Kate first became a carer when her husband was diagnosed with cancer in May 2022. At first, Kate caring responsibilities were not difficult to navigate, and she and her husband were hopeful that the prognosis would be positive, that treatments would work, and Kate’s husband would go into remission and have many more quality years to spend with their family as so many other people have done.
Unfortunately, this was not the case and in January 2023, after many treatments and hospital visits, Kate’s husband’s cancer was pronounced terminal. Kate and her husband were given the news that he had two years to live. All treatments stopped and he was discharged from the hospital and enrolled under local hospice care.
As her husband’s illness has progressed, Kate’s caring role gradually increased. Before the cancer diagnosis became terminal, Kate was responsible for driving her husband to every appointment, caring for him after treatments, and helping him manage between treatments. Since the terminal diagnosis, Kate finds that not only her caring duties have increased, but also that she is also shouldering more of the household and family responsibilities.
Future Planning in Partnership
Kate and her husband have a family of three children – a 20-year-old son, two teenage daughters, and two dogs. For years, Kate, and her husband both shared many of the household and family responsibilities.
“My husband and I have always worked in partnership to raise our children and manage our household. To face doing everything on my own and managing all the responsibility is daunting and difficult.”
Alongside getting to grips with the terminal diagnoses, where possible, Kate and her husband have both tried to be proactive and practical. Together, they have faced the difficult journey of creating a plan for the family’s future, without him. They have tried to think of everything that will make the journey easier for everyone in the family.
For example, Kate says that her husband has usually been responsible for things like ensuring that the family vehicles are maintained, yard maintenance, and simple household repairs. Kate says he is creating a written manual for Kate to refer to after he has passed and has listed information for things such as the dates the family car will need servicing and the phone numbers and addresses of the mechanics that last serviced the car.
Making Difficult Decisions
During this process there were many complex decisions to be made and not all those decisions were in their control. At the time of the diagnosis, Kate’s husband was enlisted with the military and the family were living in rented military accommodation in Cambridgeshire. After her husband passed, they would no longer be entitled to live in that military accommodation.
Bravely, with the future of their young family in mind, Kate and her husband made the decision to relocate to Wiltshire and purchase their own house, so that when Kate’s husband inevitably passed, they would not also lose their rented military accommodation home at the same time. The move to Wiltshire would allow their now teenage daughters, to have the stability of a secure home and no school disruption during their secondary school years.
Although they were a military family and very familiar with moving, (the family have moved a total of seven times in the past 20 years), this move was particularly hard. Kate and her family were moving to a new area, and this meant they would leave the support networks that they had built up in Cambridgeshire over the past seven years, at a time when these support networks were critically needed.
Increased household responsibilities
Soon after the move, Kate’s caring and family responsibilities slowly began to increase. Her husband gradually became less capable, his energy declined, and his support needs increased. Kate found she was increasingly doing more on her own.
One of the first things Kate had to get used to was being the main driver for the family. Before he became ill, Kate’s husband was the primary car driver on family outings. One of their first changes was to replace the big family car for a smaller car that Kate felt confident and comfortable driving everyone around in. Unfortunately, the smaller car was not able to fit both dogs as well as everyone in the family.
Kate and her family did pursue rehoming the larger of the two dogs to make life a bit easier for everyone involved. They found and worked with a good organisation who found a new owner for the dog. However, Kate and her family found it too emotionally difficult and could not go through with rehoming. This dog had been part of their family, for many years, and they could not in good conscience give him away.
Emergency situation highlights lack of support
Not long after their move, Kate felt the loss of the family’s support networks that had been built up over the past 7 years in their old home in Cambridgeshire. One of her teenage daughters became homesick at an overnight camp. Kate was called in the middle of the night and required to drive over 6 hours one way to pick her up immediately from the camp’s location.
Due to her husband’s condition, Kate was not able to leave him on his own, and she was also not able to leave their other teenage daughter on her own either. (Their 20-year-old son was not in the vicinity at the time). Kate tried unsuccessfully to call the two friends she had recently met in the area, to see if they could help in any way, but both were not available.
Therefore, in the middle of the night, Kate bundled her terminally ill husband, her other teenage daughter, the smaller of the two dogs to make the 12-hour round trip journey to pick up her daughter from camp. Because there was no room to fit the bigger dog in the car with everyone else in it. Kate made the difficult decision to leave the dog secure inside at home, with plenty of food and water, even though she would ordinarily not have done this. Kate says,
“If there was ever a time that we could do with a set of Grandparents, now would be ideal!”
Unfortunately, Kate’s husband’s parents have both passed away, and Kate’s own father passed away 12 years ago from Motor Neuron disease. Kate’s mother lives an hour away, but she has been diagnosed with dementia and would not have been able to help.
Kate managed to bring her daughter home safely that night, but the ordeal really highlighted just how much support Kate needs as the primary carer for her husband and made her question in hindsight, if moving to Wiltshire really was the right thing for her to do. Kate says,
“There really is nothing to prepare you for how much your life will change when you become a full-time carer for a loved one!”
