Massive deterioration after hospital stay

MarleysMum

Registered User
Sep 17, 2020
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My dad was diagnosed with vascular dementia just over 2 weeks ag. However he had a bowel op in Feb 19 and had post op delirium so a CT scan was done that showed damage caused by vascular dementia but this was never shared with us.
two weeks ago he tripped and fell at home. Paramedics were called and it was suspected he may have had a stroke. So admitted to a and e, tests done and all clear. However they needed to test for UTI but he went into retention and catheter inserted. UTI test clear. He was very wobbly on his feet and at risk of falling (wasn’t like that a couple of days prior) so agreed discharge to intermediary care home for rehab and assessment as he lives alone.
After 2 days at IMC they wee still concerned re weakness in left side so re admitted to hospital for further tests for stroke. All of these have been clear but he seems to have had another UTI and has been v confused. After 10 days he has now been discharged back to IMC. I have spoken to the occupational therapist today and the person he described is not the man I knew 2 weeks ago. He cant even stand unaided, but just over 2 weeks ago walked unaided (no stick, frame etc) around Asda with me. He’s had a bowel accident and didn’t even mention it and apparently is just staring into space and not engaging with anyone. The OT couldn’t believe it when I explained how he was managing only 2 weeks ago with minimal support.
The communication from the hospital has been non existent (I’m in the process of addressing that) and with local lockdowns I haven’t been able to visit him in the hospital or care home.
The OT said they will give him a couple of days to re adjust and will then start assessing him to see how he can improve.
my mum had VD so I know that there can be sudden deterioraten but it was never like this.
Has anyone had a similar experience and did your loved one manage to improve
Thanks and sorry for the long post
 

Duggies-girl

Registered User
Sep 6, 2017
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Hi @MarleysMum Yes dad was admitted early 2019 with pneumonia (he was fine except he couldn't stand up) which worsened and he had to have intravienous antibiotics. The whole episode was a nightmare, dad changed from his lovely normal self into a frightened and agitated stranger. I became the spawn of the devil for a couple of days then dad had a heart attack followed by a stroke, he also had 3 falls in 3 weeks. We were called in on the night of the heart attack to say goodbye. It was a dreadful 3 weeks which I would never wish on anyone. The physio team were not very good although dad could just about stand with a frame after 3 weeks.

Yes he came home and he improved a good deal but that was down to me. While he was in hospital I visited twice a day and I got dad to stand and sit, stand and sit over and over again using the frame whenever I could. I never actually saw the physio people doing anything. After a couple of weeks at home dad managed to get himself to the bathroom on his own although it was very dodgy. Dad had another year at home and he became quite mobile with his frame but I had to move in 24/7 because he never got back to how he was previously. He didn't really know where he was and had to relearn the layout of his bungalow again although he never managed to recognise his kitchen again. He did return to his previous good natured self though which was a blessing as I don't think I would have coped otherwise.

Sorry that this has happened to your dad especially at this awful time of not being able to visit. It does sound as though your dad is worse than my dad was. I hope that you get some better communication from the hospital, I never managed to speak to a doctor in 3 weeks even though I was there twice a day and this was long before the covid thing.

Sorry that is very encouraging for you.
 

MarleysMum

Registered User
Sep 17, 2020
33
0
Hi @MarleysMum Yes dad was admitted early 2019 with pneumonia (he was fine except he couldn't stand up) which worsened and he had to have intravienous antibiotics. The whole episode was a nightmare, dad changed from his lovely normal self into a frightened and agitated stranger. I became the spawn of the devil for a couple of days then dad had a heart attack followed by a stroke, he also had 3 falls in 3 weeks. We were called in on the night of the heart attack to say goodbye. It was a dreadful 3 weeks which I would never wish on anyone. The physio team were not very good although dad could just about stand with a frame after 3 weeks.

Yes he came home and he improved a good deal but that was down to me. While he was in hospital I visited twice a day and I got dad to stand and sit, stand and sit over and over again using the frame whenever I could. I never actually saw the physio people doing anything. After a couple of weeks at home dad managed to get himself to the bathroom on his own although it was very dodgy. Dad had another year at home and he became quite mobile with his frame but I had to move in 24/7 because he never got back to how he was previously. He didn't really know where he was and had to relearn the layout of his bungalow again although he never managed to recognise his kitchen again. He did return to his previous good natured self though which was a blessing as I don't think I would have coped otherwise.

