No time for me

Over the last 20 years, my wife has gradually acquired multiple health problems and , for the past 10 years, these have become more and more disabling and I have been her carer for these 10 years.
My wife is technically disabled, she gets PIP and Motability. She can get around the house and sometimes can walk outside for a few minutes. However, any walking always results in later pain. She is in constant pain every day, sometime just bearable but often excruciating to the point of tears. Strangely, her worse pain is at night when she goes to bed, meaning we both have frequent sleepless nights. She had years of debilitating back and let pain before having two major spinal surgeries 5 years ago. After a few months of relief, the pain came back with avengeance. It is now much worse.
On top of her back and leg problems, my wife also has type 2 diabetes, interactive thyroid, angina, gout, reflux and clinical depression and takes 15 day different medications, the combination of which lead to unpleasant side effects
My care for my wife is 24/7 and has left me no life of my own, no friends and heavily in debt. Twenty years ago, sense our own house, now we rent and have credit card debt due time having to retire early to care for my wife. I’m 70 and my wife 67.
Covid isolation has greatly increased my/ our daily stress and I am now constantly feeling down with no future toook forward to. Gratefully, I am fairly fit and healthy.But this makes things even more frustrating for me. I have a list of things I would like to do but no prospect of ever doing them!
Yesterday, I had my Covid vaccination. This was because I am over 70. Astonishing, my wife is not classed as vulnerable despite her various health issues and also having been hospitalised four times in the past two years with life threatening sepsis!
I feel so selfish about my feelings. My wife is constantly in great pain and I can’t really comprehend that, there are lots of people worse off than me, I know. But, I don’t know who I am anymore.
Sorry for going on, there’s a lot more on my mind. I’m the sort of person that bottle things up until it all comes out. Just haven’t got another sole to talk to about this.

How you feel is very common for Carers.

As we don’t spend time on ourself we lose sense of who we are

Its its important to carve a little time out for yourself where you can.

Are you able to go for a walk at all each day even for half an hour?

As for the sleepless nights…

My hubby snores so he is not allowed in the bed until I am asleep.

It works for me!

Hi Mawem,
welcome to the forum.

I agree with Cloudygal, you definitely need to have some time just for you, preferably out of the house. I appreciate there isn’t much you can do but walk at the moment - but even a walk and a bit of time to yourself would make a difference, to you overall wellbeing.

Re pain, it’s more noticeable at night - because its a time when you want to relax and there are no distractions to take your mind of it. Your wife might need to jig when she takes her meds, particularly her pain meds so that she has less pain at night. Her pharmacist may be able to advise. Is she under a pain clinic? They are the experts on managing pain. If her pain was better managed and you both got better sleep - that would greatly benefit you too.

Melly1

My wife sleep before me. so i spent lot of nights sleepless.

My wife is more than “technically” disabled as she can no longer weight-bear, she doesn’t however have the pain problems that your wife does. Because of my wife’s condition she will always be in in bed before me (as I have to put her there) : also because she is unable to change position during the night she sleeps on her back, consequently she snores - a lot. I moved out of our bedroom and now I always get a good nights sleep.

I share your frustration over many issues, you spend so much time trying to think for them it’s difficult to still be yourself, there is very little time to do what you want to do, but you do have to make some time for yourself. I go out every afternoon for a couple of hours and would not survive (mentally) without this break.

I still can’t always do what i want to do though, if we ignore Covid for now (as it won’t always affect us quite as much), I’d like to be able to go further afield, but a 45/60 minute journey each way just doesn’t make sense with only two hours available.

You need to have your wife’s pain management reassessed by her medical professionals, and definitely find some time for yourself, every day.

Thanks for your reply.
I do get out for a walk with our dog every day. If I’m out too long, my wife wants to know where I’ve been for so long, so I’m always time and distance restricted, even without Covid restrictions. This has become more of dog time than me time!

Thanks for your reply.
I do get out for a walk with our dog every day. If I’m out too long, my wife wants to know where I’ve been for so long, so I’m always time and distance restricted, even without Covid restrictions. This has become more of dog time than me time!
I might consider your advice about when meds are taken. She’s on 15 meds at the moment, all with different time and roseate instructions, so a lot of timing issues, but probably worth a conversation with our pharmacist.
We’ve been under our local pain management team but found it no so useful, physio restricted to six free sessions and then withdrawn just as proving useful. Counseling, long wait for sessions then only a few free sessions. We’ve paid for various therapies but it’s been a big strain on our finances.

Thanks for your reply. One of the reasons I feel so guilty is that I know some carers and their loved ones are in worse positions than us, like yourselves. Nevertheless, time management is a common problem.
I’ve responded to some of what you say in my replies to others who have been kind enough to give me some advice. Your advice to move out of the shared bedroom is something I’d like to consider, but we don’t have a second bedroom as such. Occasionally, I do resort to the settee in our living room but find it uncomfortable with my long frame hanging over the ends of the settee! Thinking about separate beds in the same room but again it’s down to finance.

Mawem,

It might be different in your area, but here they have the 6 session limit on physio too, but that doesn’t mean you can only have 6 sessions ever. You can be self refer/ be referred again. There is still a break before blocks but if she carries on doing the exercises set until the next block, she won’t deteriorate.

Melly1

I’ll look into that as soon as Covid restrictions are lifted. Our GP hasn’t been too supportive and I believe here that we have to be GP referred. We had to arrange some private sessions at £60 a time before this current lockdown, something we can’t afford long term. He gave us a lot of instructions for appropriate exercises at home but my wife seems not motivated enough to do them regularly.

Mawem,

Motivation can definitely be a problem, but physio only works if done regularly and consistently. It might help to have it as a routine part of her day e.g. before morning coffee or whatever. Once its a routine it’s easier to stick too. Perhaps you could do some exercises of your own at the same time?! Just a thought.

Melly1