I need some perspective

[IthinkIsawahairbrushbackthere]

I am carer for my disabled, widowed mum. She lives in a self contained annex in our garden. Our house is designed with all the living areas upstairs and there are steps to all the entrances.

Mum has little to no mobility and is in a wheelchair so is unable to come into our house at all. I have done all her meals and cleaning for years, since before my dad died.

Mum's condition has deteriorated over the past few years and in the summer she was taken ill with a perforated ulcer and sepsis. After nearly a month in hospital she came home with a reablement package. She hated having the carers coming in - she would never know when they would come in the morning so she started getting up ridiculously early so they had nothing to do and they would come in the early evening - sometimes as early as 6.00 p.m. to put her to bed so she started getting ready for bed at 4.00 p.m..

She was most relieved when the care package came to an end and she was left with me. Since then her mobility has deteriorated so she can no longer walk from her bedroom to the living room or from the living room to her bathroom so I have to take her every time.

My normal day looks like this:

7.00 a.m. - Get up with my daughter for school
9.00 a.m. - Go to mum, give her breakfast, sort her tablets, clean the kitchen and living room.
Sometime in the next couple of hours she will phone and say that she is ready to get up. Sometimes she will be dressed, sometimes I need to dress her and then take her from the bedroom to the living room.
1.00 p.m. - Go out to her and make her lunch/sort medication.
3.00 p.m. - She will phone and ask me to take her to the toilet.
5.00 p.m. - Another toilet trip, turn on the lights (she can't walk to the light switch)
7.00 p.m. - Take her dinner out. Then she will want me to stay with her until bed time.
10.00 p.m. - Take her to bed and help her undress etc.
11.30 p.m. - Husband comes home from work and I do his supper
12.30 a.m. - Bed

And at least another three visits through the day because she can't find her glasses/the tv "won't work"/ the mail has arrived/ she would like a drink "but don't rush - I can wait"!

After six months of chasing we have finally had a care assessment from Social Services and they feel she should have carers coming in twice a day. And she is furious! She has said she will NOT be having carers. Everything is fine. She doesn't need any help. But I DO!

I am up and down stairs to her at least ten times a day. She never wants to be alone but I have a husband and family and home of my own. My husband works various shifts so if he is on an early I really want to spend time with him. But I also have a teenage daughter who needs me. She can't bring her school work out to my mum's - mum has the tv on loud and will keep talking to her over the top of it! I don't want her to be left all on her own every evening. She already spends most of Saturday on her own because I promised mum I would spend Saturdays with her at a time when she was very depressed after dad died. I know there is nothing anyone can do to help with the loneliness - she has become totally dependent on me and I have to deal with that - but I feel that if I had a little less responsibility I could cope better with all that.

Am I being unfair to insist she has these carers? I am at breaking point trying to balance her needs with the needs of my husband/daughter/my own needs. The Social Worker says that she can not see me coping much longer without a breakdown and if we don't have carers mum will end up in a home. I don't mind doing the washing/cleaning/meals and could easily spend an hour with her in the evenings but not three/four hours every single night and all the visits during the day.

Oh and I have tried spending the afternoons with her but she still expects me to eat with her in the evenings and complains if I go home early, even if she has someone else with her.

Here's a thing I learnt on a communication course, I hope it might help;

We are all just trying to get our needs met. We are allowed to have needs, and wants - but we don't actually have the right to insist that another specific person meets them. She has a need for care, she doesn't have the right to insist it comes from you at the expense of your health and your family
unit. She has the need to feel safe and familiar with the people who care for her - AND there are other ways that can be achieved, other than it being you and only you. She has a need for entertainment and companionship, she doesn't get to insist that it's always from you.

It is my belief that a lot of problems can be sorted out if we can remember that everybody is just trying to get their needs met, and if we can just uncover what the need behind the behaviour is, that can be helpful to getting everybody's needs met.

In some ways she hasn't changed at all - she has always been clingy, even when I was a child she hated being alone when dad was away with work.

She really is very limited in her mobility. It can take 10 minutes for her to move from her chair to the wheelchair which is how she gets from room to room. She has continence issues as well so needs to get to the bathroom quickly. Her shoulders are also affected so she can't get things from the floor. I'm beginning to think that maybe her cognitive abilities are impaired - she forgets to use the string on her glasses and takes them off to put in the case every time - even if she is just rearranging things on her lap.

I bought the Doro phone for seniors, it is so simple, yet she can't even use it to make calls, let alone text or use any of the smart features. I'm not sure if that is a mind problem or her sight which is also very poor - she only has sight in one eye!

My daughter made her an idiot's guide to the tv - pictures, screenshots, large print, very simple language/instructions but she still gets mixed up. Although we use a lot of the features of Sky Q when I am with her she finds her bedroom tv - just one button up or down - much easier to use.

When the social worker came I was actually in tears talking to them both and she said that I was worrying needlessly - she can manage fine. "I can make my own drinks!" But when I asked her when she last carried something from the kitchen to the armchair of course she can't remember.

She has a frame with a carrier supplied by OT but she can't use it. She actually needs the care. I guess I am happy to supply the care or the company but both is hugely stressful.

I am happy to cook/clean/shop/do the washing and be a sounding board for all her worries and concerns but I am desperately hoping the social worker gets through to her about extra help, especially personal care.

