Advice needed - my mother is 24/7 carer for her brother

[Jmeredith]

Hello
I am hoping there is someone here who can offer some advice.
My mother (71) is caring full-time for her brother (74) in his home. He is a double amputee with mouth cancer. He took to his bed 9 months ago and mum's caring role has gradually increased so now she is staying there with him 24 hours a day 7 days a week. He is asleep most of the time and does not speak any more. He does not eat very much or drink much besides Lucozade. There are no carers going in and she has no special equipment or facilities (no disposable sheets or anything). He is on no medication apart from a pill for his prostrate. My father (81) is also staying there as he does not want to be alone in their home without her. He has a heart condition and in my opinion is developing mild dementia as he is very forgetful and has started going through red lights while driving. My mum sends him out on errands as she does not want to leave her brother. My Uncle's place is a one-bedroomed flat so my parents are sleeping on a mattress in the living room on the floor. They have no tv or fridge and my mother is keeping milk in a washing-up bowl. There is no oven. I think they are living on sandwiches from the local shop.
She is convinced he is about to die and refuses to listen when I say to her his death may be months away. My sister urged her to call a doctor the other day as she is worried about the legal situation. The doctor apparently said my uncle would be unlikely to live 'beyond a year'.
The doctor did prescribe some pain medication for my uncle but mum will not get it as she does not want to 'drain the resources of the NHS' as in her opinion my uncle does not need it as is not in pain yet and she will get it if and when he needs it.
She thinks myself and sister and brother are bullying her when we suggest anything that might help the situation. In fact she often will not answer her phone at all as she does not want our 'interference'. I am worried about her and my father as I don't think this situation is sustainable. I am worried about both their mental and physical health. They may get ill ( my father has a chesty cough), or my father will have an accident in his car as he is driving through red lights and seems unable to accurately judge other traffic at roundabouts etc.
My mother is sending my father back home from time to time with dirty sheets but he has no drier so is struggling.
My mother will not contact any of us at all she is determined to do this with no help from anyone whatsoever. We love them both but are at our wits end.
Please advise

[christina 17]

Welcome to the forum Jmeredith

What a dilemma for you all.
Your parents shouldn't be living and coping with the situation that they are now in. And your Uncle may need nursing input very soon.
You and your sister and brother need a plan of action and it's not fair of your parents to not let you help and give support as you can see their health can be at risk. But of course, many of us feel that we can manage and cannot think that there is so much help out there to make life easier for us and our carees.

I think I would try and have a family meeting with your parents and suggest that you are all concerned for their health and that you are there to help support them and to seek advice on how best to help your uncle.

Perhaps also a letter to your uncle's GP outlining all your concerns including that of your parents and their ability of looking after him and of their risks to their health to be taken into consideration.
You could also have an appointment with uncle's GP, even though because of confidentiality he does not need to give you any information, but you can suggest that you think a community or Macmillen nurse needs to be involved.

Someone else is likely to be able to give you advice soon. I don't feel I am experienced enough to know what else to advise.
I would definitely email the advice line and phone for advice from Monday - Fridays.

Take care
Christina17

[Elaine]

Hello JM
Oh my goodness. You must be so stressed with this worry.
I'm going to be blunt. Sorry, I really don't mean to upset you but this sounds like a drastic situation.
What Mum thinks she is doing, I suspect, is her 'duty', caring for her brother, keeping him at home where he 'wants to be' (probably), and 'making the sacrifice', 'not being a bother to the Doctors', 'getting on with it', 'managing' and 'minding her own business'.
What she is actually doing is depriving her brother of proper nursing/ medical care and therefore putting him at risk of neglect and further complications, sacrificing her husband's and her own health and well being and alienating her children. She is not being reasonable which makes me wonder as to her own mental state.
As for Dad''s driving, well that's pretty scary. Whether or not he is beginning to suffer from any kind of failing capacity the possibility that one of his red light episodes might end in someone being killed -a child perhaps, must fill you with horror, especially as you are aware of his dangerous driving.
If he had such an accident, how would you feel, especially if he was badly hurt himself?
I think you and your siblings are going to have to start putting your foot down and call in some big guns. Contact the GP, Social Services and the DVLA. Get help for the three elderlies, gat dad off the road and do some interfering and persuasive bullying if that's what it takes.
Worst, but quite possible, scenario, Uncle is dying, Dad is very unwell and mum has collapsed. What then?
I do hope you and your siblings can find a way through this and that mum begins to co-operate without blaming you. You'll have to grow a very thick skin.
Best of luck.
E.

[Jmeredith]

Thank-you so much for your replies. I am going to cut and paste them into an email to my brother and sister so they can see what you both think on the matter and then we'll go from there.
We were not sure how to go about getting help - or who to contact exactly - my mother is being so irrational she has threatened to cut us off if we interfere (we are in our forties with our own families). Also we wondered if someone from the Social Services called around is she obliged to let them in ? Does she need to give her consent for them to help?
The situation is aggravated by the fact our mother is a retired nurse so believes she knows what is best for my Uncle - to die at home as was his wish when he was still conscious and able to talk - though of course it was a very long time since she qualified so her skills may well be out of date and physically she should not be undertaking this level of care.
She did say his name was down on a hospice list but we do not know if this is true - as she seems determined to nurse him herself and wants no-one else involved. Certainly her mental state is unstable.

