Having a bit of a meltdown!

[JaneC]

I'm having a bit of a meltdown today and thought it may help to share my feelings here in the hope of tapping in to other peoples' wisdom from similar experiences.

 

My hubby, Robin, is currently into his 12th week at a neuro rehab unit following an SAH, IVH and resultant hydrocephalus. He is making reasonable progress, given the extent of his injury and looking at others progressing in the unit, I have always held the belief that Robin will be walking (with whatever assistance is needed) at the point of discharge.

 

On Friday, whilst standing in the corridor outside Robin's room while the staff hoisted him into his wheelchair for our first proper outing in the 5 months since this has happened, one of the physios asked me if Robin's consultant had spoken to me and when I said no, he proceeded to very nonchalantly tell me that we need to consider property adaptations as Robin will be a wheelchair user on discharge. I held it together for the whole of the outing then on our return asked the physio to explain things properly to me in private.

 

Having pondered his words and insensitivity over the weekend, I decided to take it on the chin and not confront him about his lack of professionalism so that he continues to work well with my husband. My feelings and upset are insignificant in comparison to my husband's need to achieve as much potential as possible prior to discharge.

 

Then today, I have been approached by one of the OTs saying that she had been asked to visit my home to do an environmental assessment and she was shocked that nobody had mentioned this to me already. She has then basically bombarded me with a barage of information about care packages, room dimensions, door dimensions and even a list of things that are not considered essential for discharge (such as access to bathing facilities and even basic access into and out of our property). The whole thing just overwhelmed me and I became very tearful - I can usually hold it together and be a "Warrior Wife" but not today for some reason. She then backed down a bit when she realised her approach had pretty much stunned me but I am still feeling rather overwhelmed by the whole episode and by the considerations I now have to face.

 

Any advice or words of wisdom would be greatly appreciated. Thanks.

[Daffodil]

Jane, I am so sorry that you have been side swiped like this, that's what it must feel like I expect but don't despair. Robin has done very well and so have you and he will continue to heal in the coming months and longer so I think it's safe to say that right now they just don't know what the outcome will be, they never do with any brain injury. I think I have mentioned Edwyn Collins , the singer before, he's now back recording albums even with little use of one side of his body so don't give up.

It sounds like right now walking is a too much of a stretch for him , plus he has been bed bound for months which in itself takes it's toll even if he has had the rehab.You have said before he is a determined man so I expect once back in his own home he will come on a great deal as well, making the building adjustments means he can come home although it's a shock to have that sprung on you that it is needed it is also good they are thinking and preparing to help.

His brain will take its own time frame to heal from the assault of the SAH and hydrocephalus, the effect of the hydrocephalus really knocked my balance and coordination but as I settled down with my shunt and got further into recovery from the bleed my walking got better and now it's good and I don't fall over much unless I'm tired so never say never, my family got told to expect the worse, many on here had similar prognosis and yet each day has brought some progress even if sometimes it was painful, so I would look at the positive in their ham fisted delivery... He is well enough for them to consider letting him come home, that's a good thing, a milestone you can build from.

it takes a while to get any acceptance of what has happened ( not sure I'm there yet) and there is a real grief at the loss of who you were and the life you had but the same is true for partners, you need help to accept the changes that Robins illness has brought...I hope you are getting the help and support you need too and not always being the warrior wife although warrior wife is excellent as a patient advocate!

Sending hugs. Our partners are such rocks but you go through such a hard time being the ones left watching, waiting, hoping. Hang in there and a good cry is excellent medicine sometimes!

[paul99]

hi jane

 

its still early days with hubbys recovery, I understand how you feel I can tell you now hubby will improve some more when he is in his own home.

 

it takes time for the brain and body to kick into full a head of steam, I think the staff don't think of what they say and how they say it

 

it  seems as if they don't care but to them its normal and do not take into account of the family.

 

as they have decided to move on when the o/t comes to the house push for everything you can a ramp if necessary a wet room  a hoist to lift hubby if he is unable to move himself you will also need extra help around the house bathing getting dressed and when he goes back to bed in the evening.

 

but most of all is that you take time out to recoup because it is and will be very draining on you ask for all the help you can get.

 

also ask for physio to come in to work on hubby twice a week or get them to arrange to take hubby to the rehab centre for further physio and o/t  a couple of times a week for as long as they can.  I've  had to fight for my lin every step of the way because lin can do what she can every small step is a good one but be prepared for the odd step backwards I think hubby will do what he can.

 

push for as much as you can you can always send a p/m and if I can help I will good luck paul

[Karen]

Jane, both Daffodil and Paul have given good replies.

 

I've had good recovery over many years and often the brain will find different pathways .... it just doesn't stop at a certain point and you should see Robin improving and as he's only at 12 weeks.  You may even find that once he gets home, that it will give him even more incentive to push forward ... 

 

I hated every minute in the hospital and I was only in for a couple of weeks.... plus I experienced quite a bit of muscle wastage and was like a rag doll when I left.  I also had to use a wheelchair to get out and about for quite some weeks.  I could manage walking from room to room around the house, but not much else.

