Thursday, August 22, 2013

Rehab lets Mary down

   

                                    Mary,  London 2007

      You cling to hope in so, so many ways, even when it all seems to be said and done.

       Except that it’s never really done. You just go through various stages and phases of the next damn crisis and you learn to carry on and live with it even as you’re trying to solve the original problem, wondering what you can do next to make things better.
    If there’s one thing we’ve learned: there will be another crisis and you will have to solve it and the solution may not be what you wanted.

      The worst thing about watching Mary go through those early months of her brain injury was watching the changes it wrought. She became thinner because she couldn’t eat properly. But that was to be expected. What we didn’t expect were the peculiar faces she’d make, the drooling, the spastic movements, the very un-Mary-like behaviour that came over her. Friends and co-workers found it difficult to see, so they stopped coming to visit – or did so very rarely.
      I can’t think of anything more difficult than knowing a vibrant, young person, full of life, with a huge personality and ambition being reduced to someone sitting in a wheelchair, devoid of the very things that defined them. They’re there, but they aren’t there.
      Gone was the sharp, edgy humour, the rapid-fire retorts, the woolly tales of work, the opinions, the words, movements, gestures that made Mary so special and endearing. The driving force, the bustling entity that was Mary was reduced to a vulnerable, confused person in a wheelchair. I hardly knew her.
    
     And I have to confess, to this very day, I have the greatest difficulty in realizing the person sitting in that wheelchair, fighting to communicate, is the same person I watched grow up, the lovely daughter we raised. It seems impossible.

       Mary just became a very, very different person as a result of this brain injury and no one really expected that. It just happened. One day she’s able to talk to you, to communicate, the next day all vestiges of what she was, all she’s done and accomplished is reduced to constantly stained T-shirts, the fact she wears a diaper – although she’s never been incontinent – and the fact you can’t seem to understand what she’s trying to tell you. 
     And she tried to tell us lots those first few months.

    Mary’s first encounter at a rehab facility – where they made it clear they didn’t want her – was a horrifying experience. There were a lot of things going on in the background during this time period. The food, or gastric tube, caused mayhem, Mary was still fairly agitated (it would take months for this to ease), she began to eat pureed foods – and we sought legal advice.

      We had full plates; but the main portion was Mary, getting her better however we could. It’s a daunting task that is still – after more than four years – foremost on our minds as we go to sleep, and the first thing we think of as we wake up.
   
      A patient leaves hospital in one of the many transport ambulances used to ferry them about. I’ve been in and out of a few of these vehicles and I have to say the people who work for these companies are terrific, upbeat and positive – even if the job really isn’t.
      Mary arrived at this particular facility on a cold October day. Her arrival on the floor where she was assigned was met with some turmoil between staff members; there was a great deal of nastiness between two individuals over the placement and need for a pole to help steady her getting out of bed, and a lot of kerfuffle about the bed alarms that would sound if Mary tried to get up. It was a bit of a sideshow. I couldn’t believe staff would behave this way in front of a patient’s family – and the neutral ambulance drivers.
      It was just a taste of what was to come.

     Over the next few days, however, we met all the therapists who’d work with her and they more than made up for the floor staff. Therapists at rehab facilities are dedicated and professional, innovative and willing to employ all kinds of methods to help get someone back on their feet. They were wonderful – the only thing wonderful about the whole rehab experience.
     What wasn’t so great was the floor staff – except for two nurses, who proved to be helpful and kind – and the fact they kind of let patients do what they wanted, even if they weren’t really capable of doing anything much.
     Mary, keen to come back and struggling with being in a wheelchair, would push herself up and down the hall, banging into things. The staff hated this. She needed 24-hour care. We stumped up a whole bunch of money to cover most of this, and the facility stumped up the other half, but with a great deal of animosity. We hired personal support workers from an agency used by the hospital and they had, luckily, already met Mary.

     We knew by this time that she was legally blind, her optic nerve a pale version of its former healthy self. She had what the neuro-ophthalmologist called “cortical blindness,” a condition where half of Mary’s sight was gone in each eye; in other words, Mary was wheeling herself around and unable to see out of the left side of each eye; what she saw, in fact, was described by the specialist as dark blinds drawn down over half of each eye.

