Hi
I moved back home just over a year ago as my 90 year old dad had been diagnosed with stage 4 prostate cancer. Previous to this I was working 200 miles away so it wasn’t practical in an emergency and dad was on his own as mom had gone into residential care. She has lewi body dementia. Dad has since been diagnosed with dementia.
I work part-time.
I am lucky that dad has always been independent and can still dress himself and cook.
I clean the house, do the washing empty bins, take him shopping daily, arrange and take him to all his medical appointments.
I am only 44 and on my own I worry about how I will cope if he needs more help.
I am very reluctant to give up work as I need some financial security for my future.
My only break from home is walking my dog. I have only had 2 weekends away since I came home.
I also have to have my 5 to old neice at least one day on the weekend so have very little time to myself.
My sister accuses me of living off my dad but she wanted me to come home, I have offered to leave and she could move in but she will not do that.
Sometimes I just want some time to myself, dad even decides what we watch on TV all the time on the rare occasions I stand my ground and watch something he complains all the way through it.
I don’t want to resent my dad as we were always very close, and his health deteriating scares me. I would love to spend a week at the coast next summer with my dog but Don’t like planning to far ahead.
Teresa
Hi Theresa
That’s a double dose of hard, both parents with dementia.
I would say, do not give up your job. Giving up work is easy enough, getting back into work is a different matter entirely. Instead, while dad is still able to live at home, and you will know from the experience of Mum that it has a time limit, get outside help in while you are at work, Have you (and he) had the assessments and got a care plan?
Is the niece the child of the sister who asked you to come home and is now ‘b-t—ing’ at you? Perhaps you could tell her that in exchange, she WILL look after Dad while you have your holiday? Fair exchange? After all, if you don’t have a holiday you won’t have the energy to look after your niece?(Sorry if the niece is another sibling’s child. But same applies?)
As for TV etc. I think you will just have to work round that by recording your programmes and watching later or getting a tv in another room? Dad has probably passed the point of being reasonable about that, it’s age and dementia. Earphones and a tablet for you?
It is all so very hard. Remember to look after yourself too.
You need me time too. Can you afford a care home or not?
If dad needs a care home, then it’s DAD’S finances, not yours, that are considered. If dad has under £23,000 in savings then Social Services can pay some, or all of the cost.
Is dad claiming all the benefits he’s entitled to? Attendance Allowance?
If you haven’t done so already, make sure dad gives you Power of Attorney, and goes through his financial paperwork with you, because one day you will need to know all this anyhow, especially given his diagnosis.
Are you aware of NHS Continuing Healthcare?
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Are you aware of NHS Continuing Healthcare?
Just in case it’s needed … the main thread :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
Hi Teresa
Whatever happens, don’t give up work! Have your dad’s care needs been assessed by Social Services? It sounds as if you have moved back in with your dad and so the things you’re currently doing to support him are ‘in lieu of rent’? You are already dong a lot. If / when your dad’s care needs increase it is up Social Services to provide that care, either funded by them or through your dad’s savings if over the threshold. In the short term, you need your own space. Could you fit an armchair and TV in your room? Would respite care be a possibility for your dad? Also - why do you have to babysit your niece for free every weekend?
Jane
If it’s needed , a guide to home care services … what’s available , and who provides them :
I agree with the comment about baby sitting your niece - what are her parents doing for YOU??
There is a view by some that if you don’t have children or a partner you can be the family “Sacrificial Lamb” who is the only one available to care for a sick family member. Is this the view of your family??
We only get the treatment which we are prepared to put up with. You are already doing MORE THAN ENOUGH caring for dad, as well as working. Your weekends should be just that, YOURS!!!
Time to make yourself less available, even if there are tantrums from the spoiled parent. You’ll get all the support we can give you here. Stand your ground and stick up for yourself, because no one else will do it for you!