The meaning of no or words that have no meaning

It’s getting harder and harder to understand what Ma’s trying to tell me.  Since being placed on morphine her words have been getting more and more garbled.  I know that she thinks she is talking English but to me it’s a foreign language or as my sister calls it, Elvish.  I kind of like that description.  It conjours up thoughts of another world or an alternate reality.  Because that’s where my Ma seems to mainly exist now; in an alternate reality.

Ma’s weight has dropped dramatically and she doesn’t eat any more than a couple of bites of food if that.  The morphine has played havoc with her appetite making her nauseous. Tonight she got Baked Beans and toast for dinner.  After telling her what it was, she told me she didn’t want it but she wanted Baked Beans. I showed the plate to her and told her it was Baked Beans but she didn’t want it… she wanted Baked Beans.  I was able to feed her a couple of mouth fulls before she again informed me that she didn’t want any more of that, she wanted Baked Beans.  I’ve learnt to keep placing small amounts of food in her mouth telling her what it is so that she’ll (hopefully) eat it.

I got her a cup of coffee and she sipped some through a straw before informing me that she wasn’t allowed coffee any more.  On trying to find out why not and who’d told her she wasn’t allowed to drink it, she told me stories told in words I just couldn’t understand.  English words that had no meaning to me. I’m never sure how to react.  I usually end up either apologising and telling her, “I’m sorry, but I don’ understand” or trying to distract her or pretending I understand what she is trying to tell me.

She interacts with the television like it’s real.  She talks to the moving pictures and sometimes interacts more with them than me.  I suppose it’s something to be grateful for, at least she’s getting some enjoyment. She’ll ask them to do something than ask me to find out what’s going on.  Tonight she wanted me to look for a dog.

Ma likes spitting out anything she doesn’t like.  Texture and smell seems to play a big part in what she’ll eat.  Foods she used to love like scrambled eggs, she will no longer try.  Cake is too crumbly in texture and hard foods are too difficult for her to chew.  She’ll usually make little or no attempt to feed herself and chewing a small morsel of food seems to take an eternity.  I’m running out of ideas on what I can coax her diminishing appetite with. Every mealtime is a challenge.  The kitchen staff bend over backwards trying to get her to eat. I always try to be there for at least one meal a day so I can make sure she’s get a little bit of something, excluding Leo, her snow leopard, in her stomach… more about this later.

Last night was challenging.  Her dinner was delivered, little quiches cut up and hot which looked and smelt delicious.  She didn’t want them.  I then asked her if she wanted raisin toast, she did.  I cooked it and she informed me she didn’t want it… I then offered jelly and she had a couple of mouthfuls before saying, “no”.  I tried yogurt next, then watermelon… halfway through all of this, I discovered she had no bottom teeth and found them in a container in the bathroom. Added to this, she informed me that she wanted to eat Leo.  Leo is her stuffed toy Snow Leopard that I sponsored for her at Christmas.  She picked him up and started gnawing on his tail.  I told her that she wouldn’t have Leo any more if she ate him but she told me that she didn’t care, she was going to eat him and started getting quite angry at me. Luckily she became distracted and Leo lives to fight another day.  She loves him and her stuffed cat she named, Fonzie.  We returned to the watermelon, which is much easier to eat with a set of teeth!  Panna Cotta was spat out.  Corn Relish Dip was acceptable for a couple of biscuits before also being spat out.

I’ve learnt that ‘no’ can actually mean ‘yes’ and patience is required by the bucket load.  I wish I understood what Ma was trying to tell me.  I know she gets angry and frustrated at my lack of comprehension.  Sometimes I can guess what she is trying to tell me but more often than not, I don’t. It’s becoming increasing difficult to share her reality.

Every day I tell her I love her and sometimes she tells me she loves me back.  Other words may have lost their meaning but we can still communicate with love.

 

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Quality of life?

