Introducing mmMekitty

[mmMekitty]

I am mmMekitty, named for my cat, (my avatar), who lived 7 years. It has been five or so years since, but I still miss her. Mekitty an I had a simpler relationship than any I have had with people.

The photo is the one I to retrieved after my hard drive crashed. She had wandered off, was away for six days, when she turned up again in the middle of the night. I cried with relief. This was the photo I used for her Lost Cat poster I put up around the neighbourhood at the time.

As for me, I cannot see the detail of the photo nearly as well as I did then, and then my sight was poor. I am now using text-to-speech software, zooming on my pc, voice over. Since I find this stuff difficult, I get really frustrated.

I used to keep all my emotions in check, so much so, I thought and said I did not have any feelings or reactions to anything. That changed and I could not deny the existence of my emotions. It was a terrifying time. What was happening to me? I was falling apart and all this unidentifiable stuff was pouring out.

I have had to learn so much since I began seeing the Psychiatrist I saw back then (1993 - 95). From learning I had to put words to the experiences, name, own, accept them. Still uncomfortable. I beat up on myself too much, I know.

I used to do things I can no longer do to my own satisfaction. I still sing, but not like I used to. I cannot paint like I did. I cannot use pen and paper to write, so have managed to adapt to keyboard. That is something. I have been working on being more sociable, less isolated, but last year, when COVID-19 retrictions required face masks be worn, I found I could not - which is what brings me here.

I have had to curtail so much of what I had been doing. I am feeling the isolation now. How ironic! I resisted even thinking I needed anybody, then I try to have some friends, join a writers' group, get help with things like housework and shopping, going to places for fun and entertainment, only to have to withdraw again because I cannot wear a mask. It bites, like a scorpion.

I will make a thread, now I found the place to click to create one! I think my problem was with how I have my desktop appearance. It looks like any ordinary link, hiding below another, for creating a feed link. Now I know.

I suppose I will get around to talking more about myself. I will need to be careful about how involved I become, so please, don't expect me to pop up everywhere. I would burn out if I did that.

(Purring) mmMekitty

[Eagle Ray]

Thanks MK, yes, a letter from the liver specialist might be a good idea. I do have a formal diagnosis so the GP doesn’t need to solve it, just understand it in the context of my overall health. I thought the GP might at least look it up on the computer but they just seem to blank out and not engage. If I was a GP I would at least want to clarify and understand what my patient had. The naturopath did that thoroughly and spent an hour and a half with me on my first visit, and an hour each visit after that. He answers all my questions and we research together on the computer and we’ve solved so much that way, effectively turning around the trajectory of the disease. He actually works in with my current liver specialist. So I know these positive kinds of interactions can happen.

Meds can certainly affect cognitive function so that’s good to investigate. I was told by a doctor that a med I’ve been on since 2005 is now associated with cognitive decline. That was before I had major cognitive difficulties. I reduced that med that I take for pain to a lower dosage. I don’t think the change in dosage affected cognition but I would say I’m a bit less sedated in the day now. The later cognitive issues in my case responded well to healing my gut microbiome.

It’s so tricky figuring out what’s going on isn’t it. But it’s good to be curious. That’s how these mysteries get solved. The med you started a year ago could be associated if it coincides with when you noticed cognitive changes. I’ve often researched peer reviewed journals, the ones where the full text is available online. When I’m with the naturopath he does this as well and we work things out together. Often the published clinical trials have not reached clinical practice yet, so the research is there but GPs and specialists have not yet incorporated it into patient treatment. It has to go through enough trials to be considered evidence-based.

I would say keep following the paper trails and your intuition. Hopefully you can then discuss any findings and possibilities with the specialist you see. You might feel more empowered doing your own research. I’ve found that’s really helped me including finding practitioners who specialise in what I’ve been learning. Hope you find some answers, or at least helpful clues, soon.

[mmMekitty]

Hello all,

I’m thinking, I like being willing to make changes with regards to who my support workers are, how I want them to work with me, although it is difficult. I like being able to recognise the need for these changes, & that I am not willing to maintain the status quo because I like the support workers.

They are not respectful  of professional boundaries. I like that I realise, permitting the situation to continue is not in my best interest. 

The relationship between the two makes it more complicated. The younger (W2) will, in the not too distant future, be daughter-in-law to the older, (W1).

W1 has more problems with memory than I do, so I'm unsure if she can adjust & maintain professional boundaries & not talk so much about personal & family issues.

I've been feeling awkward about it. I had realised problems of this sort could be increased, when W1 introduced W2 to me, openly telling me then that W2 is in a relationship with her son.

I've been trying to not get involved with their family matters, but I realise the line was crossed, & I'm feeling too emotionally involved with these people, & their rellies.

