Carer fatigue

[Esplin-C]

I am a 67 year old single woman supporting my 40 year old son who has a degenerative neurological condition. He has an intellectual disability and struggles to cope with his declining speech and mobility. I have always struggled with my feelings of self worth and depression and have fought this most of my life. I am from a family and an era that sees depression and anxiety as a choice and a weakness. I see a counsellor and she is helpful. Currently I am struggling and I am feeling very inadequate and very much on my own. I am currently moving my son on to supported independent living and I am struggling with my feelings of worth as a parent as I know this transition is going to be very difficult for him. I am also facing a transition for myself from being busy caring for and supporting my son to living alone.  My family are supportive but not at all present. 

I would so appreciate some honest comments and feedback from the forum to help me put this transition and my feelings of worth into perspective. 

[therising]

Hi Esplin-C

I imagine you to be an incredible mum who's evolved so much over time through the many stressful and sometimes heartbreaking challenges you've faced and still face in raising your son. I've found that while hindsight has offered me the ability to see where I've gone wrong with my 18yo son and 21yo old daughter or where I could have done things differently, unless some wisdom develops with that hindsight, the inner dialogue can be brutal. While I try to think of a label I can give to that part of me that criticises every questionable part of my parenting as a mum, Iet's simply call it what some would refer to as 'one of those inner demons'. The dialogue can definitely feel hellish at times, 'You're hopeless. What kind of parent are you? You've let your child down and made things so much harder for them on top of that' and on and on it goes. Our inner sage, on the other hand, can sound more so like 'Don't be too hard on yourself in this 'learn as you go experience', this experience known as parenting. As you both grow individually and together, some lessons can only be learned in hindsight and that's not your fault'. Much prefer the inner sage. It's a facet of us that is filled with loving kindness, while also being good for our self esteem.

Family...hmm...yes. While I've come across a number of people over the years who've been labeled as 'the black sheep of the family', most of the time these 'black sheep' have turned out to be the 'feeler' of the family. Just about every family has one, the one person who has the ability to feel the most. For example, while you could be facing someone who's degrading to a depressing degree, you may have the ability to feel that degradation when no one else can. Self doubt becomes a thing when that feeling's overridden with 'You're too sensitive, you need to toughen up'. Insensitive people tend to say stuff like that 😁. Perhaps they just haven't come to their senses yet, which is why the can't sense the depressing level of degradation. So, you can have a super sensitive person (who has a heightened ability to feel) in a situation where their family is telling them they have a choice to feel how they want. Wouldn't it make far more sense for the family to find a mentor for that 'black sheep' who can show them how to manage their ability? Kind of like 'This is how you can get a better feel for a person or situation ('reading' people or situations more accurately)... This is how you can turn the volume up or down when it comes to the feelings you're experiencing... This is how you can completely switch your feelings off, to best serve you (emotional detachment)... These are the strategies which can help you vent stressful emotion...' etc. When people say 'Oh, they've always been super sensitive, even as a little kid', technically that means that person has never lost their ability.

How to develop your senses when it comes to the way forward for you and your son sounds like the way to go. Developing a greater sense of the level of care a place offers and getting a feel for the kind of respect in that place toward your son would be just a couple of the many important factors. The type of opportunities that place offers would be another factor. Finding someone there who's a really good guide when it comes to guiding the 2 of you through this intense transition is a major factor. The hardest times in life can be made easier with the best guides offering us the best directions. Having worked in the care industry for some decades, I can tell you the level of care and consideration determines a person's overall experience. ❤️

[Esplin-C]

Dear TheRising

I have read through your reply a few times now. There is a lot of helpful content for me to consider. Thank you so much for taking the time to share your wisdom. I will be using your comments as a resource to reflect upon while navigating this pending change in our lives which I know is ultimately a positive and necessary move for us both.

[therising]

Hi Esplin-C

Just wanted to add how hard it can be to change our belief systems when there's a serious need to change them. For example, if the belief system we've maybe been taught and lived with the whole of our lives is 'If you love a person, you won't put them into a place for others to look after them. You'll look after them yourself', sometimes that belief has just gotta go. With my dad's failing health and developing dementia, my belief had to change to 'I will provide my dad with the best possible all 'round care, involving a standard of care and opportunities I just can't give him on my own'. It became about finding and giving my dad the best care, where his needs would be met. I visit him regularly in the aged care home in which he lives based on 1) wanting to lead him to experience a sense of joy from my visits which also helps with managing his mental health at one of the most challenging times of his life and 2) showing up to observe and get a feel for whether he's getting the best care (checking in on the standard of the place and the nature of the staff). Btw, if I felt or sensed significant neglect, he'd be out of there tomorrow.

It can be such an incredibly hard thing to do, change ingrained belief systems that can come with a lot of mixed and challenging emotions. From a sense of guilt to self chastisement, disappointment, stress, maybe some grief, a false sense of disloyalty and a whole lot more, we can definitely sense a range of mixed emotions within our self in the process of opening and changing our mind. Whether the situation involves our parent or our child, at the end of the day I think it's about providing them with nothing but the best, as we consider and take care of our self in the process.

[Aussie.Girl]

I'm sorry that I don't have any advice for you, but I just wanted to say I'm sorry you are feeling this way and please don't feel guilty about transitioning your son into supported independent living.

You are probably the person who knows him better than anyone and if you think that this is whats best for him, and for you then you are making the right decision. 

I hope everything goes smoothly for you and your son.