You say your DM has always been needy, is this inability perhaps exaggerated to get attention? Unless she has cognitive issues she surely can use a tv and phone.
Get a grabber for her to reach things she’s dropped, a scooter to get a bit of independence, there are lunch clubs run by churches some will even collect her; things to give you a break.

She is usually ok with the landline and numbers that she knows although she has times when she struggles with that. But the mobile is a no go area, even though she said she wanted it and was thrilled to get it but she struggles to turn it on - partly I think because of her failing eye sight. She has problems with the tv for the same reason I think - plus with Sky Q the homescreen is quite complicated - compared with freeview.

I do think she is depressed but I am powerless to help her.

Has she tried the voice commands on the Sky Q? I just tell it to go to BBC rather than using the guide. You could also pair an Alexa so she can call people by just telling it to do so - a friend had to put a card next to her parents Alexa with a note to say 'Alexa' as her mum couldn't remember that bit, but even with a fairly bad cognitive impairment is using it a lot now

From what you say about inability to use phones etc, she sounds rather like my DF, who has been assessed as having "mild cognitive impairment".

DF has the Doro 6030 - a non-smart phone with limited functionality and an appalling camera. It has an alarm button on the back, which would be a bit of a liability with your Mum! but the clamshell design means switching on is a simple matter of opening it up for use. I've programmed a couple of numbers into it for one button dialling, but Dad usually just hit the green button and redials the last number - which means if I go away, I give a quick call to DS so that his number, not mine, is at the top of the list.

You say you're OK coping with care or company but not both. Has she funds to provide for one or the other? Ideal would be to buy in the care. But if she won't accept that, could you buy in the company? Many care companies can provide that. Start by introducing the carer as a friend of yours and going over with her, then see if you could move to the carer going in on her own.

This won't be for ever - once she declines enough to need a care home, you can move to providing some of the company and none of the care.

That sounds very difficult OP. You need to try and carve more time for you and your family. In the short term take action - example if a friend comes to see her and she wants you to go to her just say "sorry I'm busy right now, but enjoy seeing " and don't go over to her. She clearly needs drop in carers, if she is furious and says she doesn't need them, I think you have to calmly reply "Sorry Mum, but I do need them you will need to accept them otherwise I can't continue to do so much". She may be angry but you will need to be firm and ride her anger and don't enable her by helping her get up before they arrive (I know that sounds tough) but you need to do it for you and your family.

I'd also start planning for medium term, what would she be entitled to in terms of going into care where they can look after her 24 hours a day? With age she will not get better (I'm sorry but that's true) and you need to plan for this.

I am very sympathetic with you, my Mum and Dad were nearly broken by my Gran's demands when she lived with them for 10 years. She had a stroke towards the end of her life and the hospital were going to send her back home to my parents (who were then late 70s and Gran was late 90s). It wasn't until I stepped in and said they couldn't cope she was found a home where they had nursing staff. Because I saw how this was I have said to DP I couldn't take in either of our parents - but I know mine expect it. However, I am the main earner and there is no way I could give up work (although my parents don't know this).

It is very tough. It's as if your wise, older parents have suddenly regressed to be toddlers wanting attention. It's difficult to set boundaries but it might be for the best.

One hour each day and just not be available other time's. So much easier to say than to do I know. You have us at your back to support.

To qualify for Carers Allowance I need to provide 35 hours care a week - not that anyone is counting LOL! On a good day she can walk the 20 steps from the armchair to the bathroom and back but those days are getting further and further apart and she usually only able to do it once - ie if she took herself to the bathroom after lunch I have to take her in the wheelchair at tea time.

It really struck me when somebody said that she may be miserable she can't do things now but she could do them 30 years ago.

She has never been a carer - when her mother became very ill she didn't even visit her - just once she stood by the bedroom door and said hello, didn't even go in and touch her. My aunt and uncles cared for her while my parents moved into my aunt's house to care for the children. It wasn't that she wasn't involved but she couldn't cope with the care aspect. And although she was very supportive of my great aunt - phoning her every couple of hours, visiting her every week, when she had a breakdown she moved in with my aunt for a fortnight before going into hospital. She has never had to make the choice between supporting an elderly relative or caring for the family. She has no concept of how hard it is.

Her Sky Q doesn't have the voice control - it was a free upgrade a couple of years ago.

Even since starting this thread I am feeling stronger. I am telling her what is going to happen more directly. e.g. I am going with dd to a Uni information day. I asked my older daughter to be free to stay with her and she immediately said "There's no need - I'll go with them!" Her mobility is so bad I am not willing to take her anywhere where we might need a taxi without my husband to help me and it makes her so cross.

Others here have things so much harder than I do - at least she is only in the garden and I don't work outside the home. It is so good to have found a place to vent!

You can buy a voice control remote for Sky Q separately if you think she might try it. It really is as easy as pressing the button on the side and saying what you want

hair well done for holding your boundaries. She may be cross but that’s tough. Hearing from others on these threads has helped me massively. We use the metaphor of Teflon shoulders- mentally coating ourselves in Teflon to deflect the fear, obligation and guilt and enable us to live.
Put your dd’s uni info day first. A good chance to try carers?

You probably do the 35 hrs in 2/3 days to be honest..don't worry about that, you need a break.