Trevor home and I am so tired already!!

[Bronwen]

Trevor came last Fri after 6 week assessment..he seems better and a little more lucid and I went around with a grin on my face for days because I had him home.

Then he became sooo constipated..it took two visits from District Nurse to "deal with it" and today has been the day from hell. Being unwell with this problem has thrown his dementia into turmoil plus he can't get to the toilet in time..no need to say anymore..I have been washing clothes and bedding all day. He is also wandering in and out of rooms and I have to keep following him to see if he has had an accident in the rooms, which he has...I just feel so tired, scared of his attitude and wish I could get a good night's sleep as I did when he was in hospital..but then the guilt sets in when I have these thoughts.

Thanks for letting me ramble..I did so want him home and still do but I think I had forgotten how hard it is.

love
Bronwen x

 

[Izzy]

Thinking of you Bronwen. xx

 

[Helen33]

Dear Bronwen,

I can feel your exhaustion over the internet Anybody would be flagging at having to deal with this day and night.

Please ask for a re-assessment of care needs Bronwen as soon as possible as you can't be expected to keep this up indefinitely.

Love and a (HUG)

 

[Nan2seven]

Dear, dear Bronwen - I am so glad you have your Trevor home at last and know that you have been looking forward to it. But how my heart goes out to you ... You are so torn between delight at having him home and weariness with all the extra work involved (which you did not expect) due to his constipation.

I do so hope that it all settles down soon. Brian had it when he came home from one of his respite weeks and someone recommended (NHS helpline) that I give him Lactulose. (I got it at the local chemist's.) It worked like a dream. But perhaps you are already treating him with something else. Just thought I'd mention it because it worked so well for Brian.

Thinking of you and sending love, Nan XXX

 

[lin1]

Sending you love and



I do hope it gets easier for you soon.

there were a few times when mum was contipated that the treatment worked far too well, at least with mum it was all in one place

 

[Grannie G]

Dear Bronwen

It is so cruel. You wanted Trevor home so much and now you are too exhausted to have any quality time together.

How much help are you getting Bronwen?

When Dhiren was home I had 2 hours daily Mon-Fri , and half an hour morning and evening to help with dressing and undressing. I also had an hour a week for a bath.

But I had no help at night and so little sleep.

So I repeat. How much help do you have during the daytime Bronwen?

Love xx

 

[sleepless]

Bronwen, I second what Nan says about Lactulose. When Dad's taking iron tablets, constipation would be really bad, but Lactulose gently keeps things moving ok.
Some laxatives are just too much. Better to use something gentler every day, than a strong laxative that causes more problems.
Thinking of you,
sleepless.
ps, also, as it's a liquid, you can easily adjust the amount taken, as needed.

 

[lesmisralbles]

Talking about poo now

Following someone round.
It is that that tires you out.
The washing and the bedding, middle of the night. And poo/ smell is not an easy thing to wash out. One thing waking in the night, another cleaning up poo. I understand X

Trevor is at home Hug to you both X

Barb X

 

[larivy]

hope you have a better night tonight the last few nights i have only had a couple of hours so i know how you feel hope trevor settles soon love larivy

 

[Bronwen]

thank you everyone for your support..sorry to say I have had a night from hell as he can't reach the toilet in time now and his dementia has dropped to such a level he won't co-operate, so we are having dirty feet marks all over the carpet, dirty bottoms sat on the bedspread and Trevor calling me a bad tempered cow..honestly if I can deal with this I can deal with anything..I think??

I havent any help in at the moment as I was keen to have him home and the social worker had done nothing about putting care in place so I said my family would be there for few days..and it was fine..he was more relaxed and I thought we were winning, but this toilet problem has completely thrown him just like an infection, and I have been caught unprepared.

The lady from Direct Payment scheme came yesterday and I have set up a bank account and they will pay money in for me to employ carers. I have seen lady from agency and she on hand for the call to set it up,so I thought I was on the ball.

I will ring agency lady monday and ask her to send someone over and I will pay myself as I do need some help now.

Regardig laxatives, Trevor had suppositeries (district nurse calling) and sachets of Maccrogol so it is no wonder he was in such a state. Thankfully he has slept since 6.30 this morning so have managed to get on top of cleaning and washing.

Thanks for letting me put it in words, it is not a subject I would like to discuss with my children. I am trying to maintain his dignity even if I am a bad tempered cow...(by the way I have never heard Trevor talk to me like that ever so I can't judge him).

love
Bronwen x

 

[Helen33]

Hi Bronwen,

I am really pleased that you are on the ball in sourcing some support. I hope that it starts very quickly. Are you going to ring the Social Worker though and ask for a re-assessment of care needs because they will know that things can change very rapidly (which they have)?

Good to hear that you are on top of the cleaning at the moment and I hope you get time to put your feet up for a bit. Are you planning to watch X Factor?

Love x

 

[sad nell]

Bronwen I am so sorry that the toileting probs have spoilt Trevs homecoming, I well remember poo foot prints on each step, it can just feel so overfacing, hope things settle, will Trevor wear pads, the slip in kind worked well at this time for my Trev think they were tena, have you a kylie sheet. hope you manage some sleep, thinking of you both love Pam

 

[Bronwen]

Hi Helen. will certainly be watching X factor after Strictly. Thought I was in trouble though as Trevor insisted on going out for a few pints and became so stroppy because I said he wasn't well enough..fortunately he fell asleep before I had real problems.

Hi Pam.yes my neighbours went out and bought some plastic sheeting and helped me turn the mattress and bought pants and pads, so am prepared now!

God what a horrible disease this is, it is so relentless, just when I was thinking we were ok for a while.

Enjoy your Saturday evening everyone in front of the TV....seems so long ago since I dressed up for a saturday night out, but at least I did have them.

love
Bronwen x

 

[Nan2seven]

Dear Bronwen,

Thinking of you this morning. Hope you had a reasonable night without too many interruptions.

B--ts make some terrific "Staydry" pants which can hold and contain absolutely EVERYthing, so if you haven't yet tried these, do give them a go.

I know exactly how you are feeling about the bad language being hurled at you: you wonder where on earth it comes from. Brian has been the same with me, calling me the most awful names and I have to confess it quite distressed me. He asked me one day last week why I was looking upset and tearful, so I told him what he had said. (He had had a sleep in between saying what he did and seeing that I was upset.) "I said that? I can't believe I would say something like that. I am so sorry ...". He was so contrite. And it is quite genuine. But, sadly, it doesn't stop the same thing happening again say the very next day. It is so very difficult to take it "in one's stride" when never having had to deal with ANY bad language at all.

Hoping things are gradually improving for you, and sending love, Nan XXX

 

[Contrary Mary]

Dear Bronwen

I so sympathise with the toileting problems. We are having that with Mum at present, but largely contained by some very good incontinence products which I buy from a local company.

I do hope that you can fix up some support quickly. It will make a bad situation just that little bit more bearable. I am so grateful for the increased package Mum now has.

Mum has only been home from hospital just over five weeks but it feels like forever when things are not going well. I am not surprised to hear how tired you are.

I do hope things at least settle down a bit for you.

Mary
x

 

[Juliet17101]

Oh Bronwen, it must be so hard for you. I remember getting my dad home like that and within hours we were exhausted again. All that washing, people don't realise the things that really tire carers out. Thinking of you right now. Hope that you get a little 'me time' if that is at all possible.