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Caring for an unwell partner

Caring for an unwell partner

Hi all,

I've come to this forum for a range of reasons. Partly for my own mental health stuff, and partly because I could sure use some support in being there for my partner. He has had an organ transplant less than 2 years ago, and is still very much recovering from that. He will be on immune suppressants for the rest of his life, so all this happening concurrent with the pandemic is frightful. He has to take a massive pile of meds every day, he struggles with digestion, headaches, very low energy and depression. He's always had depression, but it's a wholly new animal since the surgery, and he's having to re-learn his body alongside this; he functions so differently now and it confounds him. His memory has become far worse than it was before. Whilst I am no longer his carer in the sense that he can shower and dress himself and all that stuff and can do a bit of housework, I do still do the lion share of the household work (and of course there is more of it than before, with two of us to clean up after and vigilance re covid triples that again) and have to do all the organising and remembering of stuff.

The challenge - I have ADHD (and depression, but the former is more the problem). Executive function is my enemy - my working/short term memory is abysmal, my organisation strategies have to be changed regularly because I just forget I have them if they aren't novel and interesting, I can't focus on the household stuff to save myself and struggle with it at the best of times. Just keeping myself fed is a monumental task, now my big-batch "solve the food problem for a week" meals disappear in a few days with another person eating as well - never mind the cleaning. I feel overwhelmed with all of it, especially as it crowds out self-care (partly because I'm busy, partly because being busy + ADHD brain means I literally forget to do it, even though it is important to me). Mind you, I wouldn't trade lives with anyone for quids, I love my partner and our birds dearly, but holy moley I could do with some good advice.

AFK.

38 replies

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In response to: Caring for an unwell partner

Re: Caring for an unwell partner

Haven't visited this space for some while. Haven't had it in me to bother. I'll keep it short, and none too sweet. My partner is dying. Nothing they've done has stopped the organ rejection. It's another transplant with no guarantee of finding a suitable donor in time, or it's the end. As we have grappled with this, our little bird fell ill, getting worse over the past months with also no treatment helping him. He is gone now. My family is growing very small and very hurt.

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Hi there @AFK

I'm one of the peer workers here on the forums. I'm so sorry to hear your sad news about your partner. I can feel your sadness and grief. And your poor little birdie. Life is so unfair sometimes, it really is. I just want you to know we are here for you and sitting with you in your pain.

I know it must be hard to think of yourself when your partner is so unwell but taking just 10 minutes a day for your own self-care could be really worthwhile.

Sending you and your partner warm hugs

Hanami

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Hi @AFK,

My name is FloatingFeather and I am another peer support worker at SANE. I just wanted to reach out and say that I am sorry to read that you and your family are going through such a difficult time at the moment. Fingers and toes crossed they will find your partner a suitable organ match very soon and it will be successful. Doctors and science can do such amazing things these days. I also believe in the power of positivity and hope so sending your partner a bucketload.

Sorry to read about your bird, losing a beloved pet can feel like losing a close family member. I have a cockatiel so I understand how much a little bird can play such a large role in your life.

Wishing you and your family all the best,

FloatingFeather

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Hi @hanami & @FloatingFeather ,

Thanks for your kind posts, both of you. Been struggling to find the energy to post again, there's a lot going on still. I haven't really had a lot of room to grieve for our sweet little bird around everything happening with my partner. The same goes for him. There are moments, then we are swept up in all the tests and things going on for him in hospital. He's on oxygen most of the time, now, it's pretty bad. They are assessing whether it is even viable to do another transplant at the moment, they said it may not even be physically possible. A lot of unknowns right now. Just taking one moment at a time. Trying to look after myself in the midst of it all. That's proving tricky, I am exhausted, but I'm doing what I can. Being hampered a bit by technical difficulties, like online grocery shopping not working when I need to not be wasting my precious time in a supermarket. I'm running out of a few essentials at home and it's very frustrating.

AFK.

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Hi @AFK

I'm so sorry to hear that about your partner. Gosh, it's all you can do, take one moment at a time. It must be breaking your heart.

Oh damn tech issues. Nothing worse that tech issues when you have so many bigger issues going on.

I'll be keeping you in my thoughts.

Hugs

Hanami

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Thank you @hanami , I appreciate you taking the time to check in on me, though my own visits here are less than frequent.

Yes, everything we are dealing with is heartbreaking. It's looking less and less like another transplant will be going ahead. His health continues to decline. We're looking at getting a wheelchair for him, getting around has become too difficult.

One good thing to come of all the bad, we have gotten our act together on getting married. Nothing quite like impending death to make you forget all the trappings and just do what's important, I guess. We wanted to spend what time we have as a married couple. That, at least, feels good.

AFK.

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Hello @AFK , how are you going today xx

In response to: Re: Caring for an unwell partner

Re: Caring for an unwell partner

Hey @Shaz51 ,

Thanks for checking in on me. To be honest, I'm tired and stressed. Don't get me wrong, I love my man and being married to him now, but I sure wish I had some more support with his care. His health just keeps getting more complicated and difficult to manage, and I rarely get a few hours to myself to recharge the batteries. We're at least trying to work in dates around all his appointments, like going for coffee or a drive after getting blood tests or whatever, to take the focus off the medical stuff and home responsibilities for a while - improving the quality of our time together helps take a bit of the pressure off. Just taking it one day at a time, really, and trying to do what we can about each problem as it comes up.

Kind thoughts,

AFK.

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