I just wondered if anyone is caring as an only child or with no family support?
I have now been caring for Dad and living with him for nearly 10 months, having left my home in Wales to be here with him. I have got a package of care for him and he now has a carer 4 x a day (thankfully). He is meant to have 2 carers 4 x a day but the funding hasnt been paid to the care company.
Although I do not now have the responsibility of medication and changing incontinence pants etc, I am supporting his emotional wellbeing, dealing with service (sometimes a thankless task) and missing home terribly.
I often feel angry at being an only child. At being the only person sitting in this house which I moved out of 33 years ago, at being the only one clearing out the 3 decades of hoarding, at being expected by the care company to sort out the funding, or being told Dad isnt a priority for hospice or care home (which he is now saying he wants to go in) because he isnt in pain. Of course, I understand he isnt in pain physically but his anxiety is so high about something happening to him that his breathing is affected, he is so very frail and can hardly speak now due to breathing difficulties…but apparently that isnt a priority for anyone. I know if I leave him and go home he will deteriorate and become a priority. Am I really expected to be in that position of being the reason he is more poorly.
My friends are a great support and have come up to help clear things and brought dinner up to me, but Im resentful that I dont have consistent regular support from someone that equally cares about Dad, who can pick up the phone to social services.
My brothers were so useless, never lifted a finger until inheritance was being dished out.
If dad needs care that is not being provided, then get firm with Social Services. Assessed needs MUST be provided. Complain via the LA website. Keep copies of all emails. Tell them to communicate by email, not phone.
Has your fathers breathing been diagnosed? does he have COPD or heart disease?
Is it debilitating him? i.e is he unable to breathe for bathing and dressing himself? is he unable to go into the kitchen to make a drink/snack due to shortness of breath? Is that causing pain?
It’s not always easy having to deal with everything alone, but you have full autonomy! If you had siblings they might not care, might leave you to decide or might not be contactable.
But you are here now with many members who can support or offer ideas, advice and suggestions.
My mothers GP said she qualifies for a nursing home because her lungs are so bad that she gets breathless just brushing her hair, she cannot change her clothes without being near state of collapse.
She is nearly blind and her hands aren’t good. She has the after effects of a few minor strokes. She is unable to look after herself. She isn’t in pain because she has pain killers to manage her pains.
The pain issue sounds like someone pulling the wool over your eyes.
Can you get your dad to the GP or the GP to come and do a check up and review on your dad and discuss with the GP your dads need for a home? Or if the district nurse visits you can ask her about it. My mother had been convalescing at home from pneumonia and the district nurse took me aside and wasn’t happy with how she was and wanted her in a home, I said she’s just had pneumonia and I am here caring etc. The next day the Dr was here asking mother if she wanted to be in a home, so I put him right. Recently he said she qualifies for a place in a nursing home. Your GP can be instrumental.
There is no guarantee that other siblings will help or be able or still be alive to help, such is the lottery of life. Better to be lone and not upset at the lack of care from other siblings or find yourself alone because your only sibling has died.
My identical twin and I were going to do the end of life care at home together, we did a lot of clearing out of decades of hoarding which we found very liberating to do, try to enjoy it as a liberating decluttering exercise, much as it may have you thinking you will end up in a straightjacket if you have to fill another bag or box.
My twin had a sudden death 2. 5 years ago and I am insanely angry at being alone with it all. I had to bring all her belongings to the family home and sort them out and remove them from the family home. She has things in the loft which can stay there for now.
Mother has decided she wants her end of life care in hospital so I don’t have to cope with it alone and I feel like I have failed my twin but I know it is the right decision.
Get a check up with your dad arranged and see if you can circumvent the system via the doctor to get your dad into a home. Then you can have a more positive spin on things and your dad will be placed in home.
Cherish the time you have together, you haven’t got negative issues with other siblings. See the sorting out as looking out as a positive thing for him.
Do you have POA? Power of Attonery - for finance and one for health and welfare?
You can do it yourself on the government website.
There is a section asking if you want to inform anyone about it - don’t do that, it’s not necessary and makes it take longer to process.
Then you can do the banking or financial management on his behalf if he can’t get to the bank etc.
If a time comes your dad doesn’t have the capacity to make decisions, you step in as POA and act in his best interests to make decisions for him.
Next of kin, daughter, stand for nothing when it comes down to it, you need POA, without that the authorities can do whatever they want. If you have POA you can insist on a home near you if your father doesn’t have capacity, if you don’t have POA you don’t have any say in the matter. As your dad has full capacity it is his choice.
Without POA you still have the Human Rights Act to help you. Look at the Continuing Healthcare for details. Apply even if you don’t have CHC. Hampshire wanted to send mum to one home that would take me hours to visit, nearly in Portsmouth. Their computer measured distance in a straight line, across Southampton Water. I do not have an amphibious car!
In the end she went to a home at the bottom of my road.
Hi, just wanted to say you are not alone. My husband is the only child of his mum. She is a widow, her extended family lives 1000 miles away and they would visit every 3 years or so. I’m willing to help a few times a week but MIL does not really accept me. Strong, unhealthy ties with her son. My OH is struggling. This is a very difficult situation.
Bear with us here, and take care of yourself as much as possible.
Just echoing what Bun said about autonomy. I live 30-45 mins from my Dad (now in a nursing home) and I have 2 young teenage children with special needs. My brother lives 10 minutes away, doesn’t work, has no dependents. He does NOTHING. I’ve cleared out Dad’s house, labelled everything he needed to take with him, cleaned and sorted the house to put it on the market etc all while spending hours each day with Dad who’s been in hospital for most of the last 3 months. He went through a pile of clothes with dad at the beginning encouraging him to keep everything (4 pairs of braces when he’s never worn one, 7 pairs of going out shoes, a leather waistcoat etc…) and then left it in a pile on the floor. My husband keeps telling me to leave him totally out of it - don’t ask him to do anything and then he can’t let you down. But it’s so bloody unfair!!