     I arrived on the floor one day – they had to keep changing the codes as patients kept escaping (there’s a universal theme here in all facilities, I think) – and I had a hard time keeping up with the latest code. This day I’d come through the back door and up the stairs to the end of a dark hall.
    I could hear a nurse berating someone and it was Mary. The nurse was shouting that Mary had to stop going into other people’s rooms. Mary couldn’t really see and she’d shuffle her chair along until she saw something that looked familiar.

      I was aghast and shouted at the nurse that Mary was all but blind and how dare she, etc. (The old harridan thing came over me, yet again.) Mary was trying to find her room and unable to because of her impaired vision. It was heart-breaking.
     The nurse was only slightly chastened. I frankly don’t know what it would take.

     And Mary seemed completely and utterly exhausted: I don’t think I’d ever seen anyone so tired, even as we met other exhausted and wounded people. There is something about a brain injury that defies logic. You just don’t know how the person will react to therapies, how well they will recover, or even if they can recover.
    Other patients assured us – and Mary – that it would take a week or so, that she would get used to the pace of the therapies, that she could rest in between and regain her strength. Still, it was a major concern.




                     Mary and her friend,  Johanna, in London

     Often, behaviour in rehab is altered dramatically. We met a number of people there who had been roommates of Mary’s at one time or another. It was comforting to see them so well, so recovered from various trauma and head injuries due to aneurysms, strokes, accidents.

   One successfully recovered patient who stands out in my mind was a prison inmate who’d been attacked. In hospital, he had to be handcuffed to the bed and lay there screaming obscenities, lashing out at the nurses and generally being a nuisance. (We demanded Mary be moved after he called out that he wanted to do certain things to her … well, you can guess. Sex was the last thing on Mary’s mind.)
      Burly prison guards or police officers would sit at desks outside the hospital room and come in and say really tough things like, ‘Get back into that bed,” or “Cut that out,” but it was the poor nurses who bore the brunt of their mistreatment.

     Another patient who had suffered terrible aggression following an accident acted out horribly, screaming and shouting, pulling out her tubes, escaping and being obnoxious to all around her. If it hadn’t been so bloody sad, it would have been downright entertaining.

     We encountered both these people at the rehab centre: we hardly recognized them. They were subdued, on the mend, co-operative and friendly. When I asked how they were doing, that I’d met them at the hospital, they all said, sorry, they didn’t remember being in the hospital, yes they were fine and getting better.
      What a blessing, we concluded, that most of them couldn’t remember the hospital stay or the things they did and said. And wasn’t it amazing what time and rehab can do to the injured brain?

      So, despite Mary being agitated and trying to get up out of the wheelchair and walk by herself and get about, we were very hopeful. 
     While she baffled the speech therapist, who just couldn’t get her to talk, she did well at physiotherapy and other cognitive therapies. I recall with the greatest delight, the day I arrived on the therapy floor and watched Mary, a cane held behind her back, walking along the hall, a person supporting her at the back, one in front of her in case she fell.
     And Mary did talk, when she was startled or surprised: “It’s too bad we just couldn’t keep her surprised,” the speech therapist joked one day. It was the oddest thing he’d come across and he was at a loss.
     She was seen by a physiatrist, a specialist who treats brain-injured patients. This doctor knows a lot about anoxic brain injury and Mary still visits regularly for meds tune-ups.
    They adjusted Mary’s medications at the rehab centre and she was put on a drug used for Alzheimer’s patients to help memory and cognitive abilities. Mary had been taken off the Scopolamine patch at the hospital (a drug used to treat drooling but which can and often impairs cognitive abilities), but this had to be put back on.

      Still, although the advances were small, they were there. And it was a good thing.  It was the best she’d ever be – to date.

