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How to cope at home now dad has lost his mobility

User
Posted 12 Jan 2020 at 22:41

My dad has lost his mobility literally overnight.  Swollen legs which I understand will not get better. 

His prostate cancer has spread to pelvic lymph nodes & mediastinal nodes and various others.   

He is so scared of being left alone day or night.   I am by his side while he sleeps in the hospital.  He is scared of dying and not waking up.  I feel so bad for leaving him alone at night in hospital and as soon  as I realised how frightened he was I joined him in the hospital tonight and will sleep on the chair next to him.  

I am worried how my mum will cope at home as he can’t move.   I know the 48 fast track package is in place.  The hospital bed is being delivered.   Is it normal to get a mobility aid, toilet & shower seat?  

I am there 4 days out of 7.   Is it possible to hire a nurse to help at home in addition to the nurses that visit.   He has catheter and urinary bag.   I think we will be shown how to change it. 

What if he has pain, what do we do? If he panicks about what is going on. 

This is so hard as my dad was so active before and now can’t move to even turn into a more comfortable sleep position. 

 

shall I find someone to do manual lymphatic massage or is this dangerous because the lymph nodes in the pelvis are enlarged?

Any advice welcome.

 

 

User
Posted 13 Jan 2020 at 11:30

My heart goes out to you...

Have you and he considered hospice care?

Having read a couple of the end-of-life scenarios here in the past, I would personally opt for hospice care, not home care if I get to that situation. Hospices are experts at it. Home may sound more romantic, but getting that level of expertise at home in a timely manor can be more difficult.

Even if you are going to be at home, have you engaged the hospice team?

There are people here much more expert than me in this area, hopefully they will see and contribute here.

Edited by member 13 Jan 2020 at 11:32  | Reason: Not specified

User
Posted 13 Jan 2020 at 12:09

"Have you discussed what he would like for the end stages? Now is the time to talk about whether he would prefer to die at home or in a hospice, if given the choice? Home care will need to be planned now so that referrals to the local authority social care team, district nursing, occupational therapy / physiotherapy, etc are all made and a package put in place ready for when it is needed. If hospice care is preferred, he needs to be referred by the GP or hospital. Any equipment to help him stay mobile and comfortable in the coming weeks or months needs to be ordered or possibly purchased by the family.


There may be benefits he can claim to help with these additional costs but claim forms needed to be completed by his nurse, GP or oncologist and then submitted for fast track."

Edited by member 13 Jan 2020 at 12:12  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2020 at 13:27

Sorry you find yourself in this situation. As already said now is the time to talk , following my mother's passing there were some ugly arguments regarding funeral details.

On a practical note his catheter care is important, make sure connections are tight, the last thing you will want is having to change a wet bed.  Empty bags way before they get full. The overnight bag can be left over night.   Get some instilagel or hydrocaine as the catheter can make the eye of the penis sore.

Thanks Chris

Edited by member 13 Jan 2020 at 13:28  | Reason: Not specified

User
Posted 13 Jan 2020 at 14:05

Really sorry this is happening, and so fast.

I can't offer much practical advice, I'll just report that a friend of mine a lady in her sixties, was in a very similar position to you, with a mother dieing of cancer. In a conversation we had she said "She (mother) wanted to die at home, what a palaver that was, I wish she'd stayed in the hospice".

So I don't know much about the end of life stuff, but I think hospice staff are far better at it than us members of the public. I suspect they may be able to use stronger painkillers than would be given to members of the public. I have no evidence for this, but I assume the best painkillers are strictly controlled.

Dave

User
Posted 14 Jan 2020 at 08:49
If he goes into cardiac arrest, you phone 999
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2020 at 09:58

Originally Posted by: Online Community Member
If he goes into cardiac arrest, you phone 999

This applies even if he has a DNACPR (do not attempt CPR) form. Ambulance will honour it, but you must keep it handy. In theory, if the ambulance call-out links to his records, they should have it electronically too.

