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.

OMG, my heart goes out to you. What a nightmare.

So your dad is being looked after ok - that's a good thing.

Do you know which hospital your mum is at?

I got very lost after 1/3 way through

(it so mixed up in your head)
What is it you are asking?

why did your ? husband tell HCPs that your mum had nothing wrong with her.
she obviously has considerable cognitive impairment and is probably not safe to be left alone for long.
could you not have arranged for food to be delivered to your parents, rather than going out and about and to your parents when you had covid.
anyway, that's past now.
perhaps you/they are v rural.
round here there are people who will pick up and deliver what they can carry on a bicycle, from local shops, within the hour.
could you contact your local carers' centre who will be able to advise you more re local services.
good luck.

carers.org/help-and-info/carer-services-near-you

You sound exhausted OP. No wonder your explanation isn't as crisp as some posters might like.
I have no solutions but was in the same situation as you two years ago up until this January. Dad had advanced dementia, mum refused care for him (rather like your mum), then she had a catastrophic stroke. Then we needed full time care for both of them! And to LPOA in place. Nightmare and it nearly broke me.
My only advice is start casting around now for care - either at home or in a nursing home. Don't wait til you need it because it wont be available. Wait lists are appalling. And be firm with your parents. I wasn't firm enough and my sister backed my mum up when it was obvious that more support was needed. Social services got involved in the end. Even bigger nightmare!
Mum and Dad both died earlier this year and it is a great sadness to me that the last two years of their lives were a constant undignified scramble when things could have been so much better.

So sorry to hear. Sounds like your mum needs to be in a care home, especially if there are ambulances coming out all the time and she's making things up.
In a similar position I found a social worker who was brilliant and helped me move my grandma to a home where she thrived.

You poor thing. No solutions, just wanted to say you are in my thoughts tonight.

Really sorry if it was all confusing. We are still waiting to find out where mum is. We know which hospital but can't track her down.

My Dh spent 40 mins trying to convince the paramedic to leave mum at home due to her cognition. Sorry if that was not clear.

I have set up online shopping with the first delivery next week but we did not know when mum was coming out of hospital and they needed food and a slot could not be set up quickly enough.

Finally, there was no question in the post but your replies have guided me with important stuff so far so which have been a huge help that is the reason for asking. If it was not for Mn I would not have stood firm for the care package.

From this I will take:

1. On Monday we will push for a social worker. We have been trying but so far have not pushed as much as we should have and I can see the importance from your reply.
2. Start looking at care options for Mum and a small warden controlled flat for dad. This is going to be very very difficult but once we have the official diagnosis I can see no other long-term option.

Sorry again for the garbled post I am truly exhausted but wanted to post so I could pick up any other directions I could look in, which you came up with.

I am on my own with this with my Dh who has been hit hard by Covid but keeps going.

Thank you and as usual a few tears but that is tiredness as much as your kind thoughts

This sounds like a good plan. Keep pushing for the social worker they can definitely help.
I would also recommend the book Contented Dementia by Oliver James which is incredibly useful and insightful.
And take time to look after yourself whenever you can. You really don't need to feel guilty at all.

Oh @FlatOutAgain my heart goes out to you. It's so bewildering.but get those balls in the air. It'll make you feel better that you're doing something g even if they fall short. Well done x

Another day/night another shit show. Nurse called in the evening to say can you pick your mum up. We have done all the tests and she is fine. Well there is a thing and maybe if we had been listened to this would not have happened. She did not have covid so I said I cant drive out there as I have covid. Mum lives around 15 mins walk from the hospital. I live quite a way from there. Nurse said they had asked mum if she wanted to stay the night and they would take her home in the morning due to the availability of hospital transport. Mum wanted to stay.

3am phone call. Your mum has left the hospital and we dont know where she is. Everything my dh explained to the paramadic was now happening. I have no idea why no-one listens to us. The nurse said the same as the paramedic in that as soon as someone presents with chest pains they have to go through this process. She could see that in May alone we had 3 ambulances and three hospital visits. She had to be put on morphine whilst in hospital recently because of her behaviour to keep her calm, not upset the other patients and not to try to run away.

She found her way home as she has made the trip so many times and was born in the area so her brain knows how to get home.

She is now claiming that she never went to hospital. Tomorrow or maybe even today we will start all over again and she will try to call an ambulance. We asked Dad to take the phone away but he won't.

He couldn't help because he only has one pair of glasses, he won't buy anymore and won't use any we offer to buy, and mum had hidden them so he couldn't see. She has also hidden his mobile phone and his wallet so he can't leave the house. She is incredibly devious to get her needs met.

Our lives are in shit state and no-one seems to listen to us. The diagnosis soon may help but the only solution here is care. Dad of course does not want her to go into a home despite his life being destroyed.

