The best way for me to help my mum care for her parents

Hi Everyone,

I am after some advice about my mum’s situation. She cares for my grandparents and I am attempting to help her in whatever way I can. I am finding it difficult to approach the subject of their care without emotions flaring and I am coming to the conclusion she may not even want my help. I wanted to ask those in similar situations if they could give me some insight so that I may be more understanding of her point of view. I am also contemplating showing this thread to my mum once I have some replies and it might be a good way for us to talk though the situation.

My gran (93) and grandad (88) both live on their own in a 2 storey semidetached house My gran is legally blind with very limited physical movement and is solely dependent on others for care. She has also suffered from anxiety from a number of years and she is showing signs of dementia which is getting worse all the time. My grandad has recently had issues with his back which left him bed bound but now he is only house bound. He has improved but has not been the same since. He has most of his faculties but can get muddled. Unfortunately he completely panders to my gran even though a decision might cause him or her harm (e.g. lifting her into bed or not giving her medication).

My mum has been the sole carer for my grandparents for a number of years. They currently have carers but this is limited to a handful of hours in the morning for house cleaning, preparing lunch , etc… My mum is also acting as their carer 3 days a week for the majority of the day or attends when necessary outside of this. They have not left the house for an extended period of time for 2 years (except for doctors appointments etc…). My gran must use a wheelchair outside.

My mum has had a string of bad luck with her health in recent years including breast cancer, 2 heart attacks, as well as others. I am always worried I am going to get a call and find out my mum has had a third heart attack and I’ve got to try and prevent that. Her partner died from cancer a couple of years ago as well and she was his sole carer too. This resulted in her 2nd heart attack a few months after he passed. My mum has always leaned towards caring for other family members and I do believe it’s in her blood and she enjoys it to an extend, but she isn’t getting younger and I want my mum around for a bit longer. It is a concern of mine that when my gran passes the need for her tyo care for someone will reduce like with her partner and then she will suffer a 3rd heart attack from all of the additional stress and mourning.

Another contributary factor is that my mum has not had a “holiday” in over 2 years (e.g. a week of to do what she wants to do). I want her to have a continuous ½ weeks off and have the ability to do it multiple times a year. She does have days off or days away from her parents but she considers her work days as days off. I don’t believe this to be healthy and she must allow herself rest and recuperation. She will always say “she has to look after her grandparents” and I just don’t understand why it must be herself who provides the care when we can get others to do it for her, even if its only temporary. I do believe she finds it difficult to detach herself from her parents and doesn’t like the idea of others caring for them, perhaps she thinks that no one else can provide the level of care she does. This is probably right but it cannot mean that she is never allowed the break.

I live a few hours away and I feel helpless to the situation so I want to provide some help however I can. However, it is really stressful when this help is not accepted and every suggestion, I make is shot down instantly. I don’t want to make this about me but it makes me absolutely miserable seeing my mum like this. My number 1 priority is making sure my mum is ok, like hers is her parents wellbeing, and I cannot let her continue to run herself into the ground when its unnecessary. I am sure my mum takes these suggestions personally as if I am saying she is not making the correct decisions.

The subject of my mum’s parent’s caring needs is a taboo subject but is the elephant in the room. My mum will always turn it around on me and take my suggestions as criticism of what she has put in place for them already. This couldn’t be further from the truth; I think its wonderful what she has managed to put in place but I am concerned she doesn’t have capacity to sit down and properly think about their long-term care.

My mum will also only provide reasons why we shouldn’t do something and will never look at the reasons why we should do something. For instance, a common reason is that something will be “too difficult”, “they will never agree to it”, or “she (my mum) will be the one who deals with the fallout”. All valid but just because these are likely doesn’t mean we should never look into improving the care services my grandparents use. She will also focus on anecdotal evidence for why we shouldn’t investigate other care services further, such as hearing poor reports on how some may operate and apparently this means they all operate in a similar way and offer dreadful services.

I cannot be mad at my mum for reacting in such ways as she is constantly in in firefighting mode, completely stressed out, and unable to properly review the situation without becoming overwhelmed. I am probably not helping the situation either and I will be the first to admit I probably cause some of the friction but everything I am trying to do is coming from a good place with positive intentions. I would be interested to know how I could approach this in a more positive way in the future.

I have asked my mum if she would list all of the task she does for my grandparents. I have said write all activities down, even those that she knows cant be done by a carer or the more private/personal caring activities she has had to do. We can then review this together and logically think about how we can offload what she does. I am not asking her to remove herself as their carer, just reduce it and give her some breathing space to be their daughter and concentrate on the really important stuff and maybe the emotional and mental health care they need.

I have also proposed we should be looking at putting in place the following:

• New care activities that are currently not covered by anyone (help out of bed/going to bed)
• Existing care activities which could be delegated to carers (e.g. clothes washing)
• Extend the activities undertaken by the existing carers (more hours, very limited currently)
• Survey local private care providers
• What the upper limit for monthly charges could be
• A phased approach to the above
• How we can approach mums parents with this and get them on board
• Capacity for mum to have holidays (minimum one week plus)

I have also asked my mum for permission to go to all care providers in the area to find out what services they can offer considering my grandparents situation. We can then build knowledge of what’s possible and how much it will cost. We can then use this to make a decision on our next choices. My mum has been severely resistant to me doing this but has conceded recently. This has made me feel a lot better as I will no longer be at the side line watching on but actively providing help.

