Dear diary.......

[MaNaAk]

Dear @Helly19682,

I hope you're okay today.

MaNaAk

 

[Helly19682]

Well, the last four days or so have been somewhat of a rollercoaster ride. It's a good job I had girded my loins as suggested!
We had still been playing catch up about the possible UTI, though on Thursday the district nurse was concerned. Did a dip but not conclusive. By Friday, Daddy was unwell enough that his lovely carer and I took him back to the catheter clinic. Despite apparently operating a drop in clinic, and Daddy being in a lot of pain, they could not see him due to staff shortages.
We then resigned ourselves to a day in A&E, as he really needed to be treated. Surprise surprise, a nasty UTI, which needed urgent treatment. A&E staff were brilliant, but A&E was very busy with lots of police. My father demanding to know what he had done to be bought to the police station!
Many hours later, after IV fluids and antibiotics, we were able to go home. Daddy much better, the rest of us zombies.
Apparently I have to get a follow up with his GP, that'll be fun!
Saturday, he was very tired and we were back to being horrible to the carers. However, things improved a little when we did some tasks with his animals.
Yesterday I had a day out, hoping that no news is good news. Today I need to check with the pharmacy about is regular order and make sure everyone is OK. Tomorrow the OT team are fitting grab bars everywhere (which is a great service). We will see how that goes.
NHS - great in a crisis, but for the life of me I cannot see how you can get support in the community. I thought I knew the NHS well, but aspects of the last few days have been baffling.

 

[jennifer1967]

Well, the last four days or so have been somewhat of a rollercoaster ride. It's a good job I had girded my loins as suggested!
We had still been playing catch up about the possible UTI, though on Thursday the district nurse was concerned. Did a dip but not conclusive. By Friday, Daddy was unwell enough that his lovely carer and I took him back to the catheter clinic. Despite apparently operating a drop in clinic, and Daddy being in a lot of pain, they could not see him due to staff shortages.
We then resigned ourselves to a day in A&E, as he really needed to be treated. Surprise surprise, a nasty UTI, which needed urgent treatment. A&E staff were brilliant, but A&E was very busy with lots of police. My father demanding to know what he had done to be bought to the police station!
Many hours later, after IV fluids and antibiotics, we were able to go home. Daddy much better, the rest of us zombies.
Apparently I have to get a follow up with his GP, that'll be fun!
Saturday, he was very tired and we were back to being horrible to the carers. However, things improved a little when we did some tasks with his animals.
Yesterday I had a day out, hoping that no news is good news. Today I need to check with the pharmacy about is regular order and make sure everyone is OK. Tomorrow the OT team are fitting grab bars everywhere (which is a great service). We will see how that goes.
NHS - great in a crisis, but for the life of me I cannot see how you can get support in the community. I thought I knew the NHS well, but aspects of the last few days have been baffling.

im sorry youve had all this and your dad has been really suffering. how can the clinic turn an ill man in lots of pain away? hopefully it will get better from here. what a lovely carer but how would you have got him any where on your own?

 

[Helly19682]

@jennifer1967 - I could not have got him to the hospital on my own, and the carer does not drive, so it is a combined effort. I have given up understanding how best to use services - we seem to lurch from one crisis to another, which is not good for anyone.
TBH, you often need two people for a long visit, so that loo breaks can be covered and you can get food and drink. I am hoping that once the antibiotics do there work he will be calmer and more comfortable.
Today, I am paying for Fridays efforts, sorting other things on Saturday and then I went out yesterday - a day for me. I know I am lucky to have that. Paying for it all today - very tired and achy. Trying to catch up with work which got abandoned on Friday.

 

[jennifer1967]

@jennifer1967 - I could not have got him to the hospital on my own, and the carer does not drive, so it is a combined effort. I have given up understanding how best to use services - we seem to lurch from one crisis to another, which is not good for anyone.
TBH, you often need two people for a long visit, so that loo breaks can be covered and you can get food and drink. I am hoping that once the antibiotics do there work he will be calmer and more comfortable.
Today, I am paying for Fridays efforts, sorting other things on Saturday and then I went out yesterday - a day for me. I know I am lucky to have that. Paying for it all today - very tired and achy. Trying to catch up with work which got abandoned on Friday.

i know you couldnt do it yourself, i wonder how they expect you to manage on your own. you need time for you.

 

[Helly19682]

@jennifer1967 - I don't think anyone really considers this. Family carers, especially disabled ones, are put in the "too difficult" box. And left there.
I hope today will be quieter. I am working at my father's house. He seems calmer today, but had a very disturbed night. I think I am going to have to look at additional support as he keeps waking up the carer, who is not supposed to be working all night as well as all day! We won't be able to afford that for long though.
Waiting for the OT equipment service to install grab bars whilst I work and oversee my father. What can go wrong eh?

 

[jennifer1967]

@jennifer1967 - I don't think anyone really considers this. Family carers, especially disabled ones, are put in the "too difficult" box. And left there.
I hope today will be quieter. I am working at my father's house. He seems calmer today, but had a very disturbed night. I think I am going to have to look at additional support as he keeps waking up the carer, who is not supposed to be working all night as well as all day! We won't be able to afford that for long though.
Waiting for the OT equipment service to install grab bars whilst I work and oversee my father. What can go wrong eh?

good luck!!!!!

