Struggling with a disabled parent. Part 3

[Duchess379]

So, some of you will recall my previous posts in relation to my 67yr old mum who has suffered from several strokes & had a triple heart bypass in 2017. She has had several stays in our local hospital in recent months due to be unsteady on her feet & getting confused a lot.
She has been home one week after another 3 week stay, after falling down several times & paramedics attending 3 times in 4 days! Due to her safety, they admitted her into a ward.
Problem is, she's now worse than ever! She had another uti which they were slow at treating & did very little physio with her, so she has zero stability now.
And the hospital packed her home, full of laxatives so I've had a complete poonami on my hands as soon as she got home! I think she still has a urine infection because she needs to pee all the time. I'm up every couple of hours with her, changing & washing her, changing her bedding because she's become incontinent. She has no strength at all so I can't even get her on the commode. In the last 15hrs I've changed her bottom sheet 3 times because it's wet. I am absolutely shattered. And getting resentful.
We have nurses coming in 3 times a day, but she's already been before they arrive, so I'm still doing the donkey work. The physios have said she's a 'fall risk' so she's to stay in bed until a 2nd assessment is done, so the nurses can't help get her on the commode anyhow!
I honestly don't want to do this anymore. Without droning on for hours, my mum wasn't a marvellous model mum to begin with & I truly believe she has some sort of autism/aspergers that is undiagnosed.
There is no Christmas in my house this year because I just can't be bothered.
Does anyone want to adopt me so I can escape this shit life? 😶

I would have you in a heart beat. DD and DSiL have dropped out as he has the plague.

But seriously, I am in awe of you. You are living the nightmare scenario I was afraid I would be in six months ago with my much older mother. I don't know if it is possible in your scenario but can you contact social services and say that you are no longer in a position to provide personal care? I was getting Carer's Allowance for my mum and thought I had to do everything but I didn't.

After her poonami incident and subsequent hospital admission we told the social worker we would not provide personal care in any way. We would provide meals, clean the home and shop and provide company but no personal care. In the event it became clear that she needed professional help - she now needs to be hoisted, is incontinent and the dementia that I had tried to deny/cover up is showing itself loud and clear.

You need to tell the nurse that you just cannot manage anymore, they will need to reassess ner care needs urgently. She is immovile, eoubly incontinent, at risk of lressure sores, may have a uti and needs to have more care or move into a carehome. Meantime the nurses need to supply incontinent pads, get a urine sample and tell the gp that she needs a higher level of care. I would also call the safeguarding team at adult social services and tell them she is a high risk.

@IthinkIsawahairbrushbackthere

I would have you in a heart beat. DD and DSiL have dropped out as he has the plague.

But seriously, I am in awe of you. You are living the nightmare scenario I was afraid I would be in six months ago with my much older mother. I don't know if it is possible in your scenario but can you contact social services and say that you are no longer in a position to provide personal care? I was getting Carer's Allowance for my mum and thought I had to do everything but I didn't.

After her poonami incident and subsequent hospital admission we told the social worker we would not provide personal care in any way. We would provide meals, clean the home and shop and provide company but no personal care. In the event it became clear that she needed professional help - she now needs to be hoisted, is incontinent and the dementia that I had tried to deny/cover up is showing itself loud and clear.

It's hard isn't it? She won't even try. She's always been lazy & would rather go without than put the effort because 'it's too hard' This is how I've got myself in this mess in the first place. I've literally written a 2 page letter to my GP, saying I can't do this & she needs intense physio now to get her mobile again.
I'm sorry your mum has dementia, its such a cruel disease 💕

@KittenCatcher

You need to tell the nurse that you just cannot manage anymore, they will need to reassess ner care needs urgently. She is immovile, eoubly incontinent, at risk of lressure sores, may have a uti and needs to have more care or move into a carehome. Meantime the nurses need to supply incontinent pads, get a urine sample and tell the gp that she needs a higher level of care. I would also call the safeguarding team at adult social services and tell them she is a high risk.

Nurses left me a urine sample bottle, so this morning I put her on the commode & got a sample.
I've also written to my Dr, explaining what's going on. Mum needs physio now, not an hour a week! I have no idea what I'm going to do with her on Christmas day - I can't get her downstairs 😶🎄

If the physio and nurse say she has to be in bed and not up to use the commode you are putting both yourself and her at risk of injury. Physio will only help if they think she has potential, the nurses could have given you a special pad to get a urine sample rather than a pot. Are they qualified nurses or carers coming in. Do not try and get her downstairs, at best the carers and therapists might suggest a hospital style pressure bed is put downstairs but that is their responsibility not yours. Do you live with her. Have you spoken to her gp as well as yours.

I live with her - our finances are entagled, unfortunately.
I have to pick my battles - do I let her wet/soil herself & have to clean her up, change her pj's & bedding for the umpteenth time, or do I put her on the commode? I know what the physios say, but they're not here 24/7.Or doing the washing! It's an absolute mess. The nurses that come in can't believe how much she's deteriorated in 3 weeks, so it's definitely muscle wastage that's causing the issues...😶

It sounds really difficult, could she wear pads and have inco pads on the bed instead, that is what a carehome would do if someone was on bedrest. If the nurses are concerned they need to speak to her doctor and maybe think about getting her back into hospital.

