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And so the latest round of fun begins

CardiffGirlInEssex

Registered User
Oct 6, 2018
343
0
So after a couple of good months in her care home, things have gone downhill with Mum and she is now back in hospital.

She developed shingles at the end of September, eating went out of the window and she lost quite a lot of weight by late October. She couldn’t remember that she had shingles and kept scratching the blisters until she got an infection. Antibiotics for that, then more antibiotics for a UTI. She didn’t seem too bad when I saw her on 28 October, though she was definitely more confused than before.

Then on 1 November she fell in her room, banged her arm and her head, resulting in a trip to A&E. She was there for 12 hours or so, they did put her on intravenous fluids whilst there which seemed to have a positive effect on her appetite. Otherwise they said all ok, CT scan didn’t show any bleeding in the brain.

However, despite having been given the all clear at A&E, on 10 November she was back there with a high temperature, confusion and a really severe haematoma on her forearm. She had been mobile as usual two days before, then the day before it needed 2 people to get her out of bed, then on the day she went to hospital she couldn’t be got up at all. So she has been admitted, is on strong antibiotics for what they hope is cellulitis (but might be an infection within the haematoma itself) and has had more scans and X-rays which has picked up and intraventricular bleed in the brain. She’s mostly sleeping, very confused , often unwilling to eat or drink though that does vary, and completely unwilling to attempt even sitting on the side of the bed. Today the nurse said she had been resisting them when they attempted washing and pad changing though that’s the first time that’s been mentioned.

To be honest I was prepared today for them to say they would stop treatment, but no they are going to keep with it for now. I am not rushing to make the 200 mile journey, I will have to book a visit which will be max 30 minutes, in full PPE so she will probably not know who I am anyway. I’m scheduled to g9 next week so hope to book to see her then, more in the hope of speaking to a doctor than anything else.

On top of that my dad is becoming increasingly confused so I’m getting some very odd calls from him. It seems to have coincided with the clock change so I’m hoping it will settle but it is a concern. He has been thoroughly checked by the GP including blood tests and there is no infection or other obvious cause. He is in the house, alone and bedridden, for probably 20 hours in every 24 but will not even begin to consider trying a care home.

I am doing my best to keep calm and carry on, I have already been down twice in the last 3 weeks and don’t feel the answer is to keep dashing there but like everyone else on here I have the constant nagging guilt lurking just under the surface. I just want to know when this is going to end, sounds awful I know but none of the three of us is enjoying this.
 

notsogooddtr

Registered User
Jul 2, 2011
1,061
0
So after a couple of good months in her care home, things have gone downhill with Mum and she is now back in hospital.

She developed shingles at the end of September, eating went out of the window and she lost quite a lot of weight by late October. She couldn’t remember that she had shingles and kept scratching the blisters until she got an infection. Antibiotics for that, then more antibiotics for a UTI. She didn’t seem too bad when I saw her on 28 October, though she was definitely more confused than before.

Then on 1 November she fell in her room, banged her arm and her head, resulting in a trip to A&E. She was there for 12 hours or so, they did put her on intravenous fluids whilst there which seemed to have a positive effect on her appetite. Otherwise they said all ok, CT scan didn’t show any bleeding in the brain.

However, despite having been given the all clear at A&E, on 10 November she was back there with a high temperature, confusion and a really severe haematoma on her forearm. She had been mobile as usual two days before, then the day before it needed 2 people to get her out of bed, then on the day she went to hospital she couldn’t be got up at all. So she has been admitted, is on strong antibiotics for what they hope is cellulitis (but might be an infection within the haematoma itself) and has had more scans and X-rays which has picked up and intraventricular bleed in the brain. She’s mostly sleeping, very confused , often unwilling to eat or drink though that does vary, and completely unwilling to attempt even sitting on the side of the bed. Today the nurse said she had been resisting them when they attempted washing and pad changing though that’s the first time that’s been mentioned.

To be honest I was prepared today for them to say they would stop treatment, but no they are going to keep with it for now. I am not rushing to make the 200 mile journey, I will have to book a visit which will be max 30 minutes, in full PPE so she will probably not know who I am anyway. I’m scheduled to g9 next week so hope to book to see her then, more in the hope of speaking to a doctor than anything else.

On top of that my dad is becoming increasingly confused so I’m getting some very odd calls from him. It seems to have coincided with the clock change so I’m hoping it will settle but it is a concern. He has been thoroughly checked by the GP including blood tests and there is no infection or other obvious cause. He is in the house, alone and bedridden, for probably 20 hours in every 24 but will not even begin to consider trying a care home.

I am doing my best to keep calm and carry on, I have already been down twice in the last 3 weeks and don’t feel the answer is to keep dashing there but like everyone else on here I have the constant nagging guilt lurking just under the surface. I just want to know when this is going to end, sounds awful I know but none of the three of us is enjoying this.
Sometimes there really are no words. Take care of yourself and try to take one day at a time. What will be will be.
 