It really does feel that for her own safety she needs to be in a home.
Assuming it's not a persistent and u diagnosed urinary infection causing confusion, I think you need to start looking
Sorry. But from what you've recounted that's my advice x

Sorry if I've missed bits of the story, but when are you expecting your mum to have a formal diagnosis of dementia?

When you speak to social services emphasise that she is abusing your father and putting him at risk of harm (by hiding his glasses/wallet/phone) - you'll at least be able to leave a message now and there might be a duty team who can call you back.

I am so sorry, this is terrible for you.

Oh my gooness, I dont have any advice OP but habe read your previous threads and my heart just goes out to you. We had issues with MIL but absolutely nothing like your experiencing and it was an amazing district nurse that eventually got things moving for us.

Id love to tell you to switch your phones off for a few hours and get some rest but doubt you'd feel able to do that 💐💐💐

Oh OP what an awful situation you are caught up in. I’ve no experience or advice to offer beyond somehow you must get some sleep, you cannot function on so little rest.
it makes me cross that so often nowadays the rights and choices of the elderly can completely ruin the lives of their relatives and take their choices away.
I hope that you can get some practical support, your mum does need to be in a home that can provide the care she needs and I hope you can find one very soon. In the short term can you arrange a more comprehensive support package from carers? Expensive I know but might just save your sanity. Wishing you all the best and hope this week brings some resolution.

Thank you

It is not a UTI and we desperately hoped it was but as she has just had 2.5 weeks in hospital they ruled that out pretty quickly. She has no knowledge of being in hospital.

She has been assessed by the Memory Clinic (OPMH) and they booked her in for a CT scan. This was later in the year but since then she had one when she was admitted a few weeks back. We have updated OPMH and cancelled the booked one. I will call them tomorrow to find out the timetable. She was informally diagnosed by a Dr. whilst in hospital as it showed brain shrinkage but the Dr. said she had to wait until it was formally reviewed by OPMH.

The care that is in place from the Urgent Care Team is pointless. They are so lovely and helpful but mum refuses to engage with them and they turn up twice a day, fill out the file and after a quick chat they leave. She won't allow them to do anything so any further home care will be difficult. Another reason why she has started to hide things is so the care team can't steal them. One step forward two back.

We have access to her medical records at the hospital. Yesterday after her extensive testing they wrote a letter to her GP. I have created a new thread on dementia to find out what one thing they said means.

www.mumsnet.com/talk/dementia/4586787-dementia-cxr

Thank you so very much

Thank you for all of your help. Trying to move things on today. Called the memory clinic to ask when the assessment will be. Their response was 4pm today???? I said that no-one had informed me and they said they had spoken to mum last week. She has no recollection at all and would not have been able to even understand the conversation. Not sure why they did not call me as my name is on their system for all correspondence. So had to cancel because dad has covid which they did not know. They now have to reschedule but it could take some time.

Still upset about mum walking home from the hospital in the middle of the night. Mum seems to think to men helped her. I have no words.

Waiting for a call from the GP to put a letter in place to stop the ambulance taking her in future if possible.

Calling Telecare for dad in case he has a fall so he can press the pendant to call a response warden. Between myself and my Dh we were able to get dad off the floor on Friday but he needs more help.

Calling Adult Social Care to see if a social worker can be assigned.

Fingers crossed as its not a good start but at least I got some sleep last night. Negative for covid now but feeling like crap. Dh on phone duty as well to get things done.

I just have to say I think you're doing amazing.

It beggars belief that a memory clinic would give a patient an appointment date when they have notes telling them to inform you, likewise that your DM was able to just wander out of hospital, I appreciate that everyone is busy and overstretched but the whole system is just broken.

I also wonder what happens to the elderly if they have no family to take control over their health and wellbeing.

I hope you get some help from the GP today

Thank you. The GP was very helpful and she will put in place what is called 'An Amublace Plan'. She has to find the specfic forms but will email something in the next few days.

Adult Social Care have referred us on an urgent basis for a social worker who can help us with advice and navigating the system.

I WOULD SAY THAT WITHOUT MN MOST OF THIS WOULD NOT BE POSSIBLE.

I am taking control slowly but if anyone were in doubt how much these forums can help than look no further

thank you

Goodness, OP, what a sequence of events. Your situation is definitely at crisis point, and although not quite the same as ours, I can see similarities.
DM wouldn’t engage, wouldn’t take meds, fled the house ( she was staying at my home and my DSis) and eventually we had to beg our GP to have her sectioned with the help of the SW team from her Council area. It also helped that a member of the public called the Police when she had escaped and was remonstrating in the street with my DSis.
Things just unravel so much that the safest place is a mental health unit as none of the other solutions offered cut it.
Sending you strength and patience. Eventually it does resolve I promise. The spiralling out of control stage feels like eternity but you have to go through it to get to a more settled stage. We are now seven years down the line. Hang on in there 🌺

Thank you. I have to say I am feeling 'off and on' guilt today as I unplugged the phone last night as I just needed some sleep. Fortunately no-one called.