Have you got any disposable bed pads? That would cut down on the sheet changing. Also incontinence pads - to help stop the bed getting soiled in the 1st place. Not much you can do about the clean up of your mother after a poonami I'm afraid. I'm so sorry you're going through this. Sounds like she should have been discharged to a rehab bed rather than home.

Her muscle wastage could be because she is not moving, exercising, is diabetic and generally unwell. Does she suffer with diabetic nerve damage that might be contributing to her falls. I would ask for another urgent needs assessment, are her blood sugars more stable now, high levels can cause frequent urine. Did you move into the bungalow, would she be safer in a carehome, she may qualify for some financial help and if you have health problems yourself you can see if you would need to move. With back problems I worry you will injure yourself permanently doing all this level of care.

I've got mum in disposable nappies but she was initially complaining they rubbed her skin so we cut them. It wasn't holding the wee. She's now wearing them as proper pants now & I've put puppy mats underneath her. So far, no pissy bedsheets so I'll take that win. Dr has confirmed she does have a urine infection. But my patience is wearing thin, on top of being so tired!
I'm trying to clean downstairs & every 10 mins she's calling me. If I don't respond she throws things on the floor to get my attention so we've just had a massive row. She's just a fucking awful person, even worse with the infection.
She can't remember how to use her phone or tablet so she 'can't' use Messenger. I've shown her several times & she just zone's out & stops listening. Agggghhhhhh!!! 🤦🏼‍♀️

Are you using adult continence pants, you can get different types and the ones with stick on tabs are easy to get on and off. The nurses can do a continence referral and she may get pants and pants on prescription and also the council supply special bins. I would remove anything from her that she can throw, its hard but if she is acutely confused and got an infection arguing wont achieve anything. Does she need to use the phone or tablet at the moment. Her infection might also be affecting her blood sugar levels which doesnt help.

Her sugar levels are awful at the moment but the district nurses didn't say 'has she still got an infection?' , I had to instigate that myself.
She uses her tablet all the time, watching Netflix & YouTube. It was the portable speaker she threw on the floor in a temper! She keeps going on that she wants to go downstairs, so I said 'get yourself out of bed & you can come downstairs'. She can't even sit up so after struggling for a bit, she relents & gives up.
I'm buying the adult incontinence pants from Aldi at the moment. My black bin is full & not being emptied until Friday 🤦🏼‍♀️

The least of your problems but you may be able to get an extra bin from the Council

I slept in 3 hrs increments last night- had to get up several times to 'change' mum. At least the antibiotics have turned up this morning. I'm just so tired..😶😴

You have to ask yourself if you’re willing to continue like this or not.

If not you need to contact social services and tell them you can no longer provide care. Otherwise they will assume all is well and you will have to carry on.

I'm absolutely raging! Me & dad had to do Xmas food shopping today. Mum was fed, given tea & went to wee before we left. Strict instructions- don't get up. We get a frantic phone call in Tesco's that she's fallen out of bed! Her physio found her & rang an ambulance. Because she 'might' have a spine injury, she's been carted off to hospital on a spine board.
She wanted to get up & exercise her leg! She couldn't wait 30 mins for her physio. I haven't gone with her. She can bloody stay there for all I care. 😡

Oh dear, how frustrating but it may be a blessing in disguise and get her properly assessed physically and mentally. I hope she hasnt hurt herself or got a spine injury.. The current situation is no good or healthy for either of you..

From the sound of it her mobility and needs need properly assessing anyway.

Make sure you’re clear with the hospital how much you are and aren’t willing to do for her when she’s discharged.

She's home! No injuries, thankfully! I'm going to tie her to the bed until physio arrive tomorrow 🙄

she needs a proper care needs assessment by social services.
also contact the continence service, usually run by district nurses.
those pads you can buy in aldi are not adequate for her level of incontinence.
does she have a hospital bed; i think she should have, with the sides kept up.
actually she doesn't really sound safe to be left alone for more than a few minutes.
but that doesn't mean you have to do everything.
ring social services and say you feel she is not safe in the current set up.

She needs a hospital bed, you cannot have the sides up without a assessment and consent but it could be a bed with controls to lower it with a falls mat. She needs a pressure mattress and continence review. Do not tie her to the bed.

When she was discharged last week, we had a hospital bed delivered with controls on. It has side bars to stop her falling out & an air mattress to help with circulation. I forgot about the side bars but I'll definitely put them up next time i go out. Of course, she moans about the bed that it's not comfortable etc. She doesn't like duvets because they're 'too heavy' but then complains she cold with just a throw over her.
She just complains about everything. Every day 🤦🏼‍♀️

The side bars can cause more damage if someone is fidgety and tries to get over the top or between the frame, usually a nurse or therapist would carry out a bedrail risk assessment and consent as they are a form of restraint and potential harm. Would she tolerate a lightweight duvet or sheets and blankets.

KittenCatcher - I've put a fleecey throw over her. It's too itchy! She's got a soft furry housecoat that she tolerates. I bought a new duvet for her when the bed arrived but it's 'too heavy' The moaning never stops. She wants to get up & come downstairs. Fine, it's a bit of a pallavah but we do it to get her moving about. 15 mins later she's complaining she's uncomfortable & wants to go back upstairs. We go through all the pallavah again.
She's 'forgot' how to use apps on her phone like Messenger & WhatsApp. So instead of pinging me a message, she just shouts for attention. If we don't hear her, she throws stuff on the floor. It's fucking painful. I've told her I'm not responding to banging & hollering, use the bloody phone. Fml! 🤦🏼‍♀️