A respite from Ma?

My sister booked Ma into respite care a number of months ago (the waiting lists are several months long).  The way I’ve been lately, I knew I needed a break.  Not only for my sake but for Ma’s also.  As the date approached my stomach started tying up in knots.  Who was going to take her to the toilet the 4 and 5 times a night she sometimes goes?  Who was going to make sure she emptied her bowels regularly and wiped her bottom when she did so?  We have finally found a regime where she goes every one to two days.  Which has helped her confusion and has made her feel better.

I got her doctor to fill out the medical paperwork to which I added my notes as well as her medications list and medical history.  I also created another list of information containing problems that Ma encountered the last time she was in respite care several years ago.  These included her bowels and what I have done to keep them working; what triggers increases in her confusion and hallucinations; instructions on drying under her apron and breasts and the cream to use (which I supplied); a request to keep her walking rather than taking her everywhere in her wheelchair so that she keeps mobile (learnt that lesson from her last stay in respite); and instructions on how to care for her ulcer including the need to bag her leg rather than scrubbing it under the shower (yes, they did that last time she was in care which resulted in infection and the need for hospitalisation).

I was given the medical form to fill out and had to ring to ask who had to fill it out was it was titled Medical Officer’s Report; it had to be filled out by her doctor.  Doctors are busy, overworked people, I went through her doctor’s report and added my information to it plus her list of medications.  All of Ma’s medical file is kept at the house as the doctor visits her there.

Every time I talked to staff or the Manager at the facility they added information or told me of something else that had to be done.  After ringing the Manager about the Medical Officer’s Report I was told I had to pick a doctor off a list for Ma which I did.  Next time I rang to ask a question I was told that I needed to contact the doctor and ask them to be Ma’s doctor while she was in care as she couldn’t have her own doctor.  The first ones I rung said they weren’t taking any new patients (why are they on the list I asked myself?).  Others didn’t ring back.  I finally got a doctor and emailed Ma’s medical information, only to be informed when I rang that they couldn’t print it and wanted it faxed.  After faxing the information they told me they already had that information but wanted a different form which the lady filled in over the phone.  The evening before Ma was due to go in I opened an email from the Manager asking me whether I had organised with the doctor to admit Ma on her arrival… it was at this point I gave up as I knew the next day was a public holiday and I wasn’t going to be able to ring the ‘new’ doctor.

The day after the public holiday I rang the facility, after organising the doctor, only to be told I was missing another four forms that needed to be filled in.  There was no sign of the form I filled in over the phone.  At this point I broke down as I’d had enough.  Poor communication, nobody rings you back and it’s all been my ringing them asking for information.  The lady I spoke to turned out to have some empathy and was very nice to me.  So after spending 40 minutes filling out paperwork which involved questions about Ma’s children, growing up, marriage, work etc we were ready to go.

Day 1 – On arrival we are taken to Ma’s room which has a lovely outlook on a garden.  The room is very sparse and reminds me of a hospital.  There is a large mirrored wardrobe door opposite Ma’s bed which worries me knowing Ma’s problems with ‘visitors’.  Different people come in to introduce themselves… the registered nurse, aide, social activities person (SAP).  I talk to the nurse about Ma’s bowels; making sure she is dry under her sagging bits; and not showering her ulcerated leg.  I am informed I need to supply all of Ma’s dressings including pads, dressing packs etc.  Nice to be told now!  I also ask about Ma being allowed her brandy of a night time.  The SAP informs me that residents have a big fridge where their alcohol is kept and can have two drinks a day.  They also have happy hour on a Friday.  She says she will put Ma’s stuff in the fridge… it’s still in her room on day 6 of her stay with the first bottle being empty.  The social planner we were promised by her has also not made an appearance.  Ma is in high care so she has a buzzer for a nurse so she can get help to the toilet etc.  I leave her for her first night, worried and upset.

Lessons learnt

• If you are going to put your loved one in respite care for a break make sure you document all of their health history backed up by their doctor if you can.
• If you are going away allow a couple of extra days so that you can see how they settle and sort out any problems such as their medications and any health issues that need careful treatment. They say they are listening but they aren’t.  This makes it very hard to trust your loved one to their care.  Take the time to make sure things are being done properly.
• Try to get instructions in writing. Make a list of questions you want to ask.  I now know the things to look out for but I didn’t before I placed her in respite.
• Talk to your loved one and make a list of the most important things that need to be considered for their sake as well as yours.
• Use their time in respite to assess the facility in case you need to consider permanent care. How do the staff treat the residents?  Are the staff attentive to questions from residents or are they palmed off and talked down to.  Do the staff listen to your concerns?
• Find out what the facility does and doesn’t supply.

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