instead I would like to sit here and update you on the goings on. How did this begin? Back in March 2021, I talked with my sister as my parents flat out refused to go to the doctor at all, for anything. I was worried about Dad as he’d started to have some memory issues and to be fair I was convinced these issues were related to his not having the vitamin B shots he was supposed to have regularly.
So my sister and my nephew came down for a visit and we took Dad to the doctor and he passed the memory test. We got him a blood test which showed he was low in vitamin b as expected, so we got that shot done and expected there to be an improvement, which there kinda sorta was, for a short time. And luckily he now had a new doctor who was quite good at keeping them coming back for other things so he could monitor what was going on.
As the months went by there was quite a bit of sudden weight loss – 16kg in total – which concerned the doctor so he sent Dad for more tests, and to a dietician, and then one night I got a phone call from Dad about 10:15pm where he was telling me there was this strange woman in the house trying to steal his phone. He seemed super agitated and I wasn’t quite sure what the deal was so The Other Half and I went over there.
Dad was convinced that Mum was.. not Mum. This person looked like Mum and spoke like Mum but was most definitely Not Mum, according to him. I called his doctor the next day and did a telehealth appointment and that got us on the road to finding the most awesome geriatrician – she is wonderful. She ordered a new battery of tests one of which was the MRI which got us to a diagnosis of frontotemporal dementia with a side of Capgras delusion, which is essentially –
Capgras delusion is a psychiatric disorder in which a person holds a delusion that a friend, spouse, parent, or other close family member (or pet) has been replaced by an identical impostor.
So that diagnosis was a few weeks ago and ever since I’ve had to be the circuit breaker between Mum and Dad, I’ve had to spend the majority of my time over there. We’ve had a team of folks put into place to help us most notably being the older persons mental health care team.
We were told the decline would be fast from here and it has been very fast. There are a few motor disorders which tend to come with this and we’ve had issues with his swallowing, sometimes things go down the wrong way.
We also got a bit of reduplicative paramnesia which kept telling Dad he was not at home when he was. The easiest way to solve that was to put him in the car, drive him around the block, and then get him to direct us back home.
Mum has really struggled with all of this, and last Tuesday she couldn’t cope anymore. We ended up in hospital, and then Dad was sent to a secure dementia unit to see if we could adjust his medications somewhat and whether maybe his delusions might lessen in a different place. Also they wanted Mum to get a decent break because it has been 24/7 for her for weeks now. So she was banned from going to see him for a couple of days and that meant it was all me.
Lucky for me one of my customers was the first nurse I saw when I entered the unit and she really made my first day so much easier. She also got the visiting times waived for me so I could go in whenever I was able to, and I’ve spent about five hours each day there this last week, I took Mum in for her first visit and now we are alternating visits.
Lucky for us he did not have any capgras with her while I was there and she’s been in for another visit on her own since without any such incidents. It might have helped that I told him the unit was secure and “mother 2” as he calls her is not allowed in.
Where do we go from here? I really am not sure. We have family from Adelaide coming up for a visit next week and we hope he can come back home for that time.
We have managed at the moment to stabilise his weight due in large part to me constantly presenting food to him plus my awesome packed with nutrients protein shakes.
Work has become last priority at the moment which is not great for work but it is necessary just now. We need to do what we need to do.
So now I’ll go take a shower as I’ve had a lazy morning in my jammies writing this post, drinking my coffee and relaxing for the first time in ages. Then I’ll put in a couple of hours work before I head in to visit Dad at 4pm.
9 thoughts on “I should be doing a million other things but..”
I’m glad you took some time for yourself. This sounds sad, stressful and exhausting. Your poor dad! And the rest of your family, especially your mom, are dealing with SO much. I’m very sorry.
That is very sad news about your Dad. I agree that you must take care of yourself in the difficult times ahead.
I am so sorry to read this. It sounds like you are all doing everything you can and a little bit more. So stressful and heartbreaking. Thinking of you and of your mother. Glad you got HER the help she needed.
You are a good person to be doing so much with your parents. My dad is experiencing cognitive decline but not a fast one. I found your post really helpful; it gave me a model of what good diagnosis and care looks like. Thank you.
Sending prayers for your entire family.
You have your plate full, and it seems like you are handling it as best as possible. This has to be a hard time for all of you.
I’m sure it is very hard to see your father in such a state. Enjoy the time with him while you can.
No words, just xx
I understand how stressful this all is and how – well it’s like being in a muddy, flooding river and not having any way to pilot your little boat out again. It gets better, kind of. But it also gets worse. It sounds like you might have some good doctors on your side.
I do remember a time when Dad had been in the hospital and when he came back, he recognized the staff and the room, etc., was exactly the same but wasn’t it amazing that they had moved him somewhere that he didn’t know and yet replicated the building and even brought the staff with them? In general, we just lumped things like that in as delusions. In his case, they did not repeat but other delusions would come and go.
It is very stressful and draining to try to care for someone with dementia. It isn’t the cute little loss of memory that they show in tv movies. If your dad requires full time care, please don’t beat you or your family up with guilt. It’s important to take care of yourself.