 

[Helly19682]

Well, I am obviously psychic because yesterday was an interesting day.
All was going well, Daddy settled with the newspaper, our carer having a break, when the man from the adaptions team turned up. Great.
Not so great was that the technician to install the grab bars had not been sent any diagrams as to where they should go. Cue me ringing the OTs, faffing about talking to various people and finally having the diagrams emailed to me so the technician could use them.
Grab bars installed. Also supposed to have a folding shower seat. No one knows anything about this so told to start a new request with adult social services. Lets see how long that takes.
Rang hospital clinic to follow up after Daddy's A&E visit last week. They have no knowledge of anything on their records. Fantastic. Another trip to the pharmacy later to pick up meds that are not part of his dosette pack.
I take my hat off to all of you who di this full time. I am grateful for NHS services, but my god they can be so hard to use.

 

[sdmhred]

You couldn’t make it up could you @Helly19682?

I had it yesterday over a simple opa over the telephone….the Dr spoke to the person in the home who didn’t know mum rather than me….changed the medication to something that hadn’t worked a year ago…..and then I spent the rest of the day rectifying it and depleting my energy and resilience levels.

and here I am today off to work in an incompetent social services department but trying to offer a good service!

Good luck to you and your Daddy today xxxxx

 

[jennifer1967]

Well, I am obviously psychic because yesterday was an interesting day.
All was going well, Daddy settled with the newspaper, our carer having a break, when the man from the adaptions team turned up. Great.
Not so great was that the technician to install the grab bars had not been sent any diagrams as to where they should go. Cue me ringing the OTs, faffing about talking to various people and finally having the diagrams emailed to me so the technician could use them.
Grab bars installed. Also supposed to have a folding shower seat. No one knows anything about this so told to start a new request with adult social services. Lets see how long that takes.
Rang hospital clinic to follow up after Daddy's A&E visit last week. They have no knowledge of anything on their records. Fantastic. Another trip to the pharmacy later to pick up meds that are not part of his dosette pack.
I take my hat off to all of you who di this full time. I am grateful for NHS services, but my god they can be so hard to use.

if they had a brain, they would be dangerous!!! its so usual for the right hand not knowing what left hand is doing. i must admit the council ot was good and was very thorough when doing the plans for my bathroom adaption and ramp. the bloke asked me how i would like the rails and at what angle rather than straight. i am so lucky that my daughter is in charge of ordering his meds and putting them into dosset boxes while she works in the pharmacy. if i had to deal with his as well as mine, i think i would never cope. hats off to you for navigating this minefield, what would they do without us carers!

 

[Helly19682]

You couldn’t make it up could you @Helly19682?

I had it yesterday over a simple opa over the telephone….the Dr spoke to the person in the home who didn’t know mum rather than me….changed the medication to something that hadn’t worked a year ago…..and then I spent the rest of the day rectifying it and depleting my energy and resilience levels.

and here I am today off to work in an incompetent social services department but trying to offer a good service!

Good luck to you and your Daddy today xxxxx

Thank you for this. It is so frustrating isn't it?
I think it must be very hard working in social services. On the whole, the people are great, it is the systems that do not work.

 

[Helly19682]

if they had a brain, they would be dangerous!!! its so usual for the right hand not knowing what left hand is doing. i must admit the council ot was good and was very thorough when doing the plans for my bathroom adaption and ramp. the bloke asked me how i would like the rails and at what angle rather than straight. i am so lucky that my daughter is in charge of ordering his meds and putting them into dosset boxes while she works in the pharmacy. if i had to deal with his as well as mine, i think i would never cope. hats off to you for navigating this minefield, what would they do without us carers!

Well what would they do indeed without us carers?
I am a project manager at work, and yesterday I was project managing Daddy's grab bar installation, at very short notice. The sad thing was, the technician said "this always happens" about the instructions. What a waste of time and money if he turns up and cannot do anything. What happens to PWD who do not have others to run around for them?

 

[jennifer1967]

Well what would they do indeed without us carers?
I am a project manager at work, and yesterday I was project managing Daddy's grab bar installation, at very short notice. The sad thing was, the technician said "this always happens" about the instructions. What a waste of time and money if he turns up and cannot do anything. What happens to PWD who do not have others to run around for them?

they slip through the net and dont get remember until there is an emergency.

 

[Loujess]

@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’m sorry you are having all these difficulties. Re the PSA blood test, is it worth putting your father through the distress of that. My husband is 86 and has advanced vascular dementia but even if prostrate cancer was discovered he wouldn’t be having treatment at this stage. Re bloods, it is so difficult getting blood from my husband that it just been decided to treat symptoms. Regarding the optician and audiologist, they will visit here at home if requested but nothing seems to help nowadays and he loses his hearing aids every time so those tests are in abeyance at present. None of this may be appropriate for your father but the lack of these pressures certainly takes some of my anxiety away. I wish you luck, endurance and stoicism. It’s so difficult.

 

[Helly19682]

they slip through the net and dont get remember until there is an emergency.

Very true.

 

[Helly19682]

I’m sorry you are having all these difficulties. Re the PSA blood test, is it worth putting your father through the distress of that. My husband is 86 and has advanced vascular dementia but even if prostrate cancer was discovered he wouldn’t be having treatment at this stage. Re bloods, it is so difficult getting blood from my husband that it just been decided to treat symptoms. Regarding the optician and audiologist, they will visit here at home if requested but nothing seems to help nowadays and he loses his hearing aids every time so those tests are in abeyance at present. None of this may be appropriate for your father but the lack of these pressures certainly takes some of my anxiety away. I wish you luck, endurance and stoicism. It’s so difficult.

@Loujess - I think you are right about the PSA test. My father has a number of problems (kidney disease, high blood pressure, a pacemaker) of which the prostate cancer is not the most serious. I think the PSA test is now in abeyance as he has a catheter. I agree that sometimes it isn't worth putting them through all this, or indeed ourselves. I hope things are going as well as they can with your husband.