Tricia - Interview 27

Age at interview: 59

Brief Outline: Tricia's mother is 84 years old and has dementia. To begin with Tricia took on a lot of the caring responsibilities. However, as her mother became more confused she moved into a care home. Here she seems much happier and receives good quality of care.

Background: Tricia is married with one grown up son. She is a retired clinical nurse specialist. Ethnic background' White British.

More about me...

Tricia first noticed signs of her mother becoming confused when she started forgetting places she had visited and how to cook certain things. Her mother was admitted into hospital after hurting her back and it was clear to Tricia that her confused state had increased when she returned home. Tricia was also concerned about her mother’s mood as she often stayed in bed and ate very little. A care package had been put in place, but when Tricia voiced her concerns, the healthcare visitors dismissed them and said that she was fine. This was very frustrating for Tricia as she knew her mum was not being her normal self.

During this time her mother was given a CT scan and initially Tricia was not told the results. For months Tricia and her brother tried to get the results but with no success and eventually they got her mother to sign consent. Tricia describes how it was difficult to persuade her mum to sign this consent while also being careful not to alarm her. Once she had obtained consent to be involved in her mother’s healthcare Tricia managed to get antidepressants prescribed and also demanded a proper mental health assessment for her mother.

Tricia’s mother had a mental health assessment at the local hospital and to Tricia’s dismay scored well, so again her concerns were dismissed. This was very frustrating for Tricia because she was witnessing her mother's confused behaviour daily. She recalls examples such as her mother putting refrigerated food into cupboards and not taking care of her personal hygiene. During this time Tricia’s mother also became paranoid; her confusion meant she was constantly losing things, but she believed that people were stealing them. She often accused Tricia of stealing clothes and change out of her purse, which was very upsetting for Tricia.

Eventually a social worker visited to assess Tricia’s mother. The social worker recorded a whole history and actually witnessed her mother’s confused behaviour first hand. The social worker confirmed there was a problem and Tricia describes how she felt her worries had finally been validated. She then arranged to change GPs and for a psychiatrist to visit. The psychiatrist listened very attentively and immediately diagnosed Tricia’s mother with dementia and paranoia. Tricia continued with a lot of the caring responsibilities with help from her family and private carers. Tricia also has cancer and is often left with little energy after treatment, but whatever energy she did have she used to care for her mum.

Recently, Tricia’s mother was admitted to hospital after falling and breaking her hip. After treatment, the hospital assessed that she was fit enough to go home rather than to a rehabilitation centre. However, Tricia and her mother’s carers felt she was not well enough and believed her dementia had been completely overlooked. Tricia’s mother needed 24 hour care and they decided a care home would be the safest place for her. Tricia found a care home which has lots of activities and good quality care. Now her mother is settled in this care home and Tricia describes how although her mum does not necessarily know where she is, she is very happy and appears less stressed now.

Tricia’s mother being happy in a care home has given Tricia and her family great relief. The private care her mother has needed throughout has been very expensive and Tricia feels lucky that her mum had enough savings to afford it. Tricia advises other people in similar situations to be persistent and get help as early as possible.

 

Tricia finds it helpful that her brother has power of attorney for their mother so she doesn't...

I mean we had to pay for all this, that’s the other thing isn’t it? My brother in [town name], he’s an accountant so he, there’s lots of forms to fill in and he got power, power of attorney, or whatever they call it nowadays, so he was sorting out her money.

Yes, that so that really shared the burden. I don’t know if I could have been able to manage the financial aspects of it as, as well as the practical everyday things I was doing for Mum. So he took that off my shoulders so I would go out and buy all the shopping for Mum and then send him the bills so that he could reimburse me, that sort of thing.

And I’d have to buy obviously things for Mum you know, underwear or whatever, you just, but he would just reimburse me for that. But the main thing was I didn’t have to worry about it. He could he could sort all that out for me and he was really good. I mean he’s an accountant. He works full time. He has to go to different companies so he couldn’t come down every weekend but he’d come down as much as he could and that was really helpful to have somebody else doing it.
 

Tricia was relieved when a woman from the care agency convinced her mum to accept a care package.

So what my, my brother lives in [town name] and what we did was we, we telephoned round to try and get a package of care for my mother at home, which we found a really good care agency locally and the lady came round and had an assessment with my mother and my mother was really reluctant to have anyone coming in the house. That was a huge obstacle to get her to agree to it. It was really hard to get her to accept that she needed any help because she’d, I’d say, “Well, you know, they could help you with having, having a bath.” “I don’t need anyone to help me have a bath.” “They could help you cook and make sure you have a meal, cook a meal and make sure you have something to eat because you’re losing weight.” And she would say, “Oh, I’ve only lost weight because I’ve been in hospital.” But she couldn’t concentrate enough to sit down and eat a meal because she’d start to eat it and then just wander off and you could see the weight dropping off her. So it was really hard to get her to agree to have a package of care but the lady that came round was really skilled and, and sold it to her really but she, so we had carers coming in twice a day. So that that did, it reduced my stress levels knowing that this, someone was coming in. 

