struggles on acute ward

[Lunalg]

Hi everyone

You may recall my husband was in a RTA in November 23 and after 3 weeks in a coma spent a further 6 weeks in ICU due to a tricky ventilator/trachy weaning. He is now on an acute ward and waiting assessment for rehab. Initial indications are that he has aphasia. He needs two nurses to support him to the toilet (still has bone flap/ craniotomy) although his mobility is getting better.

He has been on this ward for 3 weeks and I feel his progress is being halted. He is dirty and wet through most days. I took home 5 dirty sets of clothes yesterday. Up most of the night getting changed which is impacting his brain fatigue. Nurses wait for him to ask to go to the toilet rather than take him. Very undignified and upsetting.

He has very little therapy. 10 minute walk every other day with physios. Student speech therapists twice per week for ten mins and OT a couple times who ask him the same questions.

He has been referred for an assessment to rehab but I have been told the assessment alone can take weeks, never mind the bed in rehab.

Not sure what the prognosis is for aphasia although I have been promised that they will share some info with me.

I feel he is slipping backwards.

It was three months yesterday since the accident and I’m struggling more than ever. Grateful that I still have him but overwhelmed with the daily battle and not having enough energy to take care of kids, house and myself. I also return to work next week.

Any advice on how to deal with any of these challenges would be gratefully received.

[paxo05]

Hi, sorry for your disillusionment. I was virtually instantly discharged ( sign self out apparently) and rehab was not an option.

It can be a battle to get services and even more to communicate between them.

My diagnosis was late but once things got underway improvements happened. Be prepared for setbacks , it seems to be the case . It could be a case of improving one thong only to uncover something else.

Recovery seems a slow gradual process, and may result in a partial recovery.

You will here the 2 year recovery window , this does not mean he will not improve anymore after this. Medically there may be a window but he will adapt over the years and improve as he does so.

I would advise keeping a journal of his improvements. It's handy to look back and realise how well he is doing.

When he's home or in rehab centre things will improve more.

About his physical condition, if you've concerns make them known to staff. Yes they may be understaffed but that is not his or your problem. His welfare is

All the gest with your onward journey. As the song goes " things can only get better"

Pax

[Teazymaid]

I’m so sorry to hear how difficult life is for both of you Pax reply has said it all really about recovery . It is a rollercoaster of highs and lows .. but please talk to the nurses about what isn’t happening with your husband as needing the toilet and the lack of support he is getting .. if they do nothing then report it higher up in the hospital as this is not acceptable.. plus can you get your return to work delayed a little longer as you need to look after you In the middle of all of this Sue x

[skydivesurvivor]

me them same in 2000, spent 5 weeks in Adambrooks icu. Moved to st Healier awaiting rehab, mum came on to feed me every morning as food was left on tray at end of bed?!! Went mad at staff & took me home each day after physio. Back in evening. Shit care until I was sent to rehab. 3 months in rehab sorted me. Physio at home after. A long hard struggle, 20+ years on am still adjusting. A hard time ahead for you! Please use this site to vent y frustration, report his progress. Hope u find support advice here, sufferers and family voice their troubles often good luck & know we are all hear to share y journey! I found a smile often released the frustration. Looks good but we know the real reason for it?!!

[Hermother]

Get him referred to the Plym Neuro Rehab Unit. They are totally, totally brilliant. we were in same situation in similar timeframe as you. 1 week on the assessment ward post ICU before referral to Plym was dire. I believe you can get referred out of area if nothing else is available near you and the Plym is worth traveling to. Try to got in some sleep is my only other advice.

[randomphantoms]

Hi LunalgYou've had lots of great input so mine will be a little different.

If you are sure that he can hear you and if it's possible for him to use a pen/pencil.

Encourage him to listen .

Get flash cards of useful simple words and play with them. The puzzles on the side of cereal boxes can help too.

If nothing else it will give you a break from taking on the system and it may just give you both a sense of doing something.

Sending lots of love to you both.

[CanisLupus]

Hi it’s so hard but you’re doing brilliantly xx

You have mentioned he was in a RTA, if it wasn’t his fault have you spoken to solicitors to start a compensation case, you may get release of funds to help with rehab from the defendants if this is the case. Please do make a diary it will help you to remember important dates etc, further down the line when asked.

[Skallagrigg]

Hi there i.m waiting for my son to be moved from a rehab far away to one closer and been told the process does take a while. An assessment of sons needs was done December, then his profile was sent out to other places to see who would accept him, that's took a month, then all available units are checked for finance, suitability etc then we get to know and talk to units offering him care ,i.ve been informed now maybe march /April before I hear more, it is frustrating, but start working on a list of questions to ask potential units before he gets moved, check cqc reports, etc don't just accept first offer and good luck x