Chronically ill spouse

Welcome. All the virtual hugs. While you don't have family, is there support available through his medical team resources? I would suggest asking for that....both for his adjustment to his changing health and for you. Caregiver stress is real. Let YOUR medical providers know as well. And depending on insurance, mental health support resources may be available as you walk this path. I have relied on my therapist, a meditation practice (new to me) and my primary care, to take care of me so I can support and facilitate what husband needs.

My children moved out of the state, and the nearest family lives an hour away. So, I know how you feel. I end up doing the shopping and other routine things. I typically forget stuff, don't select the right things, forget to check expiration dates, and packaging has wrinkles in it (My wife wants everything pristine.) Oh yeah, I don't bag things correctly either and misplace receipts. I hear about all of those things when I get home. The best I can do is just acknowledge my mistakes and keep my mouth shut.

I second the suggestion of using any/all mental health support features available through your insurance. I resisted for years, but when I realized my stress, overwhelm, and anxiety were impacting my husband and his recovery, I made an appointment. The chance to talk to someone for an hour every two weeks about my biggest fears and frustrations with my husband's diagnosis, and her advice on how to stay in the moment and not spend so much time thinking about the future or the past, helped. Her suggestion that I needed to take my doctor's advice on the anti-anxiety medication was also a game changer.

So many of us in same situation. My husband of almost 50 years (he's 80 I'm 77) has a rare condition that in a matter of weeks has become unable to walk or transfer into wheel chair. Our kids are two hours away and really unable to physically help. Trying to sell house and move closer to kids but that's going to be a process. I know husband needs assisted living and I will go with him even though I don't require help. I just feel really lost as this has happened really fast. I have a wonderful.church family and faith so that's what I have to cling to. He has only been out of rehab for two weeks and I am so tired. Thanks to all for sharing your stories and how you are taking care of yourself. Sometimes it helps just to know the struggle iS real and I'm not a failure when I just want out.

Hello, @royce

As I read this, I see a lot of my own 35-year relationship and current circumstances and wonder if some thoughts that occur to me about our situation could be at all helpful to you. I wonder whether your wife’s need for things to be pristine is a change from the past and is related to her health condition, or if this is who she has been throughout your lives together. I also don’t know what her capacity is to hear how much more challenging it is for you to provide her with care and take on some tasks that she has lived her adult life managing when your needs for a chance to catch up (or develop your own efficient and comfortable way of doing these tasks), and to receive appreciation for your stepped-up contributions are not being met. She may be in no place to have such a loving conversation. If she cannot, you might (and therapists can be super helpful with gaining this kind of perspective) find ways to tell yourself that, if she were healthier or did not have the kind of lifestyle patterns that led her to need “pristine,” she would want to give you that acceptance of and appreciation for your current, stepped -up efforts that you (and we all) need. She, in a best version of herself, would want to give that to you. So, when she points out a way your contributions have fallen short of her current expectations, and maybe does so with words and tones that are painful for you, you might consider trying to ignore the message’s delivery (while not ignoring her…let her know you need to take a quick break if you need to and come back), and tell yourself, inside your head (since maybe she can’t right now or just yet), that she is doing the best she can right now to hang on to some semblance of control over an aspect of her life that feels like she should be able to manage (in the face of so much loss of control over her health and functioning that she cannot control), by trying to manage you. You are doing the best that you can at any given moment, and when you can do better, you will. That may help you feel better even if she cannot engage in a conversation around how the two of you treat each other in this time.

If she is capable of engaging with you around any aspect of your needs these days, you might (at a calmer moment for you) let her know what matters to you…that (for example, if this is true) you want her to have the support and care that she needs, and you are glad to be able to offer that to her to the extent that you are able, AND, you also need her to understand that you have a learning curve for what she has done for so long and developed ways of doing that work so well for her. AND, you may never be her and do things just has she has taught herself to do. If you need to, you might just say that it is sad for you when she is not happy with what you are trying to do, that you need (as well as a break to rest and retire your spirits now and again) to feel appreciated. You may ask her (if this makes sense in your situation), to consider which tasks she could tolerate allowing to be done in a less pristine way, which ones could be set aside for now given the limitations of support beyond you, or if she could tell you which tasks she needs you to do right away and which ones she can wait for you to get to (and how long it can wait). If she can process these kinds of conversations cognitively, a bit at a time, with some loving eye contact and hand-holding, it makes total sense to me that her best self would want to understand your needs from her in all of this and would want to feel like she can contribute to meeting your needs where she can.
She may also need to hear your appreciation of things she has done until now to such a high standard, as the two of you grieve that this is not currently (and may never again be) so.
There is so much loss with a decrease in health and functioning.

Sent with care for you, your wife and all of us managing the best we can under such challenging circumstances,

@gynosaur