Worried and not sure what to do

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Hi everyone. I'm extremely worried about my Dad and not sure what to do. A couple of years ago he had spinal surgery and did not make as good a recovery as expected. He became extremely depressed. Given his age (77 at the time), his GP referred him to a neurologist. A scan was done, which showed an "appropriate" amount of white matter for a man of his age. He had slight memory problems at the time but nothing major at all. Fast forward to last June and he had a fall at home. I should say that he had cancer treatment many years ago that damaged the nerve endings in his feet and he has struggled with walking as a result ever since. He was taken to hospital following the fall and they did numerous tests but no real cause could be found. He was back up and walking around a few days later and was discharged home. He then fell again in September and ended up spending a week in hospital. Again, no cause could be found. He's been having private physio since and was making good progress with his strength and balance. He continued to be extremely depressed though and had tried numerous anti-depressants, all of which had side effects that were worse than the depression.

At the end of January this year he was sitting on the bed at home and slipped off it. He couldn't get himself back up so I went over to help my Mum get him up, which we managed between us. He went to bed for a few hours and then got up later that afternoon. He went to use the bathroom and again lost his balance and slipped to the floor. He then waited 6 hours for an ambulance, lying on the floor in an awkward small space. The ambulance crew managed to get him up and he was thereafter taken to hospital to be checked over. He spent 42 hours on a trolley in A&E before being admitted to a ward. Where he remained for 3 weeks. He had a couple of infections while in hospital which caused some confusion and some worrying symptoms (being convinced he'd seen people from the past working in the hospital, etc). He also became doubly incontinent, although this did clear. Once he had antibiotics this confusion cleared up and, besides being fed up of being in hospital, he was in generally good spirits and desperate to get home. He received no physiotherapy at all during this 3 weeks because of staffing issues. So naturally his mobility worsened. Because he'd spent 3 weeks lying down, they decided he needed to enter intermediate care for 6 weeks so he could have physio that would get his strength back up. We are now 7 weeks on and his mobility and mental state is declining rapidly. The intermediate care facility he is in is also short staffed so he's not had anywhere near the level of physio that he should have. He sits in a chair in a room with four bare beige walls, facing away from the window. He has had days where he's been in great spirits, making jokes etc. But over the last couple of weeks he has had some really bad days and it's almost like he's given up. He's clearly deeply depressed (he does have a long history of depression) and some days it's almost like we can't reach him. He sits and stares, starts sentences and doesn't finish them and just doesn't engaged with us at all.


The nursing home decided that he would be better off at home as hopefully being at home would improve his mental state. Steps have therefore been taken to make this happen. The dining room has been converted into a (hopefully) temporary bedroom for him and care package is in place and ready to go. He should have been coming home today. However, one of the doctors who visits the nursing home has now decided that cognition tests are needed, given the decline in Dad over the last couple of weeks. He had these tests yesterday and the results were mixed. They have therefore cancelled him coming home and have said the tests need to be repeated on Tuesday. They've also taken bloods, to check for a further infection. Yesterday I had a very upsetting discussion with one of the nurses who started suggesting that he could have dementia. My Dad was seen in the frailty clinic last year and was essentially given a clean bill of health. Referral to the memory clinic was not deemed necessary.


I guess my question is...... how can my Dad go into hospital at the end of January with all his faculties intact and now, 10 weeks later, he has days where he's lost in his own little world. Is this depression or is it indeed dementia? Can the impact on him be reversed or is this it now? I feel so devastated for my mum. She has essentially become a carer for him over the last 2 years and, whilst she's very strong, she's also nearly 80 herself. Their life is not at all what I thought it would look like for them right now and I'm terrified that things are only now going to get worse, not better. Is it possible that my dad could rally when he gets home and make a full recovery from this? I know noone has the answers but I'm not sure where else to turn right now.


Thanks for reading!
 

Louise7

Volunteer Host
Mar 25, 2016
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Hello @worrieddaughter81 and welcome, although I'm sorry to hear about your situation, it must be so worrying for you all. As you've experienced, a hospital admission can result in a downturn in mobility, and the fact that your dad had several infections whilst there, did, as you say, cause increased confusion. From what you have posted it does sound as though your dad may have developed Delirium, which is a change in mental state that can occur for various reasons, including infection. Delirium can take some time to clear, and sometimes the person does not return to how they were before. You may find the factsheet below helpful as it explains this condition.

It's good that the doctor has taken bloods to rule out an infection, hopefully he will be able to get to the bottom of what is going on. All being well your dad will be home soon, with the appropriate level of care in place for him, although even if he does rally and return to how he was before, as he is having frequent falls it will still be very difficult for your mum to manage this 24/7 without a lot of help. It sounds as if your dad was discharged from hospital under the 'Discharge to Assess' process, with 6 weeks care paid for by the NHS? You mention that the nursing home have decided that he will be better off at home, have social services & NHS been involved with this decision and do they agree? Unfortunately I think at the moment it's just a case of wait and see what happens on Tuesday, but I hope that your dad gets the help that he needs. Do keep posting as this is a friendly and supportive group, people understand and there's always someone here to listen.