I haven't heard of one that applies only in hospital. There should be a purple form, which stays wherever he is (sometimes called a Respect form). If there isn't one, but that is still his wish, have the hospital fill one out for you while he is there and still able to express his wish, or if he's already at home, have the GP call and do it.

Edited by member 14 Jan 2020 at 09:59  | Reason: Not specified

User
Posted 14 Jan 2020 at 23:55
I think that is something else to discuss with the medical team or hospice. My colleague's mum was on a DNAR at the hospital but not elsewhere and was being cared for at home. When she went into cardiac arrest, my colleague did not try CPR and also tried to stop the paramedics from doing so when they arrived. The police arrested her and charged her with attempted murder and it dragged on for over a year before the charges were dropped. The legal advice was that paramedics must try to resuscitate if called out, unless there is a copy of the DNAR at the home address and also lodged with the GP. It isn't always enough for there to be one at the hospital.

The problem with the personal wishes form is that a) he has to want it b) he (or his GP) has to complete it c) it has to be witnessed by someone that isn't a family member. You can't do it for him. I am not sure that the self declaration works for someone whose body and mind are disconnected and who still hopes to go on holiday. Better if the hospital team can write an extended confirmation of the existing DNAR instead. I totally get what you are saying about trying to resist but in reality, if he did go into arrest, your heart would not want to cause him any damage or suffering and you would find it within you to support him, hold him and ease his fears without going into full mode. Also, most don't die that way, they sleep more and more and then sort of slip away - you are more likely to find yourself sitting with him and realising that the breaths are coming slower and slower with longer gaps and then eventually there just isn't another breath.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 13 Jan 2020 at 11:30

My heart goes out to you...

Have you and he considered hospice care?

Having read a couple of the end-of-life scenarios here in the past, I would personally opt for hospice care, not home care if I get to that situation. Hospices are experts at it. Home may sound more romantic, but getting that level of expertise at home in a timely manor can be more difficult.

Even if you are going to be at home, have you engaged the hospice team?

There are people here much more expert than me in this area, hopefully they will see and contribute here.

Edited by member 13 Jan 2020 at 11:32  | Reason: Not specified

User
Posted 13 Jan 2020 at 12:06
I answered most of this on your other thread - will try to find it and repost.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2020 at 12:09

"Have you discussed what he would like for the end stages? Now is the time to talk about whether he would prefer to die at home or in a hospice, if given the choice? Home care will need to be planned now so that referrals to the local authority social care team, district nursing, occupational therapy / physiotherapy, etc are all made and a package put in place ready for when it is needed. If hospice care is preferred, he needs to be referred by the GP or hospital. Any equipment to help him stay mobile and comfortable in the coming weeks or months needs to be ordered or possibly purchased by the family.


There may be benefits he can claim to help with these additional costs but claim forms needed to be completed by his nurse, GP or oncologist and then submitted for fast track."

Edited by member 13 Jan 2020 at 12:12  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2020 at 13:27

Sorry you find yourself in this situation. As already said now is the time to talk , following my mother's passing there were some ugly arguments regarding funeral details.

On a practical note his catheter care is important, make sure connections are tight, the last thing you will want is having to change a wet bed.  Empty bags way before they get full. The overnight bag can be left over night.   Get some instilagel or hydrocaine as the catheter can make the eye of the penis sore.

Thanks Chris

Edited by member 13 Jan 2020 at 13:28  | Reason: Not specified

User
Posted 13 Jan 2020 at 14:05

Really sorry this is happening, and so fast.

I can't offer much practical advice, I'll just report that a friend of mine a lady in her sixties, was in a very similar position to you, with a mother dieing of cancer. In a conversation we had she said "She (mother) wanted to die at home, what a palaver that was, I wish she'd stayed in the hospice".

So I don't know much about the end of life stuff, but I think hospice staff are far better at it than us members of the public. I suspect they may be able to use stronger painkillers than would be given to members of the public. I have no evidence for this, but I assume the best painkillers are strictly controlled.

