Please or to access all these features

Elderly parents

I need some perspective

62 replies

IthinkIsawahairbrushbackthere · 24/01/2020 16:10

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.

OP posts:
New posts on this thread. Refresh page
Orangeblossom78 · 30/01/2020 15:55

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

thesandwich · 30/01/2020 13:12

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?

CMOTDibbler · 30/01/2020 11:58

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

IthinkIsawahairbrushbackthere · 30/01/2020 11:11

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!

OP posts:
FinallyHere · 29/01/2020 17:13

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.

BlueJava · 29/01/2020 11:12

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).

MereDintofPandiculation · 29/01/2020 10:54

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.

CMOTDibbler · 28/01/2020 13:58

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

IthinkIsawahairbrushbackthere · 28/01/2020 13:48

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.

OP posts:
JKScot4 · 28/01/2020 12:47

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.

IthinkIsawahairbrushbackthere · 28/01/2020 12:36

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.

OP posts:
NotAPan · 28/01/2020 12:16

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.

Lunafortheloveogod · 28/01/2020 12:00

Seriously you are not alone! She’s just too bloody close for comfort, well your comfort.. hers is being met, so why would she want carers in n out who won’t do exactly as she asks (we’ve got to work to times and laws).

Be firm, get adaptive aids, jug on a little table for her so she always has a drink, glasses need a string so they can’t fall, get a post box outside her feckin door if it stops her seeing it, clothes sat out at bed time so if she fancies starting to get ready she can, Alexa or clappers for lights, there’s universal remotes that have less buttons so she can’t bugger it up as easily, note pad with instructions even like if tv does this you do this.. and phone numbers for her friends if she fancies a chat.

You say she can’t walk from room to room how do you transfer her? We had a our Nanas folding scooter sat next to her chair, she was able enough to plonk onto it n do a few short steps still from the bathroom door onto the loo and back.. that magically came out after we suggested a commode (not permanently sat next to her chair but if she needed to go and we weren’t able to get over).

Be firm, yes she doesn’t want the help but you need help so there needs to be some give and take.

Also she’s more than likely entitled to the higher rate of attendance allowance.. Definitely see if that could be reassessed, then cleaners for you and her, possibly having her medication delivered (you can buy a smaller dose box and decant them so she can pop morning open n take them etc).

Orangeblossom78 · 28/01/2020 11:58

I think she would just get the daughter running around after her too...

NotAPan · 28/01/2020 11:57

What happens if you talk with her about it? Say that you're struggling with too much to do for too many people and it would be helpful to you if she had carers. That it doesn't mean that you love her any less or that you don't want to spend quality time with her. That it's not healthy for her (or you) to rely on only one person. That you need to spend time with your daughters and husband too, and run everything that goes with having two households.

How would that conversation go?

I think kind, gentle but firm boundaries are needed. "Right mum, I need to get you up and dressed at the same time as breakfast this morning." "I'm leaving you with this jug of water and a flask, so you won't need to ring me for a drink. I'll be back over at 3pm, okay?"

I'd also get your husband and tentatively your daughters doing some of it. Not the personal care side, but if she's dropped glasses? Daughter can you please go give granny back her glasses. Sometimes hubby can do dinner and a bit of a chat. If she refuses or asks for you, a brisk "mum's busy, you've got me for now".

Maybe she could have a "job" to do to give her some purpose in life. Can she knit for charity? Can she teach your daughter to sew, or be an audience for practicing presentations, or reading essays for spelling mistakes? Could she record her memoirs on a dictaphone for you?

Orangeblossom78 · 28/01/2020 11:33

It sounds like attention seeking to me. I would try oh, dear can you not use the phone, maybe we can get you a different one.

MereDintofPandiculation · 28/01/2020 11:30

This morning she asked me to message her friend and cancel her visit tomorrow because she doesn't feel up to it sigh. I used to find a brisk "yes, of course I will but I can't do it before Wednesday" worked quite well.

I think, rather uncharitably, that half the problem is having too much time so that you brood over little problems until they become big ones. But if you've lost your spouse and most of your friends, your mobility is impaired, and you're no longer being involved in big problems (whether they're the inadequacies of the treasurer of the club you belong to or the inadequacies of the government) it's very difficult not to let little things loom large. And you know your DD can solve the problem in 5mins flat, and you forget the extra time she'll lose by being disrupted in what she's doing, and actually coming round to help you, and the sheer stress of being always "on call".

It's difficult being a mother. For so many years you're so completely invested in your daughter's life, doing everything you can to give the a good start, feeling her pain more than you feel your own. It's hard to understand that they regard you as a nuisance periphery to their life. So not surprising that our mothers (and fathers) can assume we will give them a level of help which isn't actually achievable.

Orangeblossom78 · 28/01/2020 11:22

Is she unable to use the phone then? Maybe she could get one of those easy to use ones

Orangeblossom78 · 28/01/2020 11:21

I think they call it 'enabling'. It is often in abuse...to be honest some of her actions do sound a bit manipulative. I hope she is not taking advantage of your kind nature and love.

JKScot4 · 27/01/2020 17:54

The more you do the more hopeless she becomes, she can contact her friend, in future say ‘mum you can do that’ does she have a walker? to get about at all?

IthinkIsawahairbrushbackthere · 27/01/2020 17:49

@ammarry the promisory note was destroyed a long time ago as its only purpose was to protect my parents should life go pear shaped and we would need to sell/separate.

This morning she asked me to message her friend and cancel her visit tomorrow because she doesn't feel up to it sigh.

OP posts:
ammarry · 27/01/2020 07:55

I'm a social worker and she's a four call a day to me if we take out any care you provide.

I'd start with 2 and then increase. Like PP said get a cleaner, befriender etc and take the strain off yourself.

Don't mention the circumstances and the letter when around the house when you support with the financial assessment as it muddies things and 20 years is a long way back they are unlikely to check,

AutumnRose1 · 25/01/2020 21:55

cptartapp “they stumble on and on to the detriment of everyone else”

Agree. And that’s even the case for the nice ones, but OP, all jokes aside, your mother’s behaviour is dreadful.

Supersimkin2 · 25/01/2020 21:51

Ruining your life won't fix her.

Get a professional in to insist on carers to her face. Alternative is the care home.

What sort of parent does this? And why could anyone be called selfish for refusing?

AutumnRose1 · 25/01/2020 21:45

Mere in fairness, that whole comment is about dictating to others.

OP, glad I made you smile. It was hard work; to pervert the words of Matron Mama Morton, I deserve a lot of smiles for the effort it takes to hoik mah bosom 😂

Swipe left for the next trending thread