Covid-19 in nursing homes: ‘It feels as if I’m watching my parents slowly die’

As the number of deaths due to coronavirus in nursing and care homes continues to rise, in recent days, The Irish Times invited relatives of patients in residential facilities to tell us about their experiences and concerns. Here is a selection of the responses we received.

‘We got a call to say he had tested positive for Covid-19’

My 81-year-old father suffers from dementia and a heart condition and is in a nursing home in Kildare. We got a call from the nursing home on Friday to say he had tested positive for Covid-19. They seemed to indicate that he was the first resident to do so. They said he didn’t have a cough or temperature, but was “a bit weak”.

On Saturday, I phoned looking for more information. One care assistant just kept saying he was “fine”. It was hard to get information. I eventually got to talk to a nurse who was treating him. She was initially reticent; she told me he had been tested for Covid-19, and then stopped talking. When I explained I already knew he was positive, she sounded relieved and told me a lot more.

I asked could I talk to him on the phone, but they said that he was in quarantine in his room. I asked was there a mobile or cordless phone they could bring to him, but they said no. With his dementia, he hasn’t been keeping his own phone charged and doesn’t really know how to use it any more. He also loses things easily, putting them in unusual places. I asked if they could look for his phone, charge it up, and call me on it so I could talk to him.

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A few hours later, I got to speak to him briefly. His voice was very weak and while he spoke a lot, little made sense. I, my wife and my children told him what news we had, and that we loved him and would see him as soon as we could. He was obviously tired, so we didn’t stay on long.

I could tell from his voice that we was much sicker than they have been telling us. I spoke to them again about it, and they admitted that he can’t get in or out of bed unaided, and he’s not eating well. This doesn’t indicate that he’s “fine” to me. I’ve heard of other homes and hospitals facilitating video calls with patients, or passing on video messages sent to staff. There’s no indication that this home will facilitate anything like that with my dad.

I know the staff are going through a rough and difficult time themselves, and are at far bigger risk than the rest of us of contracting the illness, so I don’t want to push them or ask for special treatment.

Last update we got yesterday was that his temperature was normal, but he was still very weak and not eating. It’s going to be a long week.

‘I know he is well looked after’

My brother is in Carechoice Nursing Home in Montenotte, Cork city. I am constantly being kept up to date with his welfare. From getting to know the staff there, I know he is well looked after. They are a fabulous group of people, totally dedicated to all the residents.

‘What do we do? Wait for her to die or try to take action?’

My mother, 63, is a resident in a nursing home in Galway for seven years. She usually comes home on Fridays and returns to the nursing home on Tuesday nights. This gives my father a break as he is also not in good health. Since my mother is unable to come home or have any visitors, her mental health has declined drastically. She was a laid-back, care-free lady who enjoyed spending time with her family and was always smiling. She is now withdrawn from others, lonely, paranoid, angry, frustrated and lifeless.

She is stuck in one small room for four weeks now, only seeing care assistants and kitchen porters a few times a day for a couple of minutes. Before this, she would engage with the other residents in activities such as bingo and music, but now she remains in the room all day and night. She recently described her situation as “worse than prison, because prisoners can get outside every day and see people”.

As well as my mum’s worrying mental health decline, my father is struggling. A 75-year-old pensioner who looked forward to visiting his wife, married over 33 years, is now finding it hard to get by each day. They have two children - I live in Northern Ireland and my brother abroad. I would normally visit two or three times a month. My mental health has also suffered, knowing I can’t do anything to help my parents. It feels as if I’m watching them slowly die. I’ve started having panic attacks worrying about my parents’ physical and mental health.

A member of the nursing home management team got in contact with me over four weeks ago to discuss the contingency plan in case of an outbreak. During this call they advised that DNR decisions will be solely down to the medical staff in the home, and relatives will not have a say, so I should prepare for the worst. They also stated they will be handling all medical emergencies in house, whether it be Covid-related or not. This is completely morbid and outrageous.

