Dear diary.......

[Helly19682]

Dear all

I just want to write this down to get it out of my system. Not looking for comments or advice, just hoping writing this will help me to deal with the events of the past two months.

I care for my father with Alzheimers and a number of other conditions.

Recently he had a bad fall, fractured his spine and was hospitalised for seven weeks. Both his physical and cognitive abilities have taken a significant hit. Whilst in hospital we dealt with anger, delerium, some aggression towards staff and many other behaviours that I am sure many here will be familiar with. I visited him whilst looking after his pets. My sister also travelled from France to help.

Once he was discharged from hospital, we had a whole new set of challenges. Dealing with things like catheter bags and a changed medication regime, turning the house upsidedown to be suitable for him (and his later anger about this). The useless care package from the hospital discharge. My sister dealt with this with some help from me. Daddy needed constant support and fell regularly. My sister took time from work as I did and we both became paranoid sleep deprived zombies trying to keep my father safe.
Neither my sister or I live with my father, I doubt he would want us to.

We eventually made the decision to get a live-in carer. We are lucky to be able to do this. She arrived and was/is much better than the previous arrangement. However, Daddy is now angry that we have bought someone into his house that he does not know and things are still difficult. I can see his point of view, but he is a very high accident risk and my sister and I needed to get back to work.
I am now wondering how long before any of this may ever settle down and I don't have a panic attack each time the phone rings. I am letting the carer work with him, in the hope that they can build a relationship. I dread that this will not work. He has always said he would never go into a care home. His animals are his life, and he couldn't take them with him.

The stress and frustration is enormous. I know you all understand. Just when you think things might be OK, they get a bit worse.
Not looking for answers, just trying to rationalise an increasingly irrational situation. Dementia is truly the cruellest disease.

 

[snowmile]

Hi, I have no advice but I'm glad you got to vent. I understand all the emotions you listed, I think we all do. My mom fought having a carer in also but now she's used to her. It's in you father's best interest and you're doing what you need to, to keep him safe. Know you're doing the right thing, try to relax.

 

[Helly19682]

@snowmile - thank you. My sister and I keep trying to reassure each other that we are doing the right thing - that there isn't much else we can do, but it is hard. Thank you for your kind words

 

[SeaSwallow]

Hello @Helly19682 Keeping a diary is a good way of venting how you feel and hopefully it will help you to understand that you are doing all you can for your dad. Your dad may not want the live in care but you know that it is the best thing for him.

 

[jennifer1967]

@Helly19682 you have coped so well with your dad in hospital, looking after the pets, dealing with carers. lets hope the live in carer works and your dad gets used to them. would a male carer work better? maybe your dad can educate them about the pets.

 

[jugglingmum]

@Helly19682 you've done a lot of caring, with first your mum and now your dad.

Hopefully your dad will get used to the carer and this will give him a bit longer at home with his animals.

It is a tricky balance as safety comes first but I assume his animals give him a lot of pleasure.

 

[Helly19682]

Thank you @SeaSwallow @jennifer1967 @jugglingmum for your wise words. In our family it has been a long journey with dementia, sadly.
Daddy has had both male and female carers, I think what has upset him is that they are living in his house, and he has an inkling his money is being used. He's not wrong, he just cannot see that he needs any help. The carer has been great, even though he's been pretty horrible to her. I guess she has seen it all before.
My father lives for his animals, although recently he hasn't been able to look after them as much. He spends all day talking to his parrot and I think a change of environment now would just about finish him off.
I am talking to his GP today to see if anti anxiety medicine might help lift his mood a bit. He has been through an awful lot and we know he may never return to a previous cognitive baseline.
It is interesting to reflect, once you leave hospital, we appreciated the discharge support package, though it wasn't anywhere near enough. After that, you either have to fight for anything or if you are self funding, you are left to it.

 

[Helly19682]

Making slow, frustrating progress today - how well we carers know this!
Trying to get my father referred back to the memory clinic. They need to know if he has a urine infection first. We tried to get him tested last week when we thought he had a UTI, GP said no as apparently having a catheter complicates things. So maybe now we can have a urine test........confused, you will be.
Bloods also needed. I asked if they could do them at home - apparently District Nurses do not do them and we would wait weeks for a home visit. So, we will be taking him to a local hospital. Joy.
He also needs bloods for a PSA test. How much do we want to bet that I can get both sets of bloods done at the same time.......

 

[StressedDaughter]

Making slow, frustrating progress today - how well we carers know this!
Trying to get my father referred back to the memory clinic. They need to know if he has a urine infection first. We tried to get him tested last week when we thought he had a UTI, GP said no as apparently having a catheter complicates things. So maybe now we can have a urine test........confused, you will be.
Bloods also needed. I asked if they could do them at home - apparently District Nurses do not do them and we would wait weeks for a home visit. So, we will be taking him to a local hospital. Joy.
He also needs bloods for a PSA test. How much do we want to bet that I can get both sets of bloods done at the same time.......

