Mum deteriorating - feeling helpless

[emmamac]

Sorry to keep posting as so many of you are facing far greater problems than I am at the moment.

I just feel so out of my depth at the moment. As per my previous post, mum is now in a rehab ward following three falls in three weeks which resulted in a pelvic fracture.

Although the physical care is very good, all the rooms are individual and she is just left in her room in a chair without any stimulation a lot of the time. She is not drinking - in spite of me taking in the drink she likes (Oasis) and squash, they just pour her water and she won't touch water. She is barely drinking her tea and her appetite has gone right down. She was frail before but she now looks even tinier and very drawn. She has cried when I visit and her confusion is worse - she had a UTI on admission and it seems they are now treating her for another one. Yesterday she was talking about her brothers and sisters who all died between 15 and 30 years ago. She talks about mum and dad....not sure if its her mum and dad but not sure she knows either. Yesterday when I visited she just looked so sad and buried her face in me and said 'I'm dying'. I feel so helpless and racked with guilt that I can't do more. I am also only visiting every other day as I'm finding it so hard emotionally to cope with. Other family and friends visit almost every day and some days she has visitors at least twice a day.

She has no property and is well below the threshold for paying for care so yesterday we met with the hospital social worker and nurse. The SW tried to suggest she went home (not yet as she isn't well enough) to her house and was assessed from there. I flatly refused and the nurse backed me up saying it wasn't a good idea basically. I was then told that Surrey contract beds in care homes and basically they could just put her anywhere. They mentioned one location which is a good 40 minute drive each way. This would mean I could only visit once or twice a week due to working and family commitments with my son. I just feel desperate.....if she lives long enough to be discharged, I want her near me so we can continue to see her. t
The nurse was very good and said I need to step back and let others now care for mum....is this something anyone else has done. My family probably need me to but the guilt if I do so will be huge as I feel I'm abandoning her.

A big part of me wants her to just go to sleep and not wake up....but I'm terrified she will do that over Christmas which would be awful particularly for my children (I know thats selfish of me).

When she first went into hospital I felt relief that she was being cared for but now all the worry and anxiety is back albeit for different reasons. I feel physically sick and am not sleeping well. I'm also obsessing about my own demise! I keep thinking that as both my parents ended up with vascular dementia, thats what will happen to me...all thats ahead is a long decline into suffering and misery....yes its probably out of proportion but it is in my mind all the time.

Wishing you all strength and peace over the next couple of weeks with your loved ones,

Emma x

 

[karaokePete]

You are having a tough time so it's understandable that you feel a bit of a wreck from an emotional point of view.

You have done the right thing by your mum by refusing the discharge so please try not to feel guilty, or that you are letting her down.

It's seems to be the sad reality that if one isn't self funding the choice of home is taken away. Would it be possible to search for a closer care home that would take the LS rate? This is a link where you can do a post code check for home in your area that have had reviews. https://www.carehome.co.uk/

 

[emmamac]

You are having a tough time so it's understandable that you feel a bit of a wreck from an emotional point of view.

You have done the right thing by your mum by refusing the discharge so please try not to feel guilty, or that you are letting her down.

It's seems to be the sad reality that if one isn't self funding the choice of home is taken away. Would it be possible to search for a closer care home that would take the LS rate? This is a link where you can do a post code check for home in your area that have had reviews. https://www.carehome.co.uk/

Thanks karaokePete - I've tried that but the social worker seemed to dismiss that yesterday and implied I will be told what beds are available - she did say she'd do her best to help but insisted I don't contact my local social care team who have been dealing with mum and that I let her deal with it all.
Yesterday when I left the hospital, I just felt defeated and like giving up ....I have so little fight left in me and I feel like all I talk about or think about is mum and how to make everything 'OK" for her. My husband is very patient but talking it through with him last night made my son, who was listening from the other room, cry. The impact on everyone is so hard x

 

[Prudencecat]

We were in a similar situation to you mum in hospital after a fall which resulted in a broken hip and a UTI. She had cellulitis after the hip replacement operation and was on antibiotics for over 4 weeks before they found the right one. It does make a big difference when the antibiotic starts to work so hopefully your mum will start to feel a bit better soon.

