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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The long goodbye…

Since Ma was placed in care on 4 July until now, I’ve watched her slowly deteriorate.

Today I visited to find her with her head in her hands confused and unhappy.  She was so happy to see me and told me of ‘people’ in her bed; ‘people’ taking her things and waking up in a place different from where she went to sleep.  She started to cry and told me how she was so unhappy and felt so bad but couldn’t tell me in what way.

The nurse who was giving out her nightly medications gave them to me as she didn’t want to distress Ma further.  I talked to Ma about them and she agreed to take them.  I gave her a hug and we went outside to side in the sun and feel the breeze on our faces.  We sat and talked.  She couldn’t remember me being there yesterday or that she’d slept in the bed the night before.  She was distressed because she couldn’t remember and she felt insecure. She told me I was the only one she trusted.  She broke my heart.

On Wednesday last week she was very confused and weak and she ended up going to hospital to get checked out.  They did scans and x-rays and bloods.  The bloods came back with infection and showing that her kidneys were failing.  The doctors were wonderful and we talked about the need for comfort rather than invasive procedures and opted not to do a urine test.  Sounds easy?  Just wee in a jar.  Not with Ma.  Her legs weren’t working and last time they had to try and get her on a pan on the bed and she screamed.  They were going to put in a catheter but decided against it.  Too much!

In the end they gave her IV antibiotics and arranged transport back to the nursing home.  I arrived to find her tucked up in bed… Ma hasn’t slept in a bed since she entered the nursing home back in July.  She has slept in her chair every night which is why she now has pressure sores on her bottom.  I stayed the night with her and she never settled all night.  She’d drift off to sleep and her legs and arms would twitch and wake her up.  She would call out and talk about things that weren’t there.  She cried and told me she had had enough and wanted to go.  She broke my heart.  I wanted her to be able to go.

Around 5am I told her I would go and she started crying.  I said I’d stay.  My sister relieved me around 9 and I went home and bawled my eyes out.

Saturday morning arrives and my man turns up with flowers for me and for Ma. We went to see Ma and she was sitting there asking to be taken out!  I will never get used to the roller coaster ride.  I’m barely dragging myself around and she’s raring to go.  We pushed her along the path on the common and my man demonstrated his prowess on the exercise equipment and she laughed and laughed and made jokes.  I could hear her joy.  She said how she loved having the sun and breeze on her face.

She doesn’t eat much now and is down to just over 70kg from around 90kg.  She has difficulty swallowing.

Tomorrow we are supposed to go to the Ulcer Clinic.  Do we go or do we not bother any more?  Her legs are now stable.  The doctor has cut back on her medications because she has very low blood pressure now.

When do you say enough is enough?  They talk to me about ‘comfort care’ just managing the symptoms.  I wish I knew how much longer we had.  I want to spend as much time with her as possible but I’m not sure how much time that is.  I know that I’m now ready for her to go.  Seeing her suffer mentally and physically breaks my heart.  In the past, I’ve been selfish in wanting her to stay.  Now I just want her to be free from pain, confusion and suffering.

She breaks my heart. My wish for her is to know that her family loves her.  I hope she gets that wish.

 

The things that go bump in the night…

“Macbeth does murder sleep—the innocent sleep, sleep that knits up the raveled sleave of care. The death of each day’s life, sore labour’s bath.  Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast.”

Oh Mr Shakespeare could you have been describing dementia and sundowning syndrome?  Ma’s sleeping or should I say, lack of sleeping is starting to make me into a cranky old crone. I can’t remember what a full night’s sleep is like.  I seem to sleep like a mother with a newborn, lightly, waking with every whimper and moan that Ma utters.  If Ma is having a hard time with her bladder she will be up and down more times than I care to recall.  Other nights it’s because of ‘people in her room’ or fixations or just her interpretation or her surroundings (like my poor housekeeping in not pulling up the bedding or leaving clothing hanging up!).