 

My husband had to put up grab rails in the loo and bathroom ...I still have one in the shower as I find it handy if I get a dizzy spell and balance isn't too good and I can shower one handed.  

 

It will get better ....  ignore the crassness of one idiot who doesn't know what this is like to experience, take the help that you and Robin will need and push forward. 

 

It's no wonder that you're feeling upset, you've had a tough time and could do without insensitivity.

 

Sending hugs xxxx

[Louise]

All good replies.

 

They said that I wouldn't recover more that when I was at the 3month stage - Oh how wrong they were, they said I'd be 80% disabled I say 80% able it is slow we all recover at different times but.

 

Yes push for things, answers, ask questions when your not sure.

 

But most of all take time for yourself, because YOU really do need it...

 

take care

[JaneC]

Thanks to you all for the wonderful responses.

 

I feel a little more rational today and determined that whilst I want him home asap, I will NOT compromise his basic human rights and dignity.

 

This whole process is a bit like eating an elephant - you have to do it one mouthful at a time, even when the whole elephant is thrown at you in one go!

 

It would be an awful lot easier if those supposedly caring for him took a minute out to reflect on the way they deal with his family. What is part of their every day is an unique and often mindblowing experience for me so a little thoughtfulness would go an awfully long way.

[Daffodil]

Hi jane. Glad it's a better day, hope Robin is doing ok.

No don't ever compromise , as his advocate it will make a HUGE difference in the outcome with you fighting for things to be done with consideration, thought and care for the whole family but do grab time for yourself when you can , to continue your analogy ,as you say it's like eating an elephant which is going to be a very long sitting so take little rest breaks and moments to breathe and walk outside, it will help you digest and hopefully in the long run feel satisfied. best of luck

[Karen]

You're welcome Jane and hope that it's helped.... glad that you're feeling a little calmer.  I really hope that the medics treat you a little more kindly in the future ... won't do them any harm if you remind them, as in this is personal to you and just not a job and you're also in shock with the whole thing too. xx

[Louise]

Jane, I found that sometimes too, its all new to YOU but THEY do it every single day... Yes wont do any harm at all honey in reminding them a little.

[Winb143]

Hi Jane,

 

My family were told "Have you thought of putting her in a home as she will never walk again" by the OT's, cheek !!

 

Take no poo off them,  but get them to help you as much as poss.

 

Your hubby is in there and will come back to you as I did to my family.

 

You will need your rest but once I had my shunt fitted it was "Click" and I came back to reality.

 

I tapped my feet and asked my hubby for a zimmer  frame as a present, I now walk alone, no stick or frame but still only a 100 yards tops, but I am getting there and so will your hubby so get some rest as we can be pains and our loved ones have been through it also.

 

Good luck

WinB143 xx

[JaneC]

Cheers WinB143 (Love your pic btw - I am a big Victoria Wood fan and adore Mrs O)

 

Thought I should update everyone that since my "meltdown" I found an inner strength and decided to give Rob a pep talk every day again - it worked in ICU so why not try it again now.

 

Not convinced it's as a result of those daily talks but this week he has progressed in leaps and bounds. We have put together an "escape plan" (a.k.a. how to get home from rehab) which has three strands : walking, talking and weeing. So far he has progressed from a sling to a standing hoist, has today begun talking in sentences in a "loud" voice(as opposed to whispering) and for the very first time pressed the buzzer to call a nurse when he wanted a wee!

 

Those are three mega milestones all in one week so all I can say to those so called "professionals" who want to write him off is BRING IT ON!

[Louise]

Oh that is great news onwards and forwards its those little things that make you smile. 

[paul99]

that's what we want those talks do work keep it up Jane keep reminding him from time to time

wishing all goes well for you and hubby go girl  

[Winb143]

Well Done Jane and of course Robin,

 

Win<~~ says in a Mrs O voice " Oh Miss Jane I am so pleased for you both,  ere ya go ave a nice cuppa.

 

Now be well xx and never give up xx

 

All the best

 

Win alias Mrs O xx xx

[Winb143]

Jane, how's the 3 pronged escape plan going ? On schedule I hope xx
You keep well and rest as well as hubby.
 
Good luck to you both.  It's a long haul Jane but with your help ie our loved ones we will definitely make it xx
Your story makes me so happy xx even if you get down sometimes you never give up, I am proud of you. Have you sung with each other yet Jane ?

 

My Dad used to say to me reading a letter a letter out loud  "Dear Barney according to the shedooley (schedule he meant) ha .. keep onwards and do not slip from the shedooley ha bought back good memories xx 
 
Love
WinB143 xx xx

[terid8980]

Oops I messesd up! Sorry! Anyway, hang in there, your husband will get better . It may take a while, but he will. And you will too! If you don't understand something, don't be afraid to ask. My husband and I have learned that most medical professionals don't know very much about the brain, so don't be intimidated. Good luck.