Carers Week 8-14 June - 'Making Caring Visible'

As 8-14 June is Carers week and the theme is “Making Caring Visible” we thought we would focus on the experiences of two of our DoH colleagues. Tracey and Hazel have kindly shared their real stories of caring for their loved ones, the challenges and struggles and the added complications during the current situation. Thanks to both for taking the time to share these very personal reflections with us all.

Tracy Hodgen, Programme Management Unit shares her family’s story

My husband David became a carer to his elderly mother around 3 years ago after she took ill after a long period in hospital which saw her health rapidly decline.

The independent woman that she had been, was now heavily reliant on her only child to be her sole carer. As well as a decline in her physical health her mental health over the next few years also was declining fast too.

Tracy Hodgen and family
Tracy Hodgen and family

During the time after she came home from hospital David was her sole carer as she couldn’t get carers at this stage. As well as this David was also holding down a full time job and also being a husband and dad. He was dedicated to looking after his mum just like she had looked after him when he was ill as a child with chronic asthma. Initially, things worked well but as both her physical and mental health declined over the past 3 years it was taking its toll on him mentally too. I helped him out too with her shopping and medication at weekends but with me also working full time this was also proving difficult but we just did it as we had no choice.

In November 2019 David’s mum was rushed into hospital in an ambulance as he had found her collapsed in her house due to her poor mobility and this proved to be a game changer for David and his life as a sole carer. Before she could be released from hospital David had asked that his mum could be considered for a care package as her health and mobility had declined so much. With David working full time he needed the reassurance of carers to give him peace of mind that his mum was looked after while he was at work.

The social worker assigned to David’s mum agreed that this had to be implemented as soon as possible but it was a very long and arduous process involving many factors, doctors, trust community care teams, social workers, physios, occupational therapists, the list goes on. This alone was very stressful for David and us as a family unit. Discussions and decisions needed to be made coupled with numerous appointments to assess her needs prior to her hospital discharge. Balancing all of this while still working and running our own house with our daughter and her needs. This was a very trying and stressful time for us as a family, but it was taking its toll on David particularly who had to make all the decisions as he was an only child and the buck stopped with him.

Certainly he could discuss it with me but I made sure the final decision was his. The stress that this process caused to David was clearly visible for us all to see. As a family unit we supported David through this very difficult time during which his mum’s health was declining rapidly.

After weeks of hard work and discussions carers were put in place and his mum was discharged from hospital to a very new way of living for her, and for David too. Initially it was very stressful as his mum didn’t want the carers into her home. It also became apparent that her mental health had taken a steep decline as well as her physical health. In February 2020 David’s mum was diagnosed with vascular dementia. His mum doesn’t want to go into a home and her wish is to stay in her own home. To date we have been able to support her with the help of four carers a day coming out to make her meals and provide her with personal care. It hasn’t been an easy journey but as a family we have supported each other throughout.

Then COVID-19 hit the world! David’s mum’s medication was the first new difficulty we encountered, her medication is not suitable to be put into a blister pack so the carers were unable to give her the daily medication she required. As a family we were unable to help as we could not go into her home. I have diabetes and was self-isolating so David had to go every day to give his mum her medication and do her shopping. He had to get PPE and socially distance while explaining to her he can’t come closer. She was confused and frustrated due to her lack of comprehension, why was everyone she saw dressed up like they would catch something from her. The health situation caused by COVID-19 wasn’t making any sense to her, she was confused every day by the carers coming in with their PPE on and David coming into see her but not being able to come near her. This was tough for both of them. Every day David is still telling her about the current
situation which she forgets and asks the same questions. David is very patient with her and answers these questions on a daily basis.

Clearly this is having a major impact on him, he is not able to hug his mum or let her hug him. She hasn’t been able to see her grandchildren and great grandson which is difficult and confusing for her as she just doesn’t understand the reasons why. David was
furloughed from work in April and this was great as it gave him some much needed time to take a breath from the madness of the current situation and try to relax as best he can. He continues to give his mum her daily medication and explains to her daily about the current situation but watching his mum decline each day is so hard for him even though he accepts he has been very blessed to have her as she is now 91.

David has given his all as a son and her sole carer for the last 3 years. The peace of mind we now have as a family as a result of the team of carers is immense. It has meant that David could actually go to work in the knowledge that the carers would contact him if required. During recent weeks David’s mum took ill at home, the carer contacted us to say she wasn’t at all well when she went in that morning to give her breakfast. Her GP was called and she explained to David that she had a kidney infection and a temperature. It was likely that if she went to hospital she would end up on a covid ward due to her high temperature, possibly caused by the infection. As she is highly vulnerable there was a chance that she may not have come home again. David had to make a difficult decision there and then, not knowing if he was making the right one. He decided to keep her in her own home. 

The GP was able to prescribe antibiotics and arranged for an enhanced nursing team to come out to the house every day. This amazing team were able to carry out the duties that the nurses in the hospital would do but in the comfort of her own home. She has now recovered from her infection and is happy in her own world of blissful ignorance especially in these trying times. Some days are more of a struggle than others. Who knows what the future holds but we as a family will continue to support David. Hopefully when restrictions are eased we will be able to help him out again to try and alleviate some of the pressure that these trying times have brought him. The NHS have been amazing throughout her illness and we as a family couldn’t actually continue to keep her in her own home without them.

Thank you NHS you are amazing!

Hazel Iveston from Hospital Services Reform Directorate shares her story of caring for her partner

I work full-time but I am also a carer for my partner who had a stroke in December 2014, which left him with a brain injury and disability problems. He doesn’t need total care just the times when he goes through a ‘blue period’.

When COVID-19 started I thought oh no, how will I cope as with everyone life had to change for all of us, self-isolation was the thing, could I cope being home 24/7.

A couple of weeks in, my partner went through a ‘blue period’ which happens quite regularly but seemed worse with COVID-19 lockdown. I had gone to collect his medication from the chemist and on my way up home I got a phone call from my step daughter to say that her Dad had telephoned and seemed very confused and couldn’t remember where he was.

Luckily, I was only a couple of minutes from home, when I got there I discovered that my partner had been in the wars, blood running down his face – goodness knows what had happened and he was so confused. Luckily I was working from home because what could I have done from work!

There has been advantages for me working from home, when my partner is not great I can be there to help him, although with my mental health, I would prefer to come in the odd time. It was a novelty to work home for the first few weeks, but personally for my mindfulness it is good to come into the office once in a while, you could say it is a bit of ‘me’ time and if there are other staff in – a bit of interaction as well.

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