Dad just diagnosed with Vascular Dementia & Mum has FTD

[sparky023]

Yes, so if anyone had read my post last week "Dad being aggressive in hospital" - this is my update. Dad got his formal diagnosis on Friday afternoon.
He is currently on a dialysis ward. The consultant discussed with my sister and I that with Dad already receiving 9 hours of dialysis, they would have expected his delirium to lift and mental state to improve. It hadn't. She told us that they would give him further hours of dialysis this coming week, but at the end of the week, if Dads mental state has not improved, we have to consider withdrawing treatment altogether

I have to say, over the weekend, Dad does seem far more lucid, and his aggression has thankfully disappeared.

I have been instructed by the consultant to ring the DVLA to prevent Dad from taking his driving back up when he gets discharged. I have to, so I will do that, although it's horrible and I feel terrible taking his independence away. Is there anything else or anyone else I should let know about this diagnosis?

Just a double blow, as Mum was diagnosed with Frontal Lobe Dementia 5 years ago and has been in a care home ever since. We want to do everything in our power to get Dad the support and care he needs, to stay in his home. X

 

[Mrsbusy]

What a week you've had. In respect of the driving until you decide what happens to the car keep it insured and make sure you make the vehicle licensing dept in Swansea know that the car will be off road as you need a SORN document completed to say the car isn't going to be used on the road at all. This is even necessary if it sits in your driveway or garage.

Obviously if you get rid of the car cancel the car insurance, not forgetting to cancel the direct debit if that's how it's paid.m also any vehicle recovery company will need to be told and cancel the appointment.

Tell your council too in case he can get a reduction on his council tax.

Good luck on this part of his journey. Would your Dad not feel better in the home with your Mum?

 

[sparky023]

Thank you Mrsbusy
Having just seen Dad, he has most definitely come right out of the Delirium and is lovely to see my Dad back as he was at the start of this month! Just makes me feel more upset about trying to persuade Dad to give up driving, and to accept help in the home when he is discharged from hospital. I've spoken to the DVLA today and they tell me that we have to write and offer back his license, in his own words and signature. I can't for a second expect Dad to agree to that, he doesn't think there's anything wrong with his ability to drive!
Well, although I'm far more positive now that Dad will be able to continue his dialysis through the outpatients clinic, the rest of the story is sort of more complicated now!

 

[Amy in the US]

Hello Sparky, I am sorry to say I missed your last post but went and looked it up. You have been having a time, haven't you? I am glad to hear that the dialysis has started and that the aggression seems to have resolved. I imagine your poor dad is feeling somewhat better.

As I'm not in the UK please forgive if I misunderstand how the system works, but can the hospital/consultant/social worker/GP not contact the DVLA for you? Or can the DVLA order an assessment of some sort? (I felt sure I'd seen somebody post about that but could be incorrect.) I am thinking here of removing the stigma of you having to take any blame, for your dad not being able to drive. I've learnt from my workshops and personal experience to ALWAYS assign the blame elsewhere, whenever possible.

I doubt this will make you feel any better, but it seems that often with dementia we have to make unpleasant and unwanted decisions between independence and safety. I also want to emphasize that it's not you taking away his independence, or your fault, but rather the disease. I agree it must feel terrible to you, about your dad not driving, but if it's a choice between him remaining independent, and him remaining safe, and other remaining safe, well, it's not much of a choice, surely? Again, I doubt that makes you feel better, and I am sorry. I am also distinctly biased: I didn't stop my mother driving quickly enough and she did have an accident, mercifully minor and with no one injured, but I still torment myself with thoughts of what could have happened. If she had killed or injured someone else, or herself, I would never have been able to live with myself.

As far as persuading your dad to accept help at home, surely the hospital must have a care package in place, before he is discharged? I would let the staff/doctor/nurses/social worker/anyone but you, explain it to him. Again, let someone else be the messenger. You have enough to do! I've seen enough posts here on TP to know that the sooner you get help into the home, the better, no matter how resistant the person with dementia is.

Best wishes to you.

 

[sparky023]

Thank you very much Amy xx

Hello Sparky, I am sorry to say I missed your last post but went and looked it up. You have been having a time, haven't you? I am glad to hear that the dialysis has started and that the aggression seems to have resolved. I imagine your poor dad is feeling somewhat better.

As I'm not in the UK please forgive if I misunderstand how the system works, but can the hospital/consultant/social worker/GP not contact the DVLA for you? Or can the DVLA order an assessment of some sort? (I felt sure I'd seen somebody post about that but could be incorrect.) I am thinking here of removing the stigma of you having to take any blame, for your dad not being able to drive. I've learnt from my workshops and personal experience to ALWAYS assign the blame elsewhere, whenever possible.

I doubt this will make you feel any better, but it seems that often with dementia we have to make unpleasant and unwanted decisions between independence and safety. I also want to emphasize that it's not you taking away his independence, or your fault, but rather the disease. I agree it must feel terrible to you, about your dad not driving, but if it's a choice between him remaining independent, and him remaining safe, and other remaining safe, well, it's not much of a choice, surely? Again, I doubt that makes you feel better, and I am sorry. I am also distinctly biased: I didn't stop my mother driving quickly enough and she did have an accident, mercifully minor and with no one injured, but I still torment myself with thoughts of what could have happened. If she had killed or injured someone else, or herself, I would never have been able to live with myself.

