Update on my Dad

[sue38]

Thanks Hazel and Tina,

We have had good news from my mum's consultant tonight. Her scan had shown an area of thickening in her bowel and it was possible that it was bowel cancer. She has been given the all clear, apparently she just has a 'floppy bowel' but it is nothing to worry about. Her pain is probably as a result of osteoperosis (sp?) in her spine. Still not great, but better than we had hoped.

As my friend told me today, still a good chance I will get sand in my bra!

Obviously mobiles won't have a signal in the desert, but we do carry a satellite phone for emergencies. My eldest sister and her family will be around for my mum and dad whilst I am away.

I really don't want to cancel, particularly as am doing it for AS, and don't want to let them and my sponsors down.

Tina, it must be difficult leaving Ken every day. Last night was hard for us when my dad wanted to come home with us and couldn't understand why he couldn't.

If by some miracle they could sort my dad's meds out, we might try and have him home, but we are keeping an open mind. Selfishly, I would rather he stay somewhere secure whilst I am away and perhaps we will tackle that when I get back.

My sister and BIL found him quite good tonight.

 

[Skye]

Sue, that's wonderful news about your mum. You must be over the moon tonight.

I think it's sensible to want your dad somewhere safe while you're away, but your mum may not want that

I hope your visit goes better tonight.

Love,

 

[Margarita]

I would cancel, but my mum is still insisting I go.

I do hope you don't Cancel xx

 

[Grannie G]

Hello Sue

Good news about your mother, thank goodness. Now you just have to concentrate on your father.

If the hospital does try to sort out his medication, I think it`s safe to say he`ll be in for a while. Dhiren was in for 19 days and on home leave for a week, but only because we begged to have him home. So that means nearly a month to stabilize your father with the correct medication.

I hope I`m not tempting fate.

Love xx

 

[sue38]

I have made the decision that I am going on my trek. I always knew when I booked it that my dad's condition might make it difficult. What I never expected was that my mum would be ill (she is never ill) which would have made it impossible. We are over the moon that my mum's illness is not the bombshell it could have been.

We can concentrate on my dad now. Last night my mum and I went to visit. He was pleased to see us, for about 5 minutes, and then we got the impression he would rather we weren't there. He seemed keener to be with one of the nurses, who told us he was lovely and could she take him home with her? We came home a little disconsolate.

My mum and I visited this afternoon and he was better. Still a little unsettled and not content just to sit with us. He has made a friend David who never seems to have any visitors. David sat with us chatting (in as much as dementia patients do chat, not making much sense), and as long as he was with us my Dad was more settled. We are thinking that my dad feels under pressure to 'entertain' us and this is the reason he cannot just 'sit'.

He brought one of the nurses through to the visitors' room to introduce her to us. 'And who are these two?' she asked. Of course he couldn't say, but he did say 'They are MINE' and later (to David) 'they are GREAT'. Just had to bottle that moment.

This particular nurse has not been on duty since Monday when he was brought in, and took me aside to tell me that she thought he was so much better. I asked her if he had been aggressive at all, and she said 'Oh no, he is lovely'.

Could have taken him home, and David too, but he is in the best place. He will see his consultant on Monday. He is happy to kiss us and say goodbye and we are thankful that he is no longer begging to come with us, but waves us off with a cheery smile.

Feeling better tonight than last night.

 

[Skye]

Sue, that sounds so much better, I'm so pleased for you. And I'm delighted that you're going on your trek.

It's amazing how other people can get a response when we can't, quite often a carer can get a smile when I can't. It does hurt, though, doesn't it?

he did say 'They are MINE' and later (to David) 'they are GREAT'. Just had to bottle that moment.

That's absolutely wonderful. One for the memory book.

Love,

 

[Margarita]

thankful that he is no longer begging to come with us, but waves us off with a cheery smile.

Pleased to read that , Of course also that your going on the trek, can't let all that cycling you've been doing all year go to waste

 

[Helen33]

Dear Sue

I am so pleased for you that you are going on the trek. Sticky pics is waiting for your return

You had some wonderful moments today that help to make the journey a little brighter. "they are mine", "they are great" and dad with his friend David.

Love and best wishes and hoping that you get some time for training so that you are in the best condition to enjoy the trek.

 

[Grannie G]

Hello Sue

It`s good news your father seems to have settled and made a friend. You will all feel so much easier in your minds.
I hope the trek gives you the break you sorely need.
Love xx

 

[sue38]

Review Meeting

Today my dad was due for his first review since he was admitted to the assessment unit just over a week ago. The unit rang yesterday and asked if we would attend. This gave me the impression they were looking to discharge him.

We arrived before the consultant and spent 20 minutes in the visitor’s room with my dad. He was calm, pleasant, relevant, smiling and pleased to see us. You would have thought he would be no trouble at home at all, and if this had been our only experience we might well have gone into the meeting and agreed to him coming home.

