Has any one else had a change to the respite help. Susan has the lady from respite twice a week for 2 hours each.
They go out somewhere and I pay only for Susan, ie coffee, cake or whatever Susan wants to buy.
Very soon this will change and I am asked to pay for Susan plus £10 towards costs. (Early estimate) This is going to amount to about £15 per time
about £30 per week. That's about 20% of my income DLA & CA. I cannot afford it. Ok, so Susan will just stay in with the respite help and I WILL GO OUT.
I wonder if others have this set-up. I do not expect respite help to loose money or be out of pocket. I think this respite group is part funded by the council.
So much for the governments announcement a few months back about extra funding. Sorry I realise that was a dream. Silly me. I have become used to these breaks.
Both daughters on holiday for 2 weeks and respite helper also on 1 weeks hols, and as good as Susan is she has sat on my shoulder virtually ALL day
for the last few weeks. She will not leave me. I go into the garden and if it is too cold / windy Susan waits by the door for me. (Maybe up to an hour) I do
pop back regularly to check she is ok and if she needs anything. But I need the break. She stands behind me nearly all the time. I have stepped back on her
twice not knowing she was there. She stands in doorways, waits outside the bathroom. (Always seems to know which direction I intend to go and slowly walks that way). Shuffled around a lot today. Will not / can not get into any tv programme she used to like. Just stares at the floor or just looks at me. It's the clowns mask I guess lol
But I wondered if others have respite help like this ? I guess in a few months it will be cancelled altogether. If I crack then social will have to sort it until I am better. That I do not want because it would be very bad for Susan.
I managed before without them I guess I'll adjust again.
Started a new routine last night. We go to bed at 9, with a little tv in the room. Susan is asleep in 10 minutes, I can then creep down and watch whatever.
It is not going to work every time, but leaving it until 10 o/c Susan falls asleep downstairs, gets angry when I wake her to go up and is trouble.
Sorry to babble on
cris
They go out somewhere and I pay only for Susan, ie coffee, cake or whatever Susan wants to buy.
Very soon this will change and I am asked to pay for Susan plus £10 towards costs. (Early estimate) This is going to amount to about £15 per time
about £30 per week. That's about 20% of my income DLA & CA. I cannot afford it. Ok, so Susan will just stay in with the respite help and I WILL GO OUT.
I wonder if others have this set-up. I do not expect respite help to loose money or be out of pocket. I think this respite group is part funded by the council.
So much for the governments announcement a few months back about extra funding. Sorry I realise that was a dream. Silly me. I have become used to these breaks.
Both daughters on holiday for 2 weeks and respite helper also on 1 weeks hols, and as good as Susan is she has sat on my shoulder virtually ALL day
for the last few weeks. She will not leave me. I go into the garden and if it is too cold / windy Susan waits by the door for me. (Maybe up to an hour) I do
pop back regularly to check she is ok and if she needs anything. But I need the break. She stands behind me nearly all the time. I have stepped back on her
twice not knowing she was there. She stands in doorways, waits outside the bathroom. (Always seems to know which direction I intend to go and slowly walks that way). Shuffled around a lot today. Will not / can not get into any tv programme she used to like. Just stares at the floor or just looks at me. It's the clowns mask I guess lol
But I wondered if others have respite help like this ? I guess in a few months it will be cancelled altogether. If I crack then social will have to sort it until I am better. That I do not want because it would be very bad for Susan.
I managed before without them I guess I'll adjust again.
Started a new routine last night. We go to bed at 9, with a little tv in the room. Susan is asleep in 10 minutes, I can then creep down and watch whatever.
It is not going to work every time, but leaving it until 10 o/c Susan falls asleep downstairs, gets angry when I wake her to go up and is trouble.
Sorry to babble on
cris
Last edited: