My name is Liz and I am married to Frankie, and he has dementia with Lewy bodies. We have two sons, one who lives near us in Belfast and the other one lives in England.
At the start of the covid lockdown things weren’t really that different for us because Frankie would get anxious if he was in noisy or crowded places, and socially it was easier to take him out during the day for a drive and stop for a coffee. Then when lockdown started I would have be doing the normal daily things and caring for Frankie and not feeling as if I was in lockdown, my son would get the shopping and leave it outside the house for me so that was different.
Things had started to change before Covid and Frankie was getting very anxious and aggressive. I needed support and help as the weeks passed and because my son was working from home he started to come into the house to help with Frankie. I asked for advise and help from a social worker who had been assigned to Frankie but we had never met her and then because of Covid she was not able to visit us at home. I rang her on one occasion to ask for advice and she suggested I make a memory box, I tried to point out that at the last thing on my mind would be a memory box to help calm Frankie and actually at times I would be very frightened by his behaviour. On a second occasion I contacted her to ask if there was an out off hours number I could ring for things were changing and she suggested I play hymns to Frankie and asked could my church not help me I couldn’t even reply to those two suggestions for this person truly knew nothing about us, I thought it was pointless and didn’t try contacted her again.
One day things with Frankie were really bad so Paul suggested I spoke to a doctor and he in turn advised me to ring for an ambulance and Frankie ended up in Antrim hospital and again after the usual checks no infection, he then has a short stay in a unit to be assessed but again they needed to get a doctor to see him and he ended up back in Antrim hospital again no infection so that was almost eight weeks in total away from us. The social worker based in the hospital communicated to my son throughout Frankie’s stay and tried to get a place for him and due to his needs and covid this was the reason he was so long in hospital.
After six weeks of not seeing Frankie my son and I had started to visit him in hospital although he knew us there were changes in how he communicated with us and his cognitive skills seemed limited but I think it helped him seeing us and it helped me seeing him, I spent the time chatting to him, massaging his hands and feet, I cut his hair and nails he would seem relaxed and quite often he would fall asleep.
He then was transferred to a home in Ballycastle it’s an hours journey for us but this home is able to meet his needs, and he was quarantined for two weeks. The visiting rules are one family member one day a week for 30 minutes. When we got to see him we saw more changes with Frankie – he didn’t respond at all. The afternoon of our first visit my son got a call from the nurse looking after Frankie to tell us that a patient in the home had tested positive for Covid so the home is now in lockdown and now we are not sure when we will get to see him. I clearly understand this decision had to be made for everyone’s safety in the home but it is heart breaking.
I think about Frankie and wondering if he thinks we don’t care about him. No matter how much my sons try to reassure me I feel I have let him down.
From the start of this journey I have tried to be positive. I made changes to the house to make things safe for Frankie. I took him to meetings with DementiaNI to see other members, my son and I went to meetings to enable us understand the way ahead and then just got on with life even though it was very different and at times difficult.
But nothing prepared me of how hard it would be watching someone you love disappear before you.
So what really upsets me about COVID19 is how it has been used as an excuse in not supporting vulnerable people. I truly feel let down by our Health and Social Care Trust with their lack of support for Frankie. Although they can’t visit us the very least we deserved was a phone call to check on Frankie. I would love to ask that question to someone in authority. I get a call or an email from Frankie’s empowerment officer in Dementia NI every week to ask how we both are and Ashleigh has helped me with advise or by just talking to me. This is a small charity totally committed to their members and their families and I have really appreciated the time she give me.
It took me a long time to understand CARER and that I had become one. I’m not really sure if I done a good job but I know that when Frankie went into hospital and because of the COVID19 rules I didn’t have anyone to care for. I had no contact or control in his care. I was going no where fast. If I am honest some days I felt I wanted someone to care for me but I can’t explain how and I didn’t know what was wrong with me.
It’s ten long weeks since Frankie first went into hospital. I still try to be a carer and I hope I will get the chance soon to hug him and let him know I really care!