JanBWiltshire

Registered User
Jun 23, 2020
96
0
So after a couple of good months in her care home, things have gone downhill with Mum and she is now back in hospital.

She developed shingles at the end of September, eating went out of the window and she lost quite a lot of weight by late October. She couldn’t remember that she had shingles and kept scratching the blisters until she got an infection. Antibiotics for that, then more antibiotics for a UTI. She didn’t seem too bad when I saw her on 28 October, though she was definitely more confused than before.

Then on 1 November she fell in her room, banged her arm and her head, resulting in a trip to A&E. She was there for 12 hours or so, they did put her on intravenous fluids whilst there which seemed to have a positive effect on her appetite. Otherwise they said all ok, CT scan didn’t show any bleeding in the brain.

However, despite having been given the all clear at A&E, on 10 November she was back there with a high temperature, confusion and a really severe haematoma on her forearm. She had been mobile as usual two days before, then the day before it needed 2 people to get her out of bed, then on the day she went to hospital she couldn’t be got up at all. So she has been admitted, is on strong antibiotics for what they hope is cellulitis (but might be an infection within the haematoma itself) and has had more scans and X-rays which has picked up and intraventricular bleed in the brain. She’s mostly sleeping, very confused , often unwilling to eat or drink though that does vary, and completely unwilling to attempt even sitting on the side of the bed. Today the nurse said she had been resisting them when they attempted washing and pad changing though that’s the first time that’s been mentioned.

To be honest I was prepared today for them to say they would stop treatment, but no they are going to keep with it for now. I am not rushing to make the 200 mile journey, I will have to book a visit which will be max 30 minutes, in full PPE so she will probably not know who I am anyway. I’m scheduled to g9 next week so hope to book to see her then, more in the hope of speaking to a doctor than anything else.

On top of that my dad is becoming increasingly confused so I’m getting some very odd calls from him. It seems to have coincided with the clock change so I’m hoping it will settle but it is a concern. He has been thoroughly checked by the GP including blood tests and there is no infection or other obvious cause. He is in the house, alone and bedridden, for probably 20 hours in every 24 but will not even begin to consider trying a care home.

I am doing my best to keep calm and carry on, I have already been down twice in the last 3 weeks and don’t feel the answer is to keep dashing there but like everyone else on here I have the constant nagging guilt lurking just under the surface. I just want to know when this is going to end, sounds awful I know but none of the three of us is enjoying this.
I really understand how you feel. The guilt is awful. I’m in the same situation and I am learning lessons for my own later years in that resisting the obvious it just means a burden for family. It is hard not to give into the guilt and I often catch myself wondering how long I must endure it - but it is they who are really suffering so another guilty conscience for me…again! you are doing an amazing job from a distance and long drives when you see them.
 

Duggies-girl

Registered User
Sep 6, 2017
2,906
0
@CardiffGirlInEssex we had a similar story with dad, it's horrible and you feel so helpless but don't feel guilty, it's not your fault, it's the flipping awful dementia. You want it too end and so did I, it's normal. I prayed for a quiet heart attack in his sleep but it didn't happen, it would have been much kinder if it had for dad as much as us but at the same time I would not have denied him a minute of his life.

You're doing your best and you can do no more, I am sorry your dad is adding to your worry, it's all a bit much. Take a bit of time and be kind to yourself.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,920
0
So sorry to hear about your mum @CardiffGirlInEssex . I hope they can get her well enough to go back to her care home pronto.
As for your dad, it sounds as though he'd actually be much happier in a care home with people around all the time, but I can understand him not wanting to leave his home.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
343
0
Thank you all for your support, it helps a lot. The situation is unchanged at the moment and I am feeling a little calmer. I have explained in quite strong terms to my husband that him saying, “oh don’t worry, they will keep going, they’ll outlive me” is not helpful! I don’t want them to carry on like this. I’m still hoping for a swift and peaceful ‘not waking up in the morning’ for both of them. Might be waiting a while longer though.

Mum is still not willing to try getting out of bed and the physio input on the ward is minimal. I expect they tell her to keep doing whatever in bed exercises they are doing with her but of course she won’t remember, and I can’t arrange for intensive private physio support whilst she is in hospital. It might be possible if she can be moved but she’d have to go to a nursing home for EMI which Social Services are going to drag their feet over. Hey ho.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
343
0
And the fun continues. Both parents are now in the same hospital, I had to do the M4 dash today for my dad. Not clear what is causing his extreme confusion, all scans and blood/urine tests are clear. Might be constipstion, could well be just general decline.

Mum is not improving, she is being hoisted from bed to recliner and is only eating if they feed her, and then not very much.

I’d like to say things can only get better but sadly there is still scope for them to get worse before we get to the end.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
343
0
Thank you, @Sarasa . I was allowed into A&E with dad until the main tests had been completed and results known. It will be phone calls in the morning and possibly a visit to dad. I had already agreed there is little point requesting a visit to mum, in full PPE she won't know who I am anyway nor will she be able to hear me. However I am hoping to speak to a doctor about her and try to get a better feel for what they are expecting to happen.