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Just about to give up... - Carers UK Forum

Just about to give up...

Tell us a bit about yourself here.
I’m new here so apologies if this is long winded - I just need to get it off my chest!!

I’m 27 years and a single mum with a 4 year old little boy. Pre-covid I worked full time in senior sales & marketing management and earned really well. My little boy was in full time nursery and my Mum supported in between me leaving from and coming home from work. Just before the virus hit I had just moved into my new dream home in a beautiful village and was ready to start building my life ...

Then covid hit and like everyone, I was furloughed from my job and lost the equivalent to £20,000 a year overnight - mainly because my income was bulked up by commissions and bonuses. I had my little boy at home and significant bills to pay with a huge decline in income ... so I was already stressed

Fast forward some time, in early November my Dad was rushed to hospital with what we thought was a heart attack. He lived alone and was taken by ambulance from his house) no partner and no other kids). The same day he was discharged with ‘further tests pending’. I couldn’t let him go home, so I brought him back to my home. It’s important to note that my Dad had been suffering with horrendous pain and severe mobility issues for about a year prior to this and had recently recovered from lung cancer ... but we had been told numerous times it was arthritis.

Turns out my Dad has terminal lung cancer with bone metastasis. The day after his discharge I was delivered the news over the phone. His prognosis was 2-6 months. It was a horrendous time... I had my Dad, my son and a home to look after alongside a full time job which I was working from home through the night. He was discharged from hospital twice with no OT, no physio assessment, no equipment, no care package and no insight into his condition. The consultant later called them unsafe discharges. I had to spend weeks on the phone fighting for support, a district nurses referral, a social care referral - I literally had nothing.

After a few weeks he was taken to hospital and spent 6-weeks in hospital and hospice. In that time he caught covid, broke his pelvis and his femur and had a spout of delirium. I still had my little boy at home, was working a full time job and spent every spare second I could dropping and picking things up from the hospital and on the phone.

Fast forward to today ... he is back with me. He’s situated in my lounge and suffers with a serious lack of mobility (can transfer from a bed to a wheelchair and back again), very bad pain and he’s very sleepy. He needs washing, dressing, meals cooking, drinks making, administrative and financial affairs taking care of, appointments transport, bed making, cleaning and chores etc. He also struggles to grasp things so coffee, tea, sugar etc. Is spilt over carpets, walls and beds at least 3-5 times a day. He’s demanding without meaning to be, refuses any help from carers, and is almost always fine when the nurses come ... it’s when they’re not here that the pain gets worse and the expectations get more.

I’ve had to leave my job to care for my Dad - I just couldn’t physically do it anymore. I’m working freelance projects to keep the bills paid and I still have my son at home. I’m trying so hard but there just aren’t enough hours in the day... everything is getting harder and harder to physically and mentally manage.

I feel guilty that my son is not getting the attention he needs, stressed about finding hours in the day to earn an income, physically tired (I’m running on about 4 hours sleep a night), stunted ... like my life has stopped, trapped because I just can’t escape it ... I feel like my house has been taken over. My life is paused. I can’t help but feel terrible for even feeling like this. I hate mess, I hate untidiness ... I spend my life cleaning split coffees, stained bedding, pots and cups... I’m storing things that I don’t have room to store. The phone never stops ringing and people never stop coming in and out of my house to see him ... I’m just exhausted.

Please tell me I’m not a horrible person - I just don’t know how to adapt to this huge change in my life
No, not horrible in the least.

Read the NHS Continuing Healthcare Framework, especially the sections about the checklist assessment and Fast track for the terminally ill.
What is the GP doing???
Insist that he/she sorts out Fast Track for you.
Hi Bethany,
I'm exhausted just reading your post.

I agree with BB, your Dad's GP needs to sort out fast track CHC. This will fund care for your Dad - which he needs. Tell him you need the help if he won't accept that he needs the help. There will still be plenty for you to do, but with carers four times a day - that will certainly help take the pressure off and realise some time to spend with your little boy.

Re spilling drinks - does he have a cup with a lid/spout/big handle to grip etc Then he less likely to drop it and if he does, it won't make such a mess. There are lots of daily living aids out there - an OT could advise, but might just be quicker to look ole yourself.

I realise you need to work so you don't lose the house, but try and make sure you get enough sleep - you will cope much better.