      Then over a period of three days, Mary started to become really fatigued, fought to eat, stay awake and aware. We’d had a problem from the very beginning with obtaining fluids for Mary at this rehab facility. She couldn’t drink water (it’s deadly for brain-injured patients who choke easily), and the only fluid they provided came in the form of puddings or a thickened juice. There didn’t seem to be enough of these small containers they considered ‘fluids’ and Mary always seemed to be dry and dehydrated. We trekked to another hospital and bought boxes of thickened water and brought it in for her, begging staff to help her drink it.
     The feeding situation was not good: She’d had the g-tube removed prior to going to rehab (they don’t like to deal with such things) and so it was imperative that she got optimum calories and fluids. We think this was very much hit and miss.
   
    In fact, one evening, an aunt of Mary’s, who’d been visiting, was so utterly enraged I thought she’d explode. She’d just witnessed a nurse watching TV in the dining area and shovelling food into an elderly man’s mouth. This nurse didn’t say a word to the patient, didn’t interact with him at all.
     This alarmed us and we tried to be around at mealtimes.

     Mary had been able to feed herself up to this point, a tricky procedure, but she could do it. Special grips were put on the spoons and she’d happily eat everything given her. She especially loved the thickened cranberry juice and drank it with such gusto it flew everywhere.
     We arrived one day to find her surrounded by the thick gooey stuff and thought she’d been bleeding.

     But there were other problems with staff. While the PSWs we hired would get her to the washroom, often she was left to sit in a wet diaper during the day between therapy sessions.
      A washroom schedule was suggested but never really implemented.
      Now Mary was never, ever incontinent. These diapers were always for the convenience of hospital and rehab staff. It made it so much easier for them. It’s only since last December that we finally got the dreaded diapers put aside, although they’re still used at night. 

     I often think, when I look at her, the old Mary would have been outraged at the indignity of all that has happened to her … She was a social worker, after all, and knew quite well what could happen when brain injuries were involved.

     Being left in a wet diaper is not only uncomfortable, it’s dangerous for a person who is in a weakened state and brain injured. It set the scene for another crisis, another scary scenario: Mary picked up a urinary tract infection that altered her forever.

    We came in one day to find her nearly unconscious, her head down on her wheelchair tray, almost unresponsive. We started to panic. The staff seemed unconcerned, so we made them call a doctor. She was prescribed antibiotics, but it was too late.
    To this day, I am utterly disgusted at the cavalier attitude of rehab nurses. It was like my daughter wasn’t important enough for them to watch out for her well-being.
     The infection – in fact any infection in a brain-injured person – was disastrous. We all feel lousy and take to our beds when we get sinus, chest, or other infections and need penicillin or antibiotics. But for a patient with a brain injury, something occurs chemically in the brain and they take a downward spiral within a few hours, from being maybe okay, to being dangerously ill. (This information came from the physiatrist.)

     She just couldn’t come back. An ambulance was called and back she went to the hospital where this whole ordeal began. It had taken a mere 10 days for her to go from promising, to seriously ill.
     We were devastated as we sat with her as she went through the readmission process in ER. She was so terribly sick, had to be catherized again and put back on the floor she left. 
     Nurses who’d previously cared for Mary were appalled at the sight of her. She’d left in great shape – well, all things considered – and she came back thin, sweaty, pale and unaware of her surroundings.
      They were as shocked as we were.
      So Mary had to start over again – begin that long haul back to awareness and well-being. It took weeks and weeks.
      We all wondered what would happen now. Perhaps she was just too damaged for rehab? What we would do? Where would she go?
     It was made abundantly clear to us by hospital staff that Mary would be made better, made stronger and – yes, return to rehab. We had mixed feelings about this plan but there was no alternative. So we waited as she got over the infection, were horrified at the damage it had done and hoped, once again, for the best as the reapplication to rehab process began.
  


    


             We often brought Mary home from hospital for visits


         The best has never really happened for Mary, although her vision has improved somewhat.
    And there are signs she is making small advances. This week, (on Aug. 20), Mary attended her weekly outpatient therapy program at another rehab facility (fabulous staff at this one). Patients were asked to take turns reading aloud paragraphs in a statement about self-esteem.
    A first: Mary was asked to read two paragraphs out loud. Caught off guard, she did just that, stumbling on some words due to her dodgy vision.
   The others cheered.

    So maybe progress come in small triumphs, not huge leaps.
    That's fine. We’re patient people.




Next week: Regaining her strength for more rehab
     



      

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