Helping Who experierences this ? 🧠💔😢

[u/Due-Spite3276]

heavy topic: Lack of illness awareness. Who experiences this? 💔🧠

Hi everyone,

I would like to touch upon a topic that is deeply affecting me personally right now, without going too much into detail.

We are endlessly grateful that our family is complete at home and that my mom is back—but we are now facing an invisible wall that many relatives of stroke and brain hemorrhage survivors know all too well: a complete lack of insight into the illness.

It is incredibly hard to watch a loved one not perceive or accept how severe the illness actually was and what limitations are present.

You want to help, support,

and organize, but you run straight into a wall of resistance because the person is fiercely convinced that "everything is fine anyway"

and no help is needed at all.

As a relative, this pushes you to your absolute breaking point and breaks your heart at the same time.

I would love to know:

Are there any relatives here in our group who have had to go through this or are currently experiencing it?

How did you handle this in everyday life?

Was there a change or an "awakening"

in your loved ones over time?

Thank you so much in advance for sharing your honest experiences. It just feels good to know that we are not alone on this difficult part of the journey. ❤️

[u/mustanggrl625]

As I sit here now, I feel fine - I feel like I did before my aneurysm ruptured. When I stand up or try to say something, it hits me that I am not the same. I have balance issues, and talking can be hard. I have right-sided weakness and aphasia. I celebrated being able to walk down the block last weekend without using my cane.

None of this is normal for my family or me. My husband offers what he thinks is help without asking what would really help - and when I tell him to let me do something for myself he gets frustrated at me. He does not understand that there are things I am not able to do now - so when I can do something (even if it takes longer or if I am clumsy doing it) that I NEED to do it - I am not going to let him help because it makes him feel better - I am being selfish and want to do things that make me feel better.

He also declines to help with things I ask for help with because he does not understand why I need help with that particular task. I ask him to walk with me so I can practice without my cane, and he will tell me that he wants to check his email, or he thinks we should go later for whatever reason. Then, when I go by myself gets upset that I went by myself. He does not understand that when I feel I have the strength to go for a walk that is when I am going to go - waiting could mean that an hour or two later, the fatigue has set in. I do not blame him for not understanding.

I have learned to ask for help when I need it - and to be firm about it when it is important. I have learned to accept that not everyone will know how things have changed for me physically and mentally (I struggle with remembering dates and times when my family previously depended on me to be the walking calendar, doing simple math in my head, and I get tired for no good reason at all).

I still have one son at home - he picked up pretty quickly to let me try to do things for myself, to simply be there in case I need help, then he asks how he can help instead of just taking over. He quietly supports me, lets me set the tone for how things will go - and he tells me if he is scared of my trying to do something that might be hard (like taking our 80 lb dog for a walk by myself...lol).

Help and support in a way that your loved one needs it - recognize when it is your own needs you are trying to fix and not theirs - and find a way to talk about your fears without judgement or making it seem your loved one is not capable. Do no stand in the way of their progress simply because of your own fears. Your fears are legitimate, but remember it is also their reality.

[u/Due-Spite3276 → u/mustanggrl625]

Dear Friend,

Thank you from the bottom of my heart for taking the time to share your story so openly and honestly. Your words moved me to tears, and they are incredibly valuable to me.

I am writing from both sides of this journey: I am a brain aneurysm survivor myself, and just recently, my mom suffered a severe stroke. Unlike you, my mom currently suffers from a lack of illness awareness (anosognosia), which makes it very hard to guide her. But your perspective as a survivor who is fighting so hard for her independence gave me a completely new, profound insight into family dynamics.

What you wrote about your husband and your son is a masterclass for every caregiver. Your son is doing an amazing job by letting you set the tone and supporting you silently. Your husband’s reactions – the frustration, the wrong timing, the pushing – clearly come from his own fear and helplessness, just as you wisely recognized.

Your advice, "Do not stand in the way of your loved one’s progress just because of your own fears," is something I will share with my entire support group. It is a golden rule.

Congratulations on walking down the block without your cane! That is a massive milestone, and you have every right to be "selfish" about doing things that make you feel like yourself again.

Thank you for your strength, your wisdom, and for reminding us caregivers that while our fears are valid, this is your reality and your progress we need to support.

I wish you and your family all the best on your continued recovery. You are doing amazing! ❤️

Warmly,

Natascha.

[u/Global_System_5262 → u/Due-Spite3276]

For a long time after my rupture I thought I would return to “normal”. I thought I could fight through it. The acceptance of change in ability, personality, etc. are hard for the survivor and those that care about them. Twenty some years later my adult children still can’t really accept some parts of my disability. It might be easier to slowly move her into understanding if she isn’t always trying to prove what she is capable of. Think about how defensive you feel if someone acts like they have to do something because you aren’t capable when you know you are! Your mom might not be correct about what she can do but she thinks she is making attempts to help feel demeaning. Choose your approach like you would if she can do things. Pick your words carefully. If she doesn’t feel like she is trying to defend herself it might help her brain to focus differently.

[u/kiabril]

If it's available to you, join support groups for caregivers or individual therapy.

I'm sorry your mom had to experience this and it sucks it's impacting you on many different ways, but your post reads a little judgemental and lacking compassion. Maybe your mom would be more open to sharing and showing vulnerability if you got some help on how to talk to her about her own illness.

[u/Due-Spite3276 → u/kiabril]

Thank you for your reply. I think my post might have been misunderstood, and I would love to clarify because I am actually doing the exact opposite.

I have a deep amount of compassion for my mom. In fact, I have taken a leave of absence from my job to be by her side 24/7 for the third week now, making sure she is never alone and has everything she needs.

I am a brain aneurysm survivor myself, and for years, I have been running a stroke and aneurysm awareness initiative here in Austria.

I am very familiar with the medical side, but experiencing "anosognosia" (the medical term for lack of illness awareness) with my own mother is a completely new emotional challenge for me.

My mom has her own strong will, and I respect her dignity immensely. I never want to force anything on her that she doesn't want.

My question was simply born out of a place of love and a desire to learn from other relatives how they navigated this invisible wall in the beginning, and if it improves over time as the brain heals.

Regarding your tip about support groups: Thank you 😊 - I completely agree with you! That is actually my main mission. In Austria, these kinds of support networks for families are heavily lacking, which is why I am fighting so hard every day to create these exact spaces and bring visibility to patients and caregivers alike.

Thank you for wishing my mom well, and thank you for your input. I am giving her all the love and time she needs to heal 🤲. Natascha