Theme: Impacts on Owners – “we have a ticking time bomb”
Owning a dog with idiopathic epilepsy had a significant impact on the quality of life of owners, and owner lifestyle. Following their dog’s initial seizure all interviewees recalled feeling negative emotions such as being distraught, fearful and uncertain regarding disease progression. Prior experience with canine epilepsy was rare, and owners were shocked and distressed by the appearance of the seizures.
I was just distraught when we first found out [he had epilepsy], didn’t want to leave him at all, I wouldn’t even go to the shop. [Interview 4]
When [the first seizure] happened, we were devastated, [my husband] just thought he was dead when he fell off the bed… [Interview 9]
Seizures were very distressing to witness, and often this was intensified due to the unpredictable nature of idiopathic epilepsy e.g. when and how often seizures occur. Owners searched for prodromal signs (pre-seizure behavioural changes) or seizure triggers to try to anticipate when seizures were coming, which they felt might give them a greater sense of control. Owners described the unpredictable and sometimes inconvenient timing of their dog’s seizures, with some participants discussing impacts on sleep and wellbeing as a result.
It has an impact on my sleep sometimes, when it’s late at night and she wants me to stay down here after she’s had the fit and I’ve got to get up for work in the morning, I think that’s the, it’s the timing of them is the biggest impact. [Interview 16]
Many interviewees acknowledged that their quality of life was reduced in some way by their dog’s epilepsy. Other owners reported experiencing lifestyle changes, but avoided directly describing their quality of life as being affected. However, the changes described often appeared to involve significant effort, commitment and lifestyle restriction. Often limitations related to strict medication schedules (with dogs requiring drug administration twice or three times per day at set times), difficulty finding assistance in caring for the dog, and an inability to leave the house for leisure activities or vacations. Owners frequently stated that they did not mind making these adjustments for their pet, usually highlighting the close emotional bond between themselves and their dog, but sometimes citing other emotional reasons such as guilt. Some participants also reported that their employment had changed due to their dog’s idiopathic epilepsy. Some owners had reduced their working hours or started working from home, whereas others had ceased working entirely to care for their dog.
Well [my quality of life is] pretty bad now […] I can’t go out and get a proper job anymore, I’m not really earning much money from doing this [freelance work] but I’m doing this because I have to be around, I’m doing everything for him but I’m not really earning a living… [Interview 3]
Yes, I’ve changed, I don’t go on holiday unless she can come, I changed the way my routine [is], I’ve changed all the things I can do, that’s definitely affected things, but it’s alright, I don’t mind, it’s not her fault she’s got it and it’s my fault I bought her from a dodgy breeder. [Interview 11]
Contrastingly, a couple of participants discussed that caring for their dogs did not significantly impact their day-to-day life or emotions anymore. This represented a small minority of participants and was linked to seizure control. This finding was primarily discussed by an interviewee whose dog had not had a seizure for a number of years.
I think now because we’ve got the epilepsy under control, I’m just touching wood when I say this, we don’t actually day to day tend to think about the epilepsy too much. [Interview 5]
The vast majority of participants discussed having a strong dog-owner bond. Some thought that this bond was strengthened due to their dog having epilepsy, and the associated commitments they had made to care for them. Sometimes the relationship was likened to those with human family members, and several owners reflected that their relationship with their dog with epilepsy was closer, or in other ways different, compared to those with other dogs they currently or previously owned.
I mean we were always completely inseparable anyway, as I say, he’s my baby, he’s my absolutely everything, but yeah, now he’s just my poorly baby. [Interview 4]
I mean, maybe, [my dog with epilepsy] might be my favourite but don’t tell [my other dog][laughs], shh. Only because of this, he’s been through quite a lot… [Interview 18]
No participants described having a less emotionally close relationship due to their dog having idiopathic epilepsy, although a couple of interviewees reported that the impacts of caring for a dog with idiopathic epilepsy potentially reduced the enjoyment they got from owning their dog.
