Can you help me out?

[ChazD]

My husband fell at our home and sustained a severe tbi early December 2018. We have had a lot of complications which have lead to further damage, but I am hopeful now things are settling down. We are still on a medical ward waiting for a bed on a rehab ward to become available. He is bed bound with some movement to most parts of his body except his left hand. He has started to eat puree foods and drink again in the last 2 weeks. He has not spoken since a massive infection on the skull bone which replaced after his initial crainotomy. (Non verbal for 9 weeks)

Now we have got to a stable point and are not moving between hospitals, i would like to brighten up his room and wanted some ideas from those who have been in that environment. What would have made it a little more bearable or less boring! We have 3 children so I was planning on putting up a long piece of string across the room to peg pictures / painting onto.

Anything that you think - you know what that made a difference etc, that I can actually do because I'm not sure what would be too stimulating or not.

I feel very lost. Me and my husband have been together since we were 15 (20yrs this year) Any hints, tips or advice would be very welcome xxx

[Kirk5w7]

My sister made me a perpetual calendar, so I could keep track of the date and help bring me back into this world. It was nothing special but provided a talking point for nurses/ cleaners that came to my room in the morning. I think they were disappointed if the calendar had already been changed for the day.

It’s a start and something your husband can progress to change for himself

Janet xx

[ChazD in reply to Kirk5w7]

Thank you for your reply. I will defiantly do this once he has been moved to his rehabilitation bed as we know he will be there for most likely the remains of the year x

[Danger19 in reply to ChazD]

I was thinking of you and your husband. I wish peace and happiness for you both for the future. Please don’t feel alone. Yourself, your husband and family will be in my thoughts.

Take care

Vikki

[Danger19]

My heart goes out to you my love. I was in Addenbrookes Hospital after my injury. I had a massive tbi, I broke the base and most of the right side of my skull, had a subarachnoid haemorrhage and three blood clots. My major problem was I was so far from home. I think the picture idea of people that he knows and loves is fantastic. I think that may have made the hospital stay better for me. Perhaps something that reminds him of things he enjoys does he have any hobbies or any films or music he enjoys? I sincerely hope things improve for both you and your husband.

[ChazD in reply to Danger19]

I hope that you are doing ok and thanks for taking the time to respond xxx

We are currently waiting for a bed on Neuro Rehab at our local hospital where we can almost male a home from home but just wanted to brighten things up. Breaks my heart to think he could be laying there for 24 hrs looking at a bare wall and open window.

May I ask how long ago your accident was?

Hubby had 12 skull fractures and a subdural Hematoma on the right side initially. Has had 2 further bleeds on the left and they replaced the skull which then got infected and has been in a minimal conscious state since as well as dealing with high pressures with excess fluid.

Take care and thank you xxxx

[Danger19 in reply to ChazD]

Thank you for your reply. My accident happened January 14th, this year so I have been very lucky to have returned to the person I was. I am a registered nurse so if there is anything I can answer or help you with please just ask.

Take care of yourself, I wish peace for you, your husband and family.

[Mjll2001]

I have put a huge collage of photos from my time with my partner and all the holidays, days out , memories we have shared. I also let the children bring in certificates from school and I also have an area that input small messages on each days with reassuring messages like you are safe you are in hospital, this area also says the day, date and month etc. My partner has had a massive stroke and hypoxic brain injury that struck us early December. He was in a vegative state until Christmas and is now showing small signs of improvement. We are currently on a stroke ward awaiting a bed for slow stream rehab. Stay strong xx

[Lemon-trees in reply to Mjll2001]

Hi just seen your post . Keep strong . My partner ( hypoxic injury severe 40 min down time , basal ganglia and thalamus cells lost ) was in a coma for 2 months , veg state almost 3 months . He developed lung problems , BP, seizures , kidney failure and lost muscle tone as well as weight . So been through the mill . Dr told us he is too unwell for rehab and best be kind to allow him to naturally ' die' . Anyway last few days has awoken ; responds to commands , laughs at jokes , cries at appropriate times , sticks tongue out . Shows anger etc ' so in total 6 months of no real response and thinking he's not going to make it mentalky or physically . He recognises family and is sounding out words etc . Has emotional understanding and feelings . Can't swallow as food pegged . But trying to slowly get spoon of liquid down as part of physio.

Keep praying . Play music , stimulate the tongue with variety of tastes ( it's the keyboard to the brain ) massage etc and fragrance .

[ChazD]

We did big photo collages before he had his 2 smaller bleeds and because he kept moving around so much I have made flip books for him when he is able to start holding items again. We are on a respiratory ward until our Neuro rehab bed comes available. I think I need to get some pictures enlarged. I love the idea of positive messages - I have asked the kids to draw things but if it says we miss you etc on them I am keeping them at home in a memory box along with cards etc as I feel we need to be as positive as possible.

I hope you and your children are all ok.

Thank you for your advice.

Chantalle x

[Ecojackie]

Can you make it so he can listen to music? My wife did that for me after my crainiotomy during the 30 days I was unconscious. When I woke up, I was placed in a rehab facility for two and a half months. We set up music for me there too, which really helped, especially trying to get to sleep. She also brought enlargements from our wedding photos.

