Need advice about my grandmother

I have been a paid carer for my 95 year old grandmother since 2013. She has a number of health issues from diabetes, arthritis in her spine, osteoporosis to vertigo which affects her balance, hearing and sight issues and general frailty which comes with old age.

In 2016 my mother came to live with us which has been some help with the shopping and household chores. In that time however my grandmothers health has deteriorated.A year later her mobility started to decline and she was struggling to walk. After taking her to hospital the doctor seemed to imply she simply needed to be more active. He arranged physio therapists and walking aids. Whereas (at least in my experience) most of the elderly want to retain as much of their independence in their old age my grandmother has always preferred relying on others and can be incredibly stubborn. After the physios felt they had done all they could for her she would not keep up with her exercises or simply walk down the hall even with us urging her to do so. She seemed content to simply sit in her chair never moving unless it was to go to the toilet or bedtime.

in 2020 her mobility had another sharp fall but this was accompanied by noticeable cognitive decline. After a stay in hospital were they seemed to suggest she’d had a TMI her mobility was very poor. My mother and I would have to physically lift her out of her chair or bed and lower her onto a commode. She also became very incontinent but refused to wear a pad. There will be stretches in the day were she seems to want the toilet every 20 minutes (and this is with prescribed medication to help with that) and since she gets no exercise and has a big appetite she is quite a weight and worse she rarely makes an effort to help herself up. The worst is that she can get us up several times a night for the toilet, she averages twice a night but can be up to six times. She had brief a stay in a re-ablement center after being discharged from hospital and they told us they had to give her a bit of a telling off as she called them nine times in a night and more than any of the other patients during the day.

For the past few years she is in what could best be described as a second childhood. She can be very demanding and seems to want something conveniently when my mother and I and busy with household chores or doing something for ourselves like…eating. She hates being alone and will scream if we’re both ever out of the room. It’s rare that we’re ever both out of the house, it’s only really if there is a big shop and when we come home she in floods of tears despite only being gone for ten minutes. If we ever grumble about the way she is just looks at us with a blank expression on her face. We’ve told her she is killing us with no sleep and barely eating and both our backs are in constant pain from lifting her but if she responds at with a dismissive sound as if to say “quit yer bellyaching”.

We briefly had carers coming in the mornings to get her out of bed and wash and dress her. We had a financial assessment were everyone told us given her financial situation (she has no savings and at the time would usually have less the £1000 in the bank after her bills were paid) she wouldn’t pay much but in the end they made us pay the full rate so we decided to stop them.

Things have now taken a another drastic turn. Three weeks ago my grandmother got a severe rattly cough and seemed to become very weak. We got an on-call doctor who felt it could be respiratory pneumonia. They took her to hospital right away were the doctor felt that the fluid in her legs was coming into her chest. During her stay she contracted MRSA and they put her on in a room on her own. As I mentioned earlier she hates being alone and we noticed her being isolated from the other patients affected her mentally and every time we visited she would angry and weepy. She was discharged after two weeks but instantly relapsed and had trouble breathing and become unresponsive. Paramedics came out and felt she hadn’t been treated for what she originally went in for, when we went to A & E the doctor suggested she may have been discharged too fast. It was implied that maybe she was close to the end.

Thankfully after treatment she pulled through this latest episode and after another week stay were they discharged her but after being in bed for a week her mobility seems to be almost completely gone and lifting her is more difficult than ever she also seems a lot frailer and has difficulty handling things. In the hospital the nurses had to feed her the meals and we’ve had to carry that over. A slight improvement is that she now agrees to wear pads although she still insists on using the commode. She is also much more confused about things and gets us up in the night not just for the toilet but asking were her breakfast is or can she have a cup of tea.

While she had been in hospital she had agreed with social worker to having carers which surprised us that they thought she had enough mental capacity to make that decision without us there. The carers seem nice enough but they have told us they are not allowed to lift her and that really we shouldn’t be lifting her either both for our own health and if she fell we’d be liable. They suggested leaving her in bed until an occupational therapist can come to assess whether she will ever regain any mobility or if they can use a hoist. She actually seems happy enough in bed but is still very demanding.

The truth is my mother and I feel we’ve reached a point were we cannot care for anymore. We are mentally and physically drained and she needs more care than we can provide. As I said she is incredibly stubborn and has often refused to go into respite for a few weeks. We can’t even get her to go easy on us at home so how do we convince her a care or nursing home is what she needs. There is also the problem of how we can afford it. Despite with her energy bills leaving her with very little in her bank account every month (usually less than £100) another financial assessment suggests we’re still not entitled to any break in the price. When my grandfather passed away he left my mother and I his shares of the house but people have told us they could still take the house from us to pay for her care if she did into a home. We thought maybe broaching the subject of whether she would sign over the house completely to us. In the unlikely event she would we’ve been told they could still take the house away to pay for her care.

I apoligise for the long post but I wanted to convey the bleakness of our situation. Any advice on how to deal with my nan would be gratefully appreciated as would any advise on what help financially we can get.

HI @Angel03 What a nightmare for you.

May I suggest you try calling the CarersUK Helpline. They have a lot of information and can advise on the situation with benefits and the house. If you email in advance you can give much more information and get better advice and support

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Hugs. Maybe also visit care homes.

Hi Angel03

Just wanted to sympathise, I have been sole carer for my 96 year old mother for the last 10 years. She is as bad as your grandmother in all respects. Two months ago I got carers to come in to get her up, washed and dressed in the morning to give me a bit of relief. After much complaining she has now accepted them, I then had to arrange for them to come in the afternoon so I could take the dog out for a walk as I was “disappearIng for too long” …. Sound familiar?.

While the carers for 2 hours a day is great I’m still stuck with the other 22 hours. Ground hog day. I was summoned by her alarm at 2 am to get a lecture on what a lousy carer I am and why can’t I be more like her favourite carer?! Admittedly this was after we had a big fight because she’d got one of her carer’s fired for doing absolutely nothing wrong, she’s trying to manipulate the situation so that she can get her favourite carer every day - no appreciation or consideration for the poor woman having to work 7 days a week! But then there’s no consideration for anyone but themselves.

I’m not at all sure that the advice you’ve been given re selling the house is correct. I don’t have that problem but mother refuses point blank to consider moving into a home so I’m stuck with her anyway.

It’s small consolation but at least you’ve got your mother to share the load with. When one of my sisters come to stay it’s a tremendous relief to have some physical and moral support while they’re here …. and utterly depressing when they leave again.

Hello, Angel. There is a ruling that if the house is occupied by a relative aged over 60, then it cannot be sold to pay for care. Re-assigning the ownership of the house will not make a difference; assessments take into account recent substantial changes like this.

Is your mother over 60?

On the basis of what you have told us, it sounds as though your gran would do well to go into a care home, and there should not be a worry of loosing the house. But I do suggest that you do as Chris suggests, and contact the helpline, and make sure no relevant point of detail has been overlooked.

From various experiences, I’d say do NOT believe anything a social worker tells you when it comes to money matters. Sad, but true. I used to manage accounts for a hospital in Western Australia, so comfortable dealing with money issues. I once reclaimed £8,000 of care fees on mum’s behalf as they’d not applied their rules properly. However, I only got the money back because I refused to be intimidated or bullied by a really nasty senior manager who had an overinflated view of her own importance.