Drinking

[Sarah1972]

Has anyone had experience of not been able to drink? Mum is end of life and I understand that she will need less and less fluid however the problem is now closing her mouth around the glass. Once fluid is in the mouth it takes quite some time for her to swallow. Then it is the usual choke or not choke.

I don’t believe she is refusing as she will ask for a drink. I have to hold her bottom lip to the glass so it doesn’t just fall out however she is struggling to lower her top lip to suck. I have tried a syringe but this is 1 ml at a time and if I can get it to stay in she then takes what seems like an age to swallow. I have tried the cups with lids and with straws but no luck.

Could this just be something else that is no longer working?

Also if it’s to thick she will refuse so spoon feeding is not an option.

Thank you in advanced.

Sarah

[Kevin_1]

Hi Sarah

Yes, Liz has the same issue.

Are you are using a feeding cup with thickened liquids?

[Sarah1972 in reply to Kevin_1]

Omg there such fighters aren’t they! Have tried the feeding cup but was no use. She has thickened fluids but not as thick as it should be as she just refuses to drink it.

I am waiting on dr to call me as as district nurses out twice last night due to catheter issues so now querying UTI also.

Hugs to you Kevin x

[Kevin_1 in reply to Sarah1972]

Good luck to you.

I hope the Dr's visit goes OK.

Hugs

Kevin

xx

[Dadshelper]

They make an oral care sponge, looks like a kid's lollipop. You could try something like that but it would take time getting any real amount of liquid into her. We used them with dad during his last few days only, just to keep his mouth etc from drying out. Another option would be watery jello, it's mostly water and on par with thickened liquids just better tasting. You'll have to experiment with the jello either by adding more water then required or cutting back on mix.

Ron

[Sarah1972 in reply to Dadshelper]

I have the sponges thanks 😊 as for the Jelly that’s a brilliant idea and will give it a go. Thank you 😊

[Melhukin]

Hi

With my dad I used thickener in juice till it looked like jelly and then fed it to my dad on a teaspoon.

[Lori4]

Hi Sarah- my mother reached this stage a few days ago and we had to decide whether to administer a feeding tube or not- we have chosen not to and are now taking end off life measures to keep her comfortable. She is being administered morphine every four hours to help relax her until she passes. It is positively the worst thing I have ever witnessed in my entire life- but we know she would not want us to keep this going any longer- she was 100% non responsive and no longer able to swallow anything including thickened fluids etc. Our hearts are broken and we anticipate her to pass sometime today (if she’s lucky🙏)...words can not describe how gut wrenching and horrendous these last 3 days have been 💔 Pray for us all that it is over soon - but especially for her...My poor beautiful mother....Good luck to you during this most difficult time...

[Sarah1972 in reply to Lori4]

Awe Lori how sad. It’s just literally one thing after another. Mum has UTI and can’t take the medication, have called dr today to request capsules so can give her this on yoghurt but has sent solid tablets, now waiting for him to call me again. Mum fell a few months back now and had a small tear in her skin that got infected, it finally started to heal but has come back with a vengeance. So sat here with her waiting for district nurse as her skin is red raw and peeling away. They removed her catheter yesterday due problems with blockages so now she lays on her bed having to wet her self. So degrading for her. I hope your mum passes peacefully today. So sad when that becomes our only hope. Sending you hugs xx

[Spin30 in reply to Lori4]

Dear Lori, I'm holding you and your mother in the Light and hoping for strength for you in these very difficult days.

Sally

[Cazash in reply to Lori4]

My heart goes out to you lori4. Have been where you are and it’s hell I know. Take comfort in your mother will be in a much better place and you can be so proud of both you and her and the dignity you have both fought this terrible illness

If tears were diamonds we would be rich beyond our wildest dreams.

Hang in there. Catch those diamonds and let mum go with love hugs and kisses

Be strong be brave and never ever forget the love you both share that’s got you through so far.

Caz x

[Hidden in reply to Lori4]

My prayers are with you!

[Inarticulate in reply to Lori4]

I’m so sorry for you difficult time and distress. Keeping you in my thoughts x

[Tunupup]

My sister was the same. We manipulated her throat area to try and get her to swallow. The muscles go into spasm. Xx

[Sarah1972 in reply to Tunupup]

Total shit!! 😔 no one should ever suffer how they are/have

Xx

[Tunupup in reply to Sarah1972]

An animal wouldn't have it endure such suffering. In this day and age people shouldn't have to go through it

[sasmock]

We used jelly for my dad when this happened. He was a total sugar addict, so didn't object, happily. He had SO MUCH jelly in his last few weeks! It's the most awful stage to watch as a helpless bystander x

[Sarah1972 in reply to sasmock]

It’s disgusting. I’ve just had a call from the nurse and are to busy to come out. I’m fuming xxxx

[bikershel in reply to Sarah1972]

Contact your local hospice and see if their home nurse can come out or put pressure on your GP / DN. Sending you my best wishes x

[Sarah1972 in reply to bikershel]

Thanks, I’ve phoned hospice and if I have no luck with dr then I have to call them back xx

[Sarah1972]

Paramedic called and has dressed the leg and antibiotics ok to crush 😊

[Tttp]

Hi my brother is at that stage and beyond, I spoon feed

[Servena03]

Is Sara my lovely you should be having around the clock professional care, don't give her drink she may choke and then it goes in her lungs, John was the same asking in his way for water, the syringe was the first step for about a day, then they introduced what they call lollipop sponges, it's literally a piece of pink sponge on a stick, immersed in water and then they suck on it, can also be used to rinse around inside their life lips to freshen them. Please tell me you have a hospice, district nurse or palliative carer with you.

take every minute to cuddle and tell her how much you love her.

bless you, your mum and family, my thoughts are with you Jean xxxxx

[Tttp]

Him thicket water he hardly will open his mouth, sorry to say when they get to that point food and liquids will be less and less, this disease is hell for them

[Spiralsparkle]

Sarah it sounds likes your Mum has so much going on & your not being supported by the health & care professionals.

It makes me so sad to read this and that there is still such a difference across the UK with the support given to families.

How is your Mum doing now after the paramedic visit?

And even more important how are you doing?

Have you got anyone you can talk to?

Massive hugs

Xxx

[Sarah1972 in reply to Spiralsparkle]

I have an aunt who comes down on a regular basis (mums sister) she is a godsend. There is very little change in mum since my last post. I just don’t think the medical profession have enough experience with PSP. Today they said she looked much better yet she looked worse. She has antisapatory meds but sometimes when I ask for Madazalam to be administered they tell be she does not appear agitated. She looks restful. This is typical PSP, eyes closed and not moving but I know when she is agitated as she won’t let go of my hand and constantly calls me. Sometimes she can’t settle unless I am right next to her. They just don’t understand and when you try and explain they take it the wrong way xx