This seems really strange for me to be writing down what is happening to my dear husband,and maybe I am not really entitled to join this page, as although my husband has CLL ,Three and a half years ago we were was told he had severe heart failure and only had MONTHS to live. It was like our world stood still. Sadly he is now under Palliative Care,and they are all wonderful people, but it is like being in a bubble waiting for it to burst, and such a lonely place , even though our Daughter is wonderful help. Thank you for listening.
Hi Jaci I wouldn’t worry about if you should be posting or not, the community is here is for people just like you. Happy to listen and hope we can help make things a little less lonely.
Thanks
Hi Jaci, I completely understand you feeling as though you are in a bubble, I felt the same way when my mum was in Marie curie. I didn’t know how to feel or what I should do except just be there for when mum needed me - the Marie curie team were amazing, so caring, patient, kind and compassionate, nothing was too much trouble for them. They are wonderful people
Hi Mark and Elsieslass,
Thank you for taking the time to reply. To Elsieslass I am sorry for your loss,but pleased you got such great support.
As I said this is all new to me but I am feeling really low at moment,and everybody means well but unless they have been in a similar position it is hard for them to understand. Even though it is hard looking after my dear husband at home, i would not have it other way, but some friends keep saying it is too much for me. I really dont need to hear that,as it is my choice even though it is a strain. Also it is so hard trying to enjoy the time we have left together,knowing any minute it can all be taken away.
Hi Jaci -
I picked up a routine email from Marie Curie and noticed that it was introducing a forum for those involved in some capacity, with terminal illness. I then noticed your post and felt compelled to register as I am just starting to feel brave enough to read of others similar situations x
As you will note from my username, I am a daughter but very close to my mum. Between us both, we cared for Dad (with the support of palliative staff) at home. He was a heart failure patient who, after two bypasses spanning 25 years, had the HF diagnosis 3 years ago. I now understand that Heart Failure palliative scenarios and all those involved are possibly in a club all of their own? If you need any support or advice on an emotional level, please feel that you can private message me - if mum and I had had an outlet, we may have taken advantage of it xx thinking of you, be gentle with yourself, go with the flow, don’t look back or beyond x lots of love
Ps I’m 45, my dad was 73, my mums 72 x
*MarkWilkin: edited as we recommend using private messages rather than sharing email addresses. Thanks*
Dear AndreaDaughter,
Thank you so much for your kind response,and I am so sorry to hear of your sad loss. You obviously have been a tower of strength to your Mum,as our daughter is to me, but you are so right that everything surrounding HF is in a club of its own.,and is very rarely talked about.
Thank you for your offer of advice and support on an emotional level,I would like that very much.
I am so pleased you were brave enough to make contact,and maybe we can help one another,as it is many years since I lost my Dad,but I also nursed him. We were really close as my Mum died when I was only 14yrs old.
I am sure you and your Mum will be a great comfort to one another.
Thank you again for your words of encouragement,it means a lot.
Lots of love.
Hi Jaci,
I can’t lie, I’ve had a tricky week, emotionally but HAVE been also wondering how you are doing? I hope you are finding strength with each ‘hurdle’ that is being thrown your way and try to remember that although you may not feel that you can get through each day, you will. Somehow you just do. So, my reason for this post is just to let you know that you are being thought of and prayed for. Wishing you Peace, Strength and Love
Andrea x
Dear Andrea, really sorry to hear you have had a tricky week, I know it is not easy, but it is so kind of you to still have a thought for us. Not been particularly good week as my husband is getting weaker with every day but remains as stoic as ever, it is heartbreaking just having to watch the person you love slowly slipping away from you. I hope you and your Mum continue to gain comfort from each other.
Please can I ask did your Dad sleep a lot towards the end? The PC nurse tell me that this is just a natural progression.
Take care and love to you both.
Javi
Evening x Dad did sleep a lot but was anxious not to sleep in bed (he was up to having a LOT of pillows) for a time and so, sadly would sleep on an upright chair, resting his arms on a table - it was a shame that he felt unable to relax in bed as he would’ve seemed so much more comfortable, but you go with what your loved one wants don’t you? So yes, dad did sleep more and more - at the time we put it down to the fact that his sleep was restless as he wasn’t really in a comfortable position and therefore wasn’t getting quality sleep but in hindsight it was probably the HF xx
Hi Andrea, thanks so much for your reply, because what you describe is exactly what we are going through, my husband has terrible panic attacks when in bed, even though we have a hospital bed that enables him to be almost upright, so like your Dad we end up back in lounge in his chair most nights and I lie on the setee. I jst hope that our conversing like this does not bring back too many painful memories for you, so please tell me if you find it too hard.
