The ‘D’ word or the disease that must not be named…

So, the social worker from the hospital leaves a message on my home landline at 8am… doesn’t try my mobile or work phone.  By the time I come home it’s half 6.  Sigh, really?  Thursday morning I ring her and she tells me that she would like to meet with me to discuss Ma’s care.  I mention to her that no doctor has yet given me a diagnosis or discussed Ma’s health.

Thursday night my sister and I meet with the social worker who gives me two options.  The first is to transfer Ma straight into care and the other is to take her home.  If I take the second option it may be harder to access care.  If Ma refuses to go I can enact my ‘enduring guardianship’.  If she still refuses then they can appoint the Public Trustee.  Really, you think I would let it get to that?  If she felt that strongly I wouldn’t push her, I wouldn’t do that to her… until her mental state was such that there was no choice.  At the moment, she is still ‘with me’ although she drifts in and out.  She’s now talking about her brother Jim (gone for a few years).

The only decision I can make is to bring her home while we apply for full time care.  What other decision is there?  She’s my mother and I love her very much. The doctor visits me and still doesn’t come out with a diagnosis.  He only tells me that all her physical tests came back clear and they can’t reverse what she has.  He still doesn’t say the ‘d’ word.  Nobody says it… why?

Thank goodness for my government job.  I’ve been there over 20 years and Workforce doesn’t see a problem in converting my sick leave into carer’s leave.  I just need a letter from the doctor.  My manager is happy for me to work 1-2 days a week, I just need to put forward a proposal.  At this point I’m feeling blessed as well as ‘what the heck I’m I doing?!’

The help that the social worker has organised rings me the next day to tell me they can’t help.  I have 4 hours in-house respite a week over 4 days and 1 1/2 hours housework a fortnight. I can’t leave Ma for more than a couple of hours at a time.  We are still on the waiting list for high level care and listed as urgent… we have been since May.  Looks like I’m on my own and my 1-2 days a week work are going down the toilet.

Friday I go to pick Ma up at 10, as instructed.  No paperwork is ready and they are all in conference….Ma’s missing dressing gown turns up.  Turns out she had a horrendous bowel accident after they decided to ‘clean her out’, as she had a bowel impaction, and soiled her night attire… They returned it to me after I made enquiries with no explanation.  Let me tell you that took some disinfectant and cleaning!

As we keep waiting… Herman, a wanderer with dementia pops by for a visit.  The nurse tries to make him leave. He tries to talk to her but every time he starts talking she turns away or gets distracted.  You can see by the look on his face that he knows she isn’t listening.  The frustration is sad to see. He even moves to one side in an endeavour to capture her full attention.  Still she looks away; she doesn’t see him.

After a two hour wait we are sent on our way with papers and a script.  I question the script and am told not to worry about it… SIGH.  Then why write it and why give it to me?  What was the reasoning behind it?

As we are driving home I have to drive slower as Ma gets disorientated with the driving.  She tell me it feels good to feel the sun on her face and she’s glad to be alive.

We are going home.

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