We brought mum home after a best interests meeting in hindsight it was a mistake so please don't feel guilty about your decision. Sometimes I think we put our emotions on to the person and think how we would feel in that situation. In the New Year we will be looking at care homes for mum and like you we know that it is best for her and us that we can get back to being daughters instead of carers. I wonder how people manage that don't have a friend or relative to fight for them.

 

[hilaryd]

I've nothing very helpful to suggest, but just wanted to send good wishes and virtual hugs - we were in a similar position with our mum this time last year, and it's so hard to watch someone you love when they're in distress. I do hope you can get a positive solution - we were self funding, so had a bit more choice of care home, but I well remember those feelings of exhaustion and desperation - and the fears for the future. In the meantime, it's good that she's getting plenty of visitors, and perhaps they could all help by taking in food and drinks that she likes and encouraging her to eat and drink while they're there. I agree that it's hard to step back - however kind and professional other people are, they don't have the same emotional connection. Hope all gets sorted soon, and wishing you well xxx

 

[emmamac]

I've nothing very helpful to suggest, but just wanted to send good wishes and virtual hugs - we were in a similar position with our mum this time last year, and it's so hard to watch someone you love when they're in distress. I do hope you can get a positive solution - we were self funding, so had a bit more choice of care home, but I well remember those feelings of exhaustion and desperation - and the fears for the future. In the meantime, it's good that she's getting plenty of visitors, and perhaps they could all help by taking in food and drinks that she likes and encouraging her to eat and drink while they're there. I agree that it's hard to step back - however kind and professional other people are, they don't have the same emotional connection. Hope all gets sorted soon, and wishing you well xxx

Thank you Hilary xx

 

[Jale]

First of all I'm going to send you some hugs and then tell you what happened with my mum - sorry but don't know if it will help or not.

Mum was admitted to hospital in July, she had up until that point had carers going in 4 times a day and lived with her son and myself and my hubby would go to see her every day. It became apparent over the 6 weeks that she was in hospital that she did deteriorate both mentally and physically and it was the hospital social worker who said that she doubted that mum would be able to return home. For all the time that mum was in hospital I went home every day and prayed that she could go to sleep and not wake up, and yes I felt guilty for thinking it and felt guilty for leaving her in hospital and having to lie to her. The hospital social worker was very helpful, from your post I'm not sure that your SW is the same and to suggest that your mum goes home to be assessed is ridiculous. Easy to say but you need to refuse to even let them contemplate it. My mum is below the threshold too and was not self funding but again the hospital SW tried her best to get mum a placement for 6 weeks assessment in a care home, but they refused to take her as they felt she needed more care than they could provide so she was found a place in a nursing home. If you feel that you are not being listened to by the hospital SW then I would get in touch with the SW who has dealt with your mum and explain your fears/needs to them.

For what it's worth my mum now in full time care is waiting for her sisters and brother to visit her - one died in 1975, another in 2001 and she has not spoken to her brother in over 30 years - sadly I think it is another sign of deterioration in her mental capacity. I am finding it difficult to "hand over" mum's care to others and hate walking away and leaving her in the home but I have to do it - doesn't stop the guilt though. Perhaps you should also talk to your GP about your feelings too, things can pile up very quickly and then drag you down just as quick, know from personal experience.

I hope that things can be resolved that suits you all, and sending some more hugs

 

[May30]

Hi,
I am going through a similar thing with my dad and it helped me to read your post and know that it isn't just me. He was admitted to hospital about three weeks ago with cellulitis. His mobility has got worse and he can now only be transferred to a chair. We had a best interest meeting and they've said that going home would not be the right thing. We're now in limbo waiting to hear about care home places. I doubt we're going to have much choice. I keep swinging between feeling like it is the right thing to do, to just wanting to get him home. The guilt and frustration is awful. I feel like I should have done more to prevent him going into hospital in the first place. It's a constant battle with my emotions but I know that i know that in the long term I have to protect myself and my mum too. I'll be thinking of you and I hope that it resolves quickly x

 

[echo66]

Sorry to keep posting as so many of you are facing far greater problems than I am at the moment.

