A different kind of Christmas

This Christmas was my first by myself, with Ma in care.

Since Dad died, Ma and I have planned the menu and prepared it together.  We would go ham and pork shopping.  Turkey was off the list and chicken was in… only because I pleaded.  The Christmas cake would be made and wrapped in foil until the right moment came to ‘open’ it.  The massive Christmas pudding was no longer an option and we resorted to a recipe that made individual microwave puddings that we froze and ate during the year. We’d cook and prepare way to much food but it never went to waste.

Christmas Eve would find us sitting around the kitchen table preparing the different foods and listening to Christmas music.  Christmas Day would find us doing the finishing touches, with more Christmas music, while having coffee and Kahlua. We then unwrapped presents together while sipping on sparkling wine and nibbling on chocolate coated peanuts and smoked almonds.  Last year Ma attended Christmas Day services with me and my sister which was special… even though she dozed off during the sermon.

Last year I had to show her how to cut things up and how to construct the Trifle.  For years, Ma’s Trifle has been the piece de resistance. Christmas was held at our house and my siblings with their families would all descend for lunch.  After my Dad passed, everyone went their separate ways but the family didn’t miss out on their Trifle fix.  Ma would construct individual Trifles for all the men in the family. For some reason men love Trifle.  This fact belongs with, men don’t know how to hang washing.

This Christmas, everything changed.  I woke to an empty house, except for hungry kitties.  It all felt wrong.  I decided to get out and go to the gym and then took myself to Maccas to pick up some breakfast.  I felt I had to change everything.  I came home, showered and went to church where I cried on the way in; during the service; and when I came out. Everything felt wrong and I felt very ‘off-quilter’.  My sister and her family visited Ma and I arrived around 12 to go to the dining room for lunch with her.

Unfortunately they were still dressing the bad pressure sores on her bottom and I walked in to her crying and struggling, as she’s always convinced she’ll fall off the bed.  Staff then couldn’t work out how to get her out of the bed into her wheelchair.  Asking me whether they should use the lifter or whether she could stand.  The more they discussed, the more agitated Ma became until I told the staff to leave her and I would sit with Ma in her room. They organised a tray for her which was beautifully decorated, unfortunately I didn’t get anything.  She only ate a few bites and gave up.

My sister had left four 200ml bottles of pink ‘champagne’ and Ma sat up like the queen enjoying her treat, with morphine attached, sipping her sparkling while watching David Attenborough DVDs. My man arrived around 4pm and after visiting with Ma we tried to leave.  Ma started to cry and couldn’t understand why I was going.  She wanted to come with us.  We sat some more and I kept saying how hungry I was… She settled down some and we left her watching Carols by Candlelight.

My last Christmas with Ma? I don’t know.  I treasure the times we had and found this Christmas to be very difficult, the time spent with her was bittersweet.  I’m glad I changed the way I do things.  I’m glad I got up and left the house.  If you can’t have what’s familiar, do something different. I know that got me through.

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Another way to break your heart

Ma was delivered back to the nursing home last Thursday afternoon with no pain medication prescribed and a bandage around her arm from an ‘accident’ that occurred on the bed railings at the hospital.  Her bottom was worse with her pressure sores as they didn’t put her on an air mattress.

Every time she is in hospital I inform them of her triggers.  I also let them know that she will panic if she’s turned on her side or if her head is put flat.  She screams and gets very distressed.  Their track record for listening isn’t great.

Her doctor prescribed a morphine pump to deal with her severe pain.  A couple of days later and she is ‘off with the fairies’.  Very happy and docile unless you try to turn her or put her flat.  The nursing home have moved a new air bed into her room and we make sure to positively enforce how comfortable it is.  She lasts in it for a couple of days until she is back insisting on the now very uncomfortable chair.  Her bottom has now badly deteriorated thanks to the ‘care’ she’s received in hospital.  Staff now spend time dressing her bottom, arm and both her legs.  At home we only had to worry about her right leg ulcer.  If only….

Today I turned up to take her to the Ulcer Clinic.  This was a special appointment that was made because of the drastic deterioration of her legs.  She was in morphine land, and she couldn’t understand how to put her bottom onto the car seat once I had her up.  I rang for assistance and the physio aide tried to assist with a belt but we had to give up.  There was no way we could get Ma into the car.Ma kept apologising to me but I could tell she wasn’t really ‘there’.

I get her back inside and we commenced dressing her ‘wounds’.  We can’t get her to stand so we try and succeed in finally getting her on the bed.  We then have to get her onto her side to get to her bottom.  She screams and thrashes but we hold her in place while the nurse works as fast as she can and we try and distract her.  Towards the end of the dressing the aide collapses and I catch her before she hits the deck while Ma asks for a drink of water…

We move onto her arm, which is a large pus sore, and dress that before moving onto her legs.  I try and distract Ma to the best of my ability but she still jumps and shrieks and calls out.  So much so that she pulls the morphine pump out and it has to be reinserted on her other side.  By some miracle her legs are actually looking better.  The nurses started trialling a new dressing on her leg on Friday and it seems to be working.

We finally get all of her dressings finished and she lies there drained.  She doesn’t want her lunch so I feed her corn relish dip and biscuits, a nectarine and some mango from the fridge stash I keep.  She has been very clingy of late and wants to know when I’ll be back.

