At the end of my tether...

[Bunpoots]

Dad's having a very bad day today. Woke this morning not knowing where he was, or how he got there, but couldn't tell me where he thought he lived. He says he's gone potty .
Then he had to do some excercises to help with his balance. Home help has just texted me to say he's wet two pairs of trousers, and the sofa through a blanket, Kyle and several pets pads...

Tomorrow we have a meeting with community care to see what help he needs.

 

[canary]

Oh dear........
Hope the meeting goes well

 

[Rolypoly]

I find that if mum wakes too quick then she can be a bit confused and it takes awhile for her to tune in. How was he later on? Could he be coming down with something or a uti? Just pondering possibilities.

Good luck with the meeting. Hope his needs get sorted.

 

[Bunpoots]

I think the excercise, coupled with being woken, has completely thrown him. I never expected to have to involve social services. I didn't think dad would live to be this old and get this advanced with his dementia. He was always so active I thought he'd overdo things and have a heart attack. But his body seems determined to continue defeating the odds.

Poor dad. I know he wanted to go quietly in his sleep when he became the last one left. That was 6 years ago, almost to the day.

I'm feeling very sad right now and worried about tomorrow's meeting. The OT and CPN have already let SS know what they think dad needs so hopefully won't have to fight too hard to get it.

 

[Bunpoots]

The meeting went well. The assessor has a grandma with dementia so knew her stuff!

She's trying to arrange a special team of dementia specialists to try out care morning and evenings to find the best fit for dad. But this team is usually busy so we might have to wait.

We have a choice of social services finding all the care or direct payments, which they do by opening an account for dad and giving me a debit card to manage payments. Then we can choose our own carers.

We can keep dads PA and her pay will be considered as expenses in the financial assessment so it sounds fairly positive so far.

Can't decide if care package or direct payments would be best. Obviously care package would be less organisation from me but we'd be at the mercy of SS carers.

 

[Rolypoly]

That’s good news. Do you know of any good carers with the right knowledge? Would ss give you a list or recommendations as to who to approach? It’s a hard toss up between having control but dealing with any rubbish, or giving control to ss but at least they can sort any problems. Not sure which way I would jump, so, sorry, not any help . Hopefully someone who has been in a similar position can give you some pointers.

 

[Grannie G]

I had direct payments @Bunpoots and they worked well. There was very little paperwork. I just had a special account only for the payments and the rest was easy.

If anyone hates paperwork, I do and I had no problems. The agency carers I found were excellent .

 

[Bunpoots]

SS would give me a list of care agencies in the area. They themselves use 4 different agencies and I know dads PA has had dealings with one and wasn't impressed. The carers were good but the agency cut right back on numbers as soon as they won the tender so carers were rushed off their feet and not enough time to do the job properly.

It's possible that dad might be self funding - he's borderline I think. I know a couple of local agencies do have a good reputation so I'm thinking maybe direct payments would be easier especially if he starts as self- funding.

I think I'll have a ring round a few agencies and see what they say.

 

[Bunpoots]

Dad seems to have taken another downturn. He's peeing everywhere and has no idea. This is the thing that gets me down more than anything else. If only he'd put his pull-ups on and change them when they're wet there would be so much less work. But it's a constant battle and every change takes me an hour or two of arguing. I'm supposed to be renovating a bungalow but it's costing me a fortune in lost hours trying to persuade dad to change his pants. There are days when I'm tempted to just leave him to sit in the wet patches that he says are nothing to do with him . Rant over!

I'm looking forward to getting carers in so I can get some work done. I feel very trapped at the moment. i haven't had the promised call from the social worker to let me know how things are progressing so I'm going to have to chase her up next week.

 

[Rolypoly]

Sorry to hear about the downturn. It’s a never ending battle. We are still in the state of semi-awareness and denial.

Life would be a tad easier if others did what they were supposed to. Let’s hope the sw has all the info at her finger tips when you phone!

 

[canary]

Oh Bunpoots, I am so sorry.
I dread OH reaching that stage and have no advice

 

[Bunpoots]

I was hoping dad wouldn't get this far

But on a more positive note today the sun is shining and I arrived to find dad sitting in the garden and he was using his new wheeled walker which the falls assessor arranged for him. It helps a lot as he has recently started to lose his balance and almost topple over backwards so I hope he keeps using it.

