paperwork and he did not know what was going on. I spoke to the paramedic who said he was waiting for a callback from the GP but mum was fine which of course she is physically and they won't take her in.

So yesterday it was the GP and today the paramedics and the GP. The paramedic was lovely and said that in time she will log enough calls to 999 to become a frequent caller at which point they will stop attending and do the calls over the phone instead.

I can't see what else I can do other than manage as best we can. Everything is in place but she keeps calling ambulances. She will have to go into care at some point, her memory clinic appointment is the 1st of August now and I have written a letter to the new consultant detailing the history and relevant hospital letters/records. The impact on my dad's life is awful and for that reason we have to start looking at care after the diagnosis.

Any experience of looking for care or what we need in place to start the process would be very welcome.

Thank you for listening

@FlatOutAgain, I dont think there is anything more that you can do, however the recent events have shown that the systems that you have managed to get into in place, the anticipatory plan etc are working, unfortunately I think its now just a case of riding it out until the memory clinic appointment and then look for the next stage of care like you said.

I dont have any advice re care homes, my only experience with MIL was continuous care at home (she didnt have dementia though).

I wonder if the GP or Memory clinic could advise or via adult social services as I think she'll need a financial assessment unless self funding.

Hold on in there 😊💐

Sorry to hear @FlatOutAgain. In terms of finding a care home, we looked at the CQC website to read the reports and then visited about 6 different homes. Some were grim and institutional but we found 2 that were really homely and had a good feel. We joined the waiting list and one came up in about 3 months. It was a brilliant home with incredibly kind and hardworking staff. My grandad flourished there (despite his dementia) and we got to know many of the other residents too. I used to really enjoy visiting him there - much more than when he was at home and clearly struggling (but in denial).

I will look at the CQC website and also set up some visits (really really not looking forward to that at all) as well as contacting Adult Social Services whom we have spoke to a number of times.

When I visited yesterday mum said, in a lucid moment, she would not call any more ambulances, and 3-hours later she called one. I watched her try to make a cup-of-tea and it was heartbreaking. She did not know where the teapot was and after I showed her she did not know where the tea bags were and then forgot she was making tea.

Dad says she screams at him that she is having a heart attack and he doesn't care that she is going to die. Dad was on the last of his reserves yesterday and looked tired and worn out. Being honest I am surprised he has lived this long with his health issues and looking at him yesterday it seemed as if he was ready to give up.

My biggest fear is that dad needs hospital treatment or dies and either means that mum is on her own at home and cannot function at all. I have to try to find a solution as quickly as possible to make sure that we are ready to go.

I am working hard at this and I am a naturally optimistic person although this has tested me and I have got down and cried a few times. I have the support of my Dh which is invaluable.

thank you

@FlatOutAgain I'm so sorry. Huge hugs to you.

Could they both go into nursing care home together? They absolutely don’t sound safe and this is not sustainable for you at all. Many nursing homes have double rooms for couples to stay together. I don’t think you have another choice at this point other than residential nursing care…
good luck x

@FlatOutAgain You are working extremely hard and it is entirely crushing. Sadness, annoyance, grief, disbelief, frustration - all these emotions are yours all at once while you navigate this.
Bloody awful time when you are trying to then run your own household / work.

Her SW might be able to help you get temporary respite for your DF. Keep on a t the SW if you can.

On care homes. Think abut seeing three. Only go to six if the first three don't seem the right fit.
Word of mouth feedback on care homes is a good route.
If you are unfamiliar with her area then:
Ask local dog walkers as they know everything.
Ask at their local chemist.
Ask the estate agents as they tend to be in tune

And consider the carehomes in your own area to save you travelling

When it was clear that mum was going into a home I read all the care reports on homes in our area and there were a few that I dismissed on that basis. However there were others that sounded wonderful but I had heard of from friends who worked or visited there and I knew I wouldn't want mum to be there.

If you are on FB it might be worth asking your friends if they have any experience - even visiting with the Guides or whatever.

@sjxoxo I think dad will be fine at home with daily help. We are waiting for a review of the house so it can be set up for his needs. The care team said this may take a while but it is in progress. It is a good idea though and one we had not considered should it come to it.

@Mum5net Yes 3 would make sense. We are going to set off on that journey after the diagnosis in a couple of weeks. I would rather get on with it now but it seems it is best to wait then we can speak to the care home with all of the information. If we can get the home set up for dad and if he will accept he needs a motorised scooter, which he is currently rejecting, then he can see her daily if the home is near dads.

@IthinkIsawahairbrushbackthere I only know a couple of people who had parents in a care home and they have both sadly died. I agree that word of mouth or recommendation is the best way forward and although I don't really have social media apart from this and whatsapp I will reach out to a friend who has been a paliative care nurse for the last decade. Also, my neighbour was a district nurse up until last year when she retired.