Aside from the sibling stuff, I would make a phone call to ASS (ever realised the initials were so on point…) and tell them you are at breaking point and you need either more help (including the help that was promised) or he needs to go into care. How do you both feel about him going into full time care? Would you go back to Wales & find somewhere there for him? Perhaps take a look at which things would be most helpful to you and cement that in. If it’s caring for him in Wales with the right sort of help or the right help here or full time care in either location etc. Decide what you need and tell them it’s this or you’ll not be able to cope and you need to walk away. It also sounds like you need a Needs Assessment too. It shouldn’t be like this but all we can do is work with it. Good luck.
Sorry to burst your bubble Dionne, I am one of six and everything seems to have dropped onto me so it’s no different to being an only child. I’m the youngest and I think the others play on the fact that I am the probably the weakest and most emotionally unstable! Granted one may have learning difficulties and one has long term health issues, the other three are absolutely ******** useless. They help with NOTHING, absolutely NOTHING. There’s one who is almost 50 who still throws girly strops if the menu for the day is not something he likes. I give up!
I’m glad you have friends who are supportive. I wish I had some. I can never open up about the stuff at home as most of them just say “grow a pair” or “it will be fine soon”.
Rant and vent on here as that’s the only thing that keeps me ticking these days.
I sometimes care for my mother and sister. I used to see a therapist but she moved out of area three years ago. I find keeping busy and active helps me. Try not to stress and also find things to do etc as well. Carers UK run a variety of interesting share and learn activities. You can look into them. Alternatively ask what the local library can do in order to stimulate you. Another good place to try is the church, often times they plan and have activities for all.
Hello Dionne, I am one of 3 yet everything was left to me despite me living further away than both of the others and also having a special needs daughter to cope with. It was very hard and I look back now and wonder how I did what I did for 14 years and then another 4 years when Mum moved to a care home and I visited or took her out every other day.
In your case the only positive thing I can see is that you can make decisions about care etc without involving siblings.
Hello there Dionne,
Although my situation is a bit different from yours, I too am an only child technically. I do have half siblings but they are my dad’s kids and it is mum who I care for and live with. We have loads of cousins that used to visit often but for some unknown reason they don’t bother with us anymore. I remember my second cousin virtually begged my mum never to move house because he loves us being here so he could visit whenever he wanted to. He practically lived with us and acted as my play mate when we were 10 to 14 years old but for some reason he started visiting less and less until one day he stopped altogether. Same with his dad and brother who never really visited after we were 16. His dad, mum’s first cousin would visit every now and then even when his sons didn’t bother with us but since my grandad (mum’s dad) died he stopped visiting until mum’s heart attack when it was him who I contacted when she passed out. I was scared mum would die because I felt I had nobody and I’d never been on my own before. This all happened when I was 24 and they haven’t bothered to ask about or check on me and mum to see if we needed any help. I’ve been mum’s carer for a decade and had been 3 or 4 more years before she had the heart attack. I had to now act as nurse as well as carer after her heart attack with no help from social services or the medical profession. Our family deserted us again and now it’s up to me to do everything, not that they were much help before.
Unlike you though I don’t have any local friends to help and like you I am dealing with a cluttered house. Though mum doesn’t identify as a hoarder. She keeps saying that all the junk in the house is because of me but that’s not true. Yes, I have kept a lot of my childhood stuff and toys it now only takes up one room. The rest of the rooms are taken up with loads of filing papers, one room loads of boxes and packaging that mum wanted to keep because she thought it would be useful one day, another room full of stuff for making things and thus she’s keep wrapping paper, xmas cracker parts, small food containers, boxes and other parts from food packaging, and tubs as well as craft stuff. Another 3 rooms are filled with christmas decorations that she has collected over the years because she is crazy about christmas and unlike the other stuff that we have sorted through and given to charities or sold or thrown away, she absolutely will NOT get rid of ANY of the christmas stuff even if it is broken (I have taken the liverty of doing it, getting rid of stuff, behind her back now because enough is enough)
Another room is filled with furniture that we didn’t have the room for because we already had same furniture, such as a set of chairs for the table, she bought another set but nowhere to put the old set which are antiques and she didn’t want to get rid of plus they belong to my dad technically. A settee and chair suite that we didn’t have room for because we already had a bunch of junk in that room from when grandad died and we had to take all his stuff home. We gave a lot to charity but stuff have a fair amount of his stuff.
There’s a lot mum won’t get rid of even though she keeps pestering me to sort out, tidy and clean the house. I keep telling her that I can’t do that if she won’t let me get rid of some stuff but she insists I can work with all the junk to neaten it up without getting rid of it… impossible! She just tells me to put everything in boxes and stack them up… it’s already been done and still looks a mess and takes up a lot of space!
Anyway enough about me. I gave you enough info about my situation so that you can tell me how yours differs and maybe we could compare! Tell me more about your hoarding story, or your dad’s!
I have been following your thread. I just wanted to mention about how you always said that your friends don’t fully understand your situation because they’re not carers and don’t know what you go through. I have to say that my friends (who are all just online friends) are not carers either but after telling them my story they completely understand how it can be hard and they sympathise and tell me they too would struggle in my position.
They don’t tell me to just grow a pair.
Just because they aren’t carers like us is no excuse for them to be that ignorant and say what they say to you or change the subject. They sound like awful friends if I’m honest!
Anyone can sympathise with someone’s situation and understand what it must be like without experiencing it. Even if I wasn’t a carer and I read your situation or hear my own story I’d be like dear god I’d wanna run for the hills too.