 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Hi! Thank you for responding. Yes, I had considered that he may have Delirium, particularly when he was in hospital. I will have a further read about it.

My Dad wasn't really having frequent falls, per se. He had 2 or 3 last year. And hadn't had any at all between September and January as his legs and balance were so much better.

I don't know if social services or the NHS have been involved with the decision to send him home but I suspect so. I think it was the Discharge to Assess process that was started when he left hospital. He was due to be in there for 6 weeks but it's now been 7 weeks. He was due to come home today but he had a very bad day on Monday and they had to use a hoist to get him out of bed, so that's why the delay has happened. I honestly feel like he's just given up hope and that's why he's the way he is.

Thanks again for responding.
 

Spottydog

Registered User
Dec 8, 2023
156
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It really could be hospital induced delerium. Getting him into a familiar environment as soon as is feasible should be your goal to see if he can bounce back. Best wishes.
 

Jorange

New member
Oct 23, 2023
8
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Norwich
My grandfather paid privately for a second hip replacement as the NHS weren't happy to do it at his age (87) He was fine before going into hospital. My Dad visited him after surgery and he started talking nonsense. People were running up and down the corridors all night and then The Labour Party were let in to hassle them all. Physically he recovered but mentally he never did, Similar thing happened to my friends mum after a fall. After the op she was diagnosed with dementia while still in hospital and went downhill so fast. Hope your dad picks up soon and gets the help he needs.
 

AmaJ

Registered User
Mar 22, 2024
13
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Hi! Thank you for responding. Yes, I had considered that he may have Delirium, particularly when he was in hospital. I will have a further read about it.

My Dad wasn't really having frequent falls, per se. He had 2 or 3 last year. And hadn't had any at all between September and January as his legs and balance were so much better.

I don't know if social services or the NHS have been involved with the decision to send him home but I suspect so. I think it was the Discharge to Assess process that was started when he left hospital. He was due to be in there for 6 weeks but it's now been 7 weeks. He was due to come home today but he had a very bad day on Monday and they had to use a hoist to get him out of bed, so that's why the delay has happened. I honestly feel like he's just given up hope and that's why he's the way he is.

Thanks again for responding.
Hi. My Dad had delirium after his fall and while in the hospital. He said he had pain but couldn't tell them where. My friend who has 20 yrs experience with In Home care said often the elderly get UTI's and delirium can come from it. Once they investigated they DID find a UTI and a prostate issue. Once they treated that, there were no more episodes. I feel for you- this is hard, and bewildering. But the appropriate decisions will be made and you will make it through.
 
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worrieddaughter81

Registered User
Mar 28, 2024
14
0
Thank you so much for all the replies. We're still stuck in limbo. For some reason the blood tests they did last week had to be repeated yesterday, but we have no idea why. He continues to decline and is now extremely uncommunicative. He's not finishing sentences and just seems so lost in his own little world. I saw him on Monday this week and he spent most of the time getting very very upset. He feels hopeless and worthless and it's killing me to see him like this to be honest. He's always been such a capable man and now he can't do anything for himself at all.

Hoping that the further blood tests they've done will be clear and he can then come home. Then I guess it's just a case of waiting and seeing how he rallies once he's home.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
The decline in my dad continues to be shocking. The blood test they did showed low sodium levels and we were so relieved, thinking that could be a reason for how he is. They then repeated the test and said it was fine, so no treatment was given to him. He spent 3 days lying in bed, basically uncommunicative.

I've just got back from seeing him now and the decline even over the last 2 weeks is so upsetting. He now can't feed himself, doesn't seem to understand what we're saying to him and can't finish a single sentence. He kept saying he was in pain but couldn't tell us where. His voice has changed. He's staring into space. He doesn't remember who my partner is.

I'm guessing I now have to accept that he has some sort of dementia and, from the symptoms he's displaying, it appears to be fairly late stage. I'm just utterly baffled that this can have happened so quickly.
 

Spottydog

Registered User
Dec 8, 2023
156
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Of course it could be dementia but I don't think you have to accept it. Have they said what their next steps are? I would press for an answer as to what could have caused the low sodium levels. I'm saying this because earlier this year I had a very healthy member of my family have a staggeringly sudden and frightening mental decline and low sodium was detected. His sodium mysteriously went back up but his mental capacity did not return for quite some time. Low sodium can have quite devastating effects on the mind and body. They never quite got to the bottom of what caused it but a change in brand of medication or viral encephalitis were suspected. The family had to be very pushy to get them the attention they needed and keep reminding that this was not normal behavior for them. Best wishes.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Of course it could be dementia but I don't think you have to accept it. Have they said what their next steps are? I would press for an answer as to what could have caused the low sodium levels. I'm saying this because earlier this year I had a very healthy member of my family have a staggeringly sudden and frightening mental decline and low sodium was detected. His sodium mysteriously went back up but his mental capacity did not return for quite some time. Low sodium can have quite devastating effects on the mind and body. They never quite got to the bottom of what caused it but a change in brand of medication or viral encephalitis were suspected. The family had to be very pushy to get them the attention they needed and keep reminding that this was not normal behavior for them. Best wishes.

