Gratuidad del cargo de patrono y régimen de contratación de

The final subtheme captures participants unremitting apprehension about what their future had in store for them and their adult family member with an intellectual disability. Participants in general struggled with the initial concept of future planning and found it difficult to articulate their perceptions on what future planning entailed. It was evident that some participants were becoming overwhelmed with the topic of future planning and one participant identified that “I hadn’t really thought about it till now” P5 emphasising a lack of awareness in some cases and moreover one participant expressed feeling inadequate at their quality of response. “maybe we’re not the best ones to be talking about future planning we haven’t really got a plan” P4 Most participants had Identified their own ageing and acknowledged that they were not as physically fit as the years had progressed. Participants were clearly concerned about their physical health. “I am getting older and I am not able for it as maybe I was before and either is (husband)” P7. Some of the carer’s had suffered deteriorated health, “(husband) had his hip done three years ago now”, P4 Similarly another participant expressed that he suffers with arthritis

- 89 -

that can pose a challenge, “I suffer from the arthritis, it gets bad now and then I always find the weather takes its toll on me and I had the gallstones removed there last year” P6. Others, expressed that the extent of caregiving over the years was beginning to take its toll, “I hurt my back years ago carrying (son) and I suffer with it since” P7.

Carers were clearly worried about the future and their ability to continue caring with one participant raising the question.

“what will happen him when or if I go, I don’t know?” P10

Participants expressed their emotional stress and apprehension regarding their deteriorating health and the impact it was having on their caring abilities. It was clear that carer’s physical and mental health acted as a tremendous stressor for carers with one participant indicating that they could not afford to be slowing done or becoming ill.

“I was diagnosed with early Alzheimer’s back in February, it was an awful shock to me, I can’t afford to be getting ill, I need to be there for her, I just knew in my heart though something wasn’t right. Of course, my initial thought was(daughter) and what’s going to happen, my own mother died from Alzheimer’s so I knew how quick things can get bad. I had to start planning so she would be safe. P9

Another participant indicated that her mental health was affected with the level of stress and worry she had as being a responsible carer. The carer expressed that she had become so overwhelmed with having to stay in good health that she became obsessed with seeing her G.P on a regular basis and had to be reassured that she was okay.

“I went to the doctor, I thought I was getting something in my head, thank god there was nothing wrong, private insurance, and he looked at me when I came out and do you know what he said, you keep away from the doctors, and you will do the hundred so I’m hoping I will do the hundred”, P10

Some participants showed an element of denial about the inevitability that they could have some plans in place that may assist them in the future.

- 90 -

“we all wear blinkers when it comes to that because there is very little we can do”, P10

Other participants appeared to be dismissive in relation to identifying their perception of future planning. It appeared that there was an avoidance in relation to engaging with topic,

“sure, you can’t really plan too far ahead because god knows what the next day will bring” P2 Other carers spoke of an unforeseen future, due to a failure in securing appropriate placements, inability to identify plans with family members or due to limited resources. Participant one, P1, referred to their failure in trying to secure a place for their family member within a suitable disability service and the pressure they felt to accept a service that was their least preferred option. They recalled the “endless waiting lists”, “wait” for someone to get back to you, “the catchment areas, we didn’t qualify for” and felt that they had no other option but to take a nursing home placement which they had qualified for “the fair deal”. The participant felt under pressure to secure a placement due to the increased strains they were faced with at home caregiving, “we had only two weeks”, “we mightn’t get it the next time”, “we had to take it”. Some participants had no choice but to continue their caring duties as there appeared to be no alternative. They had either tried and failed to find suitable accommodation and support for their loved ones but were unable to do so because of a lack of accessible information, support and accommodation. Many carers said they had been worried about this for most of their lives, with increasing anxiety as they aged and suffered deteriorating health. One carer highlighted her regular visits to the doctor as she was afraid of anything happening to her,

“I went to the doctor again, I thought I was getting something in my head, private insurance, thank god there was nothing wrong and he looked at me again when I came out, you keep away from the doctor’s and you’ll do the 100, so I’m hoping”.

A lack of security about what would happen should they die or suddenly become ill exacerbated these concerns and worry. Two carer’s were so desperately concerned about the future that they both said they might prefer their son and daughter to die before they do, demonstrating the hopelessness many carers feel about their uncertain future.

