Carer's Perspective: From Home to Care Home

In recognition of Carer's Week 2025, this month's blog has been written by an anonymous carer, whose partner lives with dementia. If you're looking for information and advice about life with dementia, please reach out to a Wayfinder at Sage House on 01243 888691 or info@dementiasupport.org.uk.

If you are a person with dementia or a carer for someone with dementia who is beginning to think it may be time for a move to a care home – read on. My experiences and those of my partner may be different from or similar to yours. Either way I hope they may help you with the choices up ahead.

I will call my partner, who has Lewy Body dementia, just J. J first had signs of dementia in 2019, and received a diagnosis in March 2024. I had gradually become his carer over those years in between, but there was much that he still did independently – his personal care, all the washing up and getting a few items from the local shop. We had talked about the future and he had often said “I don’t want to be a burden” and “put me away somewhere when it gets too hard for you”. I had hoped that we would be able to live together in the home we made together until he died, but I had also faced the possibility that a care home could be the right choice at some point. I had become tired, sad and bored with our daily life, while still loving J deeply. On the very day that he received his diagnosis, he later suffered a very sudden decline, both mental and physical, which led to an emergency hospital admission. This was followed by a dreadful 7 week stay in hospital during which he became paranoid, delusional and lost a lot of mobility and general wellbeing. When he was eventually properly assessed by a hospital social worker it was clear that he needed to be discharged to a care home. The tough decision was taken from us for which I am grateful.

J has no savings and only his state pension income. This meant the local authority was responsible for finding him a suitable care home and for funding his care. (they now take most of his state pension leaving only 37.10 pounds a week) There were many forms to fill for the local authority and I was also able to apply for and get a blue badge for him (a mammoth form) which is very helpful when we go out and about.

J’s first care home was a small family run dementia home. It was a huge relief to me when he arrived there after the nightmare of the hospital ward. It was a warm and friendly environment with a care staff who were quirky, cheery and kind. The place was rather cramped and crowded and J’s room was very small. In this place J quickly got much better, both mentally and physically. He became calmer and cheerier. The horrible paranoid delusions mostly passed off and his delusions when they occurred became benign. I got to know the small staff team quickly and always felt welcome. When J was well enough, I was able to take him out by car. I was very unsure about bringing him home for a visit, but after consulting the care home manager I decided to try it. The manager told me that for some people with dementia visits home could be distressing but for others it could work well. It has worked well for J and I and almost one year on I bring him home for a day once a week. We find these times at home together very important. He loves to see his books, the cats, and the garden. He enjoys a real coffee, my home cooking, and we play dominoes and watch TV together. Taking him back to his care home in the late afternoon is often difficult for both of us.

After 6 weeks in the first care home, J was assessed again by a social worker. She visited him in the home, talked to him, to me and to one of the deputy managers. She looked at his room and concluded that with his mobility problems he needed a larger room. The local authority was unwilling to meet the costs of a larger room in this home and offered a place in a much larger, purpose-built dementia care home a bit further away for me to travel. I visited the home first and then visited with J. He was able to choose a room from two available and he moved in quickly after that. In this home all the residents have dementia. It is a modern, purpose built, airy building organised across three floors. Each floor has 20 rooms with two separate lounge and dining areas. J has a bigger room with his own shower room and toilet. He has a pleasant view over gardens and trees. There is a garden that residents and visitors can use.

There was much that I needed to learn about how the home operates which I picked up along the way by making mistakes and asking questions. I learnt the procedures for getting in and out of the building, the times of medication rounds, and meals. I had to rapidly label all J’s clothing. I got to know who to ask about what over time. Most things could be answered by the team leader on the day on J’s floor or the member of staff in the office Monday to Friday. The manager and her deputy have also been helpful and respond promptly to emails. J is registered with a local GP practice. A Nurse Practitioner visits the home every week from the surgery and sees whoever the staff refer to him. The district nurses also visit. At the GP practice there is a wonderful person “the care home liaison officer” who I can turn to in the event of questions or problems. She helped us fill out the RESPECT form and registered it. J’s medication is all dealt with at the home, his hormone injections are delivered by a district nurse, and a specialist nurse changes his catheter every 3 months. He has much better and easier access to NHS health care than when he was living at home. A local Optician also visits for eye tests, and a chiropodist for routine foot care. There are usually 4 care staff on duty on J’s floor, a team leader and three care assistants. I am impressed by how efficient, friendly, cheerful and kind they are. I have benefitted from some of their wisdom too. When J was having some frightening delusions again the team leader said to me “you will remember this, but he will not”. There are activities offered in the home most of which J declines to join in. I got him a new TV for his room and recently we have been able to set it up so he can watch football. He has many of his own things in his room including a selection of toy animals and his favourite chair from home. I decorated his wardrobe with pictures and cards and got him a deep green bedspread instead of the standard one Supplied. When I visit I feel welcome and comfortable – a cup of tea is often offered. I chat with the care staff when I can and try to remember their names!