As far as persuading your dad to accept help at home, surely the hospital must have a care package in place, before he is discharged? I would let the staff/doctor/nurses/social worker/anyone but you, explain it to him. Again, let someone else be the messenger. You have enough to do! I've seen enough posts here on TP to know that the sooner you get help into the home, the better, no matter how resistant the person with dementia is.

Best wishes to you.

 

[sparky023]

Dads home and new problems

Hi all,
After five and half weeks in hospital, my Dad was discharged yesterday. I should be thrilled (and I was all day yesterday before collecting him), and if anyone else says to me "wonderful news your dads home, at least he's home" I might commit Harry-carry!
If I'm honest, it's been terrible so far

With the carers running up the stairs this morning to greet dad while he was sat on the toilet, wasn't the greatest start to the day. He was very cross and upset when I popped round to see him. He wasn't dressed, or shaved. But then again, he had refused their help to get ready. Thankfully, today was my day off (extremely rare event!) so I was there to persuade him to get dressed and have a shave before the hospital transport was due to collect him. I was checking his movements every 5 minutes on the "Just checking" website and only was able to relax and start to enjoy my day, once I was sure he had been collected for the hospital. At 5pm I had a call from the dialysis unit, dad had become abusive and aggressive and they had no option but to call security and halt his treatment. His transport was cancelled because of it, and I had to go in to collect him.
He was calm when I got there. He knew he had fought with someone, but didn't know who and didn't know why. But nor did he know he was having life saving treatment in a hospital unit. He kept asking me which shop we were in.
By this time it was 5.30pm on a Friday afternoon and I knew no social worker would be contactable, and although I eventually spoke to out of hours, I'm still awaiting their call back and it's now 9pm. Good job I wasn't holding my breath.

So now, we're in a situation, where Dad doesn't know where he is and why he's there, he tries to leave (with needles in his arm) and this is what prompts his outburst and subsequent abuse and aggression - all completely out of character for my Dad. The Dialysis Unit cannot have Dad there in case he gets in that state, so need a chaperone. Transport won't collect him and take him home, in case this happens. I have asked that they try to arrange a bed watch on the days he's due to dialyse and because we have no idea if social services can help with transport to and from his treatment, I have offered to do it on Monday. But stressed that ordinerelly I am work full time, so this isn't the solution.

I am just praying now that each day, Dad settles more into being home on his own, he gets used to the carers going in and offering help, and a miracle happens to be honest.

I am taking him to visit Mum tomorrow. It will be the first time in 6 weeks that they've seen other. Mum was taken into a care home 5 years ago. Dad has visited her every day without fail. It will be emotional for me. But actually I don't think it will occur to either parents that they've missed each other!

Thanks for listening.x

 

[Mrsbusy]

Oh how I feel for you, have a group hug! If he doesn't get the dialysis I presume things will deteriorate rapidly? Have they offered him home dialysis? This is done at night whilst he sleeps but would need somebody there with him at night I would rethink.

Have you spoken to his consultant about prognosis long term, alternatives maybe? My ?Mum has kidney failure and to defer the dialysis they have tried steroid infusion instead. She struggled with the prodding, needles, blood pressure checks etc so I'd imagine that maybe what your dad gets upset about, as uts irritating to him which is why he lashes out maybe.

The steroid infusion for my mum has made her very anxious, agitated and frightened but doesn't know what of. I wish there was a simple answer for us both. The Carers probably annoyed him as maybe they seemed to loud and in his face so to speak, especially whilst in the toilet.

The only answer I can think of is if a carer went with him and stayed with him at dialysis, but that will be costly plus will he be calm etc in the car on the journey with somebody he doesn't know?

Hope the visit to see your Mum goes well at least for you anyway.

 

[sparky023]

Thank you very much for your message MrsBusy and hugs back to you too xx

I'm feeling sick with worry. Last night I could see from the just checking that the front door had been opened after the carers had left. I wasn't sure why anyone else would call at nighttime. This morning got a call to say the carers can't get in, he's left a key in the door and he's not answering the phone or the knocks to the door. So I had to send my daughter with a key for the back door.
I fear that dad is getting paranoid about the key safe. He was talking about it this afternoon and saying weird stuff. I sumised that he probably opened the front door last night after the carers left just to look at the key safe.
Visit with mum went quite well considering, dad slept all the way there in the car (it's really not a long journey!). Strangely, Mum was quite unsettled in seeing Dad but it seemed to stir memories in her because towards the end of the visit when she had calmed right down, she started talking about wanting to go home, and asking if we could sit in the garden... Things she doesn't say, ever, anymore.
Tonight, from just checking, I'm happy that I can tell the teatime carers went in, and the evening carers went in. But alarmed that once again, it shows the front door was opened again after the carers have left. So I rang Dad. He's fine, and tells me the carers came but didn't give him his medication, because he's allowed to do that for himself later, and he tells me that he checked the front door was locked before he went upstairs for a shower. He also went outside to check the key safe, and it's gone. Have I arranged for it to be removed?
It all sounds shocking, especially seen as Dad sounds very coherent. But although my instinct was to rush round there and check he's had his mess, and check the key safe is still attached to the wall, my logical brain told me its all tosh even though Dad clearly believes it to be true.