I am a carer to my 32 year old disabled daughter. Gradually over time the respite that we had has gone to be replaced by Direct Payments so we have the ‘freedom’ to spend the money as we wish to coincide with what we need. In reality we have a large DP bank balance which is spent on daytime activities for my daughter but what I really need is overnight respite. My daughter has always had an extremely strong attachment to me, never wanted to be away from me and overtime it has become easier to turn down opportunities than deal with the fall out of her utter emotional collapse of tears, threats, wakeful nights etc. I understand as she needs someone for all her personal needs, social needs etc. Her Dad is hands on in so far as he doesn’t mind cooking, shopping or hoovering etc so I can spend time with my daughter but sometimes what I want is for him to make more of an effort to engage with her. He does it by fixing her wheelchair or or helping
with technical stuff. We never go away as a family anymore so I take my daughter away on holidays while he has weekends away with his friends four times a year. This has always been the case and with the passage of time this arrangement suits me as there is little common ground between us now and when my daughter and I go away we do have a good time BUT…. I still need a break and my husband agrees this too. We have found a good PA to work with my daughter so the support is there but my daughter makes it so hard because I can see how distressed she is, saying what if she dies while I take a break, I should be ashamed for wanting to abandon her. This has come about because I intend to go away for a break to a family member for 2 nights when my husband returns from his. I have booked the PA, planned activities but for the previous couple of days before I go she is an absolute tangle of tears, nerves etc. I know lots of carers don’t get a chance to take a break at all so I am lucky in that respect but sometimes I just find it so hard and then immediately feel bad for moaning. Just having a miserable bank holiday and wondering what the future holds.
Hi Diane,
Just sending cyber support to you.
Please don’t cave in - do stick to the plan and have your brief break away - your daughter will survive and hopefully enjoy the activities you have planned for her.
Maybe next time, don’t plan to go straight after her Dad gets back - then at least you will have some support in the lead up to you going away.
Hi ive just read your post and you are doing the best you can and these breaks are important to help you keep your strength for your daughter. As a carer myself for my mum i have difficulty with this but it took a little breakdown and a back flare up so start the journey of self luv. We all feel guilty as carers as the ones we care for are first and we feel we cant be honest with our struggles and hide your feelings because you don’t want to feel like you are letting them down.
Thank you Melly & Sparkle. I am just having a bad day. My last overnight break was a year ago & I usually try to get a two night break once a year. It’s not much but when I return from my break I feel set up for several weeks. In the last 4 years I’ve had 6 nights away in total so it’s not a lot to ask.
You are right Melly, the timing isn’t great but if not taken now I would have had to wait till August and then it would not have been so certain.
You are right too Sparkle as my daughter is first and foremost in my thoughts always so we are rarely separate and this is what makes it hard for her. It is awful that in your case it was your illness that changed things but we just plod on don’t we because we know if we buckle that is at the expense of those we care for and other family members, it’s passing a heavy responsibility on someone else. Thank you both for your kind words.