Pendant alarm being fitted on Wednesday. Mum and Dad have to remain in the garden due to covid. I am negative so ok. I don't want them hanging around whilst the install is in progress and I can explain everything in a calm way when it is complete. Mum doesn't know as she will try to go missing if she knows someone is coming to the house. She also does not know about the key safe on the wall otherwise she will never sleep again. We told her it was to do with the electricity board.

I am going to have a serious conversation with my brother and sister about the future and a more permanent solution. Dad has said he doesn't want her to go in to care but it looks like it may well be our only option as I can't go on like this and neither can my poor dh.

So glad things are moving and you are getting a social worker. I honestly think that a care home is the best and safest option for your mum. She cannot go on as she is. Your siblings (and you when you get a moment!) should definitely read that book I recommended Contented Dementia. It gives very clear and compassionate guidance as to how to support a relative with dementia, and concludes that it is almost impossible to support them at home in the long run, and that there really is no need to feel guilty about moving them into care. (It is explained much better than I did just there...)

Oh Flat you and your DH have really been through it.

I'm not absolutely sure why you think you need a formal diagnosis of dementia; my DM was unable to co-operate with the tests at the Memory Clinic so no formal diagnosis was available, yet we have been able to activate the LPA for both health and finances relatively easily.

These situations often reach a crisis point before anything happens - certainly happened for my parents, and what I'm about to say is going to sound cold and heartless, but you have to make it absolutely clear to SS that your DM is abusing your frail father, that you can only visit 2-3 times per week for short periods and never at night. Your mother is now a known run-away risk at night and that ticks all sorts of boxes - did with my Mum.

If you have any energy I would also be complaining to the hospital about how a vulnerable elderly lady was able to leave the ward late at night. They should have phoned the police straightaway. And secondly to complain about the memory Clinic telling the patient under assessment for memory loss about an appointment - talk about poor communication.

Be kind to yourself. Caring for someone with dementia and who is still physically able is a real headache - my Dad was completely at a loss and my family and I could only be there intermittently.

@bluejelly thank you. I am reading Wendy Mitchells second book after reading the first. I will then read your recommendation - thank you

@DPotter You make a lot of good points.

The hospital have sent a letter to mum regarding the incident. Somewhat strange is that yesterday they sent the letter in a taxi to mum? I have not yet seen it but clearly they acted quickly. Until I can see it I won't be able to understand their side of the story. If she had have been injured or worse then the investigation would have gone back one step to understand why the ambulance took 15 or so hours to arrive. They did apologise but not being there after waiting all night started the chain of events.

You are 100% correct about dad and yesterday in the early evening the Social Worker called. We were told this would be a while but it was the same day so that was great. We discussed safeguarding issues for both of them and the SW will now move it forward with the Urgent care team that are currently providing care. If they cannot put a plan in place then it goes to the Wellbeing team and after that a long-term plan can be put in place.

In addition, after speaking with the GP yesterday she sent someone to check on dad. I did not know this until I called yesterday afternoon. That was so kind of the GP to do this.

There have been a number of mistakes made by the 'services' which do seem broken at times. I have been focusing on all of the good people who have tried to help us, both on here and in real life. There are so many wonderful people who are trying their best and when you are in the middle of it, it can be very humbling.

thank you very much indeed for your suggestions

I know it must have been v upsetting to hear your mum walked home the other morning, but she’s done herself a favour as she’s fast tracked herself up the system.
Give her an extra hug for that . When things are so stressful and chaotic black humour can get you through. Granted, you will have to register a complaint at some point, but for now it’s opened more doors.

Take any chance you get for rest. Calmer times are on the horizon.

@Mum5net yes you are right but we did not know it until after the event. From what I can piece together mum got picked up by a couple in a car and taken home. The issue is that she has no recollection of the event and Dad's story changes on every telling. I do believe that mum did get into a car as the bits that we have from the night show that part of the story as true.

The social worker wanted to focus on that event and as you say it has opened doors that we did not know were there. Got a call today from Community Independence Service who wanted to come round and do an assessment of Dad's needs given that he has had a number of falls. We haven't requested this but coincidentally my Dh found out about CIS this morning and wrote it on the to do list. When I mentioned it to him he said its on the list but I said no they have been in touch with us.

Memory clinic resheduled but will be another 2 weeks and at the clinic rather than at home. I was hoping for earlier but its still quite good.

After Dh research this morning we have a lot of outsanding services to call to find out what they can do.

I will keep this thread going should anyone else need help as there are a lot of services available its just you have to find them yourself with quite a few being referral only. With a Social Worker on board and now safeguarding issues those doors are opening.

thank you everyone.....millions