How much is enough?

I have become full time (live in) carer to my 90 year old father since July. He had been living independently up until then, but his (physical and mental) health deteriorated during lockdown and he had been having many falls. (He also has prostate cancer, but says he is not in pain, it is slowly spreading.)
I have taken on the job without complaint and always tried my best for him, but sadly he has never been good at complimenting me, but readily says others are better!
He has mobility, sight and hearing issues, all of which I am trying to address, get some improvement (exercise classes, cateract operation, hearing aid), but his outlook on life (in general) has always been negative. I.e there is always a reason for him not to do X or Y. Instead he seeks solace daily in a bottle of whisky… Even though I try to keep him on a limited ration… (but I am fighting a losing battle.)
His other main gripe is his incontinence. Again, I do my best to make him comfortable, assisting him through the day if he needs it and at bed time, but he is not happy….
I am happy attending to his daily needs (cooking, washing, incontinence management, hospital/other appointments and arranging whatever free support for him I can…) BUT… I know I will go mad if I listen to his negative stuff day in day out… Currently I survive by going to my room when I have had enough. He has good mental capacity and has commented to others that I leave him to his own devices often through the day, but they also know how negative he can be.
He cannot read at present so I got him a cassette player with audio tapes, but is even bored of that now…
I am going to take him to his first seated exercise class tomorrow, but he is finding reasons that he will not like it…
We go out in the car for short local trips, but he is hot and cold about doing this.

My question is, how much time do I spend with him and be guilt free and make sure I am looking after my own well being too.
We don’t really seem to have found the balance yet… And I am getting burnout very quickly.

I have tried to talk to him about the above and he sometimes calms down for a day or two, then is back to type… Even his good friends no longer come round as they cannot bear his negativity which seems to have got worse in recent months.

(NB He raised me on his own from a small child as my mother left us, so I feel I should return the favour now, we also had a good relationship in the past, but there was a huge gap as he got together with a woman who drove us apart, although she has been deceased for 16 years now, but she is ‘still there’ if you know what I mean… I do not feel I can say anything bad about her, as it is in the past…)
I am an only child, but at least I have good friends for support and a morning wake up carer we pay and a family friend who takes him out twice a week. But it seems he expects me to sit and listen to his negative talk morning to night, when he can barely hear me with his hearing issues… (I am praying the hearing aids will work that are due in just another week!)

Sorry if I am rambling now… It has been another long day….

PS My father didn’t ask me to move in with him/do these things, but it was obvious he was going to pass away from neglect if I didn’t. (I was stuck abroad during lockdown and I think I got here just in time.) But he feels he can live alone, when everyone knows he would only last a few more months due to falls/other issues. (My long term partner also left me and I was going to be homeless, so it all seemed to fit into place, from my perspective at least.)

Hi Wendy,

Why not flip the question round and ask, “How much time do I need to myself to stay sane and have wellbeing?”

As long as your Father is fed, watered, clean and dry and has a little company each day that is sufficient.

Don’t forget that before he started to deteriorate and you moved in he was used to his own company.

This is the second time I have recommended this book today, but you may benefit from reading The Selfish Pig’s Guide to Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone by Hugh Marriott .

Melly1

Thank you Melli,
That is just what I wanted to hear! I know I am not being selfish, but I have to be safe and sane myself to be able to support my father.
Yes, he managed on his own before; although sadly covid has changed much in his life and I am trying to help him (and me) navigate a ‘new world’ … (Sadly many of his friends from his social circle are all vulnerable and shielding and he is no longer able to see them.) So I am doing my best to get him out to ‘do’ rather than linger and fester at home!

THANK YOU so much for the pointer to the above book, I downloaded it immediately to my kindle and was reading it nodding my head at four am!

Hello Wendy.my name is Ian 54 I look after dad 93(full time carer(friends/partner have drifted away now(had plans to sort social life out(before Covid 19).feel so so alone at times.i understand presisly how you feel(would dread any visitors calling down to the smell of house(you know what I mean.be strong Wendy you will plenty of support on here Ian x

Sorry to hear you are doing things alone Ian? I am ‘lucky’ in the fact he has had a regular (once a week) cleaner for past 5 years, otherwise things would have been terrible! (Although he was in denial about his incontinence and it has taken the past three months to get him to go along with even basic management of this!!! We are still having issues though… but not sure what can be done, other than keep banging on the door of occupational therapy and the like!)

I hope you get a bit of time to yourself now and again? Even if for an hour a day when your father is asleep???

I have been in touch with my local MIND, who are there to support carers and people being cared for… I am hoping to speak
with them again as they were so supportive on my first call.

Stay strong too… and thanks for the message.
W

Hi Wendy. Officially it is 35 hours a week or more. That is the number of hours you are expected to do in order to claim ‘Carer’s Allowance’ . However, I know that many people on here do a lot more than 35 hours.

Also, my dad was also a heavy drinker (had been for years!) and lived to be 91 years. However, he also fell over lots of times and they found out that the problem was he was very low in some vitamins. Apparently if you’re a very heavy drinker for many years your body is depleted of essential vitamins especially Thiamine (vitamin B1). So it might be worth mentioning this to his doctor.

Thanks Karen, this is worth noting and following up, (although I struggle with his GP to get anything done!!!) He has a full bloods though next week for his PSA etc/Prostate telephone consult, maybe it will be included in that…
Out of interest… (as you have been there!) did the drinking increase the incontinence at all? (As in stools, not wee as he has no control over the latter since his op six years ago.)… I am sad to say he has had three ‘accidents’ this week and it is wearing me down as I am not very good with that end of things… (The wee I can just about cope with.)
PS for personal reasons my father does not want me to claim Carers Allowance. I am abiding by his request for my own reasons too. At least we got him the higher Attendance Allowance which he is now getting no worries.

How much is enough before his negativity and potential alcoholism affects your physical and mental health whereby nipping off to a room for respite is not enough?

You need to be at your best to cope.

As for moving in with him to prevent homelessness, completely understandable but perhaps you could look into your independent living options. Perhaps Shelter could advise?

Is a weekly cleaner, morning paid carer and twice weekly social visit enough for him, and more importantly, for you? That doesn’t sound more than a maximum of 2 hours per day dedicated support across a week outside of your commitment for a person with a very wide range of health needs.

Joanne, thanks for your comments. All duly noted. I am trying to walk a fine line between not being homeless and caring for my father.
There are several issues why I am financially dependent on him, mainly that I have been living abroad for the past 20 years and although a born, British Citizen I am not entitled to any state help for at least six months. I have enquired with the various Veterans services for help; (they actually paid to repatriate my stuff back from Spain, otherwise it would have all been lost), but the best they can offer is to find me ‘cheap’ accommodation at £500 pcm and as I say, I am not eligible for any state support for at least six months. (And I have not one cent of my own as I was housekeeper for my ex for 13 years… and did not work at a paid job… partly due to my own health issues.)
I also wish to retain my EU residency as I intend to return as soon as my father is no longer here. (And I am financially stable.) I have to think very carefully about rescinding due to Brexit!!! (It would cost £30,000 if I had to re-apply as they are changing the rules for Brits!!)
Re extra carers/respite for me, I am asking someone if they will do a (paid) five night stay now and again and also I am looking at a Sat/Sun night off… But it will all come down to finances and getting my father to agree to pay for it. (He can afford it but he gets funny about money.)