Tricia felt that the quality of care varied, particularly the care worker's ability to recognise...

It was like the most vulnerable people being looked after by the most unskilled people, that was the thing. I mean things like you’d want your mum to have a bath at least twice a week, and things like in the care plan it was that she was to have a bath on certain days of the week, but like an inexperienced carer would say things like, “Oh, would you like a bath this morning, [mother’s name]?” My mum would say, “Oh, no, dear. That’s all right. I’ve had a wash.” Which she hadn’t and of course, the carer, young carer would just think, “Oh, that’s okay then. She doesn’t want to have a bath.” But you can’t do that. It’s and the more experienced carers would like run the bath and, you know, and be able to say, jolly her along and say, “Oh, that’s, you know, got the bath ready for you, [mother’s name]. You know, I’ll help you with this, that.” You know, it’s skills isn’t it? Having the skills to, to work with people. 

Moving her mother, who had dementia, into a home was a positive decision. Tricia mother's face...

So after a lot of heart searching I felt the care home was the best place for her.

And is that a private care home?

Yes.

So we had to make the decision to sell up, she wasn’t well enough to go back home. Her mental state had deteriorated. She’d never have been able to manage at home.

And how is it now for you that now that she is being cared for?

Well, it’s just a huge relief and to know that she’s in there and she’s happy and she’s, she’s being fed and looked after properly, having proper baths. There’s a hairdresser’s there. They launder her clothes so she always looks nice. They take her out on trips. They have events, things going on in the in the care home. So she doesn’t know where she is. She doesn’t know where she is. She can’t describe it to anybody but, for the moment, she’s living in the moment and in that moment she’s happy.

The stress has gone from her face because she often looked really stressed at home; really worried, because I think she was trying to make sense of everything and couldn’t. And that showed on her face and she, her whole face is relaxed and.

And how about your.

Everything.

And how about your stress level?

Well, it’s, I mean I still obviously feel that I’m taking responsibility to my mother because I’m obviously still going to see her, making sure everything is all right and that they are looking after her okay. So still doing that but the stress levels are really declined and, you know, I just can’t tell you what a, what a difference it’s made. I don’t know how much longer we could have kept on trying to do it and looking back, I think we did a good job. We kept her at home as long as we could.

I don’t really think we could have done anymore.

No. No.

I really don’t.
 

Tricia didn't want to move her mother into a care home but as her mother's dementia progressed...

So you talked about having to get private care in. Was that expensive? How did you organise that?

It’s enormously, it’s enormously expensive. You can’t believe the price of it and also, it things like they come and do an assessment and you’re, they come and sit in the, in the living room. They don’t know Mum and, of course, there’s this thing about believing everything Mum says because they’d say, “And do you cook, do you get a meal for yourself during the day?” Of course, Mum would say, “Yes.” And she, she’d, so you’d then have to tell her afterwards exactly, “Well, actually, she can’t do this and she can’t do that and she had a fire in the kitchen.” And this sort of thing. So then do a care plan to suit reality really.

So she used to come for, you know, an hour is, is very expensive and there’s things like they even break it down to sort of half an hour, but to us whatever it cost it was going to be worth it because we didn’t want her to have to go into a care home. We wanted to keep her in her own home as long as we could so to us it was worth it.

So the care she needed you didn’t feel was available through your GP.

There’s nothing available.

And the NHS?

No. There’s nothing, there was nothing available. The only thing available through the, well, sort of, because the only thing, through social services was the day centre.

Right.

Which I think is superb for them, but no, the district nurses don’t even come round and help, give somebody a bath anymore, no. It would only be if she, you know, if somebody’s actually physically unwell in bed, they would sort of get involved, no, it’s all private. It’s all private. God knows what happens when people haven’t got the money to pay for it.

But we’d, I mean we didn’t pay for it. Luckily, my mother had money in the bank and everything, so my brother arranged for her, for the care that came through the agency to be paid out of my mother’s bank account.

So we got into this situation where the hospital were saying she was well enough to go home but I didn’t think she was and the care agency didn’t think she was. So the thing was I had to find a care home, place in a care home for her quickly because the hospital were saying, “We need this bed.” So I had to go out and look for a care, look for somewhere. So I had to, they gave me a book of all the different nursing homes so I had to look through the try and find one and I went to visit some. They were awful, awful places that smelt of urine and oh, it was just awful, sat around, the bedrooms were horrible, the linen was awful, I felt physically sick. I thought, “I can’t send my mother here.”

I found a really nice one locally and they had they had to go and do an assessment and they took her and I looked into having care at home for my mother and to have someone stay all night, it would cost some something like a hundred pound a night and that person would just be paid for sitting in a chair. They wouldn’t, they weren’t allowed to do any care for my mother. They couldn’t, you know, if she was incontinent, they wouldn’t be able to deal with it. They were just a sitter. So that alone and the day care would have been seven hundred pounds a week and then I’d obviously, I mean the night care so the day care would be more. So after a lot of heart searching I felt the care home was the best place for her.

And is that a private care home?

Yes. So we had to make the decision to sell up, she wasn’t well enough to go back home. Her mental state