Mum Is Deteriorating Still Swallowing But Getting Delayed

[Lottie40]

Hi ,
Mum is staying home and we have the carers coming out plus palliative nurse visiting .over the last couple of days Mum is still taking fluid and a little food but her swallowing is starting to be delayed .
My brother just phoned to say the nurse has just visited and will visit tomorrow & talked about Just In Case Kit (?) My brother said she advised not giving Mum her meds tonight .
What else is this kit ? We had already discussed putting up a syringe driver for pain relief .
Most of the time Im keeping my head together but sometimes its just too much .

Lottie x

 

[nitram]

The 'Just in Case' kit ( also called anticipatory drugs ) is typically a small syringe driver and four intermisicible medications to control symptom of pain, nausea, breathing distress and agitation although other drugs may be included if different symptoms are considered likely.

 

[nogginthenog]

I think what was done for my MIL was fairly standard - they put in a syringe driver and a second injection site for "top-up" drugs

The Dr. wrote her up for 4 drugs

A sedative ( to keep anxiety levels down and keep her comfortable )
Morphine for pain relief
A drug to dry up secretions in the airway ( to deal with rattling breathing if these accumulate )
An anti-sickness drug ( as the morphine can induce sickness )

These were kept at the care home and could be administered by the district nurses who were available on a pretty rapid call out as well as the normal daily visits

The protocol for the morphine seemed to be to give injections as a top up to establish how much was needed for pain relief and then to add this into the driver the next time to give a steady rate.

Hope this helps, I know this is a difficult time and it seems to be a very variable length of time ( which is why no one will ever give you and indication of how long ) .

 

[CollegeGirl]

I have no advice or experience in this, but just wanted to send my support to you for this awful time you are going through.

x

 

[FifiMo]

If you haven't already done so, if there is difficulty swallowing then ask the nurse to provide thickener for drinks and also make sure what little food she is taking is puréed but with plenty of liquid in it. Mashed potato puréed and thinned with gravy can be a favourite or even just some yoghurt or custard, that kind of thickness.

Fiona

 

[AnneD]

My thoughts are with you at this difficult time. I lost my Mum on 14 December. Keep strong.

 

[freetalk18]

My mom is in the same situation . We have all her food mashed up. Sometimes she refuses to eat but she drinks. So we give her ENSURE which is a vitamin drink. All her meds are smashed up an put in her tea or yogurt. Hope this helps.

 

[janie1]

My thoughts are with you at this difficult time. I lost my Mum on 14 December. Keep strong.

My thoughts are with everyone caring for a loved one at this stage of dementia. I too lost my mum to this cruel disease. She passed away on the 15th December. Don't know why but somehow palliative care wasn't put in place until her last day. No one had ever advised me about it before hand. I would advise anyone caring for someone at this stage of dementia to make sure that the "just in case" meds are in place. I just wish I'd known about these things. I feel that because of my ignorance mum suffered unnecessarily for a short period of time.

 

[molly100]

My thoughts are with everyone caring for a loved one at this stage of dementia. I too lost my mum to this cruel disease. She passed away on the 15th December. Don't know why but somehow palliative care wasn't put in place until her last day. No one had ever advised me about it before hand. I would advise anyone caring for someone at this stage of dementia to make sure that the "just in case" meds are in place. I just wish I'd known about these things. I feel that because of my ignorance mum suffered unnecessarily for a short period of time.

I agree Janie. I lost my mother yesterday and until then I was not aware of the term Terminal Restlessness. why are we not told about these things? I too wish a Just in case kit had been in place to avoid all the rushing around to find the drugs and the unnecessary suffering my mother endured.