I’d always felt lucky and blessed in life; my children were grown and happily settled with families of their own, I had a devoted and loving wife, and between us we cared for ourselves completely. I maintained the house, drove us to the shops, the local temple (which we helped to found) and to our children’s homes to visit, and took care of all the bills and finances.
I’d suffered with angina for 25 years and had needed bypass surgery and stents to my coronary arteries. However, with medication, exercise and fresh, healthy food every day, I remained well and generally fit, apart from the gradual decline in strength and stamina that comes with getting older. My wife and I lived in the same neighbourhood for 50 years, surrounded by other family and many longstanding friends, and we played an active part in the community. We weren’t dependent on anyone.
This happy existence was cruelly brought to an end in 2013 when my wife suffered a near-fatal stroke. She remained in hospital for exactly 100 days; the doctors weren’t even sure if she’d survive for the first few days. Then, once she was out of danger, no-one knew how much recovery she would make. She couldn’t walk, eat or talk, and I felt completely helpless for the first time in my life. I stayed with her every day, and didn’t sleep or eat properly; I was so stressed and worried. It became obvious that my wife would need a lot of caring for, and that the house would not be suitable for her as it was.
She wanted to be back in her home more than anything else and I was determined to make this possible. However, despite the fact that everyone caring for my wife was so helpful, and my family was fully supportive, sorting out all the paperwork, finances and practicalities to enable my wife to come home seemed so complicated and slow. It was soon apparent that in order to alter the house and make it suitable for my wife in time for her discharge, I would need to pay for it with savings, even though, in theory, she was entitled to get the wet room and other essential furnishings paid for by NHS and Social Service grants.
The stress and worry I was under during this time finally caught up with me, and I collapsed at home, suffering a severe angina attack, and ended up in the same hospital as my wife, but on a different ward. Eventually, I was discharged on stronger angina medication. However, this caused more problems for me; I wasn’t warned that the medication may cause light-headedness. This side-effect caused me to faint at home one day and bang my head; luckily a relative was visiting at the time and called an ambulance, and once again I ended up in the same hospital as my wife!
These episodes made me very worried about being able to cope with being my wife’s main carer. How would she summon help if I collapsed at home again? Could I cope with remembering which tablet she required at which time of day? Could I cope with making decisions on her behalf without immediate support? My family contacted the social worker assigned to my wife’s case in hospital. She was wonderful, and worked with the Community NHS and Social Service team that were putting my wife’s care package together. Together with my children, they worked out ways of making things manageable and safe. I was given a wrist movement monitor and lifeline call button to wear. The wrist monitor is linked to a call centre; if it detects a very sudden movement (like a fall or faint), it activates a call to the centre, who then ring the house. If I don’t answer the call, they immediately call for an ambulance and call my son to alert him. BT has installed special phones which automatically block nuisance calls and unknown numbers so that I’m not worried by scammers or cold-callers. My wife and I decided to allow my son to make important decisions about our health and finances, such as paying all the bills, managing the maintenance of the house and liaising with the GP and hospital specialists. The GP arranged for all my wife’s medications to be dispensed in special packs, which already had the tablets sorted by day and time.
I also get a carer’s allowance to spend how I wish so I can meet the needs of my wife and me better. With my wife’s express approval, I’ve used it to pay for a sitter and cleaner for 6 hours each week. The sitter comes twice weekly and stays with my wife whilst I go out to the local shops and temple. She can speak punjabi and so my wife has a good gossip whilst I’m away; I’m sure this interaction has helped to improve my wife’s ability to talk more clearly since her stroke, and having a cleaner means that I don’t worry about straining my heart as I get very tired easily these days. Life now is different for us both, but much better than we ever dared to hope. I no longer drive, and this too has been good for my stress. Being surrounded by family, friends and the wider community we’ve lived most of our lives in is incredibly important to us. It helps to maintain our identity and purpose in a dignified yet supported way, and that truly is a blessing.
The dynamics of frailty describe the changes that a person with frailty and their close carers and family typically experience over time. Some of the key points of a typical ‘trajectory of frailty’ can be summarised as follows:
- The trajectory is non-linear (frailty doesn’t change smoothly and consistently over time);
- The trajectory is unpredictable;
- The trajectory is complex.
Baldev’s story illustrates these points, both from the perspective of his role as the main carer of someone who is frail, and as a person with frailty himself.
Find out more
Journeys of frailty