I suppose I can’t, it sounds awful, but I can’t enjoy him as much as I used to, but I think that’s my anxiety. [Interview 10]
This bond also caused owners to become more involved in decision-making regarding their dog’s veterinary care in a number of cases. Due to the close dog-owner bond and stress regarding their dog’s future, owners often felt that they needed to be a strong spokesperson for their dog when discussing their healthcare. Some owners felt that they were more able to contribute to discussions with their veterinary surgeon regarding treatments and on-going management due to having a better understanding than their veterinary surgeon of the care involved in managing their dog at home.
Perhaps some people won’t be confident enough to do that but I know my dog very well and I think that I’m probably the best-qualified person to decide what is best for him. [Interview 1]
Owners were commonly frustrated and disappointed with lack of treatment success and on-going medication side effects, and expressed feelings of helplessness. Sometimes this was again linked to the dog-owner relationship, for instance in the case of side effects where owners felt their dog’s demeanour or personality was affected. However, in other instances it was linked to lifestyle-related or financial issues rather than being a purely emotional impact. In a number of cases these feelings of helplessness were also associated with despair, where owners had lost hope of their dog’s condition improving.
I think it’s like when you have a child, you’re helpless. If something happens to them you want to take that pain away, and nothing you can do, despite knowing what’s happening, you feel, it’s that helplessness. [Interview 7]
It was sad, it was really upsetting, because he really, he changed so much with the drugs as well, he just, he was a different dog. [Interview 18]
Most participants kept records of their dog’s epilepsy. Typically this had initially been recommended by their veterinary surgeon, but owners included greater detail than anticipated such as medication doses, adjunctive therapies, laboratory test results, and the lunar calendar; the latter due to beliefs it affected the likelihood of a seizure occurring. This dedication and attention to detail seemed again to relate to the unpredictability of the seizures, and was linked to a search for patterns in their dog’s seizure activity. Often owners spoke positively about keeping these records, due to the potential to use them to benefit the dog’s care, and they appeared to be a beneficial tool not only for veterinary surgeons, but also for owners to monitor their dog’s progress at home and search for possible triggers.
…so when you get the spreadsheet, there’s all the different dates and the different levels and everything. So, yes, so you’ve got one for all her fits, blood results and supplements and things that she’s on… [Interview 16]
The majority of interviewees reported that other people external to the household struggled to understand the lifestyle, emotional and logistical impacts of owning a dog with epilepsy. This lack of understanding sometimes caused feelings of isolation, and was one of the most significant contributors to a reduced quality of life for some owners. Due to the episodic nature of idiopathic epilepsy, and many dogs appearing normal between seizures, owners often believed that other people with no prior experience of the condition could not appreciate the potential impact of the seizures, and were not understanding of the owner’s commitments. Feelings of isolation were exacerbated where owners cancelled or avoided social events due to fear of leaving their dog.
…I fret and stress and everything and I could see my friend getting really exasperated with me, but that night he had a seizure in front of her and she just burst into tears and it just changed her view entirely… [Interview 4]
…I’ll cancel events, and I have done many times, you know, family things and that where he’s just not quite seemed right. [Interview 21]
Fear of judgement from others and feelings of helplessness also increased information seeking behaviour and use of the Internet in some instances. Many participants discussed the use of online groups or social media pages as a source of additional support, with a number going on to discuss the community aspects both positively and negatively. There were some perceived benefits, including peer-peer emotional support and the availability of anecdotal evidence regarding medication side effects and novel management methods. However, some owners felt accessing these groups just added to their stress and was a source of negativity, with discussions of drug-refractory cases or emergency situations (e.g. status epilepticus; prolonged, uncontrollable seizures) adding to their fears for their own dog.
…there’s people that are on those forums and they’re new to it, and their world has just ended, they love their dog to bits, and they’ve had a seizure and they can’t cope, and to see them in that state, they’re so distraught… [Interview 7]
The forums I found a bit scary and overwhelming, because it was clearly full of people that had even less of an idea than me… [Interview 4]
Overall, having a dog with idiopathic epilepsy had a number of significant impacts on the lives of owners. Many owners acknowledged that their own quality of life had deteriorated, or at the very least their lifestyle was significantly different compared to before their dog’s diagnosis. This was not the case for every participant, and the impact on quality of life appeared related to the dog’s seizure frequency and the extent of the emotional benefits reaped from the dog-owner bond.