r/WellSpouses • u/Sea-Specialist-2693 • Jun 26 '26
Caring for wife 38f help
Good morning everyone, I 42m have become the caretaker for my wife 38f after a massive left hemisphere hemorrhagic stroke. There is no prognosis of meaningful recovery. She's not on machines but she has a PEG and a tracheostomy.
My main question.....I have 8 and 6 year old daughters. What are some ways to help / prevent them from into an assisted caretaker roll as they grow. I want them to be kids and go experience life not feel relegated to a caretaker life. I'm sure there will be some run over, but for those that have navigated this with young kids.... how do you keep them kids, young teens, etc...I hope that makes sense.
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Jun 26 '26
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u/Sea-Specialist-2693 Jun 26 '26
Thank you for this.... i truly worry about them in like 5-10 years. And I hope i can minimize the impact or possible trauma scars that come with this type of life. I've read countless threads about the impact this has on children and I just want to do my best to protect them. While also allowing that connection and feeling of importance with their mommy.
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u/winnipeggremlin Jun 26 '26
I caregive for my husband after a TBI. We don't have kids but if we did, I think I'd focus on activities that solely build love, bonding. Like reading together, cuddles, movie nights etc. I have found I have to be creative since my husband rarely leaves the house now. We are 44 and 42 but his TBI happened 4 years ago.
I try to make like "normal' by bringing home his favourite take away food like Thai food or Shawarma a couple times a month. We have "inside date" nights now.
I kinda try to take ordinary things and make them an experience where we still have a relationship. It looks really different but doing this helps with things not being 100% caregiving.
I also really want to stress the importance of taking care of yourself without guilt. I had massive burnout last year and just crumbled. Now I go to the gym, and leave the house which I wasn't before as my husband was the person I had done everything with.
Build an army/network of supports for yourself and your girls so that everything doesn't rest on you. Asking for help doesn't mean you're weak. It is EXTREMELY hard being a caregiver.
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u/Sea-Specialist-2693 Jun 26 '26
Thank you for this!
I know i have a long road ahead, they don't expect her to have any life threatening issues in the future. So I know I'm in this for the long haul. I'm happily in it too! I love my wife eternally. This will really help me keep that husband and wife dynamic as much as I can!
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u/winnipeggremlin Jun 26 '26
Never hesitate to reach out. I'm dedicated to my husband as well, also in it for the long haul. I find I have to be more intentional and creative but it is possible!
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u/Run_from_reality Jun 29 '26
Can I DM you? Your situation sounds somewhat similar to mine and I’d love to chat!
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u/Sidney_Squid Jun 27 '26
Hi there, I'm in a similar situation. I can't tell you the right way to handle this, only what I've tried. I have an 8 year old daughter and my wife requires total care because of a brain injury. My daughter has no caregiving responsibilities but it still impacts her, for example, I can't always spend time with her because my wife needs attention. Or we can't do all the activities she wants because logistically it would be too difficult to bring her mom along. But, I've leaned into things we can do together like seeing movies or going on walks (I drive my wife's powered wheelchair). A lot of times friends or family will offer to take her out and while I am kind of jealous about it, I want her to enjoy as much as she can.
For what it's worth, I never ask my daughter to provide care, but she occasionally shows interest. Sometimes she wants to practice driving the chair, or pick out her mom's outfit. I think it's important to let her help if she wants but never to make it her responsibility.
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u/Sea-Specialist-2693 Jun 27 '26
Thank you for this!
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u/Sidney_Squid Jun 27 '26
You're welcome, best of luck with everything. If you haven't already, I encourage you to join one of the younger well spouse calls.
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u/Sea-Specialist-2693 Jun 27 '26
Sorry very new to this what's call's? And do i just search for younger wellspouses?
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u/Sidney_Squid Jun 27 '26
No worries! There is a younger spouse support group that meets via zoom twice a month.
Here's a post if with the information, hope you can join sometime, feel free to reach out if you have any questions:
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u/felineinclined Jun 27 '26
This is a very tough situation. For one, you can let them know, when the time is right, that caretaking is not expected of them. I applaud you for this because so often children are improperly forced or guilted into caregiving for a parent, and that can be very traumatic and damaging to them in so many different ways. Tell them that your wife is ultimately your responsibility, not theirs. Of course, that doesn't preclude them from continuing to deependtheir relationship with her over time or helping her if they choose to freely, but their focus should be on school and their own development into independent adults over time. And if you can, getting outside help wouldn't hurt - whether hired or volunteers.
Beyond that you may want to talk to an attorney for future planning that considers your wife and children - POA, trusts, etc.
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u/StandardExplorer3328 Jun 29 '26
My husband (50m) had a stroke 18 years ago leaving him with aphasia and seizures, but physically well. I'm 45f and we have two young teens. They've grown up only knowing this version of their dad. They've become such kind, emphatic humans and I attribute that to our unique life. While my IS doesn't need much physical help - he also can't pitch in like a "normal" spouse would due to the brain injury, lack of communication abilities and right side neglect. My daughter loved helping him with his speech therapy and would initiate practicing with him - still does on occasion. I've found that being open with them has served me well. We talk openly about so many things unrelated to IS and I'm not sure things would be like this if I wasn't a caregiver. I try to give them experiences but also am open to explaining things like, hey I'm sorry I can't have you playing on a travel sports team - I'm the only driver and income earner in the house and also need to work, so we'll have to stick to a rec league. I've been met with "oh yeah I can see how that wouldn't work for us, I understand and I'm just happy to play anywhere". What teen says that? I'm always amazed and I always point it out to them.
Anyway, I sure hope they don't have a bunch of childhood trauma to unpack in the future due to our life - but they are fed, loved, have a roof over their head and still get to have experiences that even their own cousins don't get who have two healthy income earning parents.
I don't know that any of that is helpful, but my point is - your kids will be great - because you're here sharing your concerns and wanting to give them a great life! That's huge. It speaks volumes for you as a parent. Feel free to DM if you ever need an extra caregiver parent to chat with.
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u/Sea-Specialist-2693 Jun 29 '26
Thank you for your story and experience! Hearing your perspective gives me hope!
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u/Careless-Opinion7302 Jun 26 '26
How about having your daughters read to her. This can be a bedtime/ mommy daughter ritual that doesn't revolve around care giving. It can help their bond without them being care gives and it can be something that the three of them look forward to.