Got a call from PALS earlier. The lady was really nice and asked how we wanted to progress the complaint against the hospital. I said not to put it forward as an official complaint but rather put two things in place. 1. A letter accepting what happened so we can use it along with the Anticipatory Plan for the paramedics. 2. A big red flag on the hospital system to say mum has safeguarding needs. She said saw no issue with the request and to give her a week. The fly in the ointment is the emergency team use a different system so she will speak with them to see what could be done.

Its like gathering single pieces of a jigsaw. This will be two more pieces. The issue I have is that I have no picture to work from which is why I post on here as you lovely people give me an idea what it looks like.

Thank you

first of all thank you @bluejelly the Contented Dementia book is incredibly useful and has already changed the way I deal with mum so thank you again for the recommendation

Took mum to the Memory Clinic today for her second appointment. I wrongly thought that the consultant would have looked at the scan and update me on things. It turned out he worked from the scan notes that the radiographer had made. He did read all the notes I had sent and it was a comedy scene where mum was answer questions with answers that bore no relationship to the truth.

Consultant: How is your physical health?
Mum: Never been better I am absolutely fine.
Consultant: Do you exercise? (she never has btw)
Mum: Starts waving her arms around demonstrating various exercises that she does
Consultant: Do you feel safe at home? (She is obsessive to the point the windows are not only locked but have chains and padlocks on them)
Mum: Yes its a lovely neighborhood with lots of friendly people I feel very safe

WTF! who was this woman sat next to me.

The consultant was lovely, patient and very understanding. Mum's iron levels are rock bottom and her thyroid is very very high so he has passed that over to the GP (who is currently on holiday).

I am still no closer to knowing what type of dementia. It is either FTD or Alzheimers or possibly mixed (waiting for the Admiral nurse to call me). In all honesty it doesn't matter apart from the FTD is genetic with a 1 in 8 chance that it will be passed on. I will have a test for this but looking at the symptoms it more closely relates to Alzheimers. If it is then I won't go for any medication as mum is 82 and with the issues over the sertraline I don't want to put her through it. Also the recent report on the initial studies on Alzheimers being wrong doesn't help.

So here we are. Mum has a dementia of some kind. Her short-term memory is in pieces to the point that within seconds she cannot recall what was just said. She is hugely anxious about her health and dying so calls out ambulances, the house security is at defcon 1 level and dad's life is restricted due to her anxieties over him.

The hospital has sent a written apology and said that a care plan is now in place at the hospital. The anticipatory plan is in place. The Discharge care has finished but both of them (mum and dad) are refusing any further help including online shopping. I have ignored them on this one otherwise it will be as it was with them eating pork chops every day. I kid you not it was every single day as mum forgot so then just did pork chops and dad never mentioned it.

Thank you for all of your help I now need to assess where we go next but ultimately it will be care for mum so we will start to look around but given that dad doesn't want her to go then its a bridge to cross at some point. As previously mention at the start of this post the recommended book is very helpful and explains that care is the right thing to do for her.

I know I keep saying thank you but thank you :)

Hi @FlatOutAgain I'm so glad you found the Contented Dementia book useful. I found it invaluable too. Took away all the guilt and enabled me to make the practical steps required to get the care my relative needed. Once they were in a care home I was able to enjoy spending time with them again, rather than getting stressed and trying to 'fix' them every time I saw them.
It sounds like you have made good progress with your mum and the various services! I hope things get easier from here on in. Do keep updating this thread I think it would be really useful for others too.

I am sorry to add to your stress levels but if you could cope i do think you need to progress the complaint with the Pals team (if not too late). It is only then that improvements can hopefully be made for future patients. Wishing you well.

@FlatOutAgain Sounds like this ‘episode’ is coming to its natural conclusion. Sadly, all too soon, you’ll be back on the merry go round and off you go again.
There’s little consolation in knowing that you have navigated the system as best you could and you have huge amounts of extra knowledge for the ‘next time’
My DSis and I eventually had holdalls for them and for us stock piled in their home to cope with emergency hospital visits. We always had our cars fillled up with petrol and we kept extra knickers , charging cables , power banks and a toothbrush in our handbags.
We definitely found our attitudes towards DParents became more resentful and more hard nosed every time they pushed us to the edge.
I have started future proofing so I don’t do this to my kids.

Just ... good luck. Definitely find a good care home for your DM and persuade your DF that he can see her frequently. But despite all her untold problems, he will undoubtedly be lonely. Have you had any help from your ?DS or DB?

You have worked so hard to get this far - amazing, and I'm raising a glass tonight to the supportive, knowledgeable nest of vipers that's the Mumsnet community.

When it came to choosing a care home for mum we learned (the hard way) that what really mattered to her was the quality of the food and wine, and the number of people who didn't have dementia (she didn't have dementia herself). You can do as much homework as you like on CQC ratings and so forth but at the end of the day if you visit several (and I'd start with the least likely one) you'll soon get a gut feel for whether you trust the home to take good care of your mum.

