Advice please ..... Advance Care Plan & Update RE: Mum

[Roman223]

Hi to everyone. I just wanted to say that I visited my mum today in hospital and although she looked awful, she was sat upright in bed, alert and it was really nice to speak to her even though she did not say very much. She is slowly getting better from the infection and I guess trying to fight it as she normally does. I even got a smile from her. She still understands everything I say and I was pleased that she knew who I still was. (I've been building myself up for days and sobbing here & there not knowing what I was going to face)! I know the conversations are gone but I also know that my mum is still in there and does at times try to get out ....

This may be a long post so bear with me! The doctor has mentioned an 'Advanced Care Plan' for when mum is discharged back to the NH. And I don't know what or how to go about this. I know every PWD is different and unique but how do you discuss something so sensitive and delicate regarding your loved one's passing!! None of us knows what's going to happen! I don't like talking about this and am finding it really difficult. I don't know what mum would have wanted. If she does get sick again. I can't believe I'm having to have these conversations regarding mum. I still feel like someone else should be having all this responsibility, not me. If any of you have gone through similar situation. What did you do? How did you feel? Thank you as always for reading. Your thoughts are appreciated.

 

[Grannie G]

Hello @Roman223

You are not bound to have this discussion if it is too painful for you but it might help if you take the opportunity to make your feelings known even if you cannot bring yourself to make a decision.

 

[Roman223]

Hello @Roman223

You are not bound to have this discussion if it is too painful for you but it might help if you take the opportunity to make your feelings known even if you cannot bring yourself to make a decision.

Thank you Grannie G: I thought that too. I feel like the doctors are hassling me about it. As I have now spoken to 2 doctors in the last week. It's making me ill. I'm waking up with panic attacks and have had an upset stomach the last few days. There has to be a line drawn. They don't know how long mum has left!! Thank you.

 

[Roman223]

Hello @Roman223

You are not bound to have this discussion if it is too painful for you but it might help if you take the opportunity to make your feelings known even if you cannot bring yourself to make a decision.

Grannie G: I was hoping for a bit more of a response from others but as you are the only one who has given advice! Do I just tell the doctor how I feel. There must be some organisations that I can speak to!!

 

[Grannie G]

I'm sorry you feel you haven't had enough support from others @Roman223. Sometimes the problems of others are overwhelming and people don't know how to help.

Yes I would certainly tell the doctors how you feel. However compassionate they try to be, this is all in a days work for them and sometimes they do not realise the devastating effect caring for a person with dementia has on close family members and the primary carer.

Please phone the Helpline.

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

• Saturday and Sunday: 10am – 4pm

 

[canary]

Hi @Roman223
I gather from your other thread that your mum is reovering from a serious illness that she may not have survived.

When my mum was at this stage (after a stroke) I talked to her doctor about whether she should go back to hospital at all and, if so, what sort of things would make this appropriate. I asked lots of questions and it became a real conversation, not just me having to say what I and/or mum would have wanted. Mum already had a Do Not Resuscitate (DNR) form and I strongly advise you to agree to this, even if you dont do anything else as it doesnt stop any other form of treatment, it just means that if she passes away they wont try and revive her. The doctor and I also agreed that mum would not go back to hospital except for broken bones (as this would cause her pain), would be given oral antibiotics if she developed an infection, but if this didnt work she would not go to hospital for IV antibiotics, but would be allowed to pass away naturally in the care home.

You may not want to go along that same path as me, but I found it helpful talking things over with the doctor
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[Dunroamin]

This will always be a contentious issue in a society that is uncomfortable with death. I realise you will find talking about it difficult so perhaps put your thoughts on paper when you are in a quiet place. Look at this from your mothers perspective rather than that of your feelings.

I assume (I may be wrong) that you want her to be kept painfree, treated with dignity, allowed to see family and be kept clean etc. Consider if you want her life prolonging by CPR, the administration of antibiotics and fluids. Consider if you want medication withdrawn - all the while thinking of letting your mother go in a dignified and comfortable manner.

I hope this helps. Please do not think the medics are hassling you. They are offering you an opportunity to state what your mother would want - and how you can assist in this. If you do not say, they may be obliged to initiate treatments you do not want.

 

[Jessbow]

You dont have to have thediscussion but it might be helpful to you in the long run, if you can manage it.

What do you want for Mum when she goes back to the care home?

Do you want her treated for everything if it occurs- then say so

Are you ready for nature to take its course? then say so.

The Dr will lead the discusion, ask questions and if you dont know, then just say you dont

The primary question will probably be, do you agree to DNR. I agreed with this for my mum. If her heart stopped, it stopped- seemed fair enough

 

[Bod]

These are discussions that will have to take place, is it better to have them now, so that when the time comes you are prepared. Or is it better to have them sprung on you at a time of crisis.
DNR Do Not Resuscitate. this is for when the heart stops, do you allow chest compressions in an attempt to restart the heart, or allow nature to take it's course.
If (ands it's a big IF) the heart does restart, the person is left with usually broken ribs causing great pain, but still with all the previous illness as well.
The heart may well stop again quite shortly.
I feel it is kinder to allow the person to go in as much comfort as possible.


Bod

 

[Lynmax]

It is a very hard decision to make on your own, do you have anyone close you can talk to? When I had this type of conversation with mums GP, I was lucky in that my brother and sister were also part of the decision making and we were all in agreement.

My mum had a couple of dreadful stays in hospital for infection control and IV fluids, each time she acquired bed sores, her dementia advanced and she ended up unable to walk independently and incontinent. She received much better care in her care home so we decided that she would receive no more treatment, just palliative EOL care at her care home where we could be with her - this was in April when visitors were still not allowed in hospitals. This was all written on her notes and allowed mum to die very peacefully in her own room with us by her side, her GP prescribed sedatives and pain relief for the district nurses to give mum but they were not needed, the end was very quick.

Had we wanted further treatment, I believe she would have died in the ambulance or on a trolly in triage, without us there.

However, it is your decision and you should not feel under any pressure, your mum has been very poorly as I’ve read in your previous posts but you might still feel another hospital visit or course of antibiotics is appropriate. A time might come when you reconsider and you can change the plan then.

Take care

 

[Roman223]

It is a very hard decision to make on your own, do you have anyone close you can talk to? When I had this type of conversation with mums GP, I was lucky in that my brother and sister were also part of the decision making and we were all in agreement.

My mum had a couple of dreadful stays in hospital for infection control and IV fluids, each time she acquired bed sores, her dementia advanced and she ended up unable to walk independently and incontinent. She received much better care in her care home so we decided that she would receive no more treatment, just palliative EOL care at her care home where we could be with her - this was in April when visitors were still not allowed in hospitals. This was all written on her notes and allowed mum to die very peacefully in her own room with us by her side, her GP prescribed sedatives and pain relief for the district nurses to give mum but they were not needed, the end was very quick.

Had we wanted further treatment, I believe she would have died in the ambulance or on a trolly in triage, without us there.

However, it is your decision and you should not feel under any pressure, your mum has been very poorly as I’ve read in your previous posts but you might still feel another hospital visit or course of antibiotics is appropriate. A time might come when you reconsider and you can change the plan then.

Take care

Thank you all for your advice, thoughts and how you would have dealt with this very sensitive subject. It seems my mum has taken a turn for the worse. She has developed another infection. Her swallowing has got worse. She is not wanting to eat or drink and is being fed fluids through a syringe ..... As soon as I get used to one thing it changes yet again. The hospital have decided that it's in my mum's best interests to not intervene anymore/and are keeping her comfortable and pain free. So much for any advance care plan. ?

 

[Louise7]

Sorry to hear that @Roman223 I hope that your mum remains comfortable.

 

[Peony21]

You are having to face and deal with the toughest decisions and emotions at the moment and my heart goes out to you x

 

[canary]

The hospital have decided that it's in my mum's best interests to not intervene anymore/and are keeping her comfortable and pain free.

Im so sorry Roman
It sounds like recent illnesses have left your mum too frail to fight this new infection
This is a difficult time
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[Sarasa]

I’m sorry to hear your latest update @Roman223. Thinking of you and your mum.