Dear Ma,

What kind of life is it to lie in a bed day after day with only the television for company and the occasional visitor?  Your daily highlights consist of dressing changes; personal care and meal delivery and me.  They wanted to place you in a ‘comfort chair’ so you could be wheeled around and get you some social contact but they deemed it unsafe when you tried to get out of bed because you thought you could stand and walk.

What life is it to have no real awareness of what’s going on around you?  Sometimes I understand what you’re trying to tell me but more and more often I can’t translate.  You sometimes see things on the television you think are real and can no longer read your beloved books.  Leo, the snow leopard, your cat blanket, and blue ‘blankey’ are now your biggest comforts.

What kind of life is it when you are given pain every time you are moved and you yell and scream?  The pressure sores on your bottom have nearly healed but they no longer want you to sit in a chair for fear of a reoccurrence.  They also don’t think you can ‘cope’ in a chair.  Your left leg has suffered from another infection but is slowly improving but still looks nasty.  Your right ulcer is holding its own.

What kind of life is it when every pleasure you once enjoyed is taken away from you?  I sit with you and sometimes you cry and I stroke your face telling you everything is alright. But it’s not.  My heart is breaking and I wish you’d find peace.  Sometimes you tell me you want to go.  You tell me you’re tired and I wish you sleep.

Today I broke down with staff after trying to fight battles that have already been lost.  I’ve become close to these people and I know they try their best for you.  I know that you will no longer be able to go out with me.  I know that you probably won’t feel the sun and breeze on your face any more.  I hate that every thing that once gave you pleasure has been taken away from you.  When they started the morphine it was to give you quality of life.  A life without pain.

I will continue to do my best for you and will hold you close to me until your time comes.

Your loving daughter,

Jennifer

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.

The day I got my mother back

Sometimes it’s hard to remember what Ma used to be like.  The mother of a few years ago asked about what was happening in your life; wanted to know how your day had been; had opinions about world events; worried about you when you were unwell; and handed out valuable culinary advice.  Fast forward to a few months ago and I had to tell her how to cut up a carrot.  Heartbreaking.

I moved Ma into a nursing home 4 July this year.  The hardest thing I’ve ever done and I’ve regretted it many times over.  It doesn’t matter that I was barely coping and that I’d just about reached the end of my rope.  The guilt will stay with me until my dying day.

On Wednesday last week I was gifted with a visit from my Ma of the old days.  It was a day to treasure and hold close to my heart.  We went shopping.  She wanted to go to a jewellery shop more than anything.  We laughed and joked like the old days.  Talking nonsense.  I took her to a jewellery shop where she was determined to buy me a Christmas present.

Ma hasn’t taken an active interest in Christmas or my birthday for a few years now so this gave me quite a glow inside.  She looked at the earrings and kept pointing them out saying, “do you like this?”  I tried to steer her away but she was determined!!  The lady in the shop must have had an inkling and gave Ma a catalogue and I managed to get Ma to leave.  We’d only gone a couple of metres when after some discussion, we turned back and re-entered the store.  I purchased a pair of earrings we’d both decided on.  Angel wings with little hearts.  Ones to treasure.

We continued on our way and Ma chose two dresses, a skirt and top to buy.  Some of it from me for Christmas.  By the time we left the shopping centre she was glowing.  We stopped at her favourite cafe for lunch and she ate the best I’d seen her eat in weeks.  It was one exhausted old lady I took back.  She kept thanking me for what I did for her which never happens anymore.  I kind of didn’t want to leave as I wanted to savour and cherish my time with my Ma of old.

Next morning I arrived to find her sleeping in her bed!  This hasn’t happened for weeks, which is why she now has bad pressure sores on her bottom.  She was sleeping like an angel and when she woke up she smiled at me.  I gave her an early Christmas present of a rug I’d had printed with pictures of the kitties.  A member of staff walked in and stopped to stare at Ma in her bed and told her she could have breakfast in bed like ‘the queen’.

