Uncharted waters

[Laura2014]

Hello, I am hoping for some advice regarding my grandmother who is in the latter stage of dementia.

Nan is 95 and is cared for at home 24/7 by two of her daughters, one of which is my mum. Nan has diabetes and is confined to her bed with very limited if any movement.

Her mood is low, understandably so since she has suffered with dementia for approximately 10 years. She does not really know us anymore, except for those closest to her and even that is slipping away.

Last week she was diagnosed with aspiration pneumonia. She is on IV antibiotics which have had little improvement. She can no longer have fluids although she is still eating and is a good weight. She has been put on thickened drinks.

We discussed with her GP a few months ago about end of life care and decided that intervention would be minimal, we are determined that she will be kept at home, as per her wishes when she was lucid, and we will do our upmost to keep her as comfortable and pain free as possible to the end. We have recently learnt that she has been put on the Gold Standard.

It has always been my mums biggest fear that nan would pass away struggling for breath, it has caused my mum so much upset and it is so hard for her that nan seems to be going down this path. Although I think we have always expected it deep down, it has knocked us sideways and we are dreading the possibility that the pneumonia will recur.

It seems to me that nan has decided now may be time, she has recently been holding her arms out asking for her parents to come and take her (to heaven) which is just heartbreaking.

We're now struggling with knowing what is best to do and we have little support (or faith in) the district nurses who make daily visits. We really need guidance. Someone close to us who has a medical background has implied that maybe another course of IV antibiotics could be attempted but after that we should maybe take a view as to whether we are actually helping nan or prolonging her suffering.

I have read on here that a suction tube/machine may be used. Is this something we should request from the GP and could use ourselves at home? Does anyone have experience of using this at home?

Also at what stage should we be requesting pain relief for nan? And what is the most effective pain relief?

Any advice would be much appreciated. We are navigating uncharted waters here and are so conscious that we have to do whatever is right for nan.

Thank you in advance and apologies for the length of this post.

Laura

 

[Pigeon11]

Hello Laura

I don't know how much help I'm going to be as I'm not a medical professional and so can't really advise you about your Nan's medical problems.

But I have heard that pneumonia was described in the past as 'the old man's friend'. You can Google it and see that this is because this illness causes sufferers to lose consciousness and slip away peacefully, especially those who are frail and chronically ill.

So if your dear Nan doesn't respond to the antibiotics now or in the future, it's not likely that she will be distressed as your Mum fears. My auntie died of aspiration pneumonia last year and it was peaceful and comfortable. Although I wished the end would come more quickly for her, never once did I perceive that she was suffering.

Her GP should be able to advise you on the best type of care for her at this stage. Having lost my dad recently I know that they have pain relief 'on standby' at times like these - although it wasn't needed and I'm told that actually, it rarely is.

It may be that your Nan has had enough and wants to go. It's a difficult time for you and I hope this message helps. Am sending lots of love and hugs to you and your family.

xx

 

[2jays]

Hi

I don't have experience, but wondered if it was possible for you to contact your local hospice. They might have some ideas/support for you. I think you can self refer to a hospice, but maybe through your GP

I only suggest hospice as I have read of a few people on here have spoken to their local hospice.

Wishing you strength through this dreadful time xx


Sent from my iPhone using Talking Point

 

[Laura2014]

Pigeon11, thank you so much for your response. I am sorry to hear of your losses. I have passed your comments on to my mum and aunt and they are both reassured. I have taken a lot of comfort from your response as well so thank you once again.

Do you have any experience of using a suction machine at all?

2jays, thank you for your suggestion. We have discussed the hospice option with the GP previously but to no avail. It may be worth mentioning again though. Thank you.

 

[kkerr]

Hi Laura

I second the response that a phone call to hospice/palliative care would be in your Nan's best interest. Your GP can do this, and it sounds as though she should already be on their Palliative Care Register. The palliative team have a wide range of tricks to use to keep someone very comfortable, including medications that will reduce the amount of respiratory secretions - that making breathing more comfortable and less noisy (Hyoscine) as well as medications that can be set up via a pump that just slips under the skin - to deliver regular medications for anxiety/pain etc. Only you/your family/GP can decide if another round of IV antibiotics is in her best interests - but either way, I would try and get the palliative care team involved as soon as possible - as symptom control is their main area. Wishing you and your family all the best.

 

[Laura2014]

Hi kkerr thank you for your response. That is so helpful. Nan's GP is actually due to call in tomorrow so I'm grateful for the information you have given, we will discuss this with the GP.

Thank you for taking the time to respond.

 

[barny]

Pigeon is right. Pneumonia is known as the old mans friend as often people with it slip peacefully away. You can have suction machines to use at home but need to be used with caution as their use can be distressing for the patient. Also need to be used by someone competent. Sadly my mum died a few months ago after having swallowing problems and frequent chest infections. She died in the night after a normal day. When I found her in the morning she just looked as if she were asleep, very peaceful and for that I am thankful.

 

[Laura2014]

Thank you for your response barny. I am sorry about your mum but am glad to hear that she did not suffer.

 

[Pink Blanket]

Caring for anyone at the end stage of life is an admirable and loving to say the least. I am sorry you have not had access to information on a palliative plan of medication treatment for this eventuality.
End of life care involves both pain relief and other medications to assist in keeping your loved one pain free, settled and calm and to assist in drying up secretions that occur naturally or due to their inability to swallow or the body producing more fluid that it can deal with (like pneumonia or heart failure).
Your fear of your loved one having an unpleasant passing, both for those present as well as the patient, should not have to happen. You need to speak to her Doctor and be very specific about what you want. If the Doctor does not want to support your wishes, then get another one.
If you contact a hospice/palliative care service they may be able to guide you on this.

 

[Laura2014]

Thank you Pink Blanket. Unfortunately Nan's usual GP is off this week and we had quite an unsuccessful visit with another GP today who couldn't provide the answers we were looking for. However we have a meeting due tomorrow with a specialist in dementia care so hopefully we will have a clearer picture following that meeting.

I have to say, following the advice I have received on here, I feel a lot more reassured so thanks again.

 

[Pigeon11]

Glad you're feeling a little better Laura and that everyone's comments have helped you and your family.

Keep posting on here if you're worried about anything and someone will be along with some advice and reassurance. Lots of us know what you're going through and how difficult it is for you all at the moment.

Take care
x

 

[Laura2014]

Thank you very much x