Good Evening
Not been in touch for a while. Last respite period when I was home & had access to my PC seemed to go in a flash. Did visit TP & try to catch up on threads, but didn't have the time (or the energy!) to post. My heart goes out to so many who are going through difficult times of their own.
My Dad (John) has been very poorly of late, and so the Dr suggested that his respite be brought forward - consequently I am home 2 weeks earlier than anticiated. Behaviour & communication have gone really down-hill in the last few months. We still (thank God) have some lucid times when Dad can hold a conversation, take part in activities & is still good company & on those rare occasions his sense of humour is still very much there (which is just so wonderful!) Oh my lovely Dad! The bad times sadly are getting more frequent and much, much worse....
Singing/growling the same song over and over again. We had about 2 months of "The First Nowell" (long after Christmas had passed) and about 4 months now of "My Bonnie Lies over the Ocean"! Why that song I don't know (we have no Scottish roots) but it starts first thing in the morning and sometimes carries on all day, with a few loud renditions in the middle of the night for good measure.
Long spells of agitation, growling noises, making so sense whatsoever, saying the same made-up words over & over again, eyes closed, blocking everything out and just singing / growling / repeating odd sounding phrases. It breaks my heart that we just can't seem to get through to him at all.
Most major problem - we have really struggled to get him moving in the morning. Very resistive, very aggressive and on occasions violent (which is heartbreaking.) He will refuse to move, clings to the radiator or curtains, shouts & tells me to "sod off & leave him alone" Mostly he is asleep when the carers come & often we leave him to sleep in. When we can get him roused before the carers arrive, mostly they can do nothing with him as he is unco-operative and aggressive. So it's left to me & Mum to try & get him up, sometimes midday or even later. Have left him until 4 p.m on a couple of occasions when he wouldn't move - but then worry so much that I am not getting the required fluids & meds into him during the day.
The odd thing is - that having gone into respite care (and this is day 4) - he has been a perfect angel! As yet they have not made any changes to his meds, and he is being totally compliant in the mornings - happy, cheerful & quite lucid. I've been in to see him every afternoon and don't get me wrong it's lovely to see him on such good form - I just wish that the staff had experienced some of the extreme behaviour we have to deal with at home.
Nuses have said that this does happen - behaviour is far worse in their own home and with those they love - just wondered if anyone else has experienced this.
Sorry to tamble on - but I have about 2 months worth to catch up on! Hope all is well as can be with my "virtual friends" on TP & good wishes to all of you.
Love
Gill x
Not been in touch for a while. Last respite period when I was home & had access to my PC seemed to go in a flash. Did visit TP & try to catch up on threads, but didn't have the time (or the energy!) to post. My heart goes out to so many who are going through difficult times of their own.
My Dad (John) has been very poorly of late, and so the Dr suggested that his respite be brought forward - consequently I am home 2 weeks earlier than anticiated. Behaviour & communication have gone really down-hill in the last few months. We still (thank God) have some lucid times when Dad can hold a conversation, take part in activities & is still good company & on those rare occasions his sense of humour is still very much there (which is just so wonderful!) Oh my lovely Dad! The bad times sadly are getting more frequent and much, much worse....
Singing/growling the same song over and over again. We had about 2 months of "The First Nowell" (long after Christmas had passed) and about 4 months now of "My Bonnie Lies over the Ocean"! Why that song I don't know (we have no Scottish roots) but it starts first thing in the morning and sometimes carries on all day, with a few loud renditions in the middle of the night for good measure.
Long spells of agitation, growling noises, making so sense whatsoever, saying the same made-up words over & over again, eyes closed, blocking everything out and just singing / growling / repeating odd sounding phrases. It breaks my heart that we just can't seem to get through to him at all.
Most major problem - we have really struggled to get him moving in the morning. Very resistive, very aggressive and on occasions violent (which is heartbreaking.) He will refuse to move, clings to the radiator or curtains, shouts & tells me to "sod off & leave him alone" Mostly he is asleep when the carers come & often we leave him to sleep in. When we can get him roused before the carers arrive, mostly they can do nothing with him as he is unco-operative and aggressive. So it's left to me & Mum to try & get him up, sometimes midday or even later. Have left him until 4 p.m on a couple of occasions when he wouldn't move - but then worry so much that I am not getting the required fluids & meds into him during the day.
The odd thing is - that having gone into respite care (and this is day 4) - he has been a perfect angel! As yet they have not made any changes to his meds, and he is being totally compliant in the mornings - happy, cheerful & quite lucid. I've been in to see him every afternoon and don't get me wrong it's lovely to see him on such good form - I just wish that the staff had experienced some of the extreme behaviour we have to deal with at home.
Nuses have said that this does happen - behaviour is far worse in their own home and with those they love - just wondered if anyone else has experienced this.
Sorry to tamble on - but I have about 2 months worth to catch up on! Hope all is well as can be with my "virtual friends" on TP & good wishes to all of you.
Love
Gill x
