UTIs, seizures and hospital

Avis

Registered User
Nov 2, 2019
106
0
Im sitting here trying to get my thoughts together. Ive posted a bit about what has been happening to OH on other treads, but I wanted to get it all together to try and get my head straight.

Just over 2 weeks ago OH suddenly lost mobility and kept falling. By the Saturday he could not even weight-bear, so I dialled 111 and he ended up in hospital where he was found to have a nasty UTI (he hadnt had any other symptoms of a UTI) and was put on IV antibiotics. A doctor put the wind up me asking me over the phone if I would consent to a DNR form - I said yes as I know what resuscitation can mean, but I was shocked that I was asked over the phone and thought he must have taken a turn for the worse. I was therefore surprised to find when I next visited that he was sitting up in bead reading!

Over the next few days he improved, but still had mobility problems, so was eventually discharged with a zimmer frame and a package of carers to assist with washing and dressing under the reablement scheme. He had to have an OT assessment of him showering and, unfortunately, Host Mode kicked in and he managed to convince the OT that he did not need any aids or assistance with showering at all :eek::eek:. The carers were then cancelled as he supposedly no longer needed them. I was particularly surprised as he had needed me to assist with showering even before he went into hospital!

I started to get the ball rolling to get carers in privately, but on Friday, out of the blue, he had 5 major tonic/clonic generalised seizures (the last one, fortunately in front of the doctor in A&E) and ended up in hospital again. He was completely unresponsive at this point and was found to have a UTI and sepsis. The doctor said that probably the previous UTI had not completely gone and had returned.

Yesterday I phoned the ward first thing in the morning and was told that he was sitting up in bed, but when I visited later I would have said that an accurate description was more that he was slumped in a reclining position. He was still mostly unconscious, but would open his eyes for a few seconds and he was responding to their tests, although he had not spoken and his face was completely flat and devoid of any emotion. It was definitely a "lights on, but no-ones home" situation. It was, nevertheless, an improvement.

Im going to go and see him again once visiting hours start and Ill keep you posted.
You have been through the mill of late and must be in a constant state of stress and anxiety. I know we can not do much to help you but there are a lot of people on this forum who have similar problems and so can empathize with you. We are all wishing you strength and courage. God bless.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
Thinking of you dear @canary and hoping the last few days have brought some answers to where you go next with your husband's care.
I also hope you and your daughter manage to mend bridges as it sounds you need all the support you can get.
{{{{hugs}}}}
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Thank you @Splashing About , @Avis and @Sarasa for your understanding. Ive gone down with a filthy cold so didnt visit yesterday and Im still feeling rough. @DesperateofDevon your post made me cry - yes Im sure daughter is being given "advice" by people who have no knowledge of the situation.

On a much more positive and cheerful note - son has just become a dad for the second time. His wife gave birth to a little boy last night - a second son for them. Both mum and baby doing well :D:D:D
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Thank you @Splashing About , @Avis and @Sarasa for your understanding. Ive gone down with a filthy cold so didnt visit yesterday and Im still feeling rough. @DesperateofDevon your post made me cry - yes Im sure daughter is being given "advice" by people who have no knowledge of the situation.

On a much more positive and cheerful note - son has just become a dad for the second time. His wife gave birth to a little boy last night - a second son for them. Both mum and baby doing well :D:D:D

congratulations on the new grandson
Lovely news
Xx

I’m sorry I didn’t mean to make you cry, I just wanted you to know that you weren’t alone in the family situation.
Hoping today was a better day
Xx

I’ve been gluing my DNA into artwork this afternoon after visiting Dad.

off to visit aged mother tomorrow!! So an early night for me!!
Xx
 

charlie10

Registered User
Dec 20, 2018
394
0
Congratulations on the baby Canary :) a bit of starlight in a dark sky. With regards to your daughter, I wondered if she ever reads TP.....would she find it easier to understand how it is for you if she read some of your threads? Hoping you get over your cold quickly.....make it an excuse to coddle yourself! x
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
Just catching up.

Congratulations on the birth of your new grandson.

such a long day for OH will have tired him out and made him more forgetful and more grumpy that usual, so little point in staying longer. (I'm sure it tired you out too)

I'm in the same boat as @DesperateofDevon in that I talked non stop about mum and dementia after her crisis and OH wasn't interested. It isn't that he doesn't care about my mum, but that he can't cope with dementia and didn't fully understand it. He just lets things wash over him. (One of the reasons I'm dreading things with MIL, as he doesn't have his head in the sand, but lives in blissful ignorance - he thinks I imagine the signs of dementia I've seen in MIL - dau can see them as well).