Many of the other residents are further along their dementia journey than J. Looking around and watching you can see the various different kinds of behaviour that come with the later stages of dementia. There are those who are anxious and walk about a lot, often looking lost and wandering into other people’s rooms. There are those who don’t do much at all but sit or sleep in the lounge area with blank expressions. There are those who talk to themselves and one who drums with his fingers all the time. The oldest resident is 103. In J’s first care home there was a man who took off his clothes in the lounge, one who chewed his shoes and a woman who believes she owns the home. These are strange worlds to step into and to be part of. J sometimes develops odd ideas – he told me that one chap was stealing other people’s clothes and selling them!

J says the food is boring, that was certainly true of the only meal I have eaten there. He also dislikes the security measures that ensure the residents can’t leave unless accompanied. I also find the getting in and out procedures tedious but understand why they are necessary.

One early decision I needed to take was how often to visit J and what to do with our time together. I started off with visiting and taking him out about every other day and have continued with this pattern. I spend 2-3 hours with him in his room one morning and the other times we go out or come home. We go to Sage House for chairobics and lunch, we visit various gardens and the Wetlands centre at Arundel when the weather is good enough. We eat out in various cafes and restaurants – J really likes the café run by the prisoners at Ford “Serving Thyme” and a good spicey Thai meal. The time we spend together now is precious. I am much more patient than when we were living together and I can give him my whole attention. He can still use a simple mobile phone and we have lots of conversations on the phone even though he struggles to find his words.

My small family have been very supportive through this difficult time, especially my sister. My friends who are also carers have been wonderful. Other friends were good at visiting J at the beginning but have not continued with any consistent support.

Perhaps their lives are too busy to make time. It seems that some people can empathise with our situation and that others can’t or choose to avoid thinking about it. Now and then I email friends with updates about J in the hope that they may decide to spend some time with him.

From a practical point of view my life has changed radically. From being responsible for everything in the domestic sphere and for J and his many health care needs, I now only have to take care of my home and myself and find the energy and patience to be with J. I find the many journeys driving back and forth between my home and his care home tiring and draining. However, there is much less house work, less washing, cooking and shopping, and fewer trips to the doctors. From having not much time to myself, I now have a lot of time both alone and to spend with friends and my sister. I am not lonely, but I do miss so much about how our relationship was before his dementia progressed. I often feel very sad and my life feels like an emotional roller coaster. I know with my head that J is in a good place to be cared for and that I could not manage things with him at home. But my heart still wants him at home. 20 weeks of one-to-one counselling via NHS “Time to Talk” was very valuable for me. I wish I had had it much sooner. Waiting times are long for this free NHS service. Refer here to counselling to be offered through Sage House – The Wayfinding team at Sage House are now able to refer both carers and people living with dementia to a private counselling service. They can offer a home visiting service across West Sussex or appointments at Sage House.

I think that J and I have been and still are relatively fortunate in our experience. We started off with a very happy, close relationship, a comfy home and enough money, along with good family and friend relationships. J continues to be appreciative, affectionate and loving towards me. I love him and want to make the rest of his life and our time together as good as it can be. He is also cooperative and friendly with the staff of his care home. I feel great appreciation for the people who work in J’s care home – not just the care workers, but also those who do the laundry, the cleaning and all the other things that keep the place running smoothly and provide a warm friendly environment.

The journey from home to care home isn’t easy. It feels like living in a different world from most people. You and I can only do our best and find comfort, support and strength from whatever and whoever works for you. I disappear into crime fiction and sci fi on the TV. I swim, go to a Thai Chi class, cook and make bread. I share my thoughts and feelings with a few special people - those friends and family members who can listen and understand. It is very important to me to “tell it how it is”. I also look outwards and try to listen well to other people and keep in touch with their lives.

If you care for a loved one living with dementia, it's never too late to reach out to Sage House for advice and support on 01243 888691 or info@dementiasupport.org.uk.