Hi @EMG72
It seems to be we are pretty much on the same page on terms of what happened to our Mums and how they were subsequently supported [or not].
From what you say I am confident you have everything in control and I am very impressed how you have achievee this pretty much on your own, with your brothers not as engaged or proactive as yourself, so well done on that. If I may, I will say please do take care of yourself as it is important you remain healthy and happy in order to continue providing the level of care your Mum requires and that you would like to give.
Medication
On the note about Mum being only on asprin, this is because prior to the stroke she did not take prescription meds – only herbal and homemade remedies for any ailment that might have been identified. However, during her stay in hospital, because of the way they work and how she was looked after, she became:
- Diabetic
- Blood pressure increased.
As a result she was put onto insulin and blood pressure reducing medication and this was to be continued as part of the ongoing care post discharge to home.
What we did not know was how thus was affecting her finely tuned body/physiology as was pre-stroke. We did question why she was on these meds, but the GP (who was now in charge) told us it was necessary as preventative medication to prevent another stroke. We were not happy but did try on several occasions to get these stopped. Luckily for her, the diabetic nurse agreed with us that there was no need for Mum to be on insulin and after monitoring and blood tests to confirm, the insulin was reduced and then discontinued – Good win for Mum.
The blood pressure medication continued and GP insisted it continue. With Mum not able to speak and confirm, we [reluctantly] followed the guidelines. Well, Mum was having epileptic fit seizures and we not having a clue ended up taking her to A&E. This happened a few times and the hospital had put her on some medication for the fits. Again we refused (due to side effects that might happen – we decided risk was not worth the reward). On one of these visits to the hospital, it was discovered that Mum’s sodium levels had fallen below acceptable level and so this had to be addressed. I can’t remember exactly how, but the consultant asked what medication she was on and so we mentioned the blood pressure medication – we were told to stop it immediately! We kept telling the GP but they would not listen, but now, the hospital consultant has done it for us. We are very happy now because Mum is only on asprin.
So that is how Mum is only on a simple low dose asprin and totally healthy with it.
SaLT and MP etc
Wrt your suggestion about SaLT, we have pretty much given up in that because we now feel it is not as simple as we might think [for Mum – each person being different]. We were never happy with the SaLT part of the care but concluded there was not much point on “flogging a dead horse”.
We have not yet contacted the local MP, but we did escalate and lodge a complaint against the council’s social services team and how the social worker dealt with Mum’s case. It was a waste of time as they “swept it under the carpet” after “apologising” and again we said “let sleeping dogs lie”. But we are fully aware of Mum’s rights and if it comes to it, we will always escalate as needed.
ANSWER to your question:
No Mum never aspirated – we were ultra-careful and made sure there was no way Mum could get aspirated. It helped that in the early days (when risk is highest) her mobility was low due to the stroke related paralysis etc. Today she is more mobile and more aware and more demanding and so it is difficult at times to feed her. But we [and she] know what is required and we get there in the end.
Key challenges in first year:
- Feeding – duration and timings
- Epileptic fits (seizures)
- Cognition and keeping Mum from falling out of the tilt and recliner chair
- UTI infections (as a result of permanent catheter that was fitted) – again the catheter was an issue that took a long time to resolve and it caused many problems including UTIs and “popping” out, carers dislodging it during care, DNs not coming in timely manner to change it etc. This was one of the bigger headaches we had, but thankfully it did get resolved eventually
- [Lack of] physiotherapy.
There is much more to our story but I am pleased to say we feel we are well placed for successful ongoing care for our dear Mum.
Peace & Love
& 