Such a shock, mum had massive stroke ...

[count2ten]

[

 

[count2ten]

Hi, I don't often visit TP now but just to say I went through a very similar experience 16 months before mum died. The clot-busting drug can be amazingly successful if given in time (although not guaranteed and as you say some potential side effects which I think mum also had). What I wanted to say was that if she has recovered some muscle control and other functions get onto rehab as soon as you can and don't accept any rubbish from them about it being a waste of time. My mum was in hospital for four weeks - mainly because they didn't put any effort into rehab, including continence and walking etc, therefore making it impossible for her to go back to the home she'd been in. Once we'd got her a place in a nursing home it was really too late and a lot of ground was lost through the delay but in spite of continuing scepticism from community physio team we were able to get her up and mobile again through expensive private physio and massive efforts from everyone to get her up on her feet again. If I had my time again what I would have been doing at your stage is shouting from the rooftops about disability discrimination if they are denying her rehab on the basis that it's not worth it because the dementia prevents her from following the instructions. She just needs more time and patience from physios who know how to deal with someone with dementia. It still makes economic sense too given the choice between a requirement for two staff members and a hoist every time someone has to be moved anywhere, or retaining some mobility and just requiring one staff member to walk alongside.

Thanks Annie h, and everyone taking the time to read and post - it's strange how supported you can feel sitting in front of a computer screen. It's still early days and it's very difficult to know how much she is processing or understanding at the moment, and how much is down to the stroke, the dementia , her personality or just exhaustion. Probably a combination. Still on the rehab ward, so seems hopeful, but this NG tube situation has really got to me, I know it's just routine stuff and thousands of people have them inserted , and I know it's the only way they are going to get some nutrition into her but , knowing that she may not fully understand what's going on, I just hope they are gentle with her and explain exactly what they're doing and why. I keep thinking what she would do if she had to make this decision for herself, she would probably say yes , being very practical and sensible as she was, if it's necessary do whatever you have to do. I know there are lots of you out there coping with much more on your own but it would have been so good to have a sibling to share this responsibility with. Sorry, self pity is my only excuse to eat chocolate and drink wine.

 

[count2ten]

One day at a time ..

Feeding tube in, seems to be coping with it but as unable to speak it's difficult to know. But you know your own relative and she didn't look upset or stressed, was giving us lots of lopsided smiles and responding to us gabbling on about our day. Daughter has named her the Duracell Bunny. BP extremely high, but could be white coat syndrome, had a lot going on yesterday. Spamar, Maryw, thanks for your positive posts, gives us all hope for a good outcome. I don't know where I would be without this site ... only wish I'd found it a lot sooner., but better late than never.

 

[2jays]

Glad your mum seems comfortable xx


Sent from my iPhone using Talking Point

 

[count2ten]

Had the "quality of life" discussion.... talked about what she would have wanted (I told them my mother would never have wanted to go into a CH but seemed to accept that and had some good moments there, so different decisions for different circumstances?). But I thought this might be a bit soon as she was responding to jokes and smiling as best she could with half her face working. Feeding tube being taken out, too risky at the moment with swallowing problems and backflow. Maybe she can do without having to digest food at the moment what with everything else going on. Speech and language will still assess and will keep up the rehab, even at a reduced level but every little helps. Trying to take it one day at a time. Another weekend of low staffing levels coming up. Just whose benefit is the NHS run for?!

 

[2jays]

Horrible conversation but at least it's been had xxx

Hoping your mum is able to continue smiling and having good moments and is back "home" from hospital very soon so those dreadful hospital visits are replaced with warm visits at the care home xxx


Sent from my iPhone using Talking Point

 

[count2ten]

NG tube taken out, then next day they were giving her sips of thickened fluids and nursing staff reckoned she would be on pureed foods next because her swallow had improved. We actually witnessed her swallowing some fluid, she was alert and happy to co-operate with the staff. Now they want to re-insert the NG tube , but this time they might put a mitten on her hand to stop her dislodging it. It all seems a bit restrictive and wrong to me, she looked exhausted today, like she's had enough. But they said she has improved slightly and needs nutrition. In an ideal world there would be sufficient staff on the ward to spend time feeding her. I said I would be happy to go in every day and try to get some food down her, she would probably respond to me, I am the only person she has every really trusted. But they want to try the tube again. I asked what happens if it comes out again, they said they would keep inserting it. At some stage I know I am going to have to challenge this decision and then have this on my conscience for the rest of my life that I didn't give her the best chance to recover. But as you said in another thread 2jays, she has dementia and she is not going to recover from that. I must get to bed, my mind is about to explode.

