affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
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- lala land
I just need to rant a teeny bit. Feel free to give up reading it all if I go on too long, sometimes just typing it out helps.
My brother has had multiple health issues (including mental health ones) for a long time. He has lived alone, almost as a hermit for many years in a gov. supplied unit in Byron Bay.
Early this year he began to experience rapid eyesight loss and they discovered a huge mass inside his head. I had to get emergency respite here and race him up to the neurosurgery department of a large hospital where he was admitted. They found that he had a huge carotid artery aneurism that was pressing on his optic nerve and pituitary gland.
Anyway, they had him there a month, did surgery to put coils inside the aneurism and stents in the artery, and we had to work out what to do to help him because he couldn’t just be sent home alone.
So he came here. Chris supported that we would bring him here, he thought it might be nice company. Well yeah, Chris with FTD just kept telling me how unsafe my brother Paul is, and why did I let him do unsafe things – he could fall and break a bone! Anyone who remembers my story with Chris may remember his awful falls and injuries and refusal to use equipment and be safe. He would tell me to put his neck brace on Paul, and to make him use his walking frame etc. Oh there were some hilarious sides to it, and it took a lot some days for me not to just become hysterical at the absurdity of it all.
I just can’t describe what it was like – one neurological person who can’t move or speak and requires lots of equipment, and one neurological person who can move about freely but can’t see and has mental health issues ... well it became a disaster. He was up and down all night, waking Chris and disturbing everything and I had to end up putting him into a respite bed so we could try and get something sorted.
He would refuse to cooperate whenever services attempted to assess him, then tell me how little he could do for himself. Then decided to go home. He managed for a few days, then just took to his bed, and I had to end up calling the police in to see if he was alive. By now Chris had been in hospital with the aspiration pneumonia and was in his last 2 weeks of life so I couldn’t just race off and drive over an hour to his place to do anything at all. The police got him to open the door finally, as they were about to break in, and called an ambulance and got him to the local hospital. He stayed there for 2 months and again would not cooperate well with services assessing him to help him and was assessed finally as able to go home again with help.
This time it last nearly 6 weeks, but he was mostly saying he was doing OK.
Here is where Tillie is a bit dumb, because she just likes to be kind and to help. So I had organised to take him out for the day (3 weeks ago) to run errands and get some things he wanted, then bring him here for a day for a nice visit. When it came time to go home he went to pieces and said he can’t cope and could not face going home. I truly did not know what to do. How does one dump a blind man at his home and say sorry but bye? Well I just couldn’t, but I was nearly in a panic. I just could not see how I could possibly be in a carer situation again, not even for a few days, and I kept getting flashbacks, not of things I did for Chris, but of the feelings of being totally on hold as someone else had bigger needs.
Anyway, this rant is long but I’m trying to keep it a little short. I was able, by totally falling apart on the phone and refusing to be able to do anything for him, to get him assessed within 24 hours (nearly unheard of) for permanent placement in a facility, and they assessed him as eligible immediately. We were able to get a 4 week respite bed available, and then the very day (Monday last week) that he was going in there I got a call saying actually another facility had a permanent bed just become available! I couldn’t believe that he actually agreed, as he doesn’t do well with sudden decisions and changes of plan.
He has been very up and down, but today I was able to get some help and we cleared out his unit entirely. Every single thing is gone and somehow managed in one day between packing up, Salvation Army arriving to take some goods, upstairs neighbour pouring over everything and taking heaps of stuff, then some stuff out here to my place and the rest then in to him to make his room much more homely with some of his own furniture.
Please now may I have a break, please? I can’t believe that in 3 short months I have lost my husband and put my brother into a nursing home, and both were only in their 50’s.
I’m one tired, wrung out Tillie.
My brother has had multiple health issues (including mental health ones) for a long time. He has lived alone, almost as a hermit for many years in a gov. supplied unit in Byron Bay.
Early this year he began to experience rapid eyesight loss and they discovered a huge mass inside his head. I had to get emergency respite here and race him up to the neurosurgery department of a large hospital where he was admitted. They found that he had a huge carotid artery aneurism that was pressing on his optic nerve and pituitary gland.
Anyway, they had him there a month, did surgery to put coils inside the aneurism and stents in the artery, and we had to work out what to do to help him because he couldn’t just be sent home alone.
So he came here. Chris supported that we would bring him here, he thought it might be nice company. Well yeah, Chris with FTD just kept telling me how unsafe my brother Paul is, and why did I let him do unsafe things – he could fall and break a bone! Anyone who remembers my story with Chris may remember his awful falls and injuries and refusal to use equipment and be safe. He would tell me to put his neck brace on Paul, and to make him use his walking frame etc. Oh there were some hilarious sides to it, and it took a lot some days for me not to just become hysterical at the absurdity of it all.
I just can’t describe what it was like – one neurological person who can’t move or speak and requires lots of equipment, and one neurological person who can move about freely but can’t see and has mental health issues ... well it became a disaster. He was up and down all night, waking Chris and disturbing everything and I had to end up putting him into a respite bed so we could try and get something sorted.
He would refuse to cooperate whenever services attempted to assess him, then tell me how little he could do for himself. Then decided to go home. He managed for a few days, then just took to his bed, and I had to end up calling the police in to see if he was alive. By now Chris had been in hospital with the aspiration pneumonia and was in his last 2 weeks of life so I couldn’t just race off and drive over an hour to his place to do anything at all. The police got him to open the door finally, as they were about to break in, and called an ambulance and got him to the local hospital. He stayed there for 2 months and again would not cooperate well with services assessing him to help him and was assessed finally as able to go home again with help.
This time it last nearly 6 weeks, but he was mostly saying he was doing OK.
Here is where Tillie is a bit dumb, because she just likes to be kind and to help. So I had organised to take him out for the day (3 weeks ago) to run errands and get some things he wanted, then bring him here for a day for a nice visit. When it came time to go home he went to pieces and said he can’t cope and could not face going home. I truly did not know what to do. How does one dump a blind man at his home and say sorry but bye? Well I just couldn’t, but I was nearly in a panic. I just could not see how I could possibly be in a carer situation again, not even for a few days, and I kept getting flashbacks, not of things I did for Chris, but of the feelings of being totally on hold as someone else had bigger needs.
Anyway, this rant is long but I’m trying to keep it a little short. I was able, by totally falling apart on the phone and refusing to be able to do anything for him, to get him assessed within 24 hours (nearly unheard of) for permanent placement in a facility, and they assessed him as eligible immediately. We were able to get a 4 week respite bed available, and then the very day (Monday last week) that he was going in there I got a call saying actually another facility had a permanent bed just become available! I couldn’t believe that he actually agreed, as he doesn’t do well with sudden decisions and changes of plan.
He has been very up and down, but today I was able to get some help and we cleared out his unit entirely. Every single thing is gone and somehow managed in one day between packing up, Salvation Army arriving to take some goods, upstairs neighbour pouring over everything and taking heaps of stuff, then some stuff out here to my place and the rest then in to him to make his room much more homely with some of his own furniture.
Please now may I have a break, please? I can’t believe that in 3 short months I have lost my husband and put my brother into a nursing home, and both were only in their 50’s.
I’m one tired, wrung out Tillie.