Feeling sad about the present and the future

[Laura3691]

I feel lucky in lots of ways, but caring is hard and I sometimes feel like a lot has been taken from myself and my partner. My partner (they/them) has ME/CFS, FND, and a couple of mental health conditions. I was talking to them today about the idea of getting engaged, not straight away, but thinking about what we would want that to look like. We’ve been together for over 3 years and I’ve been their carer for around 2 of those years depending on how you look at it. I feel like I’ve made all the commitments of a married person - sticking by the person I love through sickness and health, and living together - but my partner and I are missing out on some of the best bits like being able to have adventures together, get engaged, go on holiday, or plan things for the future.

I’m 21 and sometimes I feel I’ve skipped ahead. I see things I’d like to do and think ‘that’s not wheelchair accessible’ or ‘that’s too high-energy’. I know I could do these things by myself, and I try to have my own life, but I want to share these experiences with my partner. Then I feel guilty for wanting things that aren’t in my partner’s best interests right now. While we were talking, my partner said (sensibly) that we won’t be able to get engaged until their health is a lot more stable. I understand, but it feels like we are stuck in limbo, putting off a long list of things we want to experience until things change - which could take months, years, or forever.

Can anyone relate at all?

[Chris_22081]

Hi Laura

A really difficult situation for you to be in, particularly at such a tender age (sorry I am an old fogey!). First I must take my hat off to you for being so supportive of your partner. They are truly blessed to have someone like you in their life as many would run a mile rather than Care as you seem to.

Graham and I have been very lucky in that since we got together 27 years ago we’ve been able to travel and enjoy ourselves. That means we have memories and can share them and laugh about some of the silly things we have done. Since he started with a whole series of ailments, we’ve had to curtail our wanderings initially due to not being able to get Travel Insurance and then since his stroke and prostate cancer, due to mobility and all the problems associated with continence etc! It’s also meant we have problems even going away to hotels in UK. After one weekend away (gifted to us by some friends) to a high class hotel and suffering the embarrassment of a wet bed on the final morning, we are both scared of a repeat. Add to that the need for accessibility (not in wheelchair, but cannot manage many stairs) and a hotel to be dog-friendly and we have very limited opportunities. He has mentioned Warner hotels but they will not accept dogs (Buster is an emotional support for both of us but not a Registered Assistance Dog - yet!!)

I’ve been away for two breaks with Buster, but it has meant I had to find someone to stay with G as he cannot manage alone. This lack of time away has meant extra stress and, for Graham, a feeling that he is a burden.

There is absolutely no reason why you and your partner cannot get engaged! A Partnership o Marriage is a great benefit in dealing with medical situations. When Graham was in hospital for five weeks recently, I was able to deal with everyone who asked “and WHO are you” with a withering look and ‘I am his HUSBAND!’ as if challenging them to make any further comment. I do have LPA for Graham but that I use as backup ammunition.

Going back to your original question - yes, I can relate to not being able to travel and experience things. So many Carers make sacrifices like those you mention and no-one sees that side of things. So often we’re told “Remember to take care of yourself” but it’s not as easy as that when there is someone depending on you. Family have walked away from us as we cannot join in everything they do - that hurts so much. Their houses are not accessible (ex S-i-L panics if he puts his hand on a wall as he struggles up the one step in through her front door and has to support himself in case he leaves dirty finger marks on her pristine paintwork), they book meals at restaurants which are not easy to access because they don’t ask for a table near the door and we end up at the very back of the building when it’s busy and it is REALLY difficult to negotiate a full restaurant with steps (yes, I know there should be accessible areas but if they forget to ask it just doesn’t work and if I keep reminding them it sounds like I am nagging and being awkward - so we just don’t go!) Even our village pub is getting difficult to access as there is a slope at the back, but it means a long walk through the back door to the nearest table over uneven flag-stone floors. We keep hearing reports of people in wheelchairs being stranded stations or stuck on trains because arrangements made have not been followed up on by staff. It’s frustrating and upsetting and just adds to the feeling of “why do we bother”.

I like to take Buster for walks at a local Arboretum and they have electric buggies available for those with mobility problems. The difficulty is that from the Blue Badge parking spaces it is nearly 100 yards to get to the place they are stored… Graham can just about walk that far with his walker, but then there is nowhere to leave that safely, Result - we don’t go together. In Spring I will challenge them again about the arrangements as I bet they simply haven’t realised the problem exists!

Do you get any help with caring for your partner? Will they accept help? I ask because Graham tries to maintain independence and doesn’t want strangers helping him and it’s hard to define what help is needed!

Hope I haven’t rambled too much, but wanted you to know you are not alone in your thoughts.

[Laura3691]

Hi Chris,

Thank you so much for such a thoughtful and kind response. I’m sorry you’ve had to weather some of the same struggles. I definitely relate to the hospital thing - every time, I’m asked if I am my partner’s ‘friend’ or it’s assumed I am and I have to correct people. My partner lists me as an emergency contact and carer when possible and I also got a Carers ID card which I always have on me.

The frustrations of inaccessibility are endless. My partner and I did get stranded on a train once, when they were able to travel. Nobody came with a ramp to get us off and I ended up having to literally throw the wheelchair off the train and physically help my partner off. They had a panic attack, I was exhausted, and the trip was ruined. We left early the next day.

Just like you say, I feel the reminder to ‘take care of yourself’ comes with many strings attached. I had to walk away from my biological family due to an abusive situation which leaves me further isolated. I’m also trying to get through a year of teacher training which ought to lead to a job. But, like everything, this is affected by my caring role. Since I’ve had to take around 5 days off for my partner and over a week for myself due to a bad virus I came down with, I’ve been told if I take any more days off in the next 6 months, I could lose my place on the course. I explained my circumstances but the university I’m training with don’t care. My partner is relatively well at the moment and I am hoping and praying it stays that way. Their health fluctuates so much, and there is no way to predict what the next 6 months will look like.

On a practical level, we do have help, because we pay for private carers to come now and again depending on what we can afford and how unwell my partner is. We are pursuing state social care but I’m sure you know the complications of that. What I feel I’m missing is emotional support. I have a few friends on my course but they all have intense workloads like I do, and my other friends are in different cities. I tried going to an in-person carer support group but everyone else there was much older. I wouldn’t have minded that at all, but they mostly left me out of the conversation and I felt there was a sense of ‘why are you here’. God forbid if I had brought up my partner’s pronouns!

Thank you again for taking the time to hear me and share your own experiences

[bowlingbun]

When my son was small, brain damaged at birth, I was told about a carers group, everyone else was ancient caring for someone with dementia!
I’m a young at heart 72 now, a bit disabled after a car accident but I’ve done loads of fun things, including riding a powerful motor bike in Australia wearing hot pants and a midriff top!