fh will be in a wheelchair soon

I am so sorry this must be heartbreaking to see the man you love in pain.

View Quoted Comment It doesn’t feel fair. Even though I know life isn’t fair and people suffer every day, when you picture your spouse at the altar they’re healthy. I know this was never in the cards for us but I feel so bad anyway.

Giant hugs to you. I KNOW exactly how you feel and how painful it is to not be able to help your partner. My FH has a genetic blood disorder that causes severe organ damage, osteoarthritis and slew of other issues. He is chronically in pain and it is so awful to see. He’s had to have both hips replaced and his knees will need replacement at some point. After 12 years of watching him deteriorate, it is still terrible to watch.

He is so lucky to have you.
it is not fair. Neither of you deserve it. Remind yourself of your vows and know that even on days when he’s in terrible pain and is grouchy, he loves you and is thankful for you. Just do the very best you can. Be sure to care for yourself as well. I’m so sorry.

View Quoted Comment Thank you so much, it’s nice to hear from another person’s perspective who has a similar situation. FH is very good about not taking his pain out on others but I know he’ll have his bad days. I’ll try to remember it’s no one’s fault.

View Quoted Comment It’s always helped me to know that other people deal with it. It doesn’t change anything, but it helps.

View Quoted Comment How do you manage your own health and happiness every day? It’s been easy right now but it feels like we’re really going to be put to the test. I know caretaker burnout is a real and shockingly common thing, I don’t want to ever let myself feel that way so I want to learn good habits now while everything is still ok. I thought about working at a nursing home for a while but I don’t think it would feel the same. I don’t want to caretake for other people, only him.

View Quoted Comment I just make it a point to do certain things everyday. I workout first thing. I prep healthy meals and pack one for lunch everyday. I make sure my hair and makeup is done everyday. These may seem like small things, but they make a huge difference. Make sure you take time to relax and decompress. Go out to dinner with friends. Sit on the couch with a cup of coffee and a magazine (this is heaven to me!). Take time with FH to talk and reconnect. This is so important. It’s really easy to become resentful. Take time to remind yourself of the wonderful things you love about him. Some days it is easier to thing about what is wrong. Try to remind yourself of why you’re there.
A lot of little things add up to big things.

View Quoted Comment You’ve been more helpful than you’ll ever know. From the bottom of my heart, thank you. I feel very lost right now.

View Quoted Comment Awe. You’re very welcome. I finish that in time, you will learn to navigate this. Just be patient with yourself. Sending a hug!

Not sure where you live but it sounds like he should qualify for state paid caregivers to come for a certain amount of hours. I would definitely look into it if you haven't already as it sounds like having this would be a huge relief for you mentally for your worries over your ability to be a caretaker with your limited standing abilities.
As for the emotional toll- I'm very sorry you're going through this. You're right, it isn't fair. Perhaps a caretaker support group as well as a support group for his specific disability would be helpful? There are great forums for them online usually.
Take time to let yourself feel how you feel! Enjoy a bath, light candles, breathe deep. Sending best wishes!

I’m sorry you’re going through this. I have degenerative arthritis throughout my spine and major joints. My H and I celebrated our one-year anniversary on Aug. 4. And I now have to use a cane, and we know a wheelchair isn’t that far off. I had been doing so well but, bam!, the flare up came in suddenly and is taking away my mobility.

I feel terrible for this to happen to us. I try so hard to over do so I won’t be a burden. My H has to do the bulk of the work around here.

My my only advice to you - and it really works - is to just take one day at a time. And remember that he probably feels terrible like I do. One day at a time. It keeps the mountains of anxiety at bay. And the worst may never come so try to focus on The Now and The Positives. It’s going to turn out better than you ever could have imagined.

View Quoted Comment I haven’t looked into it yet since until recently he could still walk, it’s a sobering thought for sure. 😞 Thank you for reminding me of that resource. Right now I’m looking into handicap accessible homes for us. Where we live right now only has stairs.
I’ll look into a community, it’s happening so fast. I thought I had a lot more time.

