I am an newbie -5 months as a 24/7 carer living with the caree but I am learning, particularly through this great forum .
My caree is wife (aged 84) and either does not truly understand , or chooses not to understand the concepts of “caring” ,
“support” and “respite” . Raise the subjects and you will get " a caree is surely entitled to support and respite ". I also face "strangers in the house over my dead body " syndrome . I have had some rest, admittedly, but no “respite” as defined by Carers UK since the start.
Two professionals have advised this approach : 'I am taking next Thursday off so you had better arrange for someone to come in " . Confession: I simply could not do this to a spouse of five decades and I told her I would never go out for a half day/ full day without ensuring a competent person was lined up to take my place , but continuing to stress that I had been warned by people who know that I was heading for a crackup unless I had more support and regular breaks. None of this was actually acknowledged verbally.
So to my questions to fellow-carers: do you think your caree is entitled to blackball anything suggested in these areas and to insist on final approval and has anyone actually taken the approach suggested by two professionals (see above ) ?
Finally: has anyone asked someone from Social Services or involved with a local carers organisation to see the caree and explain to him/her (assuming he/she is compos mentis ) the dangers to a carer’s mental or physical health without decent support and respite and, if so, did it meet with success ?
HI Joes,
a lot of carees, especially elderly ones do not want outside help or respite and only want their main carer. They often do not appreciate what it is like to care - as they cannot see past their own situation. You are right though, you do need time off.
What are your wife’s care needs? Can she be left alone for short periods?
Melly1
I will assume you wife can still read. Then get her to read information about your role. Inform her that when you become ill. And let me tell you. You will - she will have to except people in to the family home. So it important that she listens and starts to accept you have need too.
I have to stay it’s very much the older generational attitude. Through thick and thin till death do we part. Those days have well and truly gone. Today’s younger carers take all the respite they can get.
https://www.caregiver.org/caregiving-spouse-–-social-emotional-and-physical-issues
You are not alone! We are here to support you. Although we can’t be in your shoes or you home. We here understand what is happening now and what the future holds.
Speak with your G,P, It’s possible he or a practice nurse could make a visit.
Hi Joes,
I actually would agree with you that it ends up being the Caree that seems to have to provide ‘permission’ for the Carer to have some respite in a lot of cases. It’s that horrible feeling of knowing that the Caree will be miserable/angry/upset/resentful if you take some time for yourself (which may end up backfiring upon your return to the house in the form of an argument). Then comes the guilt for being ‘so selfish’ to need time for yourself. And so the cycle continues…
If you manage to find a way around this, definitely share it with everyone because I don’t think anyone has found the magic solution to this. I think that it boils down to this: either you (Carer) suffers through and continues doing what you’re doing or the Caree ‘suffers’ because their main (and most knowledgeable of their condition!) Carer ‘abandons’ them for X amount of time every so often.
SunnyDisposition- I think you’re generalising, regarding your statement about ‘younger carers take all the respite they can get’. I am 26 and have been looking after my Caree for 15 months. I can count on one hand the amount of days I’ve ‘had off’ in that time (even now, since my Caree has moved into a nursing home because I ‘do things the right way’ and ‘they never do it right’). The reality is that I could most certainly leave my Caree to it- I could go away for a week and just put everything out of my mind. I don’t because I can’t bear the thought of my Caree suffering with (in my opinion) inadequate care whilst I am away.
And so the predicament loops and loops.
I speak from years of experience of previously working/volunteering with young carers. This includes children and teenagers. We tend to get them as early as possible to understand. Take and ask for all the help you can get.
Don’t carry on alone. Keeping your own health in check is vital!!
I replied to you all over a week ago but it failed to cross the finishing line . Have asked Carers UK to see if they can it and , if not, `will try to remember what i wrote and send another.