I'm not sure your daughter is like that, she just doesn't understand the enormity of what is going on , and I suspect your OH presents in host mode when she sees him. I'm presuming she is in her 30s and these things don't happen to your friends when you are that age either. I work with a lot of colleagues with parents of my mum's age and there are a lot of us dealing with a parent with dementia, but until you've opened your eyes to see it it doesn't make sense and you can't understand it.

I've posted multiple times that your OH's lack of diagnosis is difficult to understand, and maybe the specialists just aren't opening their eyes either. We all know that unless the carer is listened to the full picture doesn't appear. But this doesn't help your daughter to understand it, which in turn doesn't help you.

I know you had the option of the other catheter before - doesn't sound like they've been very helpful when the local hospital doesn't understand everything to refer you back to the local hospital but does sound like the antibiotics are needed either way.

Sending some ((((((hugs)))))) your way.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Just catching up.

Congratulations on the birth of your new grandson.

such a long day for OH will have tired him out and made him more forgetful and more grumpy that usual, so little point in staying longer. (I'm sure it tired you out too)

I'm in the same boat as @DesperateofDevon in that I talked non stop about mum and dementia after her crisis and OH wasn't interested. It isn't that he doesn't care about my mum, but that he can't cope with dementia and didn't fully understand it. He just lets things wash over him. (One of the reasons I'm dreading things with MIL, as he doesn't have his head in the sand, but lives in blissful ignorance - he thinks I imagine the signs of dementia I've seen in MIL - dau can see them as well).

I'm not sure your daughter is like that, she just doesn't understand the enormity of what is going on , and I suspect your OH presents in host mode when she sees him. I'm presuming she is in her 30s and these things don't happen to your friends when you are that age either. I work with a lot of colleagues with parents of my mum's age and there are a lot of us dealing with a parent with dementia, but until you've opened your eyes to see it it doesn't make sense and you can't understand it.

I've posted multiple times that your OH's lack of diagnosis is difficult to understand, and maybe the specialists just aren't opening their eyes either. We all know that unless the carer is listened to the full picture doesn't appear. But this doesn't help your daughter to understand it, which in turn doesn't help you.

I know you had the option of the other catheter before - doesn't sound like they've been very helpful when the local hospital doesn't understand everything to refer you back to the local hospital but does sound like the antibiotics are needed either way.

Sending some ((((((hugs)))))) your way.

@jugglingmum wise words & good insight!
Husbands sound scarily similar! Mines so laid back at times he’s prone!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes, @jugglingmum - what you are saying is very true. He does indeed present in host mode whan daughter is there and I think that the fact that her husbands sister is a GP has a lot to do with the situation too.......
I've posted multiple times that your OH's lack of diagnosis is difficult to understand, and maybe the specialists just aren't opening their eyes either. We all know that unless the carer is listened to the full picture doesn't appear. But this doesn't help your daughter to understand it, which in turn doesn't help you.

I know you had the option of the other catheter before - doesn't sound like they've been very helpful when the local hospital doesn't understand everything to refer you back to the local hospital but does sound like the antibiotics are needed either way.
Believe me, it is extremely complex and, with only one exception, the specialists in London are listening to me. He has multiple symptoms, but no-one yet knows the cause. The reason the urologist in London referred him back to the local hospital is because I fear (and he agreed with me) that OH will soon not be able to travel up to London, even with hospital transport.
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
I'm glad the specialists are listening to you. So sorry to hear he is getting to the stage that he will struggle to travel in future.

GPs can be next to useless with dementia, blaming it on normal old age, which I find rubbish. There seems to be a widespread desire not to diagnose and blame something else. Friend at work's mum was diagnosed with depression, friend was relieved it wasn't dementia, with hindsight she thinks it was dementia then as that was what later was diagnosed and wishes GP had considered this, as it would have explained other behaviours better.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
OH is home now. He got in quite late in the evening and soon after I got him into bed.
Unfortunately, he now has an indwelling catheter and he arrived back with a large bag full of pipes, bags and a stand - and no instructions :eek:. I think I worked it out and there is no little pool of wee in the bedroom, so that is good :)
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
OH is home now. He got in quite late in the evening and soon after I got him into bed.
Unfortunately, he now has an indwelling catheter and he arrived back with a large bag full of pipes, bags and a stand - and no instructions :eek:. I think I worked it out and there is no little pool of wee in the bedroom, so that is good :)

Oh my lovely! so much for handover of care!
hoping life gets a little easier & some help arrives today
((((((Hugs))))))))
 

LizzieM

Registered User
May 6, 2019
54
0
OH is home now. He got in quite late in the evening and soon after I got him into bed.
Unfortunately, he now has an indwelling catheter and he arrived back with a large bag full of pipes, bags and a stand - and no instructions :eek:. I think I worked it out and there is no little pool of wee in the bedroom, so that is good :)
Feel free to pm me on the subject of indwelling catheters - lots of experience here with OH PWD. Happy to help.
Xx