Caring for my dad

Tweedyamy 

i know exactly where you are coming from, I wish I could offer you some advice, but there is nothing I can say that will help other than I understand.  I really feel for you and your parents. It’s a very hard road which we are going down and you can feel all alone. But just know you are doing the best you can for your mum and dad, remember that. Xx

Hi TweedyAmy so glad that you felt able to come here and get that off your chest and I hope it has felt at least a little better just getting it down on paper and in words.

I know that you said that you were not looking for advice But I am going to give one bit only and that is to ask for more help as you cant sustain this level of care for much longer before you become unwell yourself.

Meantime Im sending some hugs which I know wont be of much help in the practical sense, but I hope it helps to know that others care and are thinking of you. xxxxxx

Thank you for reading and replying, it's good to know that others understand xx

Thank you Granny59. It really did make me feel a little lighter to get it all out. 

I don't know what more care there is to have though without dad going into a hospice which we really don't want. The closest is an hour away and I know the guilt mum and me would feel would be unbearable. The carers who come once in the morning will not lift dad, so even if they came more they couldn't help. They even refused to take off their boots, meaning more mess for me to clean up after they left. I've now bought disposable shoe covers for them to wear. 

I know that there are night sitters at Marie Curie, but I assume they just sit for company and won't help in toileting/ lifting etc. 

The hugs mean a lot, thank you. It really does help to know there are people out there who care xxx

Hi there did I read that you had a Macmillan Nurse come into speak to you?

If you did, give them a call asap and see what other help is available for you as they will know what is available how to access this and who to contact to get it.

As far as I know Marie Curie have Nurses so they should be able to to the toileting, cleaning up etc and let you get a rest.

The other thing you could do is to give the Macmillan Line a call in the am and see if they have any info that they could access to be of some help for you with services etc. 08088080000.

x

Yes, Granny59. She came round on Tuesday and I thought she'd sorted out pretty much all the help we could get. She's off all this next week unfortunately but did she we could call to speak to someone else there if needed. 

I'll have a word with my mum about it all and see what more can be done for us. Thank you for the number, much appreciated. 

In a strange way I feel like I SHOULD be doing it all on my own and I don't know why I feel that way. 

Thank you again xxx

Hi TweedyAmy as humans we are programmed not to ask for help it is often in built into us unfortunately. You are not alone in this so dont beat yourself up too much about it all.

Sadly, and It has happened to me, when we try to do it all ourselves our own health suffers and then people need to be brought in quickly.

There should be someone else that you can speak to and ask about the Marie Curie service and maybe an increase in the care. 

Please do come back and let us know how you get on.xxxxx

New developments today:

I went out for a forty minute proper walk this morning with my dog after preparing mine, mum's, dad's and my dog's breakfasts, helping my dad to the toilet twice and bringing him various drinks on top of working. When I got home I opened the front door and was greeted to grumblings and ranting from my dad about me having woken him. Mum tried to explain that I was here to help. I put on the tumble dryer and then sorted the recycling.

Then, I went out to town to pick up prescriptions for my dad and to get a couple of grocery bits. As I came home dad was on the commode with my mum trying to help him. He grabbed the back of her neck very roughly and hurt her to the point of tears. I told him off and he said that he was in immense pain. Just 5 minutes earlier mum said that a district nurse had visited while I was out and he lucidly told her that he was in no pain whatsoever. The nurse said she'd urgently ask for help for us from Marie Curie. 

We got him cleaned and back into bed, then I began the lunch run, asking repeatedly what he wanted and having to cut his sandwich in exactly the way he wants. 

I said to mum (as said before, she's badly disabled and much smaller than my dad) that it's maybe time to get a hospice involved and then she told me what happened the other night. He got frustrated and swung out at my mum, sending her flying. I immediately went upstairs and called the district nurses to enquire about hospice care. They called back just now and we need to get in touch with MacMillan about a hospice. 

We said no hospice, but can't have mum being attacked and hurt in her own home. After he did apologise for getting frustrated, but I said to him being ill is no excuse to hurt mum. We're at our wits end. 

Just do it sometimes things dont pan out the way we want but its very difficult dealing with challenging behaviour and your mum is vulnerable  .You have both done as much as you can and have no reason to feel guilty about anything  Your Dad will receive good care in the hospice they can get on top of pain and help him deal with his changing circumstances.At the end of the day you need to protect your mum Things will only get worse and you dont want your last memories of your Dad to be awful.Good luck. .If its any consulation a lot of us have to make some very hard choices here and really understand what you are going through .All the best keep posting xx

Thank you Granny Sue. 

The problem we'll have now is that the nearest hospice is an hour's drive away and he's declining so quickly the journey may push him over the edge. 

If we can have more help in the house, then we may be able to cope better. He now keeps apologising for getting annoyed. He's wanting his bed up, then down, then up, then down now, so I've giving hims something to settle him in the hopes that he'll sleep. He keeps saying he wants sleep but can't drop off, so fingers crossed more sleep will mean more lucidity when he wakes. 

The hallucinations are getting much worse today too, shadows all over, mice running round the room, a dog on his bed and a big hole in the floor that people get thrown into. He's also fixated on his Uncle Bruce today who died many years ago. He was asking if Bruce knew he was poorly and we had to explain that he'd died which was upsetting for us all. 

Everyone on here seems to know exactly what we're going through. So why on earth is terminal illness not shown in its true light on film and tv.? Rather than knowing what to expect, everything is portrayed as: doctor's room - crying - short illness in a comfy bed - no mention of toileting or difficulties - total same character and personality of the patient - quick and painless death. Where's the realism there? I feel completely unprepared for and overwhelmed at what me and mum are facing.