Thank you so much for replying. They have said they're referring him to neurology for tests but haven't said when this is likely to be. They had an MDT meeting yesterday so when I go and see him later I'm going to try and find out what's going on. The lack of communication from the care team is the absolute worst thing about all this. I feel like they're just leaving my Dad to rot because they don't quite know what to do with him. He should have been home 2 weeks ago and all of a sudden he's no longer deemed medically fit and he's declining by the day. It's just terrifying and I feel so helpless.
 

Spottydog

Registered User
Dec 8, 2023
156
0
Its a horrible situation. I think you need to be a bit pushy. Unfortunately the squeaky wheels get the oil in the NHS. When they say they don't know when the test will be, ask why don't they know or how long is the average wait. Best advice I can give is to find out when the consultant does the ward round and be there for it and ask to have an honest conversation about your father's situation. If not, ask can the consultant call you. Best wishes.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Just as an update, my dad has now been home for 3 weeks. Unfortunately he hasn't really improved mentally at all, which we were so desperately hoping he would. He seems lost in his own world most days. Doesn't really talk. Just sits with his head down. His short term memory is now fairly non existent. He has carers 4 times a day but is now in nappies full time as he can't walk at all and obviously can't always "do" on demand when the carers are there. There has been one visit from the OT/PT and they basically said they couldn't guarantee he would ever walk again. I feel like they've given up on him without even trying to help him.

We have another 3 weeks of paid for care at home and then it'll be up to my mum and dad to fund it. Social services came today and it's going to be upwards of £30k per year if he needs this level of care going forward. I feel so devastated for them that they've worked so hard and saved so much and it's just going to be used on him barely existing.

He's got a memory clinic appointment at home in a couple of weeks and my mum is trying to get him a referral to neurology. The doctor in the intermediate care home offered to refer him but my mum and I were both convinced he would recover mentally once he was home, which sadly hasn't happened.

I just don't understand how this has happened. 4 months ago he was walking, mentally alert and they were planning a holiday. Now he's bedbound and doesn't seem to know what day of the week it is. I have no idea if this could still be depression or if it's something infinitely worse. I'm having some very dark thoughts and now just hoping that if it is dementia, etc, that it won't drag on for long.
 

canary

Registered User
Feb 25, 2014
25,371
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South coast
I do hope they get to the bottom of what is going on.
Falls and UTIs can do terrible things to elderly people
 

Violet Jane

Registered User
Aug 23, 2021
2,114
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Delirium can take some weeks or even longer to resolve and people often don't get back to their previous baseline. With some people the Delirium doesn't resolve and they are put on anti-psychotics.

You say that your Dad was showing some slight memory problems a couple of years ago and those could be an indication that he had started to develop Dementia then. It's possible that your Dad could be suffering from Dementia, Delirium and Depression all at the same time. With Vascular Dementia there are commonly steps down which can account for sudden, big declines in cognition and general functioning.

Many of us wish for our PWD to die rather than linger on in a poor state with no quality of life. I certainly did in the case of my mother. People with dementia usually live for several years after diagnosis and some live for well over a decade.
 

SherwoodSue

Registered User
Jun 18, 2022
692
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Rather than thinking about all these isolated diagnoses it might help you to think of a process
Some people will say my dad was unwell after a fall
Equally true to say they fell because they were beginning to decline
It’s hard because of the speed of decline..
Believe me that emotionally the roller coaster where they improve to dip again is no easier
Reduced mobility is one thing, loss of continence is another as is increased confusion. In your dad they are all happening at once. It does seem that many areas of the brain are struggling 😔
 

Spottydog

Registered User
Dec 8, 2023
156
0
It is a very sad situation and I hope you and your dad get some answers. On a practical front it sounds like your dad is a candidate for Attendance Allowance... It's not means tested and could help with care costs.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Thank you for all the replies. I appreciate them so much. My mum is in the process of applying for attendance allowance.

He had his memory clinic appointment last week. He performed well in some areas but less well in others. The lady who conducted the test was confused as a lot of his symptoms are not "classic" for dementia. He has a 6 week wait now to see a doctor and hopefully have a scan.

He continues to decline. He is now seemingly fully doubly incontinent and it's extremely hard for my mum, as he is regularly "doing" on the floor when being transferred into bed from the commode and also in bed. So much washing and cleaning for her and she's almost 80 herself. I feel heartbroken that this is what it's come to for both of them. The care from the private company started last week and it has been awful. They tendered for the job and guaranteed they could do the times my mum asked for but they've been hours late most days for each visit. The carers are unfriendly, seem to be largely very untrained and it's just really not satisfactory.

I have to admit that I have started to dread going over to visit them. As awful as that sounds. I hate seeing my dad like this and I hate the toll it's taking on my mum.

Not much else to report. The waiting continues.