I need some support please. I am so stressed about everything that I have been hitting my arm. First was slaps, now I hit it, because I am so frustrated and angry that it has to come out. I need help please
No thanks needed honestly; just look after yourself and your loved ones and hope you have had a chance to chat with MacMillan/CAB today. Will be thinking of you all. Jules x
Hi, didn't see the Mac/CAB lady today. Chris was too unwell. He had a disturbed night though he can't remember. I went to Tesco and when I came back his resps were above 30, and he had a temp. He's so tired too from his breathing. He can't take deep breaths due to fluid in his belly. So I called out the Dr and she thinks may be infection so on antibiotics now. I've been doing his temp etc hourly, still has one and resps still up. Even done his blood pressure which did fall but better now. I'll just keep eye on him and if he gets worse, I'll call an ambulance. He does seem better than earlier which is good. I feel run down. Didn't obviously sleep well either. Had a melt down in Tesco which wasn't good. Almost like a panic attack. My friend talked me out of it on the phone. The CAB lady will make a home visit, she's going to phone me. I want support but not sure how or what I need. Will at his friends for tea, actually his girlfriend..... She's a lovely girl. She has made him so happy. He really loves her lol. So I'm missing him, but he'll be home soon. Hope you had a good day at work, xx
Sometimes there just seems no let up and it's so difficult to switch off the the fears and worries that the cancer brings with it. Sometimes I felt like my head would explode. My hubby could and did sleep for England during the last six months of his illness both at night and during the day but I was not involved in physically looking after him (apart from helping with bath/dressing) and he was aware of everything going on. I would imagine that Chris gets so frustrated and that cannot be easy to witness. My hubby's world came shattering down because he could not work and he was on anti-depressants but to be honest I am not sure they helped much - he just withdrew into the world of TV when he was awake.
I am not sure if it would help you but when I felt at the end of my tether I wrote a list of what I thought would help me and then presented that to the GP and palliative care team which helped them assess the best way to put support in place (in our case it was home visits from community nurses on the days when I was working (hubby did not want me looking after him as he coped better without the emotional link- upsetting for me but followed his wishes always).
Unfortunately it seems that Chris has and is experiencing quite a few added problems caused by his cancer which makes life that much harder for you all. I hope the antibiotics help to make him more comfortable.
I love the idea that Will is at his girlfriends for tea; bless them both, it must be good for him to have an outlet now and again.
Hope you can get that home visit help sooner rather than later and you can still chat to the nurses here for support too if needs be. I am sure you know that you are doing everything you can but even though you have nursing as a career it's so much more difficult when caring for your own loved one as there is the huge emotional drain that you can never really put to one side. I was able to leave hubby but still found myself feeling guilty when I did, living on edge with the 'what's ifs' but had a good couple of friends who used to help me relax once a week for a couple of hours. I know I was lucky.
Will keep fingers crossed that Chris's condition improves and you can both be a little more settled. Jules xx
I'm not sure if it's the new heart meds he's been started on, but he's hungry but as soon as he goes to eat he feels nauseous and finds it really hard to eat more than a mouthful or two. Worries me xx
Could even be the antibiotics causing a reaction but you would probably need to speak to the docs about the nausea as they possibly could give him anti sickness drugs if its a real problem. My hubby was on a mainly liquid diet (fortified shakes on prescription) for quite a while and before that it was mini meals (less than a child would eat) as and when he fancied something. I operated a his and her fridge for nearly a year and it was mainly trial and error as to what would stay down but definitely small portions. Pineapple was something he found helped with the nausea or just plain biscuits. Hubby's appetite fluctuated a great deal but because the cancer was in his lung linings as it grew he felt full after just a few mouthfuls. I know how worrying it can be. Jules x
Hi Mandy. Just read through your and Jules messages. It's the worst thing ever to see your loved ones suffering. I have never felt so helpless in my life when Ali took turns for the worse and was suffering. I have been thinking about you and Chris since my last message. All u can do is try to make him as comfortable as possible. If your in doubt about anything with him ring your Gp whatever time of day or night. Hope the antibiotics work on his infection. Hopefully McMillan will help you sort you worries out if it's not enough having Chris to worry about. I hope work are good and sympathetic towards your situation. Work is the last thing anyone in your situation should have to worry about It's like one big nightmare that never ends. Things change so quick. One day up the next so low. Just try to keep strong lass. I know how hard it is but you have to somehow do it for the family. My heart really does go out to you Mandy. Take as good care of yourself as you can. Xx
Chris is back in hospital, he went in on Thursday or Friday last week, I can't remember. He hasn't eaten more than an occasional small mouthful really since last Monday. He had a temp and still has one, he was breathing so fast as I said before. He was and is so sleepy all the time. They've taken him off one of the new heart meds to see if that's the cause of the nausea, and done cultures of everything. I just feel helpless and got totally overwhelmed this evening. The trouble is Jules I don't know how to ask for help and support or what to ask for. Everyone says support but I'm not sure what they mean. Maybe because I've never been in this situation I don't know what I want or need. I just can't turn to anyone and I don't know why xx