On a BBN or Bad Bladder Night as I call them, we can be up every 2 to 3 hours.  I feel like I’ve no sooner fallen back into bed before I hear the clunk clunk of Cyril the wheely walker heading down the hall to the toilet.  I stumble out and assist with my back turned dreaming of my nice bed while I wait for her to finish, pull her pants up and show her how to get back to her room.

Now the weather is colder I need to make sure I tuck her back in as she feels cold nearly all the time and can’t pull the bedclothes up by herself.  I have flannelette sheets on her bed and two fleece blankets and a doona but she’s still cold.  Lately she’s asked for me to put her ‘bluey’ on, which is a neck to knee fleece dressing gown which makes her all snuggly warm, or her poncho.

Recently she was fixated on her handbag.  She carried it everywhere she went, even into the toilet.  She would open it and count the money, she’d take the purses out and hide them.  So in the middle of the night she’d get up to count the money or look for the purses which she’d forget she’d hidden.  The money would always be missing, not that she could tell me how much money was in the bag or how much was missing.  Sometimes the money and purses were still in her bag but she just couldn’t see them.  At 3am I’d hear her shouting to ‘the man’ to give her back her money!  I finally couldn’t take it anymore and confiscated her bag telling her I was keeping it safe.  I also told her if she thought there was any money missing, I’d reimburse her.  She hasn’t mentioned the bag since.

Some nights she wants to sit on the side of the bed reading.  I will go back in to find her asleep with her head in her lap or lying backwards across the bed.  There is usually an ulterior motive such as a ‘person’ in her bed so she can’t lie down.  I will never put dark coloured sheets back on her bed again!  The week I had them on her bed she needed me to show her there was nobody there whenever she returned to her room of a night.

She is usually very restless of a night nowadays.  You tuck her in and 5 minutes later she is sitting up.  If she goes to sleep, it’s only for an hour and then she’s awake crying or doing what I call her ‘Moaning Myrtle’ (Harry Potter).  It’s not exactly crying it’s more of a weird kind of whimper.  I’ll ask her what’s wrong and it will be that she’s all alone, or that she wants to go home, or she wants to get dressed (which is weird because she’s been spending all day in her ‘Bluey’ and nightdress as it’s the only way she’ll feel warm). I can never tell when it’s going to be one of ‘those nights’.  She can seem perfectly alright going to bed but within a couple of hours she’s awake and restless.  The other night she called me into her room because there were flames shooting out of the bookcase.  Thank goodness she was wrong!  She settled down once I’d checked it out.

Last night was ‘one of those nights’ and now she has dozed her way through the day.  I feel like waking her up every time she drifts off… but that would be mean… but sometimes I feel like being mean. Ah sleep…….

10 Lessons I’ve learnt caring for Ma

Over the last 12 months, caring for Ma has taught me many lessons.  Some I’d rather not have learnt.

  1. To be tidy! – I’ve never been the world’s tidiest person, I’ll be the first to admit that.  In the past, when Ma could dress herself, I left clothing hung low on cupboard doors so she could reach it and jackets were draped over chairs.  I soon learnt that these items could at any time turn into people or animals.  I would hear her talking to them.

    If I leave anything draped on a chair, the ‘boy’ who visits her, wears it and then she won’t!  She’ll say, “I’m not wearing that!  The boy’s been wearing it all night!”  The item will either have to go in the wash or be snuck back into the cupboard.

    Bedclothes folded back, because of the hot weather, turn into ‘bodies’ in her bed so she wouldn’t go in her room.  I always have to make sure bedclothes are smoothed within an inch of their life.  Just last night, when I’d forgotten to smooth her bed, she refused to sleep in her room and slept in her chair.  I have had to learn to hang stuff away and remove anything that looks like it could ‘manifest’ itself.

  2. To trust only myself – I’ve been let down on so many occasions I’ve lost count.  People promise they will call or call in, but they won’t.  They will say they will do something for you, but they won’t.