The nursing home has confirmed there are a few cases in the home, and because they are short staffed, they can no longer answer the phones. The only source of communication has been taken away from us. Today is Monday and I last spoke to my mother last Wednesday. I rang several times every day and evening, but to no avail. The only thing that was helping her get by is now gone.

I am sceptical to think this is a safe place for my mother during this outbreak, but we are unable to take her home. What do we do? Wait for her to die or try to take action? This is not the nursing home’s fault, as they are trying to their best and follow Government guidelines. The onus is on the Government to do something to help the nursing home residents and their families, because this is a very traumatic time for them.

‘The lack of transparency regarding the location of clusters is frustrating’

My mother who is 89 years old is in a very good residential care unit in Dublin. She suffered a major stroke seven years ago. She has not lived at home since. Her mobility is very limited, she can use her right hand and can talk clearly. My mother also has vascular dementia and restricted vision as a result of the stroke.

I am very concerned about Covid-19 in nursing homes. I find the lack of transparency, regarding the specific location of clusters of Covid-19 in nursing homes, frustrating. I found out through the grapevine this week that there is no cluster at my mother’s location. The management were proactive at this residential unit in protecting those in their care by restricting visits to only one nominated visitor before the total shutout of all visitors.

My particular concern is the withdrawal of family support for our vulnerable relatives. I had daily visits with my mother up to three weeks ago. When the need arose, I had several daily visits, such as when she is distressed, confused or sometimes even in pain. I have a unique skill set, knowledge and history that qualifies me to care for my mother in ways that none other can. This has to be the case in every nursing home in the country, where a close relative is motivated and available to assist in the care of their loved one in a nursing home environment.

‘I haven’t spoken to my father for weeks’

I call the care home regularly about my father, but I feel I am not getting any information. They just say my father is ok. I am constantly worried about him, and anxious. He is 89 years old. The call is usually very cold. I haven’t spoken to my father for weeks.

‘None of the staff or residents have been tested’

I have a very vulnerable special needs brother in care home. He is 64 and is high risk of choking and pneumonia due to his medical condition. I know the staff are all doing their best, but none of the staff or other residents have been tested yet (writing on Friday 17th). I am terrified of losing my brother to Covid-19. Staff too are vulnerable, and work shifts and return to their own families when their shift is finished. Why are they all not a priority for testing?

‘We were asked to sign a form requesting DNR’

We are very worried about our 85-year-old mother who is in a nursing home in Cavan. We were asked to sign a form requesting DNR today. We declined but it was very upsetting.

‘I have moments of panic’

My mother is in a local nursing home with dementia for the past year and a half, which, thank God, so far does not have Covid-19. She is being cared for and loved by all the staff, management and owners, who are all wonderful people. They decided to close their doors to visitors a week or two before Nursing Home Ireland requested them to. I thought this was a very good time to do so.

I have lost track of how many weeks it is now that I have been unable to hug, kiss or touch my mom. I miss her so much. I can drop things to the front door and they get to my mother that way. I go around to her bedroom and knock on her window, and try talk to her from there. She seems extremely content and happy and full of smiles.

Each resident is now in their own room, isolating from each other. I have brought a bird feeder and flowers that she can see from her window and enjoy. The staff give one to one care throughout the day to each resident, and do everything they can to give that resident company and bring out to the garden now it’s a little warmer.

I have moments of panic, especially today, when I heard Covid-19 is now in nursing homes not too far away from our town. Do I take my mother home to me here? I work in a hospital so could easily bring Covid home, or home from shopping once weekly. How would I manage? And would it just be too confusing for her?

She is well cared for in the nursing home and very comfortable there. My siblings feel she is better to stay. I also have to work, and would not have anyone to physically help me.

My mother is 78 years old. I am realistic about what can and possibly will happen. I just want to protect and do what’s best for my mother. I know all families with loved ones in residential homes are extremely anxious at the moment. I do hope that the nursing homes are getting full support in every way from the Government.

Names have been withheld to protect the privacy of the patients. Details are with the editor.