[ChazD in reply to Ecojackie]

I need to double check with the Neuro team as some people say music is too over stimulating but then others say it's ok....

Defiantly getting some poster sized prints done this week.

Thank you for your reply and I hope you are well

Chantalle x

[Hidden]

Hi Chantalle,

I am so sorry to hear what has happened. Thinking and praying for you all.

There is lots of good advice in the previous replies and each thing I thought of is already there. It also sounds as if you are doing really well. Keep up the good work and take time for yourself somehow in all your busyness.

Your situation is different of course but I can appreciate it a bit. My wife had a stroke 10 weeks ago. Fortunately she is making a good recovery and is home and even managing to get upstairs to sleep.

God bless

David

[ChazD in reply to Hidden]

Thank you for your reply. Very happy that your wife is home with you xxx

[WinB]

My Daughter bought me up a pic of my dogs and the fools left a long needle by me and for no reason I poked the dogs eyes out in pic lol I was away with the fairies, good that he is eating, when my Daughter saw a yoghurt pot on my bedside table she was so pleased. My Sisters sang to me and when I had a shunt fitted for hydrocephalus I woke up and sang "I'll take you home again Kathleen and my names Win lol..It is a long process recovery depending on the bleed but sounds like he is a strong man so good luck to you both and you also need a rest as we are hard work lol xxx Good luck to you both xxx Any songs he likes sing them to him xxxx Don't worry about those around you they might like a bit of happiness and always keep happy people around him xxxx

[ChazD in reply to WinB]

Positivity is key to all battles, right? I was told early on the prognosis was not going to be good. I am amazed we are where we are now! Thank you for your reply x

[wifeofsurvivor]

I really hope your husband is improving ( mine also fell & had a tbi in 2017, he is now home ) I got several photos blown up ( in Tesco!) They were ones I hoped would give him hope- one of our campervan on the beach to encourage him to think about doing it again- getting special photos enlarged so he can see them easily may help.

I wish you all the best xx

[ChazD in reply to wifeofsurvivor]

Thank you for your reply. I was going to order some pictures but i could go to my local tesco instead - thanks for that! Happy to hear your husband is home x

[PurpleHaze19 in reply to wifeofsurvivor]

I also got photos enlarged at a Tesco I found near to the hospital my husband was staying in! (He had a fall, TBI end of March this year and is now home l). I surrounded his bed with pictures of him enjoying life and being himself for the nursing staff to see the real him, and lots of pictures of us having fun, getting married, and pictures of him out and about with his son. The nurses said when he couldn't sleep at night or when they came to his blood pressure he was always looking at his pictures 💜 xxx I also played him his favourite music when he was in a coma and sang along to him, and when he was on the ward brought him in earphones to listen for short periods. Staff said ok as long as not too loud or for too long xxx

[tjkay]

One thing I found difficult and still do chaź is around orientation by this I mean forgetting the day and date and with my brain injury I need routine and stability and I dislike change so maybe try to encourage routine until he gets a little better, routine is good and at the brain centre I attend Dr Mary stipulates the importance of routine above most things because it brings back normality into our lives and everybody relies on routine try to keep things the same this consistency will be extremely helpful. it will aid a speedier recovery. Don't over pamper him but try to keep communI cation the and one last thing Don't change the way you relate like my family did and still do as you just end up feeling alienated.

I hope you find this information helpful as this helps me.

[ChazD in reply to tjkay]

Thank you so much for your reply and your advice. Once he is on the rehab ward I know they are really hot on routines and I do try to visit the same times each day (around lunch) to try and help with him understanding what time of the day it is etc.

I help him eat and drink when I am there as he is completly bed bound and reliant on others but I do ask him first and explain what I am doing and tell him that it will only be until he can do it himself because he will.

I visit with our children regularly and just try to talk about the normal bit I g day to day life! It is very hard to communicate as he hasn't spoken for months now but I still try.

I was taken aback when a nurse said to me that it was lovely to see me be so loving with him as others don't like to be?!? I couldn't believe it. Emotionally I'm no different to what I was before and I try my best to not show him I'm upset as I want him to see positivity.

I hope you now have a good support network and are doing well x

[Danger19]

Hello my lovely,

You have been in my thoughts. How are things at the moment. Any news on that rehab bed? Let me know how things are going?

Take care,

Vikki

[ChazD in reply to Danger19]

Hi Vikki,

Hope you are well x

Thank you for your message. Hubby is still on the respiratory ward awaiting the Neuro Ward bed....

I know it's no fault of anyone in particular, just a bit of a chain as we are awaiting discharges so he can mo e up the list. I do know that his physio team are pushing for him and all the consultants on the ward hassle the Neuro team quite regularly.

He is still swallowing and eating pureed food which is great. Not very much movement though - although I don't blame him. He is left on his own in a cubicle and the only interaction he gets is when I go - which as you would understand I can't be there all the time. I have the 3 kids to look after and I have to work to support us all! He has been trying to say words, very faintly but he is still trying.

I wouldn't say he has much purposeful interaction but there are glimmers. And that is all that matters.

Much love xxxxx