- 91 -

“I’m hoping that I will do the 100 years. and deep down and maybe, although I hate saying it that (son) will be gone before I will. You know and that’s a terrible wish for a child, I know.” P10 hope that we can go together or that he will go before me, does that make me awful” P9

For parent carers in this study, the reality that their offspring would outlive them was becoming more apparent. Some participants were so worried about the outlook of their future that they hoped that their family member would die before they do so that they could keep caring for them till the end and know they are okay and not having to depend on anyone or anything else to look after their loved one.

The primary concern for all participants was what would happen to their family member. Some carers did not know exactly what they were going to do but in some cases, knew what they had hoped for and what they hoped not for. Their hopes included not only for their physical care to be looked after but for their family member to be safe and feel secure, happy and loved. Throughout the interviews it was evident the heartache and worry participants were going through at the thought of transferring responsibility of caring over to someone else. One participant who had not engaged in future planning had become visually upset, the participant had envisaged that her other daughter would look out for her family member with an intellectual disability if anything would happen, but her daughter had recently been diagnosed with multiple sclerosis and now felt that this plan was no longer dependable. The participant described how she was afraid to approach the subject with her daughter, and felt that she would be selfish in putting more stress and strain on her other daughter.

“my daughter, she was always there to rely on, she’s great to look after (son), whenever we were stuck she would always be at the other end of the phone, even with her children, and they’re very small yet. But a few months back she got a bit of news, she’s been diagnosed with MS so that put a change in her life and a damper on things. I suppose I always felt I could rely on her to look after xxx if something you know happened. (pause/emotional). Now how can I she has so much on her plate and I’m afraid to ask. I can’t ask, it wouldn’t be right, it wouldn’t be fair.” P9

- 92 -

Moreover, it appears that relying on somebody else or service professionals to care for their family member with the same love, care and consideration remains a worry. Participants were concerned over the continuity of care if their family member made a transition to alternative care arrangements. Among their concerns were that they may not be able to give the same amount of “time” P9 to their family members or how they would be treated and the fear that they would be overlooked within a service due to the fact their family member may be “quiet” P10 and reluctant to “speak up” P10.

The reliability of future planning appears to be a worry among ageing carers, particularly for those who are relying on other family members to be active members of the plans in question. As life progresses and carers have identified their ageing, another issue is the awareness of their other family members ageing through their lifespan where they are undergoing a series of changes and adaptions. Particularly, where there is expectation that a family member will take on the caring role for their family member with an intellectual disability. Some carers referred to their other family members new responsibilities including children, living locations and work opportunities and worried that whether these commitments might hinder or affect their involvement in being available to help care for their family member with a disability such a time comes where their parent or main carer is not. In some cases, the inevitability of change may influence carers willingness to make future plans.

“I couldn’t say to any of them that now you mind (son) and I’ll give you x or this or that, I couldn’t do it. Because you don’t know will they want to do it, will they be there to do it, will it be a wife, a husband so you can’t do it, (non- disabled daughter) is a physio and she is gone in the morning before 8 she has to try and get the bus up in (name of place) because it doesn’t come down here early enough for her to leave for work, I used take the kids till (son with an intellectual disability) started having his blips you see in the morning. Everything seemed to start happening together of course, and look the rest of them, my son across the road has two children and they both have two jobs, I don’t know, will they have time, it was different before” P10.

- 93 -

However not all families wanted to rely on other family members to provide care, in some cases, there was no other family member to provide care.

“I mean the two boys are off doing their own thing, (non-disabled son) is over London, he has a wife and he’s 2 little boys and xx is over in Saudi Arabia, I don’t know will they ever come home. I mean they do come home alright but it’s a flying visit” P4

Some carers were experiencing substantial inner conflict about the best course of action to take regarding future plans. While they wanted their family member to live with them for as long as possible, they were considering what would be best for their family member in the longer term fearing a crisis occurring capturing the subtheme an unforeseen future.

4.6 Chapter Summary

The four themes emerging from the data analysis are presented above. The themes, derived from analysis of ten participant interviews utilising Burnard’s (2011) framework for thematic content analysis were developing an understanding, extent of future planning, dependability and unremitting apprehension. Participant quotes that illuminated human experience and illustrated findings were included where deemed appropriated. Furthermore, a brief interpretation of the data was offered. A more detailed discussion and critical analysis of the data and findings with regard to current literature will take in chapter five.

- 94 -