That was the last I saw of my old Ma.  By that afternoon she had regressed back to the Ma of today.  I knew it was coming but couldn’t help but mourn that my Ma was gone once more.  Today she didn’t care whether I was there or not.  As I left, I told her I loved her, as I usually do and she said, “thank you”.

I do miss her.

 

 

 

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.

The Saga of Ma’s Ulcer – Vigilence

One of my biggest concerns when I put Ma into the nursing home was the care of her chronic leg ulcer which has been ‘going’ for 5 to 6 years.  On the two previous instances Ma was in respite care her ulcer has gone downhill.  In one case ending up with a hospital stay.  So, when Ma went into care I tried to circumnavigate any problems by being proactive.  I supplied instructions from the Ulcer Clinic, dressings (Acticoat Flex 3 – a silver dressing) and talked about my concerns to the registered nurse (RN) and anybody else who would listen.  They are all very good listeners and ‘agree-ers’ but unfortunately not very good at following through.

The first two weeks passed without too much incidence… I noticed Ma didn’t have the Blue Tubifast applied to her leg (as per protocol) and was informed that it would have to be ordered in.  One month later and no Tubifast appeared.  I kept on querying…

The point I want to make with this post, is the need to document things and be proactive. This nursing home is one of the better ones…

  • On Saturday 16 July, I noticed the bandage had only been applied over the ulcer site and that it was leaking through the bandage.  I reported it in the morning and again in the afternoon.  On Sunday, 24 July, I reported it again. No response.
  • On Saturday 23 July, I noticed the ulcer had leaked through the bandage (bandage still being done just over ulcer site).  I was told I could contact Ma’s doctor and I did.  He attended and looked at the ulcer and prescribed Keflex for possible infection.  After waiting around 40 minutes for the Registered Nurse (RN) to come and dress her leg I chased it up and was informed that it wasn’t time for the dressing trolley and we would have to wait.  I watched the RN bandage her leg (she informed me she had never done it before, so I talked her through it).  Again I expressed my concerns over the ‘care’ of Ma’s leg.
  • On Wednesday 27 July I arrived to find only Acticoat Flex 3 on Ma’s leg with the soiled dressing on the floor, there was no sign of a bandage.  Ma told me it had fallen off on Tuesday night.  I reported it.  The RN dressed her leg as per the protocol, I explained to the RN my concerns and was told they would talk to the doctor as they were concerned about the oedema in her leg.  I sent a photo of the ulcer to the doctor and explained that the RN would call him.  The doctor attended Ma the next day, Thursday 28 July morning with a RN attending.
  • On Friday 29 July afternoon, I asked what the outcome had been and was told somebody would ring me.  Nobody did.
  • It was then I realised I would never be listened to at this level and rang the manager of the nursing home. He listened to my concerns and promised things would change.
  • My sister queried Ma’s leaky leg again on Saturday 30 July and was told the RN would dress it again after her lunch at 2.  I arrived on Sunday 31 July and found the dressing hadn’t been changed (to our knowledge).
  • On Monday I met with the manager and discussed Ma’s treatment. I showed him photos and he agreed that the treatment of her was unacceptable.  He promised he would see to it that  a care plan was drawn up for her leg, with consultation with me, and that all the RNs would have to sign off on it.  If I noticed any deviations from this, they would discipline the person responsible.
  • On Tuesday I arrived to find that Ma’s other leg had a dressing on it with blood still on her leg… The injury had apparently just occurred. The new aide had brought Ma back from breakfast and had been a bit too enthusiastic in her care causing Ma to stumble and cut her leg on the wheelchair.  (Ma is down for a tray in her room for breakfast but they keep trying to force her into the dinning room…)
  • I received a phone call while I was there, reporting the damage to Ma’s leg. The RN came and talked me though ma’s dressing plus her care of Ma’s leg and that she’d reported it to the doctor… this was the same RN who’d previously had no time for me… somebody must have put a burr under her saddle!!
  • Later that day the Nursing Manager called me wanting to meet and discuss Ma’s care. She told me Ma’s treatment was unacceptable.  She also wants to show me a couple of dressings she feels may give Ma some relief.  We meet tomorrow.

