It’s been a really grim couple of weeks following on from the slog of this year caring for my husband with heart failure. I’ve been caring for him for about 8 years but a heart attack in March has left us living on a knife edge with fluctuating symptoms and frightening flare-ups. I felt very down for about two months recently, but now the anxiety had taken over. Feel exhausted from the continuous emotional rollercoaster, but sleep is no longer the friend it was, partly because of anxiety and partly because my husband has disturbed sleep and terrible fear when he gets breathless at night. He was really ill as a result of side effects from a new medication last week, and there seemed no time to recover from the stress of that as I still need to keep the show on the road, which is how it goes continually. I have been contemplating talking to my GP about my depression and anxiety for a few weeks, and about the possibility of taking anti-depressants. I have always avoided them in the past, as was worried about side effects, but think I am willing to try them now. Has anyone got any experience of taking them that they would be happy to share? Just can’t see how I can carry on like this indefinitely. Any thoughts very welcome. Thank you.
You need help and rest.
Antidepressants made me so half awake and I didn’t have energy for my caring role.
When did your husband last have a Needs Assessment, and you a Carers Assessment, from Social Services?
Hello bowlingbun, thank you for your reply, and for sharing your experience of taking anti-depressants. From what I have read, they can be a rather blunt and ineffective, but necessary instrument at times. But what you recount is the aspect that worries me. In the past I have been fairly successful at recovering from depression without medication, am I am doing better than I was about six weeks ago. However, I think the problem has just gone underground, been comfort eating, and frankly that’s not a good sign. No we haven’t had assessments either of us. I can see that would be the way forward long-term. Local council, like many, is a state at present. Perhaps wrongly, I am not hopeful of the effectiveness of the service. I am currently working my way through the Attendance Allowance form. Joy. Everything seems to take so long to get done, have had to work on it when husband is asleep. I have been keeping records of all phones and contact, medical or other, and sending all forms etc by tracked post. I remember you suggesting that in a reply to a previous post. Thank you again.
The virus is making this year even more difficult. Could you take an afternoon nap to recharge your batteries? I know it’s difficult putting yourself first, but everything seems so much worse when you are tired. Look at all the jobs you do. Can you ditch some, gardening especially, and ironing. Housework could be done by a domestic help - get that AA form done asap. If your husband wakes struggling to breathe, what does the GP say about this? (Would oxygen help?). Do you have a slow cooker or pressure cooker to do “one pot” food, a dishwasher, a tumble dryer? Have you thought about some counselling? I’m sure you have lots of fears about the future that you cannot share with your husband. I found counselling really helpful. Are you aware of NHS Continuing Healthcare?
Hello bowlingbun,
I couldn’t agree more, this virus has made everyone’s life more difficult and uncertain. I sometimes have a nap when my husband does, but often feel this is a chance to catch up on other things. You are right, some things definitely have to be let slip. Ironing went a long time ago, and I’ve never been much of a domestic goddess : ) I enjoy gardening, and don’t mind a bit of wilderness round the edges. An attempt to stream line the domestic set-up is a very good idea. My husband’s breathing is worse at night and early morning, because being in bed means fluid gathers in his lungs. Will discuss with his heart failure nurse though further, especially the breathlessness/anxiety viscous circle. His GP’s surgery is a waste of time at present except for blood tests, and my husband doesn’t trust the doctor very much due to failure to diagnosis and mis-diagnosis in the past. I do have many fears about the future. We have had discussions about what he wants for his treatment at the end and what he wants after his death, and I am pretty clear on that. However, it is the actual decline towards the end and the responsibility of trying to make sure that is as peaceful and dignified as possible that concerns me, whether I will be up to the task. Not really something I want to burden him with. There is no real saying how long he has left really, or when things could take a downward turn. I see a real decline in his capabilities physically over the last six months though. I would appreciate counselling indeed, couldn’t afford up go private at the moment though. Will keep chipping away at the wall though. Just got to check the AA form through and get medical paperwork together for it now, then it will be done, thank god. Had some help with it on the phone from an experienced friend who is a carer too, which was a godsend. Thank you again for your advice, much appreciated.
I have no experience of this, but just wanted to ask - has your husband been seen by an OT? If not this might be worth arranging as an improved sleeping position may improve his sleep - and if he sleeps better, then will you too.
Everything is SO much more difficult when you are sleep deprived.
I was wondering about the sleeping position too.
He could have an adjustable hospital bed provided free if that would help, through Social Services, but that presents challenges too, in terms of space, and where you sleep.
With regard to “end of life” care, that is exactly what NHS Continuing Healthcare (CHC) is for. If you look this up on Google you will find the CHC Framework. It is available both for residential OR at home. You should feel supported throughout.
Do you have a hospice in your area. Where I live, the hospice is not just for people right at the end of their life, but also supports those who have serious illness, like your husband. They have a day centre too, which would mean that relatives have some time alone to rest.
This sounds like a difficult situation for you, I wonder if you’ve considered coming along to one of our care for a cuppa sessions?
We’re running series of online weekly meet ups for carers to get together and chat informally. People say they’ve found it really helpful and supportive and it’s nice to be able to take a little bit of time for yourself. There’s no pressure to share any more than you’re comfortable with. Join up details are here:
Hello Ingrid,
Thank you for your comment, and for the information about the care for a cuppa sessions. It sounds something that could be beneficial, thank you
Thank you for your comment and taking the time to respond. An assessment by OT is a thought, I think you can self-refer in our area. We have raised the head end of the bed on blocks at present, and my husband props himself up on pillows, but no doubt things could be improved there. Needing to be more upright is one issue, but the night is fertile ground for anxiety fuelled wakefulness. So the anxiety is also a big issue. I am encouraging my husband to speak to his heart failure nurse about the anxiety, because that may be causing as much distress as his physical symptoms. I have done a little research about our local hospice recently, I think it would necessitate a referral from his GP. I don’t know whether he needs palliative care as yet, though I think he would benefit from more all round support, as well as medical help. I agree with you and bowlingbun…everything is much worse without sleep. It’s easy to get caught up in day to day firefighting. I need to think longer term, and keep stamina for the road ahead.
Hello bowlingbun,
Thank you for your further thoughts, and your wealth of knowledge. Ignorant when it comes to CHC, I will do some googling and get myself up to speed. I will also look into hospice services. A friend of mine had positive support from our local hospice a few years ago when her partner was dying at home, so I will have a chat with her too. The hospital bed is something to consider, I don’t think my husband would feel happy about it yet though. Thank you again, information like this is such a great help. As well as knowing others have navigated this path before.
