My mum has had a big Lupus/health relapse, she is currently in hospital with pneumonia, sepsis as well as abscesses on the inside of her back and chest. It’s going to take a very long time for her to recover.
Since her TIA’s and strokes, she is a very very intelligent lady but does struggle with multi-tasking and gets incredibly overwhelmed by situations as well as stress being a trigger for her flare ups. I completely understand she wants her independence, but she is massively struggling with keeping the house tidy, getting up and down the stairs, showering etc. I have a younger brother as well who is currently going through exams. She was denied the top banding of PIP and has been struggling financially massively (I said I was more than happy to pay for everything etc but she won’t accept) I used to be her carer for a long time but I’ve left the family home and that is now gone to my sister, however, my sister is struggling emotionally to do so.
I’m worried about her discharge from hospital; it has been really hard to talk to a consultant on the ward and I’ve written a list with my mum for the OT in case I can’t be at the hospital when they come round to talk to her.
I don’t know where to begin to start with getting more support and help for mum without undermining her and making her feel like her independence has been taken away, but at the same time, myself and my sister are struggling to provide the care she needs on top of working full time jobs. I want her to have a quality of life and a home that’s level and easy to maintain. We have aids already in the home but they don’t do anything for mum really and the house is falling apart (literally, the bathroom is covered in mould and the front door is falling off)
Any advice is really welcome! Thank you.
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IC1995
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Lots on your plate IC.Independence is one of those areas I am struggling with & it's hard to concede that one needs help, as obvious to others, but sounds like you are all struggling.
I am not an expert in this area just thinking out loud with you-food for thought.
First, autoimmune diseases hit us in so many ways including a wave of being up & down & can effect out mental well being ie a bit of depression. I had to be told by a preeminent professor in lupus before I accepted that it could be my illness & not me being able to 'do better' for oneself. GP may help mine did, especially if she knew that it would help her & all of you.
Don't know enough of supporting help, but to ask citizens advice and local disability team at your local authority. I don't know if she has a case to be re-evaluated.
Was wondering if your mom, who must be very tired right now, would except a 'cleaner' coming in to help that you may be able to afford ? Intially for a good clean, all joining in before she comes from hospital & secondly, a weekly or every two weeks, to help keep on top of the simple things like bathroom, changing sheets, vacuuming, etc. my mom felt so much better for having a clean house so she could enjoy life abit more and use what energy she had to get better.
When in doubt write to the consultants secretary if you have things to raise on behalf of your mothers health &/or for her to remember... Or leave the letter for her/him when he whips through the wards just with a few key points, as they may not have time for more....
Sending a hug to you and hoping your mom can realise she is not supermom at the moment, but sounds like she has a super family 😊 . ml
Thank you very much for the lengthy response and taking the time and energy to reply, I appreciate your kindness and advice!
The GP surgery has been absolutely useless unfortunately, the care is so inconsistent and incompetent. She has a massive folder full of medical documents and the most extensive medical history since the age of 13. I think citizens advice/local council is the best bet! Hopefully they take this hospital admission seriously this time and she can get a reassessment. She’s under a specialist team in a different hospital, which is the Lupus clinic but the hospital she is in at the minute is just a local hospital she had to go to critical care, so I think I’ll write to the consultants secretary on behalf of mum as she does struggle with things like that.
Thank you again for your kind advice and lovely words, I hope you’re doing ok with your own health and all the best ☺️✨
Age UK really helped me when my Mum was diagnosed with vascular dementia. They helped me fill the forms in and gave me loads of advice about how to get help.
Hi IC2995 I’m so very sorry your going through all this as a family and you sound like a very caring loving family which is amazing - maybe a social worker would be an idea ?? Don’t know what else to suggest but sending you a massive hug and really hope your mum gets out of hospital soon 💕
Hi IC, your Mum is very fortunate to have such a caring family. What you can do is ring local Adult Social Services and request a carers assessment. That way they come out and assess you and your needs. I did this for my husband who was really struggling to work full time and care for me. During that assessment they suggested that I have an assessment by a Social Worker and and OT. I was initially very reluctant to get help but I accepted it for my husband. They put in hand rails, stair rails, shower seats, steps, a floor to ceiling pole and a perching stool and got me a riser recliner, made to measure to help me when I cannot get upstairs. Best of all the put me on a Direct payments scheme which allows me to employ a carer 9 hours a week. It has been life changing. I really hope that you get the help you and your family need xx
Hi.....big hug to you and your Mum.....I applied to my Local Council Adult Care/ Disability Dept, they have a budget for those who apply , they assess your needs for , eg Stair lift , wet room , hand rails outside etc.... I would definitely give them a call . Have you thought now that she is in Hospital to contact PIP for a reassessment ?I hope this helps
Take care
Speak to the GP to get an occupational health assessment for your mum. Best if you can discuss whilst your mum is there. I can relate to your mum not wanting to accept help as when you are seriously ill you feel down and just want to cope yourself, albeit you can't. You need to continue to reassure your mum that the help is required to make her life better. The OT should be able to assist in helping your mum realise she needs help. Take care
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