However, my mum and I visited last night and it was a different story. He was not particularly pleased to see us and when I asked him if he was ‘OK’ he said no. I asked him what was wrong and he was trying to tell me that things had not gone well and he was not happy. This is more like the behaviour we had at home. He didn’t want to sit with us (which is usually the case when we visit) and tried to go back into the dayroom. This door is normally open, but for some reason last night it was locked. I think perhaps a new patient had arrived yesterday and he was rather challenging. He was rattling the door to get in. We could see that if he had been at home the situation might well have escalated. If he decides he wants to go somewhere, even if it is 10.30 p.m., pitch black and pouring with rain, there is little we can do apart from lock the doors and ride out the storm.

So it was with last night’s visit fresh in our minds that we attended the review. Apart from me and my mum we had the consultant, his registrar, a senior social worker (who recalled he had met me before … oh yes ), the senior nurse on the unit, a student nurse, and another woman who was not introduced. I shudder to think what all this is costing the NHS.

We had a very constructive meeting and indeed they were looking to discharge my dad as they feel there is little else from a medical point of view that he needs. The consultant was aware that we had been looking at a particular care home and in view of my mum’s health, my impending trek across the Sahara and above all the unpredictability of my dad’s aggressive behaviour, it was agreed this was the best course of action.

They have (since the meeting) contacted the home in question and they are coming to assess him this week. At the suggestion of the registrar they will not discharge him to the home, but send him there on leave in case it doesn’t work out. This wasn’t something that had occurred to me, but I am happy with it.

I asked for the continuing care assessment and was told this will be done, although I am not holding my breath…

 

[Skye]

Hi Sue, that sounds like a good solution all round.

Fingers crfossed now that your dad and the home get on well together!

Love,

 

[Grannie G]

Hello Sue

Your meeting sounds a similar format to the ward meetings we had for Dhiren.
And while your father may go to the care home on leave, Dhiren came home, on leave. It`s a good format as it leaves room for flexibility.
I do hope all goes well for all of you. It is a very difficult time.
Love xx

 

[Lanie]

Hi Sue

This sounds quite positive and you are beginning to get things sorted, I hope the assessment for your Dad goes well and he settles when going to the home for leave. Good that the news about your Mum sounds promising.

I do hope you manage your trek, it sounds as if a break for you will be well deserved.

Hope everything goes well with all your family.

Take care

Lanie

 

[sue38]

Thank you

Hi Hazel,

I suspect my Dad will 'present' very well to the home. How long that will last remains to be seen.

Sylvia, I recalled after the meeting that Dhiren was discharged home on leave. It does leave the door open and we will not be on our own if the placement doesn't work out.

Lanie, thanks for your good wishes. I suspect that I will need a break to get over the trek

Damn... forgot to go to the gym... again...

 

[BeckyJan]

I shudder to think what all this is costing the NHS.

Oh Sue the times I think and shudder over this

I do hope the home in question is the right one for you all.
I do hope it works out and gosh how I empathise with your Mum. (She is blessed, as I am, with special daughter/s! :

Love Jan

 

[Helen33]

Dear Sue

Step by step and things are getting sorted. I only hope now that your dad settles in the care home and you can relax a bit and concentrate on preparing for the trek.

Love and best wishes

 

[Lynne]

Hi Sue

Just had a catch-up read of this thread, and I'm pleased to see that - touch wood - it looks as if your Dad is getting the care & attention he needs, which could not have been provided at home.

Fingers crossed that he settles, that your Mum starts to feel better, and for your big adventure!

 

[DianeB]

Sending you all the very best not only on Dad settling but also for your treking too. This sounds exciting but exhausting but I am sure you will really enjoy it. Is that the treadmil I can hear calling out your name

 

[sue38]

My dad has been quite unsettled for the last 2 days.

My mum and sister visited on Wednesday night and he was thrilled to see them in a 'thank God you've come' sort of way. One of the residents was being disruptive. Basically she was being rude to everyone. Her language and mobility are good, she came and sat with my mum, dad and sister and laid into them, telling them to get things sorted for my dad. My sister had to get the nurse to take her away. When they left my dad hugged my sister in a 'please don't leave me here' kind of way. They were both very upset and my mum was having major guilt pangs about leaving him there.

Last night my mum and I visited. My dad was not so pleased to see us and wouldn't sit with us at all. He was busy 'sorting things' in the other room. We spoke with his nurse who said the home had been to assess him, the manager from the home was very nice but she had to have time to consider her decision as they were only a new dementia unit (not according to the CSCI website ), and may not have sufficient staff.

It didn't sound promising, and indeed thay rang to say they couldn't take my dad for the reasons above. Still better to find out now rather than they take him for the fees, and then find they can't manage him. So back to the drawing board.

My mum did ask the manager if she could recommend anywhere else and the place she mentioned is a home where a freind of my dad's was a few years ago. He has since died, but his wife (hearing we were looking at homes) rang my mum the other night to recommend it. I have rung them this afternoon and they do have vacancies. I asked when could we visit and they said 'anytime, no need to make an appointment' which I took to be a positive, so probably going there tomorrow...

 

[Grannie G]

Dear Sue.

You are not in a good place just now with such difficult decisions to make. I can only imagine how difficult it must be.
All I can do is hope the home you visit tomorrow feels able to accept your father.
Good luck.
Love xx