Mum was diagnosed with advanced lung cancer on the 10th June. She’s 81 and been a heavy smoker for years 
. I couldn’t even attend the appointment as I’ve been ill myself with a very painful condition called trigeminal neuralgia but the consultant dialled me in. He said basically palliative care, no chemo as mum is to frail. Although she was getting very tired by then the weekend before she’d been at a jubilee party at the sheltered housing complex she lives in. Fast forward to Thu 16th and district nurse had visited and called paramedics as her breathing was vey laboured. They gave her oxygen and a nebuliser. Next thing I get a call at 3:30am as mum had pressed her careline. Got there and she’d fallen so paramedics again gave her a nebuliser. After I realised she’d missed the steroids the consultant hand prescribed.
Luckily the local hospice stepped in Friday night and did their first visit 
️. She’s now getting 3 visits a day, hospital bed is hopefully ordered and comeing soon and a commode. She’s now very tired all the time and sleeping a lot and very confused when awake. She already had vascular dementia. Also waiting to find night sit in care which I’m trying to provide at the moment. I’ve pretty much got through on adrenaline and dealing with all this practical stuff, the emotional stuff and the pain is leaving me exhausted. I was already signed off a desk job even because of the pain. She needs a sitter really as can still get up but isn’t stable. I’ve borrowed a commode which is next to her bed but she will still try and go to the bathroom instead, she forgets the commode is there.
Lucily the complex has guest rooms which the warden has blocked out for us. I’m a tech person so set up a Ring security camera which alerts me if she gets up and it only takes me a minute or 2 to ge
to her flat so I can at least get some sleep. I’m an only child wit rest of family over 100 miles away. My husband doesn’t drive but his dad has come down to take me for my operation but neither wou do any personal care like helping with tuba commode
I’m worried the op will put me out of action for a while but I need the pain under control.. I’m hoping I,can get a night sitter in time. Also hospice staff are only allowed to prompt not give medication which seems odd when they’re in a dosset box, I’ve been handing each pill to her.. District nurse team have been brilliant fast tracking her for CHC which is effectively free care at home as it’s NHS provided not social care.
Really just needed to post somewhere people would understand
Hio AndreaH welcome to the forum and sorry that you have not had a reply as yet. That sounds like it has been exceptionally challenging for you with your own health needs . If as you say Care is coming in 3 times a day is there any scope for them to get a night sitter for you at all? Is there a hospice nearby where mum could have some time to get symptoms under control for you all and give you some much needed rest and sleep? Worth asking if this is available in your area.
gail
Local hospice is community care only. Today between care visits she must have for herself up and into her chair
. Carers last night struggled to get her up and into bed from her chair as she was very weak. I have security camera set up so can keep an eye on her between visits. Had a night sitter she knows in last night and have employed a private company of carers to conver nights this week.
Should get funding for night cover as DN days it's needed just not sure how many nights but can afford to cover the other nights. Just been so much to learn about and do in a short time.
