It's been a pretty torrid last few weeks which have made me so appreciative of the great carers we have for Mum (the organisation of rotas may not always be the best but the ladies that look after Mum are) and also support of our Community Matron. Mum started off with a UTI which antibiotics cleared up but left her with thrush, in mouth & down below, then there was a chest infection so more antibiotics, following that we had upset tummy which caused some confusion - could it be C.diff over growth after two lots of antibiotics or a bug or sensitivity to one of the laxatives? The end result was Mum was left very weak & tired and withdrawn. As always seems to happen, it was a Friday, the GP came out & said things could go either way and prescribed end of life drugs in case we needed them over the weekend. The only suggestion was to encourage fluids and more fluids. I stayed over & kept on with the fluids. Things were a little more settled by Saturday night. The carers have been brilliant, they split Mum's lunch call into a mid morning fluid top up call & a slightly shorter lunch call for a few days, it made a difference, they have sent me photos and a report each morning of how Mum is & whether I needed to be there or not, the Community Matron kept her phone on over the weekend in case I needed her & texted for updates, the District Nurses checked in to make sure we were ok. The result is Mum has perked up a bit, she is very tired and sleeps alot, only sitting in her chair for a couple of hours, she struggles much more with talking & even thumbs up, so we are on hand squeezes (thank you to this forum for the tip) and we continue to have bowel issues. We stopped one laxative (Bisacodyl) on GP recommendation & continue with Laxido. After 8 days we had a result, nothing the next day, then a day of upset tummy. We can't seem to get the balance right, which is exhausting & distressing for Mum. She tolerates it all & still manages a smile at times, which melts everyone's hearts. She is eating very little - prescribed supplement drinks, a few spoons of Heinz Tomato soup & jelly & ice cream (she's still a party girl). Her swallow is getting slower. As you all know it is hard to see the person you love and who would never sit down because there was always something to do reduced to such circumstances. I am torn between wanting her to have peace and never wanting to let her go, though I know when she has gone she will still be with me.
Infection aftermath: It's been a pretty... - PSP Association
Infection aftermath
It is a rough time! Dad always seemed to have an issue late Friday's thru Sun when the doctors weren't available too! She's not eating much so her bowel movements will drop off in frequency, just don't let that lead to blockage. This is the hardest part, ask her what she'd like to do, you say she can still squeeze your hand for answers. Maybe she has had enough but is continuing on for the family.
Good Luck
Ron
be strong
Thank you
Hello there
Thinking of you both as you deal with these problems.
Chris always has a healthy dose of organic natural yoghurt on his porridge or weetabix (sloppy consustency). This helps to counteract the effects of antibiotics on his stomach/guts. Might be worth a try.
Keep on keeping on, you're doing a terrific job.
Annex
We're all doing terrific jobs aren't we but just sometimes we'd like to work miracles. Thanks for the tip about the yoghurt, could add that to the jelly & ice cream mix !
So many conflicting emotions watching your loved one suffer these evil diseases.
It sounds like you have good support with the health and care peeps, even though like you say sorting carers stuff out is stressful so again ups and downs.
Sending you all massive hugs.
Thank you, how are things with you?
My situation with Mum has not changed. Still not allowed to see her.
Sending you more hugs from this message.
🤗🤗🤗
Sending gentle hugs to you & mom as you both travel through this heartbreaking time. Granni B
Your doing all you can, and doing it well!! Sometimes as previously mentioned ,it's time to do less, but that's a very individual decision that hopefully your Mom can still be part of. I have been part of Palliative care/comfort measures only , for many in my family and patients in my prior job. Its always hard to let go-we want more time. What does your Mum want? Hugs-Pat
You are so lucky to have such wonderful care for your mum. Which country are you in? We are in Australia and I am sure the care won’t be so good.😂
We are in the UK. We had to pay for care for several years, which was a significant hit but Mum's well being is first & foremost, we were then fortunate enough to get CHC funding beginning of this year, but I would say it isn't necessarily the amount of care Mum gets that's key but how it is delivered and in the last 6 months we have been very fortunate to have a very special team of ladies to look after her and a agency manager who recognises Mum needs more experienced carers and responds to any concerns we may have quickly & effectively. Care is such a lottery in terms of funding & quality, we have struck lucky at the present but it has been hard work at times getting the agency to understand that having 15 different carers in a week was not good for Mum, it was confusing for her & the carers trying to keep up with the regular changes in meds & Mum's capabilities. Establishing a good relationship with the agency & the carers has been key.
We too are fortunate to have got CHC funding in the New Year, it has subsequently increased and an application is currently going in for double up calls as Chris now needs this following his recent chest infection.
We are so fortunate to have a brilliant team looking after him and an experienced care manager so we have continuity across the board. GP and District Nurses too are absolutely wonderful. Good old NHS!
So we keep on keeping on x
Update on mum
CBD getting worse
Do anti depressants work for PSP patients?
Going down quickly
