I am completely stuck inbetween caring for two adults and I cannot be in two places at once.
My daughter is 20 and has autism and other needs. She attends college and works part time but needs quite a bit of support still.
She hates being left in the house alone, she panics leaving the house if I am not there (she has left things on, taps running etc in the past!) she needs supervision to cook, attend appointments and take meds etc.
My Dad died last year leaving my Mum alone. He was the driver.
My Mum is in her 70s, nearly blind, cannot walk far and has medical issues so needs support too.
The problem is meeting my Mums needs affects meeting my daughters needs.
I had to take my Mum to an appointment last week which meant me leaving my daughter home as she had to leave for college during that time and my daughter is angry about being left.
My Mum has two lots of day surgery coming up and will need someone to take her but i cannot leave my daughter for that length to do so!
She did ring and ask for ambulance transport recently for an appointment but they said they didn’t think she would qualify as she is not considered housebound.They told her to ring back the next day but she didn’t as she’s decided she won’t qualify.
She does use ring and ride but they won’t go that far, they have also been very unreliable recently with us beinh unable to book and left her on one occasion…
To make things worse i cannot drive either so the surgery means two buses to my Mums house a bus back to the station, an hour bus to the hospital, 3 hours or so at the hospital and then the same in reverse, theres no way i can leave my daughter that long and she is already making comments about how im pushing her needs aside.
My Mum cannot get in a normal taxi and it would be very expensive anyway.
I live in Leicestershire. My husband is 83 and I do not drive. He is very deaf and has osteoarthritus. Public transport would not be a possibility. We have tried to get hospital transport, but because we have a private pension, we have not been able to the last few years . Even before then, it was frankly a huge fight. But we have something called ‘Community Transport’ in this area. The volunteers do not work Saturdays or after 4pm but they are very good and they do wait for up to an hour but in practice maybe a little longer - in my area if we tell the receptionist we have community transport waiting, we are usually seen quickly. They charge but it is less than half of what a commercial taxi would charge. The volunteers are frankly lovely but if you have something similar in this area, you do need to book well in advance.
I hope this helps? It is a nightmare for you right now and you do need to get some support. The other option might be to contact your local Carers - google Carers support and your area, and see if they have any suggestions .
My son has severe learning difficulties. I know this sounds hard, but if your daughter doesn’t move out soon, she is going to be left with you until you die. My son had to go to boarding school, then college, then residential care after I was very ill. Friends were horrified, how could you put M in a home?! The residential home was lovely, until The Regard Partnership took after. Total nightmare. The council then moved him into his own flat, and that’s very good in some ways, not in others. Ideally, your daughter needs to move into supported living with some other girls she knows, staffed 24/7. If mum needs you to support her, then mum has to pay your taxi fares. That is the sort of thing Attendance Allowance is supposed to be for, the additional costs of disability. Mum needs someone other than you running around her. Has she had a recent Needs Assessment, and you, a Carers Assessment. What would happen to mum or daughter when you became ill? Amongst their demands, when do you get to do what you want?
Hi M_2211. You have quite a tough situation there, but there is a simple (probably unpalatable) answer.
Step back. You can’t do it all - so don’t.
Your Mum needs to be assessed for her care needs, your daughter the same. And you need a Carers Assessment that looks at the situation you’re in.
Before that, though, you need to decide what you can do, and what you’re actually willing to do. Because you have a choice, and it’s important for you to make that choice so you can make it part of care planning.
As things are at the moment, any needs assessment will say “carer does this, so the needs are met.” And it all gets dumped onto you. You cannot afford to let that happen.
These links are to the main pages: there are fact sheets for the various nations, so pick whichever one covers you. They are definitely worth a read before you make any decisions, but I strongly suggest you cut back on the levels of support you’re giving to both, or you’re going to need care yourself. If you’re lucky.
Your daughter has same problems as mine and best thing that ever happened was when she met someone and they eventually got a HA flat. We doubted she would ever settle but they have so even though both have problems (and he drives me crazy sometimes) they muddle through together. They still need me for paying bills, arranging appointments, taking them on holiday etc but she loves her independence, as do I!!
Thank you, supported living is something I have spoken about numerous times, not because I want rid of her but because I want her to learn skills and be safe for when I am not here because I do feel like this is exactly what is going to happen!
In regards to my Mum she has had an assessment for some household equipment years ago (bath chair/toilet chair etc) but she is a nightmare for saying she will use services ‘when she needs them’ which in relality was years ago but she is too stubborn and just laughs and says she knows when I bring it up.and tell her she needs to tell them but doesn’t.
Heya. I had a care needs assessment done nearly six years ago. This is needed in order to start the entire process. Good luck as well. My entire assessment focused on my own disabilities.
You can ring up the local council office in the morning to find out more. I always tell all people who are new to carer land to make brief summary notes. It really does help. There are so many free resources that are readily available in print and online worth reading.
Narrow down your results.
Read far beyond the lines to discover any hidden details. Visit the company offices to meet staff. Attend events to speak to a few different paying clients. Print off some old articles about the care company in question as well. Research is key. Ask to see a copy of their DBS check in addition and obtain at least two fairly recent references. Discuss goals.
