dinsdag 28 september 2010

Living in a different World....

After coming home tonight I felt really sad. Sad to leave him alone there and sad in the way that it is going this way right now...Writing all the things happening to us over the last few weeks has helped me to keep on track but I am not sure if this blogpost will do the same..
Yesterday Bram has left the hospital to go to a Medical Nursing Home for further treatment because in the state he is in now he can't come home right now. So we had a talk last week Friday with a lady who is in charge of the transfer from a patient either going home to a Rehab centre . All possibilities were discussed but there were not so much choices. There are 2 of those institutes in our city and both are situated in old buildings. For other places we either have to drive long distances or you are place in a bedroom with 3 other patients.. So we opted for a single room (I can't promise right now but will do my utmost for it!!) in a home in our city. Later that day the "Transfer-lady" came back with a big smile telling Bram that he would get a single room. We had heard stories about this home either positive or negative...
On Sunday-night I have baked an enormous batch of Brownies for all nurses and staff who have been so kind and helpful to Bram over the last weeks. He really felt at home in the hospital. Everything is strictly planned for the patients, the environment is beautiful and open and lot's of wood and light colours.The food is great with lot's of choices and very good presented which also helps the healing process when you are ill. Bram who was an interior architect, really admired the building from in and outside It is really a good place to recover.
But on Monday-morning he had to leave this place and I drove him to the PW Janssen Nursing Home were we had an intake on the 2nd floor.
The first thing we were told was: Single room??? No, you are on the list for a shared room. So immediately I told them that we were guaranteed for a single room so the staff-member left to find this out. She came back with: yes, you have a single room on this floor. It happens that a friend of us is there also who is in a far state of dimension so we told her that we didn't thought it was a good idea and that we wanted a room in another part. Reply: we have to ask for that: you than probably get a shared room.. At the end of the discussion he got his single room as we wanted..... The room was not ready at that moment, needed to be cleaned, so we were placed in a so called "living-room" after driving through a corridor full of wheelchairs, walkers with and without wheels and more Medical helpful tools...The room itself was full of horrible old -so called practical- furniture, unnecessary cupboards and 2 sleeping old men in wheelchairs.
And there was the smell of cooked food, urine and no fresh air at all.. Of course I know this from the time my mother had to stay in this kind of centre. And I know all stories about it from the papers and the television.... And I know it is difficult to get staff to do this kind of work.... And I know it all has to do with money.... And I know it might only be for about 6 weeks if things go well... And I know I shouldn't judge or compare it with the hospital he stayed in.. And I know we should give it a least a week to find out how he is taken care of... And I know the fact that he is still alive is more important... And I know...... And I know...... And I know...... But it is just hard for the 2 of us to deal with...
He staying in this horrible surrounding having dinner at a table with a woman who leaks her food out of her mouth and knowing that in a lot of these places the situation is more or less the same. The only thing you can do is go to a private place but we can't afford that. I think it is a missed opportunity that at the newly built hospital they didn't built a Nursing Rehab centre next to it.. He told me today that he had physiotherapy with a high walker they used in the hospital and walking went well with it but they couldn't find the other one any-more and they told him it was too far for him to go to his bedroom (he can do that in his own tempo I am sure as I have seen in the hospital)It was about 20 minutes he had and that was it for the day.. and he want to recover!!!!! Soon we will have a talk about his "care-plan"and we will definitely put this to discuss
Our friend Ineke came over tonight to cheer him up and he got tears in his eyes when he saw her and earlier on the day he was so happy to see me coming into his room. We talked about it and we are going to help him to come through and get him home as soon as possible. Bram is such a social person and seeing him surrounded by only old people makes him and me sad. There are hardly younger patients in the building which is so strange comparing it to our normal life we live. Of course he also belongs to the category "old" but no one sees him like that and his behaviour and mindset is so young. That is why we go so well together over all those years. We have so much in common, so much things we like to do together, so much things we share.
It is just not easy and while writing this I can't stop crying.I am sure we will go through it one way or the other. He will come home as soon as he can.
And myself..I am so tired sometimes during the day.Sleeping doesn't go well and there are so many things I have to think of.It sort of feels that it hits me more now than over the last weeks and coping with it all takes so much energy from me now. Something positive: I have finished the shawl I did start when Bram was taken to the hospital (will take a picture of it soon for my next post..promise!!) and I did start a new photo-book on Facebook with the name Rehab Blues because taking pictures did help me to cope with it over the last weeks and it has kept me focussed..

4 opmerkingen:

  1. Jan - I am sending big hugs to you and to Bram, who I don't know but feel I do. I know this is hard, especially for those who have artistic sensibilities (but really for everyone) to be in a place that does not feed the soul, but rather oppresses the soul. Bram, as an interior architect, would feel it very strongly. Maybe there is something you can do to make his room more cheerful. Pillows? Flowers? Art? You know Bram and what will speak to him.

    You both must take this as an incentive for him to rehabilitate and get out to the fresh air and beauty of more happy spaces as soon as he can. Can you take him outdoors for rides in the park or someplace nice?

    I know this is very hard, and sometimes it helps to tell us how hard it is. We are here, a support of friends ready to help, listen and send our love.

  2. hoi Jan en Bram,
    Wat een tegenvaller na zo'n toch veel meer inspirerende omgeving als het nieuwe ziekenhuis!
    Niks voor Bram , maar hij zal het ermee moeten doen: en inderdaad is het misschien voor hem een extra stimulans om zo snel en hard mogelijk aan zijn lijf te werken. Mooie woorden allemaal, maar hij zit er maar..
    We hebben met mijn moeder eenzelfde tocht gemaakt en dat was een afwisseling van tegenvallers en onvoorstelbare flexibiliteit en wilskracht van haar kant.
    Bram zal daar zo snel mogelijk weg willen en dat zal hem helpen, dat weet ik zeker.
    we denken veel aan hem en aan jou!!
    kussen van ons : ojon en jos

  3. Jan
    Stay Strong I'm Thinking of you and sending hugs.

  4. ik maakte hetzelfde mee met mijn echtgenoot met MS. Hij was 49 toen hij naar het verpleeghuis ging. Er was niet eens een internetverbinding!.
    En het eten is belabberd, en de andere bewoners sluiten totaal niet aan bij zijn leeftijd en leefstijl.
    Hoop dat Bram er zo snel mogelijk uit vandaan kan. En vecht, VECHT voor maximale zorg-, oefen- en begeleidingsuren, want dat is een strijd tegenwoordig. Je bent ingeschaald voor een beperkt aantal minuten, en het liefst doen de fysio's het minimale. Dan zit je plotseling op zo'n simpele benenfiets, zonder stimulatie van de fysio, en daar schiet je niets mee op.....
    Heel veel sterkte, en kracht!