I've felt this more acutely when W1 told me of her recent diagnosis, which has required surgery & an extended period of time off work. I've been relying on W2 more, & hearing from her too, how worried & stressed W1’s son is. Hearing about their relationship, (they are now engaged),

When W2 took me to see W1, after she'd returned from hospital, is this a work day or not for W2, who only picked me up & drove me home, spending the time we were there, in conversation about family related plans.

I need more workers, in case W2 is ill over the next few months. So, I'm trialling a few from a company. I've yet to decide if the workers will be a good fit for me.

Meanwhile, I feel some pressure from W1, to keep them both as workers, needing money, making me feel they are depending on me to keep them afloat.

Ultimately, I need to do what is in my best interest.

I'm not a counsellor, nor peer worker, not a close & intimate friend - I'm their client; they are support workers. 

Friendship is a completely different relationship.

I need this clearly understood or, for my mental health, I have to find other workers.

I feel sorry & sad about it.

I’d rather be friends, but don’t know if I can do that with them either, now.

mmMekitty

[Croix]

Dear MK~

Carers can be a hassle, and I can well understand your not wanting to be drawn into their lives and especially not feel you are being pressured to keep them on due to thier circumstances

I guess the chance to try out several from the agency to see who is going to fit is a good opportunity.

I know you regard friends as a different sort of relationship, though I wonder if it is quite that cut and dried.

The reason I ask is I've seen the full range, from terrible don't-care time-fillers though to those who enjoy a game of cards with the client after shift or go shopping unasked. A very good friend who I visited weekly for 30+ years had to have three 2-carer shifts per day and with that sort of demand there was very little control who filled the positions.

I would be interested to know what you would regard as being the behavior that would best suit you.

Croix

[mmMekitty]

Hi Croix

Thank you for responding.

A support worker, a counsellor, psychiatrist, or any professional we may have working for us can have a friendly demeaner without having a friendship with their client/patient/customer.

Sure, I want support workers who are punctual, respectful, competent & consistent. I would like them to do their homework before arriving to take me anywhere, so there are no concerns about getting to where I want to go, with no risk of being late for appointments, too. I don't want their uncertainties to make me feel anxious.

I don't mind some small talk, general topics which are not related to serious or intimate aspects of their lives.

I would like them to respect my privacy & the privacy of their other clients. There exceptional circumstances where information about me or if I was to mention something like what algorithms here may flag & alert staff to, so a worker has a similar responsibility to alert their employer as well.

Self-employed workers don't have the same process to follow, so it is up to them to be very mindful of what crosses boundaries & what action they may need to take in the event intervention beyond what they are qualified to provide.

I like my PDr's strict boundaries. Sometimes the lack of information may cause me to feel concern & worry, as when he began rescheduling (occasionally over the last year & a half) my appointment time/day. He did not tell me why, until recently. I was consistantly fearing the worst. Now I know it is because he is teaching & this commitment requires some rescheduling from time to time. But while I didn't know, we had a chance to talk about my anxiety about his welfare.

He has made it plain to me, his personal thoughts & feelings & life are his responsibility. Should he need to discuss anything about himself he will find someone, who is not a patient, to talk to,

Like him, I need to have my support workers keeping my best interest in mind, & not try to sway my decisions for their own personal benefit.

Sometimes some negotiation is needed, so no-one 'loses'. I'm willing to tr to see if we can come to an understanding about what their role is, because I like W1 & W2; they have a lot of good qualities. One thing I like is how we can have a joke & stir eachother up. That's something I don't have with my PDr.

Thanks again, the answer to your question is one I need to clarify in my mind.

Hugzies - Sumo! [LRC: Hehehehehe, got you!]

& some hot fish chowder for lunch?

mmMekitty

[Clues_Of_Blue]

Hey mmMekitty,

Just catching up on your thread, sounds like you're in a tricky situation at the moment. Unfortunately I hear a lot of stories like yours about inappropriate behaviour and hazy boundaries from social workers. The thing is, if someone needs a social worker they are already vulnerable and may have difficulty enacting their own boundaries, so it's really disheartening to see how many of these workers are not mindful of their role and the wellbeing of their clients. I don't have answers to your situation, unfortunately, but I hear you and understand how you are feeling about it. You're 100% right that you need to put your best interests first, and you're doing the right thing trialling other workers. The relationship you have with these people is professional, not personal, and you are not responsible for their personal lives. It is unfair and inappropriate of them to try and draw you into that, especially without your consent. Wishing you luck with finding a solution to this, maybe some of the other workers will be a better fit.

Kind thoughts,

Blue.

[mmMekitty]

Hello Blue

Good to see you here.

Thank you for your response.

Thinking the problems with maintaining boundaries may be very much mor common than I had thought, I wonder just how much about boundary setting is being taught to people doing any sort of course which would lead into doing support work with disabled people? Is it being treated as a low importance, if at all? I wonder.

