Published on 12, July, 2020
Hi, I’m new here, and hoping for insight and advice. My daughter, 39, hasn’t been diagnosed with autism, but we strongly suspect that she has it. She has had very strict rules governing all aspects of her life, in particular food, but really lots of things. She also has obsessions that she will talk about, in great detail to anyone who takes the time to listen. She has always struggled to form lasting friendships and relationships. Despite all of this she has had a good life. She has worked in retail for 20 years, mainly because the thought of looking for something else has filled her with dread. She has managed a small China and glassware store for the past ten years. Last September she was diagnosed with stage 3 cervical cancer. Two weeks after that the company announced that they were closing her shop. This would all have been a lot for most people, but for her it has been a nightmare. We live close by, so have been there for every step, but the treatment has left her a wreck. The personal nature of the cancer has meant that her dignity has been diminished, and on top of that she was admitted to hospital for nearly a month due to excessive pain. We knew that this would be hard for her, but we didn’t realise how hard. She barely ate. The food was not prepared in the right way, it wasn’t what she was used to, it arrived at the wrong time. The staff were concerned about it, but didn’t know what to do with her. Anyway, we finally got her out, and she was desperate to go back to her own home. We know her well enough not to argue, but were concerned that she wouldn’t cope, so we decided that we’d go round a couple of times a day. She didn’t last 24 hours before she wanted to come to ours. Hooray, we thought. We can get her strength back, and let her go when she’s ready. That was two weeks ago. The first week was fine. She ate rice cakes and melon mostly, and although she was understandably emotional, she felt like she was getting stronger. She has now rediscovered her food preferences, and we’re at our wits end. We don’t know how to make it easier for her, or frankly, for us. She hasn’t eaten now since Christmas day. We nearly got her to eat this morning, she wanted a bacon roll, so my husband went out to buy bacon and rolls, and then I gave her the wrong ketchup. I’m sorry I’ve rambled on so much. I think what I’m hoping for is other people’s coping strategies and advice. We’ve tried asking her what she wants, suggesting that she sits in the kitchen with us and supervises the cooking (we have food she likes, but we don’t cook it the same way as she does), we’ve suggested that she comes shopping with us, or that we go and see what’s in her freezer, nothing seems to appeal. She can see for herself that her behaviour is different to most people. She said to me yesterday that she had a headache, felt sick, and was very hungry, but that she couldn’t think of anything she wanted, so nothing was better than something. She described herself as insane. I told her emphatically that she was not. I’m concerned. Normally I wouldn’t be. I would think that once she was home she would sort herself out, but she’s trapped at ours, recovering from chemo, radiation, and brachytherapy, and she’s barely eating. I know she’ll refuse any medication or intervention by a professional. I just want my beautiful, perfect, lovely girl to be happy and well. Help.
I'm very pleased to hear that things are improving and that my scribbles were appreciated.
I wish you all my very best wishes for a return to "normal/not normal at all" as soon as possible.
Forgive me, I'm autistic. Number.
Oh, I agree. I’m not in a hurry to get her diagnosed. We’ve mentioned it before, and she has said that some of her friends have suggested the same. We’ll let her decide if and when she goes down that path.
Hello out-of-step, and thank you too for your reply. She did say to me very early on in the process that she felt like she was losing control. She was particularly stressed when medical staff told her “oh, we’ve seen it all before”. She said to me, they might’ve, but I haven’t done this before. I did have a chance to talk to one of the radiographers, and she was very understanding, and made sure that her experiences within that sphere were as dignified as possible. I will have a look at burnout.
Hello Number, and thank you for your reply. It really sounded familiar to me; I think my daughter is the same. We’re getting there slowly, and she is responding to our new ’hands off’ approach with more positivity. I think the whole cancer thing had made me lose sight of her in a way, and your reply made me realise that she’s always like this when she’s unwell, since she was a child. It’s just been blown up by a factor of 100! She’s eating more now, and asking for specific foods, and this is making her stronger, and less prone to meltdown.