Melly1
Please consider whether now is the time for dad to move into a nursing home, with full time nurses on duty. Alternatively, is there a hospice near you? If so, contact them for advice asap.
Your child deserves to have a happy rested mum. If dad was in a nearby home you could still see him, it's not abandoning him.
In the meantime, Google "Signs of Dying" and read the well written articles from those involved with hospices.
Bowling bun - thank you for your reply! My Dad has already been granted the fast track, however we’re still only getting 1 morning care visit a day and a district nurse 2-3 times a week. Mainly because my Dad refuses the care - he originally had 4 visits a day but he’s so intent on doing things himself that he’s in his wheelchair over straining himself every morning to make sure he’s done by the time they get here... which usually means me being up at 5:30am whilst he scratches my door frames with the chair, and spills most of what he’s trying to clear up! I think he’s in denial about what is happening to him and refuses to accept that he’s no longer able to do things himself. This overstraining results in severe pain in the evening... which I’m left alone to deal with. It really is a never ending cycle! He has been to hospice twice since early November but each time they discharge him after a week or so... I just don’t think he’s at that point yet where he would stay in hospice for end of life. Unfortunately Dad refuses a care home and the lack of visitation at the moment doesn’t fill me with great joy ...

Melly1 - thank you! I’ve ordered a cup with lid so hopefully that will save my bedding and carpets! Much appreciated xx
It's not his house or his choice. It's YOUR home and he has no legal right to stay there.
Please consider your own welfare and that of your child in all this too.
What has happened to dad's own home?
Did he own or rent it?
He can choose who supports him or doesn't when he is in his own home, not yours.
Does he accept the reality of not being able to manage there by himself?
Do you have any brothers and sisters?
Has dad written a will, or sorted out Power of Attorney.
(I supported all four of our parents in their final years. I know far too much about stubborn parents in denial. It took counselling to save me from a breakdown!)
Bowlingbun -

He rented, so whilst he was in hospital the first time round after the multiple unsafe discharges, I cleared the place out and handed back the keys. It was clear the place would never be suitable for him again - bathroom which didn’t facilitate his mobility issues, corridors too narrow for a wheelchair, 2 flights of stairs to get to his flat... so on and so forth. The place was also filthy so it was clear he’d struggled for a long time but not said anything. I just needed the weight of it off my back... at the time I also thought this time on this earth would be much shorter and wanted to clear the flat out and be done with it before he was gone so I didn’t have to face it afterwards.

He does accept that he’s unable to live independently. He wouldn’t be able to manage cleaning, cooking and washing up, laundry etc... he’s also a very anxious person so doesn’t like the idea of being alone in the event of an emergency. On top of that he’s completely unable to manage his own affairs and finances - I’ve done that for him all my life since being young. But he doesn’t accept that he can’t be somewhat independent. He still wants to wash himself, change his own clothes, make his own bed, bring his dishes to the sink etc. The problem is his bones are so riddled with cancer that just the slightest wrong turn or twist could break a bone or cause pain / injury... which I’m then left to pick the pieces up afterwards. He’s broken 4 ribs, his hip and his femur since November.

Parents are both dead, no siblings and no other children. His partner died 8 years ago... just me!

I have power of attorney and will in place just recently.

It is so stressful and heart wrenching xxx
Yes, but he's not doing his bit to help you!
It does sound as if he's always been dependent on others, but he really doesn't have a right to be there.

Tell him that IF he wants to stay with you "as long as possible" then you need him to have the carers, all the time, so that they can help you. You need to do some work so you can afford to stay in your home. You also need to spend some quality time with your child. Is he contributing properly towards the cost of running the home?

I'm afraid you also need to find out about funeral costs. I have twice been involved with arranging a funeral when someone died unexpectedly, mum in law, and then my husband. It is so much easier to investigate and make decisions in advance, as I did for mum when she was obviously failing fast.
Dear Bethany,

I'm so sorry for what's going on in your life. I think the others have given you a lot of advice and tips and I would only be mirroring what they said.

Wishing you happiness and sending your positive vibes. You are not a horrible person at all. We are often tested in life and at times, it does become unbearable. I hope you have some friends you are able to chat to about your situation. They won't be able to do anything but it's good to let it all out.