Dad-min: when will it stop?!

[DaftDad]

Another possibility is that dementia is affecting the way he experiences the passage of time. For example, I could tell my dad “remember that the repairman will be arriving in 15 minutes, so you need to wait in for him” - but after 5 minutes he genuinely believed that at least an hour had passed, so he would conclude that the repairman had “let him down” and he would therefore set off for a walk, and a bemused repairman would be ringing me to say there was no answer at the door…

I believe this is what my Dad experiences. He only has "now" as his timing for things. He will think about doing something or going somewhere and literally just get up and go that minute. If he asks us to take him somewhere that requires planning, e.g. I have to do it in a school holiday, he gets upset that I am not saying yes, we can go right this minute. Previously, writing in his diary would aid in getting him to stay put for appointments etc. but this seems to no longer work. We had an ophthalmology appointment in Jan, at 08:15 (what the heck kind of time for an elderly person?!). I had to stay the night before in a wheelchair accessible hotel to have any hope of getting to him on time. I rang him as I left the hotel, 10mins away from the house and said don't go anywhere. He walked out of the door about 6mins after I'd called and I had to wait for him to walk to the shop and back again, because I couldn't just jump out of the car and retrieve him. We did get to the hospital on time, but it was very stressful. And he didn't understand why I was peeved that he wasn't home when I arrived at 07:30.

 

[Knitandpurl]

I think you need a medal, or several.

 

[DaftDad]

I must say it's reassuring to know other people's relatives with dementia have similar things, like the avoidance of admitting to having any issues, the issues with not going out and all the rest. Social services have made me feel like my Dad's presentation with his dementia is completely different to "usual" etc.

One of the reasons I'm so stressed is because despite having a brother also with PoA, he is often of limited help. E.g. upon finding out that the nurses will try again tomorrow morning, I asked my brother to contact Dad to try and get him to write down "stay home on Wednesday/tomorrow." I was working and have been in sole charge at home with my daughter since yesterday (until tomorrow). Bro knows that. Has he actually done anything? Nope. Chances are, it'd make little difference but it wouldn't have taken my bro a minute or two to send an email and dial his phone (not that he answers it much).

Oh well. Such is life. I'm off to bed and have remembered to put DND on my phone. My first night at home without my husband here, I forgot to put on DND and my BROTHER'S phone called me at 01:08. Nothing to do with Dad, just a silent call! He claims it was some kind of error, not him etc.

 

[phill]

I must say it's reassuring to know other people's relatives with dementia have similar things, like the avoidance of admitting to having any issues, the issues with not going out and all the rest. Social services have made me feel like my Dad's presentation with his dementia is completely different to "usual" etc.

One of the reasons I'm so stressed is because despite having a brother also with PoA, he is often of limited help. E.g. upon finding out that the nurses will try again tomorrow morning, I asked my brother to contact Dad to try and get him to write down "stay home on Wednesday/tomorrow." I was working and have been in sole charge at home with my daughter since yesterday (until tomorrow). Bro knows that. Has he actually done anything? Nope. Chances are, it'd make little difference but it wouldn't have taken my bro a minute or two to send an email and dial his phone (not that he answers it much).

Oh well. Such is life. I'm off to bed and have remembered to put DND on my phone. My first night at home without my husband here, I forgot to put on DND and my BROTHER'S phone called me at 01:08. Nothing to do with Dad, just a silent call! He claims it was some kind of error, not him etc.

Compassionate leave isn’t just for bereavements. Please do consider asking your employer for some. Having some uninterrupted days off work would enable you to have face-to-face conversations and do office-hours phone calls, and that sort of thing, which should make you feel more resilient.

 

[DaftDad]

Well, this morning was fun. Dad acknowledged the message from yesterday, asking him to stay home this morning. He even sent a second message, telling me I should tell the nurse to reverse onto the drive (not drive in forwards!) because there are roadworks. Within about an hour of him sending that message, the Ring doorbell showed him setting off, hat and coat on - this was about 09:15. I pulled over and connected with Ring and called him to come back. He eventually came back up the drive and spoke into the bell. He insisted he needed to go to the shop immediately, to get food. I asked had he not eaten breakfast, he didn't reply and just started shouting that he WAS GOING TO THE SHOP and nothing I could say/do would stop him. It was like speaking to a toddler who was told no to having chocolate or something. I gave up and carried on to work. He went to the shop and came back without evidence of buying anything. Fortunately, the nurses arrived about 5mins after he got back from the shop. They seem to have stayed around 50mins, hopefully I'll get an update at some point.

It was just his reaction to being reminded to stay home for the nurse visit, shortly after him accepting he WOULD stay at home 🤦‍♀️

 

[SeaSwallow]

Oh dear, but at least the nurse saw him, fingers crossed for some positive feedback.

 

[DaftDad]

Oh dear, but at least the nurse saw him, fingers crossed for some positive feedback.

Yes, that was positive.

A social services person phoned me while I was in my own hospital appointment today. Fortunately, I was able to contact them afterwards, but nearly missed that conversation too! They have received notes from the nurses this morning "presented well, but evidently issues blah blah". They took blood tests (results tomorrow hopefully), but didn't mention urine. Dad has a pathological issue with any peeing on demand and has never used public urinals due to performance anxiety. He always went/goes into a cubicle in public loos. I doubt very much they managed to get him to pee in a pot, but stranger things have happened.

Having had a discussion with the social services person on the phone, his case has been "allocated" and it will be reviewed by a duty social worker at some point. He still does not have a specifically named social worker, so it's a random person who will end up dealing with it and will not have seen him previously. They don't seem to be given named people and the social work caseload is just allocated "on demand".

This afternoon, he has wandered off back to a similar area to yesterday and the weekend, from his childhood. Again. And has been to the shop 3 times, each time without buying anything aside collecting his daily newspaper (with a voucher) the first time. This evening's care visit was an almost all-time low of 2.5 minutes. Hopefully, he decided to take his medication during those 2 minutes, but who knows?!

Hopefully, I'll hear more about things before the end of the week.

 

[DaftDad]

Latest exciting Dad-related silliness, is that he appears to have lost all his bedding, other than the stuff on his bed. He managed to find the name of his care provider online and sent an online enquiry form via Homecare.co.uk, at 01:00 yesterday, asking them to buy him more bedding. The carer who is supposed to do housework on Tuesdays (which he usually refuses, but he'd gone wandering yesterday) said she'd try to change the bed, but she couldn't find any spares. He does have four or more sets of double bedding, so heaven knows what he's done with all that! I imagine he's hung some of it to dry in the garage over winter and it's probably still there. Whether there are 3 or 4 sets in there is another question! I think we will have to go over to his house over the weekend because he doesn't usually ASK to change his bed.....

He's also been repetitively trying to buy weed killer. And tried to sell his house. And remembered his fourth wife and started emailing her completely out of the blue.

It's all fun and games 😂