Good luck

He did read all the notes I had sent and it was a comedy scene where mum was answer questions with answers that bore no relationship to the truth.
The convo you describe is exactly like the one my mother’s GP had with her when we took her to see him, after writing to him explaining all the problems (she obviously had severe cognitive impairment but wasn’t diagnosed properly for years even after this).
Are you looking after yourself?
> Oh yes I shower every day and brush my teeth twice a day (both very untrue, she’d scream if anyone tried to shower her, didn’t brush her teeth and she’d given up even getting dressed)
Are you eating well?
> Yes I eat breakfast with DC and then I have lunch and make dinner (nope)
Are you doing ok on your medication?
> Yes fine (some of her meds were unopened and there were tablets all over the floor)
Are you exercising?
> Yes I go for walks (she never walked anywhere)

I have nothing to offer unfortunately except my sympathy and understanding of how hard it is. She did end up in a care home but it took way too long.

Reading this brings back memories for me of helping my mum deal with my grandparents dgm diagnosed with alzheimers, dgf Parkinsons and spinal arthritis.

The times my mum got called from work because she'd 'lost her purse' (behind the bread bin, in the freezer, in the curtain lining...) my dgf had taken her money...(He had his own under the carpet!) Or the day we had been and cleaned ahead of mum's brother turning up and had to ring him to say 'the chicken is in the oven' so she didn't forget - when he got there she'd switched the oven off and the chicken was raw!

I don't know what the systems are like now - my stories are 25yrs old. But what I came on to say is keep hold of your DH. Keep your bond strong. Its a long fight and a hard one. Make sure you take some time for just you and for you as a couple to keep connected. Its hard when you are working, get covod and have other things happening in life. But ever now and again your siblings need to take a turn a weekend each every 2 months or something to give you some space. Things will get easier once dm is sorted with sustainable care - but it won't be the end.

My grandparents ended up in a home caused by my dgf breaking his hip and the hospital refusing to discharge him home. They shared a room for the remaining 2 years of her life and then he remained in the home until he died several years later. It was the home that saved my mother's sanity - that and her team at work (she worked in adult mental health ironically!).

Thank you for your replies. Another update:

The memory clinic called yesterday, bearing in mind that I took Mum on Monday this week. The consultant would like to see Mum as soon as possible and the secretary said not to worry?

Had a day off on Friday and was really looking forward to going to the beach with Dh. Yes of course the new appointment is 11:30am on Friday. I was a bit fed up tbh.

No idea at this point why they need a bit of a rush on a dementia patient given that he has written to the GP about mums thyroid and iron levels.

@Roystonv thank you. Yes I agree that unless you push then changes are only made very slowly. I really don't have the fight in me to push it further with working, mum & dad and other family issues which take my time. The hospital have a care plan in place, the paramedics can call the emergency dept. to access it and we have had a written apology. Also, mum is very cunning so unless the staff put the sides up on her bed she was always going to find a way to get out. I have a lot of sympathy for the staff who are doing a brilliant job.

@Mum5net I did get a bit fed up when I lost my day out on Friday. In my heart I know that mum could have had a better life as dad is mean with his time and his money and has never supported her. He has added to her anxiety over the years and is now reaping what he has sewn. With that in mind I cannot feel anything other than sorrow for her. Regarding the future both me and my Dh have been learning Italian and I am going back to the piano when time allows. It is thought that languages and musical instruments slow cognitive decline so its the least we can do. We also laugh about our very bad Italian.

@LadyGardenersQuestionTime Mum eats whatever is in front of her declaring that she doesn't have an appetite then proceeds to eat everything. Yes I have always been one for 'gut feel' and it has served me well in the past.

@FictionalCharacter It is like a Little Britain sketch when you are in the middle of it. I couldn't say in front of mum 'that's not true' as that would be unkind. I feel that the consultant has seen it all before

@BadPaintDay I have a sister and brother both older than me. My brother lives abroad and has an 'axe to grind' against mum and dad. I honestly believe he has reconstructed memories from childhood that did not exist to justify his position. He is being unfair, unkind and needs to grow up but that is not going to happen. I have a good relationship with him but then I very rarely stick up for myself. My sis lives a few hours away and I know that she really loves mum and dad but makes lots of suggestions on how I should do things. Not very helpful for met tbh but I smile and let it go. My Dh is bloody brilliant he listens to me without judgement and has put so much work in he deserves a medal. Apart from me no-one will know how much he has done to help but that is enough for him.

Will see what happens on Friday. Fingers crossed

Sorry forgot to say.

The Admiral nurse called back. She was incredible. So kind, gentle and thoughful. There are Admiral nurses in Mums area so we are going to book them to see Dad to offer him support and reassurance as they focus on the carers. They will also help support me and Dh should we need it but as we have each other their time is better spent with others who are on their own.

I would recommend calling them if you need support as they are wonderful