Caregivers guilt :O(

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Just after some reassurance...

My husband & I are both soul caregivers for my father in law who has Pleural Mesothelioma lung cancer and dementia. There is no treatment for him, its just palliative care.

We visited a care home recently to look into having some respite care one week a month each month. But we both feel so guilty about the thought of putting him in there. But things are very hard at home and it's now causing my husband health issues. I know we need to think about ourselves as well, but its very hard making this decision.

We wouldn't be putting him in there permanently at this stage, but we need a break too so we can look after him the rest of the time.

Having carers in our house is not an option for us, due to lack of space as well as having pets.

Please tell me we are not being unreasonable, or if anyone has any other advice with our predicament.

Thank you 

  • Hi Choompster,

    You and your husband are not being unreasonable at all. Quite the opposite, in fact. You've come to realize what just about all carers eventually realize - if you don't look after yourself, you'll end up in no condition to look after anyone.

    I was my late wifes sole carer for about 7 1/2 years and it was only in the last 18 months that I became willing to accept help. It was literally a case of accept help in caring or have a physical/mental breakdown.

    Most carers are of the opinion that they need to do everything, no-one else knows all the little details, no-one else would provide the same level of care, no-one else could do what what they do. All of those opinions are, mostly, 100% correct. But they don't factor in what the level, quality and quantity of care would become if you were no longer  physically, mentally or emotionally capable of providing it.

    How guilty would you both feel if the level of care you provide degraded because of the build up of the physical, mental and emotional stress that being a carer entails. 

    The disease cannot be avoided.

    The burden you place on yourselves can.

    You're not letting anyone down by protecting yourselves, but you put everyone at risk by not.

    Be as kind to yourselves as you are being to your dad.

    Hope this helps.

    Peace :-)

    Regardless of yesterday, the sun will still rise tomorrow.
    As will you.

    The day after your carers journey ends, the sun will still rise.
    As will you.
  • Hi Choompster, I cannot really add much to, "Panic's", reply, only to ask, have you considered your local Hospice for respite care for your father in law, ours is wonderful. best wishes.

    Eddie

  • Thank you so so much for your kind words you are absolutly right, it is physical, mental and emotional stress . We do need to protect ourselves as well so we are useful for my FIL when he needs us. You've set our minds to rest a little. Im sorry this disease took your wife from you. Sob

  • Hi eddiel, we are looking at respite care. One week per month, we would have to self fund as he hasn't been assesed yet for any help with funding. But time is not on our hands and its a lot of money but we will do whatever we can to make it happen. Thank you for your reply :O)

  • Hi Choompster, your dad's terminal diagnosis, entitles, if available, him to free hospice/palliative care, funded by the NHS, and you and your husband can be assessed by your local council, to see if you qualify for free respite care, I know how difficult it is caring for a loved one, I cared for my mum who had terminal lung cancer, and hope you find the support you need, and please don't think the hospice is for those of us nearing the end, I have been going to mine for15 months, and hope to continue going for some time yet. my best wishes to you all.

    Eddie xx

  • Thank you we have completed an online form with the council today for my FIL to be assesed. Im hoping this leads to something, I will call them next week to ensure its been completed correctly etc. They dont make things easy to understand sadly. I feel respite care whereever it is given is a helping hand, i dont look at it as nearing the end. I hope you continue to get the support you require as well xxxx Ps i should add I've been told by a few professionals prior to today that most of his free care he would only be entitled to when he is classed as only having 3 months to live ! At the moment his prognoses is 6 to 12 months but could be less or more..nobody will know for sure. x

  • I became the sole care giver for my mother, she went into care, my sister and brother both died. Mother had dementia and was lets just say challenging in her personality too. I had had ywars and years of trying to care for her and have a career, and be a husband and father. Even when she went in the care home it was me who spent 16 hoyrs in a&e every time she had a fall, or had a water infection etc etc. I very nearly had a complete break down.

    Do look after your own health, mental and physical or you have nothing left to give anyway. I wish you well

  • Thank you for your message and kind words. I'm sorry you've been through so much trauma. How heartbreaking for you. I hope you are doing OK now xxx

  • This was some time ago thanks... now i have a daily struggle with my wife's stage 4 cancer. I think because i was do traumatised by mother it is very hard with my wife, but thats life... it is what iHeart is Heart

  • Sadly the path is chosen for us and all we can do is our best. Wishing you and your wife all the best x