Living in a different town from mum for the past six years has been hard as I can’t just pop by and see her whenever I want. I have always made a conscious effort to visit once a week.
The first three years or so I would return to give dad respite overnight and also care for mum while he worked during the day. This changed when mum had to move into a care home as we couldn’t get a care package that would allow her to stay at home with dad. I do still come through once
a week to give dad company and visit mum. This transition was hard to get used to as the hands-on caring role was no longer needed as much compared to the first three years.
So yeah my mum has Dementia, Early Onset Alzheimers and lives in a care home. Up until the 11th of March the new dynamic was to stay with dad overnight or head through very early in the morning and spend as much time back home as possible. This ensures dad gets the company he needs, whilst still getting some time to spend with mum. It is important to understand sometimes you don’t just care for the parent with dementia, you also need to look out for the care needs of the other parent, who can often be left behind by the system.
The care home was so relaxed in terms of visits and I really bought into the idea of it being mum’s new home (as much as it was still hard to have mum and dad live apart). Some days I can find myself hanging out with mum easily for eight hours, helping feed her, helping her with medication and so much more, the caring role still exists despite her living in a care home. The caring role did ease a little in some respects, so it allows some more time to try and maintain the mother/daughter relationship where we hang out, watch TV, listen to music and have lots of cuddles.
You see, mum’s dementia is now at a stage where this physical interaction is needed. She can no longer speak, use the telephone, text or video calls. Mum responds best to touch whilst in her presence.
We are unsure of mum’s level of awareness, however what we know is that you can get a smile from her when you first walk in the room and she sees you and we can at times make her laugh. Things not achievable over a video call, believe me we have tried. This interaction is just as important for her as it is for me. So yeah up until the 11th of March I was used to the new normal and embraced it.
What happened on 11th March?
The care home went into lockdown – to be expected and at the time knew it was the right thing for mum and everyone else. So what would be the new normal for mum in order to stay in touch with her family?
She can’t converse over the phone..
She can’t converse via messages…
She can’t chat to us via video call…
Like many others we are left in limbo as I believe the care home sector is simply not set up to allow families to stay connected unless we are able to visit in person. I can almost guarantee there would be someone daily with mum (that would be at least dad everyday) and we would find out how she is, what does she need, get an overall feel for how she is in herself and pass this onto each other as a family alongside videos and pictures.
This was our new way to still have mum in our lives.
This disappeared with lockdown as there simply isn’t a set up to allow families to keep in touch with their loved ones as much as there would be if mum wasn’t living in a care home with dementia.
Now it is almost 14 weeks since I last saw my mum in person (4th March). Since then she has been unfortunate to have been diagnosed with Covid-19 and was admitted to hospital. I am happy to say she pulled through, however, it did not come without dark moments where I had prepared myself for the goodbye – twice may I add.
Thankfully, as I said she beat it and is back in the care home, however has still not been able to see any family, not one single person. We are also waiting to hear if any aftercare is available for someone who has been bed ridden for almost a month…or do we not get a look in as she is in a care home with Dementia?
We have been lucky to have a few video calls but as the days go on we as a family are aware that we can not all have a video call with mum as other residents need to see their families as well. This has limited us to dad being the one who gets the video calls.
14 weeks and still no sign of when anyone can physically see her again…
We all rejoiced at the prospect of socially distant visits in the gardens with families and friends (obviously only one household a day) but yet no-one anywhere has thought about when and how we can make it possible for those in care homes to see their families.
Where are their human rights?
It is bad enough some of the scandals that have come out of this, that can be another post for another day, today I am concentrating on keeping families connected!
I hate not really knowing how she is and I want someone somewhere to let me know when I can see my mum again!!!!
It is about time those who make the decisions in the care home sector and families are seen to unite and lean on one another. We know the staff on the ground are doing their best and we thank for them for that but we need you the decision makers to look at all this and learn from it and work with us families to see how we can improve things going forward for staff, families and by no means least those living in your care home with or without Dementia.