It’s all so frustrating - I spent most of the morning trying to register an LPA with an annuity company. Everywhere seems to create obstacles - hope it all works out for you! Although I’m not betting on the bloods.

 

[sdmhred]

Oh the district nurses won’t take blood 😱😱 That’s a new one on me @Helly19682 …..what about the completely housebound folk?

And @StressedDaughter - this is the job I hate so much. I’m afraid Ive left much undone as it’s been too difficult

 

[jennifer1967]

Oh the district nurses won’t take blood 😱😱 That’s a new one on me @Helly19682 …..what about the completely housebound folk?

And @StressedDaughter - this is the job I hate so much. I’m afraid Ive left much undone as it’s been too difficult

as housebound i have a lobotomist that do bloods. its a seperate dept.
they come to the house and thats all they do.

 

[Helly19682]

I think he could have had bloods done at home (GP was reluctant), but it would take weeks to arrange. I am hoping to get Daddy assessed again by the Memory Clinic (its years since his last check) as he has declined a lot. I wanted to do this as soon as I could as his carer is dealing with a lot of agitation.
However, we have also come across other people (trades, nurses) quietly going the extra mile for us when they realise he has memory problems. The locksmith who helped us sort an issue with keys and offered a same day visit. The nurse who told us what the previous carers should be doing on carer visits. The catheter clinic where they recognised further assessments would just cause him anxiety.
Now all I need to do is remember how to charge Daddy's cordless hoover, work out why his boiler is making a strange noise and book the blood test.

 

[jennifer1967]

I think he could have had bloods done at home (GP was reluctant), but it would take weeks to arrange. I am hoping to get Daddy assessed again by the Memory Clinic (its years since his last check) as he has declined a lot. I wanted to do this as soon as I could as his carer is dealing with a lot of agitation.
However, we have also come across other people (trades, nurses) quietly going the extra mile for us when they realise he has memory problems. The locksmith who helped us sort an issue with keys and offered a same day visit. The nurse who told us what the previous carers should be doing on carer visits. The catheter clinic where they recognised further assessments would just cause him anxiety.
Now all I need to do is remember how to charge Daddy's cordless hoover, work out why his boiler is making a strange noise and book the blood test.

isnt it a battery that you just plug in to a charger like a phone charger? thats what mine does. getting bloods done will probably be the hardest.

 

[Helly19682]

Update - we have sorted the charger, thanks @jennifer1967 .
The carer and I will take him to the hospital for the blood test. With two of us, should be OK. Not something I could do alone as I am not physically strong enough to support Daddy if he loses balance. As @jennifer1967 and I have previously discussed, no one understands the needs of disabled carers, or indeed carers full stop! Rant over.

 

[Helly19682]

Another week, more challenges.
We went with a live-in carer, who is excellent and gets breaks supplemented by another carer. We are self funding. The issue is that my father is often up and awake during the night. The carer is excellent, but certainly not expected to work 24 hrs per day. I am trying to sort a return to the memory clinic to see if they can prescribe anything for sleep/agitation issues. The problem is, this is all taking ages to arrange. GP wants the memory service to deal with it, this would be fine but I guess we will be waiting weeks, and at some point I suspect the carer will either find the hours untenable or we will start having to pay for an additional waking night carer. We have funds in the short term but with additional costs we won't be able to fund long term.
Of course, we have no idea of prognosis. Daddy is 86 with a number of heart/kidney problems as well as Alzheimers.
I will be talking to whoever I can think of today, and have a video meet with an Admiral nurse next week. Just worried that the carer may hand in her notice. I would not blame her......

 

[sdmhred]

Morning @Helly19682

Each week brings us new hurdles doesnt it? You’re right to be concerned about the nights. I would see if you could chase the referral by calling the service GP refers to and stressing the urgency citing ‘caring at risk of breakdown’. It may nor not work….but otherwise as you say it’s paying for a waking night carer 😢😢

Strength to you ……🏋️‍♀️🏋️‍♀️

 

[Helly19682]

@sdmhred - thank you!
I had been trying to get support, citing the fact that when he was very agitated, there was a risk of him going back to hospital. However, in the NHS this only really works if you are actually in crisis. Trying to prevent a crisis is much harder to find services, I find. The curse of the non-existent dementia support strikes again.
Strength is indeed what I need.

 

[MaNaAk]

Dear @Helly19682,

I've only just found this thread and yes I agree it's good to right it all down. How are things today?

MaNaAk

 

[sdmhred]

I k

@sdmhred - thank you!
I had been trying to get support, citing the fact that when he was very agitated, there was a risk of him going back to hospital. However, in the NHS this only really works if you are actually in crisis. Trying to prevent a crisis is much harder to find services, I find. The curse of the non-existent dementia support strikes again.
Strength is indeed what I need.

i know @Helly19682
It is so short sighted that services only work in crisis. Gird your loins …..

 

[jennifer1967]

i dont think they realize that organizing care is a lot more cost effective than crisis when they dont have a choice and have to go for more expensive as theyve got no choice. keep going and dont take any nonsense.