Interview staff carefully. strong text
That’s a shame. I started caring for my mum about the same time as my son was born in 1979, then dad got prostate cancer, and my in laws were also old and disabled. Sadly my husband died of a heart attack when only 58. Not long before he died, he said it would have been much better if we’d lived further away from the parents so they would have had no option but to accept help from Social Services. In the end we nicknamed ourselves “The Thunderbirds” ready to drop everything at a moment’s notice! One New Year’s Eve mum had bowel issues, and her carer said I HAD TO go over there. She was very miffed when I said I couldn’t as I’d just been drinking wine. New Year’s Day was our wedding anniversary, so a sad time for me. Son had just gone back to his flat, so just for once I took time out and a glass of wine!! She even tried to get me to break the drink drive laws!!
When my son was 16, I was very ill, 14 courses of antibiotices in 12 months, finally told Social Services he MUST move out because I was utterly exhausted. He became a boarder at his school,only 15 miles away, and he came home every second or third weekend. The school were against this, said he couldn’t adjust to this, but in fact he coped brilliantly. Living in the house during the week and the caravan at the weekend was normal for him, as we own some steam engines, and were “weekend gypsies”. Later he went to Fairfield Opportunity Farm, now College, at Warminster. Here, he learned to be independent, and thrived. Social workers just don’t understand how valuable an experience like this is. My health improved hugely, but then mum had an operation that went wrong and I was carer for her, for many years. Your mum and mine had a lot in common! Mine only agreed to having carers after I’d had major cancer surgery and she nearly had her leg amputated, all within a month of each other. Suddenly faced with accepting carers or residential care, mum chose carers, and actually enjoyed the female company! Have you thought of having counselling? On the verge of a breakdown, it was arranged for me via my carers assessment, and honestly, it was life changing. Learning that I was still behaving like an obedient child as far as mum was concerned. As an adult, disabled myself, it WAS OK to say “No”.
Can I ask what the carers assessment actually does please? Do you have an appointment with them?
Ive had the same again today, my Mum has just rang to say she has a pre op cancellation opportunity tomorrow which ironically I could have done if i had took daughter with me as she is off tomorrow but shes gone for one at 3pm in a couple of weeks an hour away from daughters colllege (plus rush hour and school traffic! ) and daughter finishes at 4pm, not likely to get back to my house until nearly 7pm due to bus times for me. So again im forced between my Mum being annoyed with me because she cannot manage two buses alone each way and getting the ‘i will just have to manage’ guilt and my daughter being annoyed with me.
The solution is simple. Tell mum to get a taxi. Mum should be well aware that
You have a daughter
Your daughter goes to college.
Do NOT feel guilty about this, it’s mum that should be feeling guilty. Maybe point out that many old people don’t have a son or a daughter at all, some have children the other side of the world. They have no option but to manage, and she should work out a way of doing things without constantly calling you. I know this sounds tough. I once had a mum who never considered me. She even moaned that her husband had died at 78 and she felt short changed. I told her crossly that she must never EVER say that again to me. My husband had died at 58!! This just goes to show how self centred elderly people can be. The more you do, the more they want.
My MIL thinks the world should revolve around her and agrees to appointments and arrangements without checking out if things are ok for us.
I have tried to do some things for myself recently and two out of three things needed to be cancelled as she had set up either a health appointment or phone call when I was due to attend my class.
If anyone is ill she has no sympathy and sees it in terms of the impact on her, the worry about my heart problem or her son’s aneurism has made her unwell!!
Please stop trying to please everybody, you can’t.
Take BB’s advice and tell your mum to make arrangements for herself.
I never thought i would be in a situation where I’d be referring myself for online therapy due to feeling at breaking point- and yet here I am.
I’m hoping to gain the tools to say NO, make boundaries and take care of myself more.
Try and do that now for your own sake.
I had counselling, it helped hugely. Best of all was dealing with mum’s endless demands. Saying “You asked me to do this so I’m going to finish it before taking on anything else” and then doing it at my pace. Also, saying “I’m sorry, I can’t, I’m busy that day”. You do NOT have to add a “because…” You are an adult, it is your life, your choice what you do that day". Mum may be your mum but you are not a little girl who has to do what mum says!!! You have your own family and responsibilities and they have to come first, not mum. The counsellor told me to work out my priorities. My disabled son couldn’t speak up for himself, so he had to come first. Mum had plenty of money and could speak up for herself and get someone other than me to do whatever she wanted. The counsellor told me to tell mum this, she didn’t like not being “top dog” but she accepted that my son needed me more than she did. If you look at both these examples you will see I haven’t actually said No in one word! Learning how to deflect all the many requests was life changing for me. Most of the time mum really only wanted me in her house to keep her company. Even dropping hints about how nice it would be to have a “live in daughter”. No way in the world would that ever work. Mum always found reasons to say no to everything in life. I always had a “have a go” attitude. (I must hold an unofficial world record. On my very first ever ride on a motorbike, just 2 miles from home, I was stopped by the cops for speeding!!)
Your attitude is one to be applauded, and I’m hoping to get something from the six sessions of counselling ( not sure about the on line bit, but I’m hoping for the best).
Who would have thought saying NO was so difficult……
I can’t help much but there are some good suggestions here.
I do feel your pain, sometimes I wish I could split myself into three, one for my partner, one for dad and one for my young kids!
We are the sandwich generation. I don’t seem to meet many people in our position in life.
I really really hope that you get the help you need, you can’t do it all by yourself x