I just feel so out of my depth at the moment. As per my previous post, mum is now in a rehab ward following three falls in three weeks which resulted in a pelvic fracture.

Although the physical care is very good, all the rooms are individual and she is just left in her room in a chair without any stimulation a lot of the time. She is not drinking - in spite of me taking in the drink she likes (Oasis) and squash, they just pour her water and she won't touch water. She is barely drinking her tea and her appetite has gone right down. She was frail before but she now looks even tinier and very drawn. She has cried when I visit and her confusion is worse - she had a UTI on admission and it seems they are now treating her for another one. Yesterday she was talking about her brothers and sisters who all died between 15 and 30 years ago. She talks about mum and dad....not sure if its her mum and dad but not sure she knows either. Yesterday when I visited she just looked so sad and buried her face in me and said 'I'm dying'. I feel so helpless and racked with guilt that I can't do more. I am also only visiting every other day as I'm finding it so hard emotionally to cope with. Other family and friends visit almost every day and some days she has visitors at least twice a day.

She has no property and is well below the threshold for paying for care so yesterday we met with the hospital social worker and nurse. The SW tried to suggest she went home (not yet as she isn't well enough) to her house and was assessed from there. I flatly refused and the nurse backed me up saying it wasn't a good idea basically. I was then told that Surrey contract beds in care homes and basically they could just put her anywhere. They mentioned one location which is a good 40 minute drive each way. This would mean I could only visit once or twice a week due to working and family commitments with my son. I just feel desperate.....if she lives long enough to be discharged, I want her near me so we can continue to see her. t
The nurse was very good and said I need to step back and let others now care for mum....is this something anyone else has done. My family probably need me to but the guilt if I do so will be huge as I feel I'm abandoning her.

A big part of me wants her to just go to sleep and not wake up....but I'm terrified she will do that over Christmas which would be awful particularly for my children (I know thats selfish of me).

When she first went into hospital I felt relief that she was being cared for but now all the worry and anxiety is back albeit for different reasons. I feel physically sick and am not sleeping well. I'm also obsessing about my own demise! I keep thinking that as both my parents ended up with vascular dementia, thats what will happen to me...all thats ahead is a long decline into suffering and misery....yes its probably out of proportion but it is in my mind all the time.

Wishing you all strength and peace over the next couple of weeks with your loved ones,

Emma x

I went through something similar with my Mum; she was admitted to hospital and kept getting repeated infections which just exacerbated her dementia more, each time she recovered it was never to where she was at before. The hospital were pushing for discharge and I a real battle on my hands to keep her in there; whatever happens, do not let the SW/hospital badger you into accepting discharge home if you feel it isn't the right decision.... they will offload their duty of care onto you as soon as they can and then leave you high and dry. All the while she is in hospital she is receiving 24/7 care and is safe - they are the most important things. Eventually Mum went into a nursing home as she was deemed to not have mental capacity regarding her health and welfare and she would have been at risk if she'd gone home. It breaks my heart every day when I go to see her, but I know ultimately, it was the right decision.

My thoughts are with you at this difficult time.

 

[emmamac]

I went through something similar with my Mum; she was admitted to hospital and kept getting repeated infections which just exacerbated her dementia more, each time she recovered it was never to where she was at before. The hospital were pushing for discharge and I a real battle on my hands to keep her in there; whatever happens, do not let the SW/hospital badger you into accepting discharge home if you feel it isn't the right decision.... they will offload their duty of care onto you as soon as they can and then leave you high and dry. All the while she is in hospital she is receiving 24/7 care and is safe - they are the most important things. Eventually Mum went into a nursing home as she was deemed to not have mental capacity regarding her health and welfare and she would have been at risk if she'd gone home. It breaks my heart every day when I go to see her, but I know ultimately, it was the right decision.

My thoughts are with you at this difficult time.

Thank you so much xx