Helen I dont write in here very often but just had to add my thoughts to you and Alan with everyone else. As someone else suggested try to find out if you have a hospice in your area - we did that for my mother for two weeks before she came to me, that gave time for everything to be put in place for equipment and more importantly help - district nurses, and carers and night sitters if ever we wanted them. I was a trained nurse and worked for Marie Curie - I would suggest you (when you feel up to it) enquire from your doctor and medical staff about the availability of them and McMillan nurses, I used to sit with many people all night as well as caring on day duties. They can give you support and practical help wherever Alan is being cared for. I am sure everything feels overwhelming at the moment but try to get as much help for yourself as well as Alan as you can. I'll be thinking of you both. Sue
Helen and Alan
- Thread starter Grannie G
- Start date
Helen just wish i could be by your side, pm me if you need to, trevs in respite, could be with you in a few hours , love pam
Hi
I can't say anything that hasn't been said already, but I wanted to say that I was sorry to hear of your news.
I have followed your posts and seen the photos you have posted of Alan and it must be such a shock to you and anyone who knows you both.
I hope you get the support you need and deserve.
x
I can't say anything that hasn't been said already, but I wanted to say that I was sorry to hear of your news.
I have followed your posts and seen the photos you have posted of Alan and it must be such a shock to you and anyone who knows you both.
I hope you get the support you need and deserve.
x
Just wanted to say that I always read your posts and that I am so sorry to hear of your news. Having seen your pictures it is such a surprise as Alan looked so good and full of beans. My sister and I both work at our local hospice and cannot emphasise enough what support they give. Hope you have one in your area that will be able to offer assistance either for respite or for day care. My thoughts are with you and your family.
Dear Helen - Have only just found this thread. What devastating news for you. I hope that Alan is in a respite bed this evening, just to let you catch up with events and hopefully have an unbroken night's sleep - that is, if sleep will be possible.
Thinking of you both, and sending love, Nan XXX
Thinking of you both, and sending love, Nan XXX
Dear Helen
I am so sorry about Alan, such a lovely man.
As you know I went through this last year with my brother so I can only say please look after yourself as well you will need all your strengh to get through this.
Thinking of you both.
Love Roseann xx
I am so sorry about Alan, such a lovely man.
As you know I went through this last year with my brother so I can only say please look after yourself as well you will need all your strengh to get through this.
Thinking of you both.
Love Roseann xx
I have experienced some things in my life but I don't think I have ever had such a roller-coaster of emotions as I've had today.
I am gobsmacked by your loving and kind responses and it feels like being uplifted somehow by lots and lots of hands
Alan is not in respite tonight because somehow I managed to gain enough wherewithall to know that I could not just abandon him without making sure his needs could be met properly. The care home were up front from the beginning today in that they could not meet Alan's night time care needs as he would need one-to-one. I never expected them to and have said all along that he would need his own sitters.
To cut a long story short this is it so far.
The care home have prepared a room for him. They will not charge anyone (don't know why they have offered this). Alan can have this room for 2 nights every week for however long it will be needed.
The Social Worker has agreed that Alan can have his own sitters during the night.
Crossroads have checked their policy and they will provide the night time sitters.
The question of night sedation was raised and I said that I felt that I would much prefer Alan to have the care that he needed rather than sedation but if sedation was absolutely necessary then so be it. I am probably wrong but I see it as the fronto temperal lobes of Alan are working very minimally and sedation will mean that the little that is working will be put to sleep. I can only see this leading to heightened confusion. However, the CPN discussed the whole matter fully with the consultant this afternoon and I have agreed to give him 3.5mg of zopiclone tonight so that I can see first-hand what effect this will have on Alan.
I told the care home manager that I would very much like to talk to her about the whole matter and she was very amenable and I will meet her tomorrow before Alan goes there.
I know this is a long post but I just wanted to finish by saying that I managed to have a long, hot soak in the bath tonight whilst Alan rested and that is the most rest I have had for over a week.
Love to you all
I am gobsmacked by your loving and kind responses and it feels like being uplifted somehow by lots and lots of hands
Alan is not in respite tonight because somehow I managed to gain enough wherewithall to know that I could not just abandon him without making sure his needs could be met properly. The care home were up front from the beginning today in that they could not meet Alan's night time care needs as he would need one-to-one. I never expected them to and have said all along that he would need his own sitters.
To cut a long story short this is it so far.
The care home have prepared a room for him. They will not charge anyone (don't know why they have offered this). Alan can have this room for 2 nights every week for however long it will be needed.
The Social Worker has agreed that Alan can have his own sitters during the night.
Crossroads have checked their policy and they will provide the night time sitters.
The question of night sedation was raised and I said that I felt that I would much prefer Alan to have the care that he needed rather than sedation but if sedation was absolutely necessary then so be it. I am probably wrong but I see it as the fronto temperal lobes of Alan are working very minimally and sedation will mean that the little that is working will be put to sleep. I can only see this leading to heightened confusion. However, the CPN discussed the whole matter fully with the consultant this afternoon and I have agreed to give him 3.5mg of zopiclone tonight so that I can see first-hand what effect this will have on Alan.
I told the care home manager that I would very much like to talk to her about the whole matter and she was very amenable and I will meet her tomorrow before Alan goes there.
I know this is a long post but I just wanted to finish by saying that I managed to have a long, hot soak in the bath tonight whilst Alan rested and that is the most rest I have had for over a week.
Love to you all
Helen
Thanks for taking the time to update us, we do appreciate how stretched your time is..
And of course no matter what ever we said and how much we struggle, still we put our loved ones first..
Hope you get some sleep..
Lots of hugs..
Thanks for taking the time to update us, we do appreciate how stretched your time is..
And of course no matter what ever we said and how much we struggle, still we put our loved ones first..
Hope you get some sleep..
Lots of hugs..
hi helen
just popped into tp again to see how you are and have caught up with the difficult news. i am thinking of you both now and pray you get all the help you both need, just when you need it. if you feel a prompting that i could be of help, just shout, and i will if i can (whether now or later).
lots of love nik xxx
just popped into tp again to see how you are and have caught up with the difficult news. i am thinking of you both now and pray you get all the help you both need, just when you need it. if you feel a prompting that i could be of help, just shout, and i will if i can (whether now or later).
lots of love nik xxx
Sorry Helen, to hear of all this but it looks as if the care home is pulling out all the stops for you, I send you my love and lots of hugs, Pauline xxxxx
Good morning Helen,I know I am new to this forum but my thoughts are with you both,kind regards.
