I’m Dave, aged 49, and an only child. I was a police officer up until April but retired a bit early as I’m, to all intents and purposes, the sole carer for mum who is 82 and suffers from excruciatingly painful, deformative, arthritis and other conditions. Sadly the police service is not compatible with sole caring duties particularly when working shifts.
I persuaded mum to move into nice warden assisted accommodation in 2015. Previous to this she was in a desperately unhappy 45 year marriage and told me that she’d divorced dad the day after he died from cancer in 2013. She divorced him 6 weeks before his death. I was stuck in the middle of them from as long as I can remember - a deeply unhappy experience.
For the past 10+ years I’ve contacted mum every day and in the last 5 years I’ve visited her about four times per week in amongst disruptive shifts. I’ve not been away for more than 3 days in 8 years and my career and personal life has taken a massive hit due to constantly being exhausted and feeling that I’m continually ‘treading on eggshells’. I seldom get more than 5 hours sleep. (25+ years of shift work didn’t help). To me, looking after mum is like looking after a stroppy sickly child.
Since lockdown I’ve phoned mum twice a day and bought two Amazon Echo screens so that we can have a long afternoon video screen chat. (She couldn’t use Skype). I also do all of her shopping and have LPAs in place. I have managed her finances for years. I have recently got her Attendance Allowance.
During the past couple of weeks I’ve been able to sit in mum’s communal garden and I force her to use a basic walker after several recent falls. She is incredibly stubborn which is why she is still alive however she absolutely refuses to accept any help apart from me. I’m sure like many other carers here, I’m completely exhausted and my health has deteriorated significantly of late. Mum is lonely despite being in a safe environment and despite my efforts, she’s incredibly frustrated and increasingly confused. Her old friends have almost given up on her because she is often rude and incredibly ungrateful. This is the pain ‘talking’ I think but I’m now beginning to feel increasingly resentful that my life has practically been put on hold for so long. It doesn’t help when well meaning friends see how exhausted I am and tell me to just go away etc and let her get on with it. Mum takes her frustration out almost entirely on me which is unfair and extremely upsetting.
If mum’s GP increases her medication more than it is now I fear that she would not be able to function at all and that a care home would be the only option. She probably would not be able to get out of bed. I’ve been desperate to avoid this happening for years as she would absolutely hate it but I now think that it would be the better option for me which is not a good thought.
I would be very grateful if anyone has any advice particularly around persuading mum to accept a bit of help from others and/or to realise, despite the horrendous pain, that I can only do so much. I would prefer quality contacts and visits with her rather than the very tense and often upsetting interactions that we currently have. I dread calling her. Financially mum is in a good position so she could afford some specialist paid help. (She no longer has the confidence to use the shower for example).
Mum is manipulating you, your relationship is stuck in mother and child, as mine was until I nearly had a breakdown and I had counselling.
The only power mum has over you is the power you let her have, and she is behaving like an elderly toddler. For the sake of your own sanity, you must make yourself less available. Only when she is forced to accept that she needs help will her attitude change. Start by arranging for a domestic help, you are her son, not her slave! For the first few weeks be there at the same time so mum cannot turn her away! Does mum have a Lifeline pendant? Choose a day off, and stick to it. Perhaps start with evenings at home?
A friend of mine cared for his mum until she died at 104! In the meantime, find out more about local residential homes,ideally a care and nursing home.
Have you sorted out Power of Attorney?
I’m sure you’re right. After 5 years of battling with her, I’ve just ordered mum an emergency pendant with the help of her excellent warden. (Whether she’ll wear it or no is another thing). I think I will have to independently arrange a carer to visit a few times per week for an hour or two at a time. I do have LPAs. It would be good to have a small break.
Ta, I’m trying. She now hates me as I’m unable to wave a magic wand and cure her horrendously painful arthritis. I can’t do a thing right. I don’t believe in ‘God’ but I do wish that nature would take its course and put her out of her misery. The sad fact is that if she was a dog she would be put down. There is not much that can be done with chronic arthritis, there is nothing that will improve the physical condition…
My mum had osteoarthritis, osteoporosis, and something rare called hyperostosis. She was so bent her stomach couldn’t digest food properly, and her waterworks didn’t work properly. Finally the bony growths in her spine squashed her nerves, and she would fall without warning. Broke her leg badly and nearly had it amputated. She became too frail to live at home alone, and after months in hospital moved into a nursing home, thankfully near me. Do you have Health and Welfare Power of Attorney. One day mum was in uncontrollable pain, the GP rang to say that if they gave her any more pain relief it would put her to sleep. I told her that pain relief must be her top priority, regardless of the consequences. Mum passed away peacefully in her sleep, after over 40 years of bone problems. It’s so, so sad to see someone deteriorate like this.