Love Jaci
Morning Jaci -
Kind of you to think of my wellbeing but it’s fine - in actual fact, the feeling of possibly helping someone else, even if just for a nano second, helps somehow.
My dad moved downstairs & had a hospital bed and mum borrowed a pull down bed - it’s really important that you look after yourself too - I know it’s not necessarily what you want to hear but it really is true Jaci - can you source a temporary bed to sleep by his side? I understand completely your need to ‘sleep’ by his side and I’m not suggesting you alter this, but maybe a bed rather than a sofa might be a good idea? I can’t remember what those beds are called - the ones that pull down/ push up easily that actually don’t take up much room at all? If you think it will help, ask around or see if your daughter could ask on Facebook, etc? That’s what we did for mum.
How’s his eating? We got lots of lemonade ice lollies and pre-made jellies in for Dad, although that was nearer the end.
Another thing, as I’m thinking, was some oral moisture sticks to help dad feel that his mouth wasn’t too dry or uncomfortable - I only say this Jaci as we had to order them from the chemist and therefore had to wait a few days, when, in your situation you just don’t feel you can wait for anything…they were inexpensive but very, very helpful as we felt in some small way we were helping to care and showing our love for him x
Thinking of you (sorry for bombarding you with such a long post (again!))
Wishing you a gentle day
Andrea
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
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
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
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
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
Hi Andrea, how are you both coping and thank you so much for your kind words of understanding , they are really helping me. Like your Mum I do dread the nights, and have been offered help, but I know that I could not just lie there and let somebody else look after John, and I always make it through.
Just a quick question though, did you find that your Dad’s condition fluctuated? My reason for asking is that over the weekend I was convinced yet again that John was not going to make it, as he actually fell asleep while we had a friend visiting, and slept virtually all weekend and through the night apart from having to use loo bottle, we have tried Convene catheters without success.thankfully by yesterday afternoon he had perked up again. District Nurse called today and did not seem overly concerned.
I really do hope that my queries do not reap up too many memories.
Take care
Jaci
Evening Jaci
I wrote a reply this morning but clearly didn’t actually send it!?! Sorry x
My dads condition didn’t fluctuate, no. He left hospital after a 10 day stay (pneumonia, which he beat 
) and he lasted a month. I would say the first week or so at home his HF level had clearly decreased and then the remaining time his decline was gradual but definitely a decline, as opposed to fluctuating health x
Re Night carers - it’s funny - I suggested that for you but our opinion was similar to yours! Not taking anything away from them at all, it’s just a feeling that if there’s any care or nurturing to be done, you’re the best person to do it? We kept putting it off and even cancelled some that had been arranged for us. In fact we only ended up right at the end having one and even then it was because it was insisted upon. Our condition was that if anything changed, then we were to be woken. Mum moved her bed to the lounge for the night and a lovely, gentle, professional lady came and took over care once we’d settled dad. We were very insistent that we should be disturbed if there was any change and reluctantly we went off to settle in the next room (mum) and I upstairs at about midnight. Sure enough, she gentle called into mum, who in turn got me, at 3.30am as his breathing had changed (his Cheynes Stoking had finally stopped)- as had his fingernails. Well! We couldn’t notice the change in fingernails so she must’ve sat, observing him the whole time, bless her (I had wrongly assumed a night carer would sit on her night duty with a magazine!)We invited her to take a long break in the privacy of the lounge and we then sat with dad the rest of the time. So Night Carers aren’t so intrusive after all, but I appreciate your feelings as mum was exactly the same xxx
Morning Jaci
Just sending you a quick note to remind you that however difficult things are in your world at the moment, you’re being thought of, probably by a lot more people than you realise x
No need to reply - this is just to say thinking of you, hang in there & keep going x
Love Andrea x
THANKYOUAndrea ,you will never know just how much those words meant to me. I will not go on as I have really bad throat and sinus infection, lost voice cimpletely.on second course of 10 day course antibiotics,so feeling pretty awful. Hope you and Mum coping. Love Jaci x