Dave

User
Posted 13 Jan 2020 at 23:56

Thank you for all the replies, all that information is so helpful. 

I will try to reach out to as many support networks as possible as the family are struggling to cope and understand the dying process.  

Who do we call if he goes into cardiac arrest, the Resucitation decision is only applicable in hospital not at home.   

My dad wants to live and is not ready to leave this world yet.   He has a few things to sort out.   The Pallative care consultant explained to me their is a mind and body disconnect.   His body may have been dying for a few months, the signs were there like reduced appetite and now his body is showing more signs of dying like the swollen legs. 

His mind is not there yet.   My poor dad,  he still thinks he is able to go on his holiday.   Heartbreaking to watch this disconnect. 

It was lovely to sit by his side at the hospital and watch old movies and make him a  cup of tea and watch him eat a chocolate bar at 4am!  He was so glad I was there,  I could see the relief in his face.  

The family have made arrangements never to leave his side,  someone will always be with him day or night. 

The consultant said all living things must die and can’t live forever and patients often find they are more scared of dying alone than of pain.  

This is so hard, damn this prostate cancer.   

My dad described in detail the moment he felt his body damaged- he said he felt it almost an hour after his radium 223 the fifth injection.  Something did not feel right and he could feel his legs and body give way like a button had been switched on.  

I wish he never had  that damn 5th injection. 


 

 

 

Edited by member 13 Jan 2020 at 23:58  | Reason: Error

User
Posted 14 Jan 2020 at 08:49
If he goes into cardiac arrest, you phone 999
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2020 at 09:58

Originally Posted by: Online Community Member
If he goes into cardiac arrest, you phone 999

This applies even if he has a DNACPR (do not attempt CPR) form. Ambulance will honour it, but you must keep it handy. In theory, if the ambulance call-out links to his records, they should have it electronically too.

I haven't heard of one that applies only in hospital. There should be a purple form, which stays wherever he is (sometimes called a Respect form). If there isn't one, but that is still his wish, have the hospital fill one out for you while he is there and still able to express his wish, or if he's already at home, have the GP call and do it.

Edited by member 14 Jan 2020 at 09:59  | Reason: Not specified

User
Posted 14 Jan 2020 at 23:28

Thank you so much for that information. 

I will look into the purple form and obtain that ASAP. 

My dad is home now.  So I must do this. 

 

He has cancer in ribs and sternum and I have been warned of resuscitated the ribs could break and he would be in agony if bought back to life. 

I am trained in CPR and I will have to resist attempting it on him shall it happen.  But I have thought about obtaining oxygen and defibrillator for the home.  

only a thought as it’s hard to lose him

User
Posted 14 Jan 2020 at 23:55
I think that is something else to discuss with the medical team or hospice. My colleague's mum was on a DNAR at the hospital but not elsewhere and was being cared for at home. When she went into cardiac arrest, my colleague did not try CPR and also tried to stop the paramedics from doing so when they arrived. The police arrested her and charged her with attempted murder and it dragged on for over a year before the charges were dropped. The legal advice was that paramedics must try to resuscitate if called out, unless there is a copy of the DNAR at the home address and also lodged with the GP. It isn't always enough for there to be one at the hospital.

The problem with the personal wishes form is that a) he has to want it b) he (or his GP) has to complete it c) it has to be witnessed by someone that isn't a family member. You can't do it for him. I am not sure that the self declaration works for someone whose body and mind are disconnected and who still hopes to go on holiday. Better if the hospital team can write an extended confirmation of the existing DNAR instead. I totally get what you are saying about trying to resist but in reality, if he did go into arrest, your heart would not want to cause him any damage or suffering and you would find it within you to support him, hold him and ease his fears without going into full mode. Also, most don't die that way, they sleep more and more and then sort of slip away - you are more likely to find yourself sitting with him and realising that the breaths are coming slower and slower with longer gaps and then eventually there just isn't another breath.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jan 2020 at 23:44

Thank you so much 
I will ask the hospital to do that tomorrow and ask them to post. 

 

 
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