This sounds like a difficult situation for you. It might be helpful to download our ‘Looking after someone’ guide from our support page and check what kind of help you can look into to help with your mum. Here’s the link Sheps Help and advice | Carers UK
On another note we also run a weekly care for a cuppa session, its held on a Monday afternoon at 3pm. It’s a weekly meet up session where carers come together to talk and support each other, sometimes it can help talking to someone else who understands what you are going through. The sessions run for an hour and its a great way to meet new people. Please have a look at the attached link.
Ingrid, I will view the information you suggested - thanks.
Bowlingbun, you obviously had a very tough time with your mum and the situation that you faced is similar to what we, me and mum, are dealing with. I do have both of the LPAs. It’s so sad dealing with anyone in continuous chronic pain I guess particularly if they suffer from a condition for which there is no effective treatment. I think I started the grieving process years ago when she began to waste away.
Hello Dave. It is sad to see someone going downhill like this. I feel for you at this difficult time. Thanks for being open about your thoughts and feelings.
I think that the best place for Mum in the not-to-distant future would be a care home. This is not a bad thought; you would both be better off. Are you so sure she would hate it? Has she mentioned the possibility?
A friend (now sadly deceased) whom I used to visit in a care home was very happy there. She had her room decorated with favourite pictures and ornaments from her former house and made it her new home. At every visit she used to praise the staff there for looking after her. She did not need to worry about cooking or laundry; someone else did that.
Palliative care is important here. Mum took a good step in previous years in going into sheltered accommodation. You have taken a further step in the right direction by arranging for carers to call at home. Hopefully Mum will begin to realise that they can look after her pain and personal needs better than you can. In due course you can broach the idea of a care home, and I am sure the carers will assist you with this.
And do give yourself a break, letting carers take over for a few days. Things will take time but I hope it all works out for you.
The difficulty I have (especially as an only child) is that I’ve probably been too soft with mum over the years for entirely the right reasons but… When I was working in my highly stressful and exhausting former job that involved a lot of confrontation in all its forms, I really didn’t have the energy to deal have battles with mum - this was probably a mistake. I went for the line of least resistance.
Mum is a battler which is why she is still alive. That’s great as long as the person, eventually, recognises that they would benefit from some help that would make their and their carers lives easier. Unfortunately for both of us, mum is incredibly stubborn. She is clinging onto the tiny bit of independence that she has left, which is very little. She would rather spend two hours dressing or three hours doing her washing in the warden assisted communal laundrette rather than ask for any help. This of course increases her pain still further and she has had falls, any of which could kill her.
I have begged her to accept some help as have the few friends left that will still put up with her together with the excellent warden and she has completely refused. I can actually see her trying to barricade her door if I enforced an occasional bit of help on her - which I now intend to do. It would be funny if it wasn’t so sad.
She is of a generation that doesn’t like to spend money even though the costs of getting a bit of help are relatively low.
She is so blinkered by her pain and stubbornness that she seemingly doesn’t give a monkeys about me and how her actions, or lack of actions, detrimentally affect me and the few others who try and look after her best interests.
Mum would rather ‘do something stupid’ than go into a care home unfortunately. Her early stage arthritis got much, much worse due to the stress of her mum being in various care homes, all of which were good I hasten to add.
This would all be very interesting from a psychological point of view except when it happens to you.
I’m going to give her GP a ring tomorrow as she was visited once years ago by a community nurse I think who was very nice but we never saw her again. Perhaps they will be able to return when it’s safe and convince her that accepting a bit of help from someone other than me would be a positive thing to do for both of us?
Hello again, Dave. This was not a mistake. Please don’t blame yourself.
It was good that, at the end of the shift, you could let go of the job and not bring it home. I’m sure this was a tough job, where you sometimes had to deal with nasty people or be called to attend to horrible situations. You would not have wanted to involve your mum with any of this.
If we are honest, most of us have probably been a bit “soft” with our parents, and would put up with behaviour we would not accept from friends or work colleagues. After all we were brought up in the regime of “Honour-your-parents-because-they-have-done-far-more-for-you-than-you-could-ever-do-for-them-in-return.”
Your mum is stubborn because that is the way she has always been - not because you were “soft” with her in the past. She will not change easily. She has at least moved to sheltered accommodation, following your instigation, so that is a step towards accepting help. She should be grateful for the presence of a warden on call to assist in case of a problem.
You need to get across to her the idea that if she is in pain as a result of laundering or other activities against your advice, then she has only herself to blame. Don’t be confrontational; don’t have a battle; just pleasantly explain that you don’t like to see her suffering and are trying to help.
Regarding money to spend on carers, she has attendance allowance so explain to her that this is what attendance allowance is for.
It is good that you are pressing forward with trying to involve a community nurse. You need to be gentle but firm and resolute.
Regarding her mum being in various care homes, why did she find this stressful? Was it a case of her overdoing the activity of visiting? Perhaps you could tell us a bit more.
I hope your visit to her GP has a positive outcome. Do keep in touch.