Hi Graham...this all sounds very familiar to what happened when our Mum was discharged back in April. She had been in hospital for just 10 days and in that time - received limited physio and rehab. We were not allowed to visit at all, so were reliant on the updates from the nurses, and a couple of occasions when they would help her with the phone, so we could have a brief chat.
The OT rang us one morning to say she was declared medically fit, and they wanted to send her home ASAP - the next day in fact - with an early discharge care package. Like you I was able to negotiate a couple of days to make the changes needed, which included completely rearranging our front room...dismantling various bits of furniture...and bringing down a bed. This was just my Sister and I, with no help from anyone else....trying to pull it all together - whilst still coming to terms with the shock of the stroke itself. As you rightly said, the hospital seemed to give no consideration to the practical / logistical side of all the changes that were needed.
We were given a care package of visits three times a day, for six weeks. Three times rapidly turned to twice a day, and the six weeks became three. As once they knew my Sister and I were here 24/7 - they were very quick to inform us we were only entitled to UP TO six weeks. Hopefully your experience will be a little more positive as far as that element is concerned.
We were provided in the early stages with just a commode and walking frame - everything else we purchased ourselves...including an over bed table (which has been in constant use), a wedge cushion - to help Mum sit up in bed, various physio balls and a pressure cushion..as there was a 10 week wait. Eventually they also provided a wheelchair, perching stool and toilet frame, and arranged for an extra hand rail to be fitted.
We very much felt as if we were just left to get on with it, with little support or guidance. As I mentioned to you previously - we googled all the information we needed and much of that came from the Stoke Association website.
Mum has been home since the 17th April and in that time it has been a hard journey to get through. The only home visits being from the Speech and Language therapist, to assess Mum's swallow function. And the district nurses to treat various issues.
I would describe it as treading water, waiting for the time when the virus restrictions lifted - and we could receive visits from physio. Which has finally happened this week - she had her second session this afternoon. We have no downstairs bathroom or toilet facilities, which has made things a lot harder and have had no input from any Occupational Therapists, to assist with some of the more practical things, such as washing hair, or being able to get in and out of the car. All we had were a few exercise sheets to follow, and we have had to find the way ourselves, which has been very challenging at times. But we take it one day at a time and just do the best we can. Celebrating all the steps Mum has already made on her own, to get her to this point. Which hopefully will now be progressed forward by the Physio visits.
It will all feel very frightening to begin with...but it sounds as if you will get the support you need to get you going. And Jan has already made such amazing progress - I'm sure with time and patience you will find each day easier.
Sending my very best to you both,
Take Care, Karen