View Quoted Comment How do you cope with your own feelings of sadness? I know FH beats himself up, he’s normally a cheery person but if he finds himself falling short he’ll call himself “useless”, it hurts to hear it. Sometimes I just stand there in shock because I don’t know how to react to it. I’m supportive of course but in the moment it’s almost traumatizing in a way to witness your partner beat themselves up so badly. I think that’s what’s affecting us right now, the other stuff will come later.
He’s honestly had it rough, even my grandmother doesn’t like him because of his disability. He won’t be “a good provider” or whatever. I can’t fight everyone that treats him this way, believe me I have in the past. I’ll always protect him but I’m tired.

Do you have any advice that I can give him?

View Quoted Comment Again, I'm so sorry. I can't imagine what you're feeling but I do understand what you are saying! Having resources and communities will hopefully help you feel some relief and support.

I think maybe some therapy/counseling for you both as individuals may be helpful if you can afford it, not because anything is wrong but these are big changes. I suggest some for him especially because you said he calls himself useless sometimes. Nothing wrong with bad days but his life is changing dramatically and very suddenly.. That's a lot on a person. You are experiencing it from a different perspective, as well.

As the dust settles, definitely look for a mobility friendly home or (if cheaper) modifying your current home, though I think electric ramps are very expensive. I know it's adding another big stress and finance for you guys right now but will be necessary eventually.

Again, I'm so sorry, hun. I hope any of this was helpful!

View Quoted Comment Let me ask my husband, because I do the same thing. I do go to therapy to help me with that. I know it really hurts my husband when I beat up on myself too. Sometimes people are so close they’re enmeshed. My daughter and I were like that so every time she had an outburst I took it personally and got sad or defensive. I now understand it’s a ramification of something she’s dealing with so it doesn’t affect me anymore. I just let her have her thing and then we move on.

Is there an association for his particular condition, or maybe a private Facebook group? That could help a bit.

My my husband said he lets me calm down first and then he lets me know how much he loves me whether I’m disabled or not. He tries to reassure me and helps get back on track. He has learned to give me my space first because if he interjects then I might just lash out at him.

The thing is, if your FH’s condition just took a turn for the worst he may be still in the process of adapting to the new normal. The best advice I ever got was to not focus on the things I can’t do anymore but on the things I can. It’s a great shift in mindset because it lifts that feeling of failing.

View Quoted Comment I think you’re right, we’re at the point we’ll need counseling. It’s too many changes all at once. It’s not that we were blindsided but AS gets worse with age, he’s only 31 and it looks like his stage is closer to someone in their 60s so that’s a really tough pill to swallow.
I know our retirement plan has to include paying off our home early because we’re going to need to pay for nursing care at one point. We’re currently looking at ground level condos so we don’t have to worry about yard maintenance or anything. The whole thing has us a little stressed.

View Quoted Comment The logical part of my brain knows it’s not my fault for the outbursts and he’s just frustrated but I do have anxiety so of course this makes it much worse. Therapy will be good for both of us. We do make it a point not to lash out at each other no matter what mood or pain we’re in but there’s so much more we need to work on. It physically pains me to see him hurting or down on himself.

There used to be a forum I used to go to for support but it shut down years ago. I’m sure there’s other ones out there.

Your husband sounds like a wise man, I like his method of approach a lot more than mine.

You’re completely right, he went from only needing his cane on bad days to needing it every day, to now the cane doesn’t even help. This all happened in the past 6 months. It was a rapid change. I think he’s grieving in a way. He used to love sprinting and DDR(dance game), he can’t do those things anymore but he hasn’t found something to replace it.
He’s stuck focused on what he can’t do anymore or he won’t be able to do anymore. It doesn’t help that his ex had her friends tell him he’s a “cripple”, and no one will ever love him. I think in the back of his mind he feels undeserving. It breaks my heart. It’s hard to feel good about yourself when people treat you like that...

I know I won’t be a perfect wife, I’ve got my own problems. I just hope I can help him find his new normal and be happy. Everyone has their bad days but I don’t want him to sink into a permanent depression as he loses his mobility.

View Quoted Comment That is a hard thing to accept- for both of you. I really hope you're feeling a little relieved from your support here and elsewhere 💗
I really hope some services are available to lessen the financial burden! Fingers crossed, sending well wishes!!

View Quoted Comment Thank you ❤️ It’s more of a shock than anything. I know we’ll be ok, there’s just a lot all at once to take in.

View Quoted Comment You're very welcome! I am sure you guys will be! ❤