Need to vent somewhere!

Caring for someone
#1

Hi there, so 6.5 weeks in and my Mum’s situation is getting on top of me now and I just need to offload somewhere.

Mum had a haemorrhagic stroke and pretty much the only part of her brain that hasn’t been badly affected is her ability to understand what’s going on, her memory and her speech - although her voice is deeper & croakier than before but we can understand her easily enough. Physically she is still very limited (basically can’t do anything for herself) and appears to be in constant pain - they are trying various methods of pain relief - and this week had a PEG tube fitted as her swallowing still isn’t as it should be. although she is able to have spoonfuls of pureed food.

At our family meeting at week 4 the MDT team didn’t give an overly positive outlook and were more concerned about her low mood. So they discussed with us discharging her early and continuing the care at home. They increased our visits to every other day but not sure this has helped at all. She’s very tearful most of the time and really doesn’t want to be in hospital, especially over Xmas.

Part of the reason for switching to the PEG tube was so that she could come home and all the necessary equipment has been delivered to the house. We were told the aim was to get her home for Xmas but today my Dad has been told this is highly unlikely due to a lack of carers available to fulfil the care package she needs. This has totally thrown my Dad as he was banking on getting her home and he’s now looking into private care if that will speed things up. We’ve been told numerous times that she’s likely to have a better chance of progressing in her own environment and I’m now starting to worry that Mum is slipping into some deep depression and she’ll miss that opportune window to regain some of her functions.

There’s a ton of other things going on as well but I’ve probably garbled on long enough! Some of you have been kind enough to comment on my other posts and I’m so grateful this community exists as I’ve learnt so much from you all. xx

#2

Hi Jen @JenP don’t give up hope just yet 6.5 weeks is no time at all in respect of rehabilitation following stroke. Progress can still be made as many SS on this forum will attest to.

I appreciate it will seem overwhelming at the moment, stroke is indeed cruel and destructive, not only for the survivor, but for their partner and family, it is early days and your mum’s brain is still recovering and is in the early stages of trying to find pathways around the injury.

Stay strong and try to remain positive.

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#3

Dear Jen
Wish I could give you encouraging and helpful advice. But I can not think of anything constructive other than to send you my best wishes.
Colin

#4

Dear Jen. I am sorry to hear about your mum. It is still early days yet. Don’t expect too much too soon. Your mum survived the stroke and that is what matters. She is now recovering and hold on to that thought. At the moment with covid it could be better for everyone but we must never give up hope. Lilian

#5

Hi Jen & family vent all you like. We were in your situation when my Mum (80) had stroke. Would reinforce what others have said the healing is still taking place, keep hoping Know one knows what the future holds. In my Mums case she slowly made a reasonable recovery although in a nursing home she was able to take part in various activities, read, be taken out & managed to stay positive& have a good Quality of life for another 12 years.So let off steam if it helps &keep positive. I don’t know if this is relevant but if high blood pressure was the cause best keep on eye on rest of family . I slipped through net & had stroke year ago , I’m grateful to be still here & able to comment on this site. Good Luck to you all.

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#6

Thanks @Mahoney. It is hard to see beyond what Mum can/can’t do now and sometimes staying positive is really hard which is why coming on this forum is so helpful and encouraging. Thanks for your words of support.

#7

Thanks @Pds High blood pressure wasn’t the cause in Mum’s case but my Dad is now on medication for his blood pressure so will definitely be keeping an eye on that.
Encouraging to hear that your Mum went on to have a good quality of life after her stroke and I hope your own recovery is going well.

#8

Your post really caught my eye because I am currently caring for my mum. Please feel free to vent all you like because it’s healthy to do so, and our situations are just so stressful and emotional. I hope you get care one way or another very quickly, and that you can give your mum a nice xmas gathering in hospital, if she is there for it. I can go some way to understand your worries and frustrations. Stroke impacts so much of a person and of a family. I had a full on breakdown the other day just because it’s so much to think (and worry) about.

The care situation at the moment is really rubbish. I am basically my mum’s only carer at the moment because of the shortage. She hasn’t even been assessed yet because there are no carers to do it! But rehab wanted to discharge her, so here we are. I’ve moved in with her until we get assessed and see what needs to happen.

I wish you the best and sending you strength! xx

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#9

Thank you @relaxcupcake I think I can honestly say I’ve never experienced true stress and emotional anxiety before now so I can totally empathise with you having a full on breakdown. It’s all so much to take in and I’m so grateful for everyone involved in Mum’s care as I don’t know what we’d do without them.

She’s now home but because they’ve rushed to get her home before Christmas (partly because of her mood but I suspect they’re also in need of beds) there’s been even more stress caused because we didn’t really know what to expect. The care package has been arranged all last minute and she wasn’t sent home with all the right meds etc. Bit hard to get everything sorted as well now we’re heading into a 4 day weekend but Mum is just so relieved to be at home and I have to say the carers have been worth their weight in gold.

Hope you manage to get something sorted for your Mum soon and as someone from our local Stroke Association said to me the other day, remember to be kind to yourself too. It is a lot to take on and you’re not expected to do it alone, there is help out there if you need it. Not sure what it’s like in your area but in the New Year one of our local Stroke Association co-ordinators is going to come out and visit along with someone who has also been through stroke herself and I think that will really help both Mum and us understand what she’s going through.

Wishing you all the best and hope you have a lovely Christmas xx

#10

Hello Jen,
I am sorry to hear about your Mum but I’m sure you are doing everything possible and the people on here who have been through similar experiences will always be here to help you. Take care, stay strong and above all, stay positive! I hope that you can get your Mum home for Christmas;-)

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#11

Hi Bert, thank you! Mum came home a couple of days ago and it’s all a bit strained at the moment but I’m sure things will settle down a bit once the holidays are over (fingers crossed!)

#12

That’s great to hear JenP, take care and here’s to the best possible Christmas and New Year for you and your family!