I gave him a coffee and a sandwich and his pills and we watched the fish in the pond for a while. He's fairly good today ( but still not using those pull-ups ). Before I left I got him back in the house as I couldn't find any sunscreen and it was midday, made him another coffee and sat him on a pet pad on the sofa where he's watching Star Trek TNG.

I've left a pair of pull-ups next to him...

I'll be going back in a couple of hours as we're going to have a BBQ later and I want to get my washing dried in the meantime. Hopefully dad will be wearing pull-ups and clean trousers by then, after the inevitable flood, if not its back into battle!!

 

[Bunpoots]

Dad ignored the pull-ups I left next to him so when I went back he was still sitting there on the pet pad. The minute he stood up he weed all over the carpet. Funny how he's always more accepting of the pull-ups after the event

Managed to persuade him to change into pull-ups, clean trousers, clean socks... Which took an hour and got home to find daughter struggling to light the BBQ -with a flame thrower
it would've helped if she emptied the ash from the last one first so I had to improvise using a small camping BBQ and the gas stove. But we had a pleasant (if smokey) evening.

I'm worried that dad isn't drinking enough in this hot weather. He drinks what I give him, but yesterday even though I've left bottles of diluted squash in his kitchen and his lounge, he's not drinking anything when I'm not there. Even if I pour some of the squash into a glass for him. Im hoping this doesn't carry on..

 

[Rolypoly]

Maybe the trigger for the pull-ups is the act of weeing. No help I know but mums a bit like that, accepts the need after an accident but obviously doesn’t need them before because she’s not wet.

Thank heavens your daughter still has her eye brows. At least she was trying to help, either that or starving!

Not sure about drinking problem unless he would know what to do if an alarm reminder was set or you phoned, if he can answer a phone that is. It is a worry ad dehydration can make them more confused of course. Short of popping in at intervals now you have your bike or getting someone else to do it, drinks next to where ever he sits or goes so one is always to hand (oops just seen you do that) but in a glass rather than a bottle which he has to remember to undo. This weather is due to return to normal temps this week but I’m sure someone will come up with a good suggestion. When do the carers start, because they can make sure he drinks?

 

[Bunpoots]

Not sure when the carers start but hopefully that will make everything easier as dad will be having 4xs a day visits. Unfortunately dad lives at the top of a steep hill so need some training on the bike til I get there without being a wreck!!!

Dad will ignore all alarms on a bad day and on a good one will just ask what the noise is.

Daughter thinks the charcoal was damp as the same tactics light the inside fire. Bless her - she's a carer like me. I'm just trying to convince her that she won't look after my brother and sister when they're old as they don't look after their dad so don't deserve it. How evil am I?

 

[Rolypoly]

She’ll be too busy looking after you!

 

[Bunpoots]

She’ll be too busy looking after you!

That is my worst fear!!

I don't want her to abandon me but I really don't want her to care for me - and certainly not for her couldn't care less aunt and uncle!!

I'm planning to win the lottery so she can put me in a home if needs be and just keep an eye on them...

Hopefully we'll have a cure for dementia by then if I get it...

 

[Bunpoots]

Eventually got the CPN visit promised by the GP in February yesterday morning and I've been trying to process what she told me. It seems one step forward and two steps back at the moment.

Dad was very confused yesterday. Did the mini mental test and to my amazement scored 14/30 but he couldn't answer any of the questions about where he was (home) what month it was (thought it was January) although he did very well on the first half. Probably not surprising really as he used to be a carpenter and a teacher..

I arrived at 10am to find him in bed, with his clothes on but no pull-ups so sorted that out and gave him breakfast which he was still eating when CPN arrived. She spent about an hour assessing him and his needs and left saying she'd chase up the social worker who still hasn't got back to me in spite of messages left on her answerphone. I'm not holding my breath

Put a load of washing on, made dads sandwiches and drinks and left him just after lunch.

I have now discovered that riding a bike hurts my bum . Still I got up the really big steep hill with only two stops...

When I went back at 5 to give dad his tea he was in bed, wearing his pjs, again no pull-ups, another load of washing...

I left him an hour later complaining about being given chicken curry for breakfast

 

[Rolypoly]

You must be exhausted physically and mentally. At least all that cycling will make you very fit, and you’ll soon be whizzing up that hill!

Apart from the score, did the CPN give you any other feedback of inkling as to her recommendations?

No wonder your dad was still eating when the CPN arrived if you gave him chicken curry!

 

[Bunpoots]

Lol! The chicken curry was served at 5pm, but I couldn't convince dad it wasn't morning...

He had crumpets for his real breakfast