After one month of fighting, we have come to this. Why?

What about the other residents that have no advocate?

Lessons learnt:

  • Document, document, document and document some more.  Photos and dates and notes.
  • I had learnt from previous experience that things will probably go wrong.  Be prepared!
  • If you are concerned or worried, express your concerns.  If nobody listens at the lower levels, go higher.

 

 

Moving on with Ma…

A year ago on  26 June 2015, I started writing my blog, sharing my experiences looking after my Ma. This week, on Monday, I moved my Ma into a nursing home after caring for her full-time since September.  Full-time care became necessary after three anaesthetics in five months left her with delirium which I was told was dementia and that she would never be the same.  They were partially right.  After five months of delirium she got better although she was never the same after.  And after getting better the confusion and hallucinations started to progress.  So much so that I couldn’t leave her for more than an hour at a time.  Prior to this I worked full-time and cared for her.

I was told aged care moves fast.  I received a call on Thursday saying there was a room for Ma at her preferred nursing home, aka the house on the hill.  I picked the paperwork up that afternoon.  After nearly smothering under the pile of forms I managed to fill in most things, with the help of one or two of Ma’s medicinal brandy!  I asked Ma questions while Ma gradually got quieter and quieter until finally she asked me when we were leaving.  I stopped to explain that she wasn’t going anywhere until Monday and that I would be with her every step of the way.  I also asked her to give the place 4 weeks and if she didn’t like it, we’d work something out.

We were there at 10 the next day with paperwork filled in meeting with the Financial Officer. (I was discouraged from bringing Ma even after I explained I had no carer for the time it would take to finalise the paperwork.)  As it was, I wanted her to see the room that was being provided and I also had to fill in paperwork about ‘end of life’ care.  To perform CPR or not; to do everything to save her life and move her to a hospital or just go with palliative care.  Ma and I have discussed her end of life preferences before so I knew the answer to the questions but still felt the need to discuss them again with her.  My head was spinning over the financials with no idea of what we were going to do.

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We moved her electric lift chair in on Sunday and were there on Monday moving in.  I was told that usually aged care providers ring the day before for you to be in the next day.  And I thought this was fast!

The view near her room is beautiful with a lovely verandah residents can sit on and enjoy.  Rooms on this side of the facility cost a lot more because of the view!  There is also a lovely little sunroom right next door.

My sisters and I move her in on Monday.  Her brandy is written up by the doctor and she gets her tipple of a night time.  I talk to the registered nurse and staff about her ‘unique’ problems in the hopes that she won’t have the problems of constipation, ulcer infection and skin rashes that have occurred previously with her two periods of respite care.

I don’t sleep well that night waiting on a call to tell me she’s fallen or something else has happened.  My mind won’t shut down!  On Tuesday I start to decorate.  I hang her pictures up and put some other homely touches in place.  I notice her heart patch hasn’t been removed the night before and that the person dispensing the pills doesn’t really know what they’re doing as they are Certificate 4 and not a nurse.  She tells me that she doesn’t have any idea what any of the pills are for… SIGH.  We discover an old friend of hers a couple of doors down who we stop in and see.

Ma sleeps in her chair again as she can’t get into the bed.  The physio isn’t due until Thursday and I’m told that staff aren’t allowed to life patients legs in beds so Ma will probably be sleeping in her chair until Thursday!  I explain that she is used to a handrail beside the bed which she uses to get herself in and out of bed.  I’m told they don’t have them as they can be looked on as a form of restraint… SIGH

I’m finding things out everyday.  Many things I wish I’d been told before.  I will be making a few suggestions in the hopes of improving things.  There is no resident’s information pack that gives family any information.  My life certainly would’ve been made easier if I’d known then what I do now!