[Elaine]

Hi again
Yes she can refuse to let anyone into the flat, but it isn't her flat but her brothers so I'm not sure on that one. As far as I am aware the only people who can enter a home without permission are the police with a warrant and bailiffs with a court order.
You might want to google 'safeguarding issues' and see if anything helpful appears because I think there maybe something about looking after people who are self neglecting or similar. Just a passing thought.
Maybe her GP or the District Nurse would gain access if they 'visited' your uncle and were forewarned to take a good look at your parents too.
Your uncle, as he is bedridden, should be turned every couple of hours or he will develop pressure ulcers. I would think that Mum would struggle with that? Bet they haven't had an Occupational Therapist either as they helpful person can supply, on loan, all sorts of equipment such as a special bed, mattress, hoists, and uncle could get continence products on prescription too. Do any of them have attendance allowance? Uncle should be getting a rates reduction as well.
Try MacMillan nurses. I'm sure you will be able to find the number local to you. They might offer some advice or be able to help.
While you are on the forum, click on the red 'help and advice' button at the top of the page and have a good look round all the links. Lots of info there which may be of use to you.
If you need good 'informed' advice e-mail the help line on here, or call but you mightn't get through straight away.
I don't suppose you have POA for your parents do you?

[Lo_1701]

Hi there. Social Services locally should have an Adult Protection Unit, which you can ring for advice. I've done this, when my own mother refused to eat (much) for 5 weeks.

I'm not exactly sure WHO out of this group will be the adult needing their services - I suspect all three.

Your uncle needs proper medical care, which, as Elaine says, your mother is denying him (out of the best of intentions, but the fact remains, he's not being cared for professionally).
Your Mum needs protecting from herself, it seems. She'll make herself very ill.
Your Dad needs protecting, as do the other users of the road and pavements if he continues to drive whilst impaired by a medical condition that the DVLA needs to know about.

I'm really sorry but it sounds to me like they need separated for their own good. Adult Protection (at least, here in Scotland) can enforce this if they deem it necessary. It's not something your Mum can refuse to cooperate with if the situation is deemed dangerous (and it sounds it).

[bowlingbun]

I was nearly killed by bad driving. You don't want the death of someone on your conscience, so you MUST ring the police and DVLA and get granddad off the road before he does kill someone.
Mum can choose whether or not to care, but it seems to me that there is something behind this steadfast refusal to make the situation easier for herself or her brother. Definitely ring the surgery, maybe start by asking the "Continence Nurse" for advice - perhaps she could "pop in" to see if there was anything she could do. Some doctors are better than others, but I would expect someone from the surgery to be concerned about uncle giving his very serious condition. It might be worth talking to the doctor and asking him to visit on the pretext of visiting their "more senior" patients, or housebound patients. Some doctors will make referrals directly to Social Services, which saves you being seen as the one to blame.
I would expect uncle to need a hospital bed and air mattress to prevent pressure sores.
Can I ask what led to the double amputation?

[Jmeredith]

Thanks again for the additional advice. We knew it was a dangerous situation but felt powerless to intervene. I live a few hours away which doesn't help and my siblings are busy with their own families day-to-day. I think we need to contact their various doctors - if they could intervene somehow without admitting we had alerted them that would be good.
My Uncle's legs were taken off four years ago as the blood supply was not getting through to his feet due to circulatory problems caused by smoking/drinking all his life. He was given a special wheelchair from a mobility charity but never went out again and has been house-bound pretty much all that time and 'gave up'. My mother has supported him throughout this period and he ba=ecame more and more dependent on her and unwilling himself to accept anyone else's help or intervention.

[Pet66]

Hello What a dreadful situation you are in. I really feel for you.
Im unable to offer advice, except that I definitely agreed with stopping your grandad to stop driving. Can you take the keys away from him?
My lovely husband was a brilliant driver, before Dementia started to set in. Then , I became terrified of him getting in the car, being with him in the car( I don't drive) . I hid the keys once, and although he was going mad because he couldn't find them,I knew I was correct. I ordered him a taxi to go to his destination. It was a very hard thing for me to do and I felt so disloyal. Sadly, a couple of days later he had a stroke. Now in a nursing home. The quarrel, the agitation and upset, was better than the devastation I would have felt if he had caused an accident. I realise that now.
I understand how so difficult it will be for you to let the authorities know but somehow I feel you must.

[bowlingbun]

It's not up to him to choose who cares for him. Mum can choose whether or not she helps, it doesn't have to be this way. After all, as I suspected, his condition is entirely self inflicted by his own lifestyle. If mum didn't care for him he would have no option but to have someone else care for him at home, or accept a place in residential care. Why should mum have to give up her entire life because of him?
The only power he has over her is the power she lets him have. He sounds as though he could be very manipulative.
Presumably mum was living with dad before your brother got ill? Is she turning a blind eye to his mental problems so that she doesn't have to involve anyone else? There is a very important issue looming on the horizon. IF dad got so ill that he needed residential care, where would mum live then? Is it his own house, or rented? I'm afraid there are a number of carers here who haven't realised they have a housing problem until it's too late. In one or two instances, ex carers have been left homeless. Don't let this happen to mum.

Although you can't give any practical care to help mum, not appropriate in any case, by joining the forum we may be able to help mum at least accept some help with the caring role, and get her to accept some equipment to make life easier, in the short term at least. However, in some ways the situation sounds like a volcano likely to erupt at any moment.

One final point, uncle is entitled to Attendance Allowance, assuming he's over 65, and mum might be entitled to Carers Allowance. If uncle had a Needs Assessment from Social Services, under some circumstances, SS might give uncle Direct Payments so he could pay mum a proper rate for all the care she is providing. I suspect she's doing it out of love and getting nothing?!