She rambles a lot and says a lot of things I can’t understand or decode.  People I’ve never heard of; places I’ve never been to; her car; her cottage; her boyfriend; as well as my boyfriend… who isn’t my boyfriend.  Words that are slurred; laughter at I don’t know what.  I should be glad she’s happy.  Again she asks to be released.

She had her hair done yesterday with purple streaks put in.  Staff have now informed me that she struggled getting to the basin and got very distressed and that they don’t think she’ll be able to have her hair done any more.  Another pleasure gone, if I don’t find a way.

I now realise that our going out days are probably over.  Just another thing that gave her pleasure that has now been taken away.  Going out for coffee and lunch was one of her very favourite things.  I will explore wheelchair taxis but I feel defeated.

I need to accept that my Ma of old is gone and adapt to the ‘morphine happy’ Ma that she’s now become.  She doesn’t suffer much pain but she is now lost to me more than ever.  I’m very happy that she isn’t suffering but I miss those glimpses of Ma and the conversations that we captured when pain etc. allowed us.

We always said we’d chose quality over quantity when it came to her life.  I’m now second guessing as to whether a morphine haze offers the quality we so longed for.

Basic care or rocket science?

When did we as a society stop caring about our aged?  Why do people work in aged care when they really don’t care about the wants and needs of the people they are caring for?

Since placing Ma in care back on the 4th of July, I have been fighting to get Ma’s medical and hygienic needs met. What I think of as basic human needs.  Somebody to care about whether her incontinence pad is changed or her teeth are clean; that she takes her medications and that her wounds are dressed appropriately; that she is clean and comfortable.  Sounds like something we would all like? Basic care you think?  Unfortunately not.

I get so tired of fighting about whether Ma’s daily needs are met that sometimes I let things slide. Every day I walk into the nursing home not knowing what I will find.  Some days I feel like not going, as just walking through the door fills me with trepidation.  Will she be crying, in pain, staring into space or just the mother I remember?  My love for my mother and the situation I have placed her in weighs heavily on my conscience.  I go every day because I can’t trust the nursing home.  I’ve learnt from experience that I need to be there every day.

A conference with the nursing unit manager and the manager of the facility give me reassurance for 5 minutes until I visit with Ma and watch Ma’s leg being dressed by a nurse who clearly doesn’t know what they are doing.  We talk her through the dressing change and the words of the nursing unit manager ring in my head.  “I will walk all staff through the dressing of your mother’s leg to make sure they’re competent.  I will sign them off.”

Unfortunately the nurse who regularly does her dressings is on holidays.  Two more emails later and I’m still fighting for her dressing to be done correctly.  I’ve even offered to do it myself.  It’s not rocket science, even I can do it!  I dressed Ma’s leg for many years before she went into care.  The nursing unit manager is very good at telling me what I want to hear, but nothing changes and there’s no follow through.

Ma is a high falls risk and has a chair and bed alarm.  I would say that 8 times out of 10, this isn’t switched on.  One day I came in to find not only her chair alarm wasn’t plugged in but her hand buzzer wasn’t either.  Again and again, I report this.

Over half a dozen times now, I have walked in to find some of Ma’s medications on the floor because staff haven’t made sure she has swallowed them.  Three times this was Ma’s Targin, a slow release pain killer.  Ma hates taking her medications.  She can’t swallow very well any more and staff’s attitude sometimes makes her disinclined to obey their commands.  Staff have even given me her medications to give to her.  I’ve had staff complain about how difficult and time consuming Ma is.  Ma thinks she is being poisoned as she doesn’t know what she is being given.  I tell her what the medication is and what it’s for and use her favourite yoghurt to get her to take them.  More rocket science?

One of the things that makes me angry is finding that she still has a stinky disgusting incontinence pad on from the night before, but is dressed and ready for the day.  Thank goodness this has only happened twice.  But in my view, that’s two times too many.

How do you feel when your teeth haven’t been cleaned?  I’ve been told by the nursing unit manager that residents’ teeth are cleaned twice a day and soaked once a week.  Today, as on other occasions, she asked me to clean her teeth.  They were disgusting.  I soaked them first before scrubbing them.  Ma told me that may be she could now taste something.  I took photos and sent it through to the manager and nursing unit manager.   This makes me want to cry.

Ma now has pressure sores on her bottom because she sits in her chair nearly 24 hours a day.  She has only slept in the bed on a couple of occasions. When she sleeps in the bed she has a panic attack when staff don’t answer her calls and goes back to her chair.  I contacted her doctor to check her bottom and he ordered it to be dressed daily.  I am shown the dressing chart by the nursing unit manager but again, nursing staff don’t follow through.  Today her chair pressure pad wasn’t on her chair but leaning against the wall.  Ma was complaining of pain and felt instant release once I’d placed the pressure pad on her chair.

Why is this happening?  Why am I constantly fighting for Ma’s basic needs to be met.? I feel sick every time I think of what she’s going through.  She cries and tells me she wants to leave.  I feel like I’ve let her down.

What do people do without an advocate?  If Ma’s chair alarm isn’t put on; her wounds dressed correctly; her teeth cleaned etc what happens to the others?  How sad that we have forgotten to care for our aged.  How I regret placing her in care.  I feel like I’ve let her down on so many levels and yet I’m so angry that her basic needs aren’t met by the people that are supposed to care for her.