Jaci 9 years ago

Hi Andrea, its me again!  You cant even begin to imagine just how your words of support and comfort are helping me.

Re the sleeping, fortunately we live in a bungalow so when the hospital bed was delivered, we moved our own bed into another room and i had a single bed put next to my husbands, but as you know night times are not good and even though we go to bed each night, lots of nights we end up back in lounge because of panic attacks.

Thank your for tips about ice lollies etc, at the moment his diet is very limited he has 3 of the special drinks prescribed by PC nurse, and then if he has anything else it has to be homemade soup,eggs beaten up etc. However, he has now started being sick most mornings,and has difficulty swallowing. 

Thanks again for tips and I hope you don't mind if I go on a bit

Take care 

Jaci 

Jaci 9 years ago

Hi Andrea, its me again!  You cant even begin to imagine just how your words of support and comfort are helping me.

Re the sleeping, fortunately we live in a bungalow so when the hospital bed was delivered, we moved our own bed into another room and i had a single bed put next to my husbands, but as you know night times are not good and even though we go to bed each night, lots of nights we end up back in lounge because of panic attacks.

Thank your for tips about ice lollies etc, at the moment his diet is very limited he has 3 of the special drinks prescribed by PC nurse, and then if he has anything else it has to be homemade soup,eggs beaten up etc. However, he has now started being sick most mornings,and has difficulty swallowing. 

Thanks again for tips and I hope you don't mind if I go on a bit

Take care 

Jaci 

Jaci 9 years ago

Hi Andrea, its me again!  You cant even begin to imagine just how your words of support and comfort are helping me.

Re the sleeping, fortunately we live in a bungalow so when the hospital bed was delivered, we moved our own bed into another room and i had a single bed put next to my husbands, but as you know night times are not good and even though we go to bed each night, lots of nights we end up back in lounge because of panic attacks.

Thank your for tips about ice lollies etc, at the moment his diet is very limited he has 3 of the special drinks prescribed by PC nurse, and then if he has anything else it has to be homemade soup,eggs beaten up etc. However, he has now started being sick most mornings,and has difficulty swallowing. 

Thanks again for tips and I hope you don't mind if I go on a bit

Take care 

Jaci 

AndreaDaughter 9 years ago

Dear Jaci,

You are certainly not going on in any way - I remember having one friend of a friend who'd been in exactly the same boat as me 8 years previously and she was my lifeline of understanding (& courage, reassurance & sanity at times!) although I felt selfish that I was thankful she understood completely, I was also very very grateful that she had come into my life in the most random of ways. Just knowing that someone had trodden this path before me and had somehow survived, helped me & therefore my mum too, enormously.

Have you been given a wheelchair by PC Team? To help easy dads anxiety, I did used to wheel him a circuit of mum & dads downstairs, many times over, often with his favoured music on or having an old-fashioned singsong with him. Oh the 'laps' we did of the lounge, hallway & dining room! Seems crazy now but it gave him some respite from the anxieties that he had and it actually gave me a sense of helping and also gave me some beautiful bittersweet memories. You can probably tell that he & I were very, very close but even at this late stage in our father-daughter relationship, we bonded even more through those wheelchair laps. Maybe it's something to consider? I would imagine night times are becoming the dreaded times in any 24hrs as there is an innate pressure that night time is for sleeping, stillness & quiet. This can go out of the window when you're living in the palliative stage bubble, I promise you! If you want to listen to music, listen to listening books from the library maybe (or there's an 'App' called 'Audible' - I think that's what it's called - I'll go check for you) or wheel him around, do a crossword (I used to do crosswords 'on behalf' of dad so he could simply listen to my awful answers x) then it's allowed - you've earnt the right to x 

Wishing you a peaceful evening & night x 

(Maybe Night Carers is also something that may be suggested soon? We ruled it out initially but then did agree to it on the condition that we would be woken if there was ANY change, other than the norm x )

Love Andrea 

Ps don't doubt that you are doing great x 

AndreaDaughter 9 years ago

Edited by AndreaDaughter 9 years ago

Could I also point out, as it may seem that I did everything and my mum did nothing. Mum was amazing and we kind of played a tag-team and gave each other respite within the home (I moved back in and ran my home & children from afar, along with a very supportive husband)

Mum doubted herself often and most evenings felt that she wasn't strong enough to cope with the night or day ahead. But she did. She always found the courage to. I think, as humans, as loving wives, you do. There were times when she very nearly put her needs ahead of his, as in almost accepting that he may need to move into a hospice but didn't quite. And putting her needs ahead of dads would have been fine. You mums are AS important as those pesky dads of ours. So always remember that your needs are just as precious. It's a huge ask to nurse someone at home in the circumstances you are in . I'm not encouraging you to not have him at home. I'm simply saying that as the situation evolves, your mind should be allowed to evolve too - if nothing else, that lessens the pressure that you are under right now xx my mum found it hard to open her mind to possibilities. Once she did, although, actually nothing changed (meaning dad remained at home) I think she felt she was drowning less in what life had thrown at her xxx