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New to dementia journey - Page 91 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
936 posts
No words Pet but I have a huge amount of admiration for the compassion and strength you have shown the last few years.

My thoughts are with you and your family.
So very, very sorry, Pet.

Thinking of you.
Hi Pet,
Sending hugs at such a hard time, no doubt you will have a mixed bag of emotions but you can have no doubt you have tried everything possible and been there every inch of the way for your husband. Even the end stage palliative phase can vary enormously. I care for a client who was declared end stage over 2 years ago and she still smiles every day. In some ways when you have to stop fighting for futile treatment it becomes easier to accept things.
Oh Pet, I am so sorry to hear that. I hope they can make him comfortable. Sending you hugs and strength at this difficult time. You have done a wonderful job this far and I know will do so until the very end. You are a remarkable lady. xx
Dear Pet, poor hubby. It sounds like he, you and the family are at the next stage of the journey. I hope they can make him more comfortable and you all are able to have a few more pleasant visits.

If the nursing home won't reposition the flatus tube, would he be considered for a hospice place?

Sending lots of (((hugs))) your way,

Hubby still in hospital. Yesterday he needed rehydration via drip. Something to do with the UTI. That's clearing but slowly. Possible now that he will need food purreed, and thickened drinks. The hospital want to have a meeting with the nurses at the home, to discuss his nursing needs, to ensure they will be met. Must admit I am feeling emotionally drained,and the journey to and from the hospital is tiring. Plodding on.
Moments of feeling angry, that hubby is suffering all of this, especially when I see older men enjoying life. I don't resent that they are, just that hubby should be too. Feel robbed.
So sorry to hear this Pet. You are doing an amazing job. Hospital visiting is just exhausting. Would you feel comfortable taking a day off? I know it is hard when he is so poorly, but going every day is hard on you and sounds like you need a little recharge?

I relate to the idea of feeling robbed. It is the Easter holidays and lots of grandparents out with their grandchildren. Makes me so sad that my kids and Mum don't have this relationship any more. Kids are amazing with her and very tolerant of her dementia, and she loves them to bits and tries so hard, but still makes me jealous of all the other fit and able grandparents! I think it would be weird if we didn't feel this.

Sending lots of hugs
Its a struggle. The hospital, as good as they are, keep changing goal posts. I day hubby can go back to to the nursing home as long as nursing staff can sort the flatus tube, then as long as they can do enemas. The home say they aren't able to cope with the flatus tube, etc. In the meantime, hubby is still having potassium , the levels become good , them wham, they go back down again. He dehydrates very quickly too,so has the drip for that. In the meantime, I found out yesterday, that someone fro the home went to do an assessment on hubby, on the 5th April!! No one invited or even informed me.I'm so cross. Hospital staff say it's a nursing home, so nurses should be able to nurse, I agree. At the moment, hubby needs hospital treatment. Me, I'm emotionally drained, and lacking in motivation for much. Watch this space, and Hubby's needs are going to be met whatever!
Oh Pet, sorry to hear it is still a struggle. I have felt lost in the whole hospital system in the past. It often felt to me that there was no consistent answer. Dad was in for 9 months at one stage and it is hard. Just sending you strength. Keep chipping away at home and hospital. it is all you can do.
(((HUGS))) Pet, you are in a horrible situation.
At times I've adopted Survival Mode, i.e. meeting the most basic needs in the simplest possible way, telling myself "the rest can wait".

Whilst a nursing home has to have a qualified nurse on duty at all times, the vast majority of staff will not be trained nurses, and I suspect that is why they say they can't manage his needs at the moment.
It's a real shame that you were not present at the home's assessment of him at the hospital.

Would it be better if he was back at the home?
If so, then talk to them about
a) what additional needs he how has they they don't feel able to manage properly
b) what EXTRA staff they would now have to employ in order to meet his needs fully at the home.
Maybe the solution would be for CHC to pay for extra staff there?
936 posts