Hi there. I’m new to the forum. I care for my disabled husband, on top of looking after my disabled sister now and then. My daughter also has the need for my help too so it all gets a bit too much sometimes. I often feel quite isolated as I don’t get much time to socialise. I thought trying a forum might help a little.
The forum will certainly help. There are like minded and some in the same situation people on here. Ask away any questions. Can we ask husband and daughters ages and disabilities.
Welcome to the forums! Do you want to tell us a little bit more about your family’s impairments or not? I agree. Have you talked to the council, to ask for a social worker to come out to your home to do a needs assessment? This is the first step. When was the last time you had any me time? Believe me, this is crucial for your sanity. I relish any me time I can get these days.
Trudy, I was once a multiple carer.
All four parents lived locally, all entitled to highest DLA Care, one too stubborn to apply!
Son had severe learning difficulties.
By the time 3 parents had died, I was recently widowed and disabled, left to run our business and 30 tons of lorry spares, and mum had been housebound for years.
Counselling helped me set clear priorities, and made me realise that I too had a right to a life, I should not have to spend all my time running around mum and son.
My son had to come first, because he couldn’t speak up for himself.
Mum didn’t like this, but had to agree it was true. So mum had carers 3 times a day, a gardener, and a girl to do her shopping and ironing. I was responsible for all mum’s money, because she didn’t want to deal with it herself!
My role was more of a care manager for mum, I didn’t provide any hands on care, but supported her, picked her flowers and her soft fruit (carers would buy raspberries but not pick mum’s home grown!), bought her nighties and anything else she needed.
Your role needs to change, so you too MANAGE their care but don’t try and do it all yourself.
Hi there! I’ve been my husband’s carer for almost 30 years. He is 49 and my daughter is almost 24. My husband has complex health issues, he has indications of a neurological and muscular disability but as yet we are no further forward with a diagnosis. He also suffers from sleep apnea, osteoporosis, ostepmalacia, ulcerative colitis, IBS and we are currently waiting for results to see if he has narcolepsy. Due to long term medication things have changed too like the cartilage throughout his body has softened and bone trouble. My daughter suffers from depression and may have fibromyalgia, trying to get her tested for it is an uphill struggle as she has a terrible needle phobia. Everything just feels like an uphill struggle to be honest and struggling alone for all these years I thought it was time to look for support for myself as I suffer from PDD.
Hi there! I’ve recently seen my GP, who is great, to have the shower changed as I struggle getting hubby in and out of the bath. I tend to cope really well, its just spreading myself so thinly between 3 houses is just really difficult at the moment. I did manage an hour out yesterday, but it didn’t feel enough to be honest. I have booked a weekend away for myself in November (this is a new thing) as I’ve come to the conclusion that I need a break.
Hi there! This sounds very similar to my situation at the moment. I do tend to manage really well when I only have to look after my hudband, I make time for myself but now my workload has tripled I’m finding things more difficult. There’s only so much I can do to help my daughter, she lives away from home and travelling is just as tiring as caring. It’s more worry where my daughter is concern but I do end up cleaning when I visit. Likewise with my sister, she suffers from rheumatoid arthritis which she manages quite well and generally only calls on my help from time to time but she recently began with breathing difficulties so I’ve been shopping and cleaning there also. It’s all come at once and kind of derailed me. I’m the type to make things work and balance everything but recently found things personally hard. I always feel guilty when I take time for myself, which isn’t very often, my own health suffers from time to time also. I’m diabetic and overweight and just going for a walk to improve my own health makes me feel guilty for not being there, daft I know but there it is.
Agreed, very similar situation to me.
Your sister should be entitled to help from Social Services if she has modest savings.
If she has savings, then it’s time she started spending them to make sure she gets the help she needs.
Is she claiming Attendance Allowance?
Why do you worry about where your daughter is? Does she have special needs?
It is absolutely vital you make time for yourself, don’t feel guilty about it, because you need to keep well too.
Has your husband also had a Needs Assessment from Social Services? Does he have all he aids and adaptations he needs so that he can manage without your constant involvement?
My sister has no savings and she generally manages herself except for shopping, she lives in a first floor flat and the stairs and heavy shopping means she can’t manage, with breathing difficulties added it means I need to do a bit more than help her up the stairs with her shopping. She’s good, she only asks if it’s absolutely necessary which at the moment it is and will be for the next few weeks until she is assessed at the breathing clinic again. My daughter suffers from depression, like me she has persistent depressive disorder but doesn’t handle it as well as I do, I try and help as much as I can and be supportive and she is trying but she’s in a difficult position with work/homelife at the moment which is making the depression worse. I can’t solve it, I know that, but it makes me worry more because I’m not a 15 minutes away anymore. I just have to keep supporting there, as it’s going to be an ongoing thing.
We’re waiting for an appointment with the occupational therapist next month to assess any needs we have. I’m chipping away and trying to balance everything which I do quite well, until the next thing happens and I have to juggle again, it just seems that that’s all life is though.
This is similar. Until June of this year, I also cared for my physically disabled 5 year old sister. She had breathing difficulties and required a trach. She also had speech issues as a result of being trach dependent. In June, I decided I could not cope anymore. So as she lives with me on weekends, I contacted the local disabled children’s team for support. Now she has 2 or 3 carers who come to relieve me, private ones. I needed a break. Now I am about to do the same for my son. We have a assessment tomorrow. He was discharged around eleven today finally.