 

[2jays]

Painful times for you. I hope you get some escape from it and manage to sleep tonight xxxx

What ever you decide... I just know Your decisions will be in your mums best interest even if at the time it doesn't feel like it to you. Whether it be agreeing to NG or not agreeing. You can only do your utmost best for her at the time.... and I know you are doing your utmost best for her. Do not listen to that guilt monster telling you that you can do more, or to that other monster called hindsight.... Just listen to your gut feelings. They are the ones that matter xxxx


Sent from my iPhone using Talking Point

 

[count2ten]

Haven't posted on this thread for a while - hoping to have some positive news, but sadly mum deteriorated, not helped by all the indignity and discomfort of being pushed and pulled about and being moved from ward to ward, feeding tube in and out so many times - now palliative but back home. Meds have now been withdrawn and only fluids being offered , although now refusing this as well. Difficult days ahead for all of us .

2 jays, thank you for your wise words. I took a step back (your advice) and listened to my gut instincts, got her out of hospital and back to some familiar comforting surroundings where she has been able to take some control over what happens to her. And she has made it clear that enough is enough.

 

[Amy in the US]

I'm so sorry to hear of your mum's condition. This must be a very difficult time for you. I hope you are getting support, and good care for your mother, from the palliative care team.

You are in my thoughts.

 

[Cat27]

I'm sorry to read your news count2ten.
I wish you strength & peace in the days to come.

 

[2jays]

Difficult days for you indeed. My heart goes out to you. Your mum has let you know your gut feelings are the right thing, painful as those feeling are. Huge hugs xxxxx


Sent from my iPhone using Talking Point

 

[cragmaid]

So now you sit and wait....this is the hard bit, Is she warm enough, is she cold? Is she hungry, in pain or , or, or?

Take comfort in knowing that you have done your best. You brought Mum home to be safe and secure, where she can know she is loved. ..... and she will know it, even though she can't tell you.
Take care of yourself, you need to love yourself a bit too.

Love, from one who has been there and waited...Maureen x.

 

[Risa]

Sorry to read your post count2ten and you a virtual hug

 

[canary]

I am sorry about your mums condition, but I am glad you have managed to bring her home.
Remember that she will still be able to hear even if she cant respond, so talk to her, read to her, tell her the old stories, play her favourite music
xx

 

[betsie]

So sorry to hear your sad news.
When my dad was nearing the end things he needed were -
plenty of the mouth sponges and mild mouth wash to keep his mouth moist,
Lip balm to keep his lips soft
Watch out for pressure sores, dad was turned every few hours but he still got sores on his ears and feet- use sudocream as soon as the ears look red and they had special pressure sore plasters for his feet.
Helped to have a pillow between his legs to ease the pressure.
Make sure you have sufficient pain relief - dad was on a 24hr syringe driver with extra morphine injections when needed.

Be kind to yourself and try and get some rest as well. X

 

[Gigglemore]

Hope your mum is peaceful and comfortable. Taking your mother home to care for her in a loving and comfortable environment for her last days is a wonderful act of love. Hope you are getting the practical and emotional support you need at this difficult time.

 

[count2ten]

Thank you everyone for your support and so kind words, mum not home with me Gigglemore, but "home" at her CH with familiar sounds and people she knows who really do care about her. She seems reassured and comfortable, definitely more relaxed not to be in hospital anymore. We are spending as much time as we can there, but she is sleeping more and more now , although we're sure she knows we are there, just choosing to open her eyes , or not, which is her choice. The palliative team have visited and pain relief is on hand if needed. As you say Craigmaid this is the waiting time, but hopefully she is unaware what has happened to her, just that she is being looked after by people who know her and treat her with kindness and respect, what we all want and need at the end of the day. 2jays, thank you, it makes a lot of sense now. Group hug to everyone tonight.

 

[count2ten]

Mum finally gave up the battle last week, even though we knew it was coming I can't believe how hard this has hit me, and don't know what's worse , my own grief or seeing my children so upset at losing their grandmother. It's been a mad week of phone calls, visits , forms, clearing, cleaning, people asking questions, arrangements, things to buy and organise. - in between all that just crying from sadness and the mental exhaustion that's built up over the last few years caring for her. I feel sad that most of the people attending the funeral hadn't visited her much when she was alive, when she could have done with the company, but I'm also glad in a way that they will only remember her how she was before the dementia took over her life. Thank you for all the support and kind words everyone has taken the time to write on this thread. Hope I can give something back eventually when things have time to settle down a bit. xxxx

 

[leicester61]

Hi
I dont post very often, but just wanted to say how sorry i am for your loss, i know how it feels to lose your mum. Take care of you,
suz xxx