We're approaching the end of the road

[sallyrogers]

hi karen

hi karen i dont think any body can be prepared for the loss of loved ones my heart goes out to you at this time i think it must be awful to see your mum aggitated i hope she will find peace but you have done every thing for your mum so spend time talking to her so sorry to hear this you take care the good lord is with her x sallyrogers

 

[kazza73]

Just had a call from dad. Even though I didn't tell him the whole story I think deep down he knows . He was sobbing for most of the call. I didn't mention the palliative care, just said mum is still very agitated and refusing food (which is how she was when he saw her on Saturday). He asked where I thought we go from here- I said I don't know (white lie) and we'll just have to wait and see how she responds to this drug. He said what if it doesn't work? I just told him we'll have to see what the consultant suggests (blame the consultant) but that my priority was trying to find some peace for mum. He did then say - 'I think we're nearing the end aren't we?'
It is so hard hearing him so distressed when he is so far away
On a positive note I spoke to mum's nurse this morning- she was given extra meds last night and slept soundly from 11pm until 7am. Unfortunately she was extremely agitated as soon as she woke and refused breakfast

It's hard road we are travelling just now.

Thank you for all the supportive messages. They are much appreciated.

Karen x

 

[Grannie G]

It's hard road we are travelling just now.

It`s a very hard road Karen. I do wish you could all be helped along it. xx

 

[Loopiloo]

Dear Karen

You and your Dad are in my thoughts and my heart goes out to you at this time, the hardest to face. Words are inadequate. Wishing your Mum peace.

Loo xxx

 

[alex]

Hi Kazza

Sorry to hear the news of your mum ......and yes it is a very tough place to be at the moment. I don't think anyone can say anything that will make you feel better, but just knowing your being thought of helps

Alex x

 

[sue38]

My thoughts are still with you Karen (and your dad) as you travel this road with your mum. I hope she has a settled night. x

 

[creativesarah]

thinking of you and all your family at this difficult time
luv sarah

 

[Petrina]

"my priority was trying to find some peace for mum"

I think you summed it up there. It's not how much time someone has left, it's how gentle you can make their going.

 

[kazza73]

Thanks all.

A picture of mum from a couple of weeks ago


i took one last week which I'll add later- difference is shocking

 

[Contrary Mary]

Hello Karen

It looks as though my Mum has taken a downturn now and I know that nothing can prepare you for the shock. Thinking of you and your family tonight.

Mary
x

 

[kazza73]

Visited again this evening. Mum had been very agitated all day but they had just managed to get her to lie down when I arrived and after a few minutes of cuddling and head stroking she calmed down. She seemed to know me tonight. I got a flannel and washed her hands and face and then put some moisturiser on for her. She was complaining of sore lips and I was made to promise to bring lip balm next time.
She got a bit restless at one point so I sang to her and she joined in. She complained the song was too sad so we then sang, of all things, 'If you're happy and you know it clap your hands' she seemed to enjoy it and clapped enthusiastically! It was a moment to treasure but over too quickly and I was told to be quiet!
It was the best visit I've had in a long time. She was calm for most of it and I left her snoozing peacefully.
Can't visit again until Saturday due to other things I need to do, although might try and pop in On Friday if I can get someone to have the kids for an hour for me.

Made some memories tonight.

Karen xxx

 

[sue38]

She got a bit restless at one point so I sang to her and she joined in. She complained the song was too sad so we then sang, of all things, 'If you're happy and you know it clap your hands' she seemed to enjoy it and clapped enthusiastically! It was a moment to treasure but over too quickly and I was told to be quiet!

Made some memories tonight.

Karen xxx

That made me smile. Definitely a moment to treasure x

 

[kazza73]

Visited mum with my sister this morning. She was asleep when we arrived so we were able to have a good chat with mum's named nurse. The agitation is worse than ever. Thursday was particularly bad and they couldn't get mum to take any medication and so had to give her intra-muscular injections of Haloperidol. The consultant came to see mum on Friday and has changed the injections to Acuphase, he has also started mum on Fentanyl patches in case she is in pain. She remains on special obs with a nurse 1 to 1.

When we went to see mum she was extremely agitated, aggressive, lashing out, nipping, trying to bite.... It was horrid to see her like that She can barely walk, needing 2 staff to support her. When she needed the loo and we rang the buzzer 5 staff came within seconds (3 nurses and 2 carers) it took 4 of them to get her to the toilet and sorted out. She continues to refuse most food although she did eat half an M+S eccles cake we had brought for her (an favourite treat from the good old days). Her speech was very poor apart from when she very clearly stated 'I just want to die'.

My sister got a bit weepy at one point (it's a couple of weeks since she has seen mum and there's been quite a big change). I held it together until I came home when I had a good blub!

It was a really tough visit. I am so grateful for the brief calm time I had with my darling mum on Wednesday, who knows if I'll ever have that again.

Had another weepy call from dad this evening I am now sitting down with a much needed glass of cider.

Karen xx

 

[kazza73]

Just had a bit of a meltdown Not really helped by a well meaning friend telling me -'Have a nice bath and an early night and it'll all look better in the morning'. IT WONT LOOK BETTER IN THE MORNING!!!! In the morning mum will still have demenntia, she will still be trapped inside there scared and agitated and we will still be facing losing her. I know people mean well but I wish they would think before they roll out their platitudes!!!!

 

[kasglass]

Hi Kassa my mum is in the last stages of vd,as you describe how your mum is .mine is the same except that my mum has diabeties and has only one leg due to the diabeties and is totaly bed bound i really feel greatly what you are going through and can only send you best wished for both you and your mum

 

[sue38]

Karen I'm so sorry - it's horrible seeing your loved one in such distress.

I know I've already said this on your thread, but IV paracetamol was a godsend for my dad at the end. He was in hospital, so IV may not be possible where your mum is, but if it is it's worth asking. Its effectiveness is nothing like oral paracetamol.

You've earned that cider. Wishing you strength for the days ahead.

xx

 

[kazza73]

Thanks, Sue. I dont think she can have IV medication in the unit. The Fentanyl patch she has been started on this week is an opiate drug which is stronger than morphine so hopefully it will tackle any pain she is in.
It's just so hard seeing her as she is now and also hearing dad so distraught on the phone.

My granny often uses the phrase - What doesn't kill you makes you stronger- I dont feel very strong tonight

 

[creativesarah]

I'm not surprised you dont feel very strong and to be honest you probably dont need to be it never hurts to let out what your feeling Here speaketh the 'ironing board' who goes stiff and bottles things.
Much support Sarah

 

[kazza73]

Visited last night and took fish and chips (posted about this elsewhere). Mum was calmer on this visit- they are now giving her Clopixol, she seems a bit more sedated but that is preferable to the terrible agitation and aggression that we had recently. She is sleeping much more and even when awake keeps her eyes closed unless prompted to open them.
She didn't know me but was willing to sit and hold my hand.
She's terribly thin but thankfully she has started to eat again although she seems to have developed a reflux type problem which they are keeping a careful eye on.

It was a good visit in that she was calm but she is fading fast. Her ability to talk is lessening with few clear words. Her mobility is also deteriorating, her legs are so thin and she has no strength in them, needing 2 people to support her when walking.

I will go in again on Friday, am having a night off tonight to spend some time with my kids and hubby!

Karen xx

 

[Beezed]

Hi Karen,

Really sorry for what you are going through. Hope your mum is comfortable.

Jeanne x