I would say that your daughter has enough to deal with and i wouldn't push the whole autism thing or getting a diagnosis etcI would be patient and just get her back to some normalcy..I would actually see if you can get professional help for you to deal with her and explain to whomever you think she may be autistic etc
Something that can happen is regression so you need to try to make sure she keeps up basic stuff like washing eating all those things and you'll just have to be patient.id be very careful re getting a diagnosis as actually I sometimes think my son getting a diagnosis was the worst thing it did him no favours he got very negative and basically gave up trying to do anything in life ie job relationships etc I sometimes wonder if he hadn't know would I or he have pushed himself nd now have some kind of a life??? Just take it slow.
out_of_step said:Explore autistic burnout. Small things can become more demanding....
Excellent advice.
It sounds absolutely exhausting. Being ill in this way - there is lack of control over what's going on with your own body. That's hard enough for anyone but I think especially hard for how autistic people process the world. Control = certainty. Being ill + other life events is incredibly difficult. Loss of independence can be huge. Small things can make a difference. You are doing your utmost best. 2 weeks doesn't sound like a long time for things to improve.
NAS90903 said: She described herself as insane
I felt like this in burnout. I thought i was losing my mind but didnt know why. Explore autistic burnout. Small things can become more demanding....there comes loss of executive function which can include decision making (for simple things like what to eat). Autistic people experience trauma in different ways and for different reasons than neurotypical people.
Time, space and like Number said, being allowed to "be".
Hello 90903, I am Number.
Your daughter has been through the wringer......she is VERY lucky to have you.
It sounds like you are very understanding, careful and accommodating......and desperate to do the right thing.
I know nothing of cervical cancer nor its treatment and consequences, beyond nominal vicarious reports and casual interactions. Accordingly, I had left this thread for others....but I note that there are no "biters" as yet....so I will throw my hat into the ring with just a smidgen of advice based on my own feelings and experiences when in circumstances akin to those of your daughter.
What I write is in no way intended as criticism of what you do, or try to do, for your daughter.
Personally, I HATE to be a burden of any description, even when I know I need help. I HATE to be fussed over at the best of times, so when I am feeling unwell or recovering, the very worst thing that someone can do for me is to try and help. I don't want any special treatment (even if I need it - and know that.) I don't want to feel that I am impacting the lives of others (even if I know that this is unavoidable.)
I often say things out loud - "gosh, I'm really hungry" or "flipping heck, I'm really hot".......but I do so, not to inform others, but to keep myself consciously informed about how I am feeling. Believe it or not, I need to remind myself of some basic things from time to time.....especially when I am unwell.....but I do not wish others to act on these proclamations.
As you can imagine, I am a VERY frustrating patient......probably the worst possible type !!
What I want (even if I know it is not possible) is to be a good and pleasant guest - no trouble to anyone - and if I cannot possibly achieve this - it frustrates me GREATLY. This can exacerbate my "unwellness."
"Fuss" is the worst thing for me.....followed by "help."
Thankfully, I do have some people that I can rely upon when I am unwell - not many - but enough. If you were a fly-on-the-wall watching me being "cared for"....you would probably think that they are the least caring people ....but actually, they are invaluable. All they do, is "let me be." Sometimes, I will moan and complain......and they will "ignore me" - but not ever ignore me. I will always have water close to hand.....but NEVER be told to drink. I will always have some food stuffs close to me.....but NEVER be told to eat. I will always have company available.....but NEVER have it forced upon me.
When I am unwell, or recovering from being unwell, what I need is simply......time and space. I need to allow my brain to "race".....I need to mutter to myself without being questioned about whatever I am muttering about. I need time to think....stare into space....to be miserable....to be "difficult" to read.......to be a "difficult" patient.....it is who I am when I am in "sub-optimal" health.
So.....if your daughter were to be like me (and I have no idea if she is)....I would recommend "showing" her as little impact on YOUR sense of well being as possible. Tell her how lovely it is to have her with you in your house. Tell her about YOUR day. Ask her for her advice about things that are troubling you (apart from her recovery.) Make sure you have things around that you know she might like.....but don't make a fuss about them. Keep everything on the "down low".......and try not to emote your concern for her.
Anyhow - I think that is about all the use I can be to you on this matter - for what its worth. Rest assured that you do sound absolutely lovely, caring and wonderful folk.....and like I say....I do think that your daughter is VERY lucky to have you and undoubtedly knows this.
I wish you all the very best of luck with this - and hope that your daughter makes a swift and complete recovery ASAP.
Warmest best regards
Number.