Hidden Costs of Caring
Even though Kate and her husband have both tried hard to plan, there are many things that have caught them off guard and many unexpected expenses. The family is now earning less than 50% of what they had earned prior to the terminal cancer diagnosis.
When her husband received his terminal diagnosis, the military made the decision to medically discharge him and terminated her husband’s middle management contract. Kate’s husband’s salary was replaced with a pension and PIP payments which are 50% less than the salary he received until he was medically discharged in May 2024. Unfortunately, once Kate husband passes, his PIP and some of his pension will also be discontinued. If Kate’s husband had been allowed to remain and die in the military, Kate and the children would have received a generous pay-out which would have ensured financial security for the family he left behind.
Kate has also taken an unpaid career break from her nursing job to care for her husband during this devastating time. Kate is a registered nurse and works for the NHS. In June 2024, Kate made the decision to stop working so she could primarily focus on her husband’s care needs. Prior to this, working full time and caring for her husband and family became very difficult and stressful. Kate managed to save enough so that she could take one year of unpaid leave. Kate feels fortunate that her employer will hold her job until 2024.
Kate has applied for the Carers allowance twice. Kate made the first application while she was still in full-time work, and the application was turned down. After Kate stopped working, Kate reapplied for the carers allowance and has been successful. She now receives £80 per week. After receiving a nurse’s salary, the Carers Allowance does not seem to stretch far in Kate’s family.
Kate’s family remain over the threshold to qualify for any other allowances or government benefits. The terms and conditions of her unpaid sabbatical and the Carers allowance means Kate is not able to do any paid work, so even if she did have the time to take up an occasional nursing shift here and there, this would mean she would lose her full carers allowance.
Because of the terminal diagnosis, her husband is not well enough to seek alternative employment. The terminal diagnosis also meant they were not able to qualify for a loan to make other practical lifestyle changes so that Kate can effectively care for her husband at home. They spent the last of their savings on the new smaller car to replace the big car, and they were helped by an Armed Forces charity, to have a downstairs toilet and shower fitted in their new house, so her husband can live downstairs during his final days. They have also refashioned the conservatory so that he can use this as a bedroom.
Anxiety
There are many other costs that Kate has avoided, by doing herself, such as gardening, dog walking, things that her husband would have naturally helped with before his diagnosis. The added responsibility of these items has left Kate feeling overwhelmed, exhausted and anxious for the future. Kate says:
“Our once reasonably comfortable family of five, with two working parents, are now watching the pennies very carefully, just managing to get by. The very small pot of savings is now going down very rapidly and I am worried that there will be very little left to pay for the funeral.”
Among other things this lower income has also raised the children’s anxiety. Kate also worries that the anxiety that the children are feeling also affects their schoolwork, and so will also affect their ability to get good grades, and this will in turn affect their future study and work prospects. The children can no longer expect weekend takeaways, spontaneous outings, or fancy school trips. Kate says:
“I find this a very sad situation to be in. A family faced with the most awful outcome, where although money can’t buy time or recovery, it can help the making of memories and the practicalities of life as the family heads towards the inevitability of the end point of a terminal illness and start a life without husband or father.”
One of Kate’s major worries is that there will not be a bed for her husband in the hospice when he needs it during his final days. Although he lives at home, her husband has been under hospice care since his terminal diagnosis. Kate and her husband have openly discussed and decided with their children where they would feel most comfortable for Kate’s husband to be when he passes. Her husband, her children and Kate herself, all state that it is their wish for her husband to be in the hospice when this time comes.
Although the Hospice have been an incredible source of support for Kate and her family, the hospice has recently lost its own funding and there are only four beds available on a first come first serve basis. The family worries that when his time comes, there will not be an available bed and they will be faced with the possibility that he will be at home when he dies.
Kate has found that as a Registered Nurse, she feels an unspoken pressure and expectation to be responsible for all aspects of her husband’s care, especially administering all his medications. Although her training as registered nurse has come in useful, the ability to simply be with her husband and family has been difficult.
Building Emotional Resilience
Kate has been proactive to seek out the support, help and resources where she can. She says that they have not always been easy to find. Kate says she has been fortunate to have found support from many different organisations, such as the SSAFA, the Forces Children’s Trust and Carer Support Wiltshire. Kate has attended a Carers Support Group run by the hospice in Swindon. Kate even appeared as a guest speaker on the Jeremy Vine BBC Radio show, on the topic: “leaving messages for loved ones (leaving messages/letters/gifts for loved ones to see once a person has died.)”
Kate naturally wants to be the carer for her husband and has shared her experience of being an unpaid carer to help people understand this incredible privilege comes with big sacrifices. For many, taking on the role of an unpaid carer is not easy. Kate’s hope is that for others unfamiliar with the carer journey, her story provides insight into how difficult it is for many carers to secure adequate financial, emotional and practical support. Having adequate support in place is necessary to build and maintain the strong emotional resilience required to fulfil this very special, yet very difficult role.