Sorry that this has happened to your dad especially at this awful time of not being able to visit. It does sound as though your dad is worse than my dad was. I hope that you get some better communication from the hospital, I never managed to speak to a doctor in 3 weeks even though I was there twice a day and this was long before the covid thing.

Sorry that is very encouraging for you.
Thank you for taking the time to reply. I suppose really I know he’s not going to get back to where he was prior to this. I’m fortunate that my sister in law is a manager at the IMC so at least she can go in to see him and she assures me that the physiotherapy there is very good. But it’s a long and familiar story that she’s not been there for me over the last couple of years so it’s been difficult to ask for and accept help (she’s my brothers wife who sadly died 4 years ago, 6 months after my husband died and 3 months before my mum died ). To be honest if she’d not seen him I’d wonder if they’d sent the right person home
 

Kellyr

Registered User
Aug 8, 2020
177
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Hi @MarleysMum ..my mum has vascular dementia with some Alzheimers thrown into the mix (so weve been told). Shes had it for about 8 yrs. Last March she got an infection and was admitted to hospital with suspected sepsis. She had urinary retention so was catheterised and stuck in the hospital for 3 weeks. The hospital didnt do much about physio as she wasnt able to follow instructions so they gave up. She has been immobile ever since, but I was warned this might happen as the period of immobility can really mess up the brain function when you have any form of dementia. Aside from that shes not deteriorated as much as I would have expected but everyone with these problems is so varied based on so many different factors. Really sorry you cant see your dad at the moment. Its making everything so much more difficult but hope you get all the support you need going forward. Good luck
 

MarleysMum

Registered User
Sep 17, 2020
33
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Hi @MarleysMum ..my mum has vascular dementia with some Alzheimers thrown into the mix (so weve been told). Shes had it for about 8 yrs. Last March she got an infection and was admitted to hospital with suspected sepsis. She had urinary retention so was catheterised and stuck in the hospital for 3 weeks. The hospital didnt do much about physio as she wasnt able to follow instructions so they gave up. She has been immobile ever since, but I was warned this might happen as the period of immobility can really mess up the brain function when you have any form of dementia. Aside from that shes not deteriorated as much as I would have expected but everyone with these problems is so varied based on so many different factors. Really sorry you cant see your dad at the moment. Its making everything so much more difficult but hope you get all the support you need going forward. Good luck
Thank you for your reply. My mum was the same - vascular dementia and Alzheimer’s. To be honest before she was diagnosed I had no idea that there were different types and that it could be mixed. I can only hope that my Dad is able to improve with help
 

MartinWL

Registered User
Jun 12, 2020
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My father's story has similarities, the operation, the UTI, the catheter. I believe is is common for a general anaesthetic in old age to exact a toll and accelerate decline.
 

MarleysMum

Registered User
Sep 17, 2020
33
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Well since my original post a lot has happened. I was told he wasnt progressing, needed nursing care and I had him for months rather than years - then a change in blood pressure meds worked wonders. The IMC worked really hard with my Dad and managed to get him walking again with a wheeled walker and he improved in all ways, including his mental capacity. He was able to express himself that he thought a care home was his safest option and was assessed as residential dementia. However he was restless in the night (but no challenging behaviour) so my 2 choices wouldn’t take him ! Found a good alternative and i took him end of October. Within 24 hours he was admitted to hospital with a severe UTI and sepsis which then moved to his bloodstream. But yet again he defied the odds and responded to antibiotics and after 4 weeks he’s been discharged but now to a nursing home as his assesment was that he needed nursing care. Fortunately I was able to get him in a nursing home that was my first choice and has an excellent reputation and I know people who have relatives there.
i went to the care home yesterday to sign contract and was delighted to be told they’ve decided to allow one relatives to visit for 1 hour per week. And then they actually took me to see my Dad and I spent an hour with him. He has declined massively but he still knew me and I have the comfort of being able to see him each week.
Once again I’m sorry for the long post (and the shocking grammar and spelling). Ive said before that I have lurked on here for years trying to get information from other people’s posts so just wanted to share my experience
 

Duggies-girl

Registered User
Sep 6, 2017
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I am so glad that it has worked out for you @MarleysMum and that you are allowed to see him, it is an incredibly emotional time and you seem to have everything under control.

I wish you well.