I know the above is just an incoherent brain dump of the situation but I would appreciate to know if what I am doing is the right thing. If I should be backing off from my mum I would be happy to be told I should or if I could be doing anything differently I would listen. Please call me out if i am doing anything incorrectly. I am sorry if i have used some overly strong words to describe my mums reactions, i acknowledge some are probably overt the top but due to the emotions involved it does make it difficult to be impartial I love my mum more than anything and i just want her to have a happy life.

If you’ve made it this far, thank you very much for reading my post.

A few questions first, the answers will help find a solution.
How old is mum?
Do her parents have over £46,000in total savings?
Does she have Power of Attorney?
Are they both receiving Attendance Allowance?
Is their home and garden streamlined, disability friendly?

Thanks for responding, here are my answers:

How old is mum? 62 next month

Do her parents have over £46,000in total savings? I believe it’s borderline but I don’t have the specific figure available to me. They own their house outright but I am assuming this does not impact what you may be alluding to. I’m any case, money is the least of our worries. If anything my grandparents are penny pinching and act as if they have no money and hate spending it on carers when they’ve got more money coming in than they ever have.

Does she have Power of Attorney? Yes, both health and finance.

Are they both receiving Attendance Allowance? I believe so, if not I know at least one of them are. If the other one isn’t its because they “don’t need it” but this is obviously not a reflection of reality. They might have put this in place recently though.

Is their home and garden streamlined, disability friendly? To the best of our ability. It would be best if they had a warden assisted property like a bungalow but there is heavy resistance from everyone involved. The council have assessed their situation and we have put in a stair lift, safety rails on the wall and bed, wet room but it’s upstairs, power recliners to help them get in and out of the seat. Garden is less than perfect, some safety bars on the wall but my gran cannot get out any more due to steps or difficulty in maneuvering her wheelchair. No ramps. Emergency button they wear around their next.

Biggest issue is my gran keeps falling over and she is unable to get up and my grandad cannot get her up sometimes. Either their 85 year old neighbour comes to help and he is considered a youngster or my mum is woken up in the night to pick them up.

Many thanks for your time reading my post. I was having a bit of a crisis when I wrote it last night.

Hi No_2104 and welcome to the forum

I’m sure others will be along with support and suggestions but it might be helpful to look through our help and advice pages and check your Mum is getting all the support she can. There’s lots of information there on all aspects of caring:

Best wishes

Jane

Never ignore those feelings of crisis, something needs to change before mum gets ill.

Under NO CIRCUMSTANCES should mum or a neighbour pick anyone up. Your grandmother should use the Lifeline, and the Lifeline should call an ambulance, NOT mum!

Are they both claiming Attendance Allowance? Mum should know, as she has POA. She can deal with DWP on their behalf.
That money is given to them especially to pay for an “attendant”, i.e. help.
Money IS the problem here, they are penny pinching because that’s what their generation did.
If they both got AA they could pay for a carer to clean and do jobs for them so mum didn’t have to. To start with, mum could supervise them.
Do they pay mum, or do they expect that for free???
Mum is their daughter, not their slave. It took counselling when I was 60 to realise that I was still being an “obedient little girl” as far as mum was concerned, never refusing to do anything.
Mum needs to get extra help. Without her, the parents would have no option but to move into residential care. The parents need to be doing everything they can to help her and reduce her involvement.
It’s not fair on you and the rest of the family either!

Thank you for the response. I was really worried that what I had written was going to be taken the wrong way and that I was being too harsh in my mum.

I have tried to stress the point to mum that relying on their neighbour to lift them is not a good solution especially as he could hurt himself.

I would imagine that they do get attendance allowance. My mum is also getting carers allowance too. So she is being paid but she is doing so much that she is probably getting less than minimum wage. Rather than money being the issue I would say its their attitude. They have more than enough to get help but they act as if they need no help even though they have their own personal slave.

They do have limited carers but when they turn up they won’t let them do anything. For instance my grandad could use this as time to get a shower but he refuses and just sits there with my gran. I did speak to mum about this today though and she said it would be a good idea to be there an coach them into using them. Their default though is why do we need to get others to help when my mum is available!!

I have said to my mum multiple times that if she decided to do so she could walk away from them and provide no care. This would then force them into a nursing home or make them realise how reliant they are on her. My mum’s reaction is always “but who would look after them” as if no one on the planet is capable of helping them unless it’s her. I do fear she is completely conditioned to do their bidding and is actually a barrier to them, and in turn herself, receiving proper help.

I did read something that said the care she provides should be conditional on her terms and that if they don’t like it she should withdraw all services. It would be extraordinarily hard for my mum to take this approach but it makes sense. If they want her help then they must compromise and allow others to care for them too. And if they don’t agree they’ll end up in a care home much sooner than any of us want.

If you had to give one piece of advice to my mum what would it be?

Caring can kill.

My lovely husband DIED of a massive heart attack when just 58, soon after his father. We’d been juggling the needs of all four of our parents, all living locally, all behaving like your grandparents, and running a business, and with a brain damaged son.
My husband said sadly one day that our mistake was that we lived too near them.
Had we lived further away, they would have had no choice but accept Social Services help.
While we did lots of things, they could pretend to themselves that they “could manage”.

I would suggest that mum goes away for a week’s holiday.
This has worked for others, a reality check when they find out they really cannot manage with help.

It’s nice to hear that what I have been attempting to get my mum to do is the correct approach. I will talk with my mum tonight and go through your responses and see what she says. I hope I am not too late for my mum seeing as she had a 2nd heart attack when her partner died after she had ceased caring for him. I’m so frightened the same thing will happen but hopefully your husbands wisdom might be able to prevent another death.