Really, though, I haven't had so much difficulty with this before with any other support workers I've had. Perhaps when people are working for a company, the company takes more care to ensure their workers understand what the limits are, whereas these two, W1 & W2 each are self-employed, with no-one keeping an eye on what they do.

They don't have anyone to answer to but me, if I am able to speak up & raise issues, that is. I'm trying to, but it is not easy for me.

I'm doing better with this than I would have done a few years ago. But it's hard.

I realise I have a fear W2 may be retaliating by making themselves less available.

I'm suspicious she deliberately didn't phone me early enough for me to even try to find another worker for yesterday. I missed out on my gym workout.

This evening she calls at 8pm wondering if she can still be supporting me during the Hydrotherapy because of an injury to her knee, which is not yet healed. All I could say was what we were told at the start. Even though I am with an exercise physiologist who is providing the hydrotherapy, my support worker is expected to be in the pool with me. I can only hope, because it is way too late for me to arrange another worker for tomorrow. Perhaps I will be refused my hydrotherapy session, but because I haven't cancelled early enough, I (NDIS) will still be charged.

Such are the joys of needing to depend on people for support.

Hugzies

mmMekitty

[Paw Prints]

Hello mmMekitty,

I'm sorry to hear you are having this problem, I had to stop seeing my last psych as with each appointment it became more about her spiritual journey than about helping me. I struggled to speak up & used the covid shutdowns as an excuse to stop seeing her.

You should be proud of yourself for being able to say anything, especially as it is something you struggle with. I wonder, with your concern that she might be retaliating by late cancelling, did she ever late cancel before you spoke up, that might be one way to judge if it is just a coincidence that she is doing it now. Either way I think you are wise to consider trialling new support workers if these ones can't adjust their behaviour. Remember they are being paid to be professional & you must do what is best for you.

Hugs

Paws

[Eagle Ray]

Dear MK,

I feel, from what you describe, that W1 and W2 are crossing certain boundaries which is putting unnecessary and inappropriate pressure on you. While life happens, such as the knee injury, I feel that ongoing inconsistencies and phoning you late so that you miss out on things like your gym session, and possible hydrotherapy, isn't ok if it keeps happening. I'm wondering if there is any advice you can get through the NDIS on this? I'm assuming that all the funding for support workers is coming through them. As you say, where there is a company there is someone to speak to, but when they are self-employed it's a little harder to sort out. I just wondered if there is an NDIS support line for advice or an advocate who could act on your behalf in this situation?

A few years ago a friend asked if I would do some care work with her adult daughter with an intellectual disability. The pay would come out of her NDIS funding. I met her daughter, really liked her and thought initially I would do it. But then I reflected on my own family care commitments and that my health had been deteriorating (this was about 2 years before I was diagnosed with an autoimmune disease). I became concerned I may not be able to consistently deliver in this care role, so I chose not to do the job for the sake of my friend and her daughter who needed consistent, reliable care.

So my feeling is that W1 and W2 need to be able to provide consistency, make you their priority when they are with you and should not be excessively sharing their problems. If they continue to only let you know at the last minute that they are going to cancel on you, that means they are not fulfilling their job description.

I'm wondering if it would be easier to put things in writing (e.g. email) to them about your concerns if it is hard to speak up? You do mention liking them and being able to enjoy having a joke. If you did put something in writing you could try by initially pointing out to them those good points and what you enjoy about their work with you. Then explain the things you are finding difficult. Then finish with something positive at the end. I've heard of this described as something like the sandwich effect - providing critical feedback between two positives as a way of softening the feedback and also focussing on what you value about the people concerned.

I'm not sure if that's helpful or not. I know you mentioned trialling other support workers, so if W1 and W2 continue to present problems for you, I hope that the others may be able to deliver. I get that things like your gym session etc are important for your well-being and it can leave you feeling a bit precarious when you don't know for sure if you'll make it to things. Perhaps observe how they are over the next couple of weeks and then you might have a clearer idea of how to proceed.

Take care and hope things become more settled soon.

[Croix]

Dear MK (with a wave to Blue)~

I'm impressed yo have such a clear picture of what is needed, so many peole that use carers do not and simply put up with whatever they get.

Boundaries are of course essential, having to live at least part of your life with others in your house means no other way will realy work without you feeling displaced and often put upon

I wish you the best of fortune in finding what you need.

You frightened the life out of Sumo diving in for a hug during a time when he was 'busy'.  Now I'll have to give him all my fish chowder to sooth his nerves 😞

Croix

[Paw Prints]

Hello mmMekitty,

Just popping in with a giant mug full of hot chocolate & yummy marshmallows for you. 

Schnozbops from Woofa & gentle hugs from me