    Over the last few months I’ve been forced to ask for help from people when I couldn’t do things.  Unfortunately this usually ended up either: a) not happening ie. they forget or didn’t get it done; b) making me feel like I’d just asked them to fly to the moon; or c) just plain stuffing up (maybe I give bad instructions).  So now I just try to do it all and forget about the things I can’t get done that way I don’t get disappointed.

  3. You’re on your own – Don’t expect help from services. The services that are in place to help are so over subscribed they can’t help.  They assessed Ma as needing high care and said we could access extra help at home…. that was in June 2015.  We are still waiting.  It’s not like I haven’t tried to get help.

    The social worker at the hospital couldn’t help.  The Federal Government’s My Aged Care were shocked at the waiting list but the most they could offer was four (4) hours in-house respite a week in my name (which I’m very grateful for).  I even wrote to our state and federal members, but they didn’t care or didn’t respond.

  4. Do your own homework – Don’t wait for services that may never come.  Talk to other care givers for hints and tips.

    If I hadn’t contacted My Aged Care I would have no four hour break to go to work.  If I hadn’t contacted the Continence Foundation of Australia Ma wouldn’t have found the right pad or accessed Government funding for pads and we wouldn’t have been given helpful information about managing her bowels.

  5. Be prepared! – Ma’s bowel and bladder can be unpredictable.  You just never know what they are going to get up to.  I always take a change of pants, wet wipes, disposable gloves in a plastic bag whenever we go out.  I learnt this lesson from a poor lady who had been ‘caught short’ and was in a dreadful mess from a bowel accident while we were out shopping one day.

    I have a full list of Ma’s medications, medical history and her doctor’s details, pension and medicare cards on the back of the front door, and in both our handbags. It’s a real time saver when you go to a new specialist or she needs to go to hospital.

  6. Increased ‘craziness’ has a trigger! – Ma can have some good days where she doesn’t hallucinate a lot and her confusion is minimal.  This can change with a wave of a wand.  It’s like a switch is flicked.  One minute she’s there, and the next minute we are off to ‘never never land’.  I’ve found that there are triggers that send her ‘off’. These include:  tiredness, constipation, being upset, medications (increase in pain medications or a new medication), pain, illness such as a Urinary Tract Infection (UTI), and my latest nemesis, heat.

    This is hard to keep on top of, sometimes you just have to ride it out!  Make sure you rule out the ‘nasties’ like constipation and UTI or other and seek medical attention if you aren’t sure.

  7. I will never be patient enough – Every day I pray for patience with Ma and every day I lose patience with Ma.  When you are with somebody 24 hours a day, 7 days a week, you will lose your cool.  Sometimes I scream and shout and feel like running away from home.  I can hear myself yelling but I can’t stop myself AND I hate myself for it.

    If Ma is having a bad day I sit with her and try to stimulate her through conversation.  It’s a huge emotional drain and when you are a bit of a loner like me it really starts to get on your nerves.  I’ve learnt to walk away to what I call my ‘naughty corner’ and re-group.  If it’s evening this will involve a glass of wine.  Sometimes I think I’ll be lost forever.

  8. You will lose friends and family – This has caused me a lot of pain.  My focus is now entirely on Ma and I’m not the person I once was.  People move on.  People can’t deal with Ma’s changes, or mine for that matter.

    I don’t have the energy to waste chasing them so I let them go and mourn their passing.

  9. Ma’s reality is different from mine – Who is to say whose reality is the correct one? Ma’s reality is made up of people I can’t see doing things I can’t see.  Just yesterday the ‘army men’ were on the roof with a couple of telephones.  The other day she wouldn’t go back to bed because she said fleas had been biting her.  Of course I just think to myself, “here we go again”, but I go and look anyway and find ants in her bed!

    I’ve learnt that sometimes her ‘crazy’ has an explanation or her use of words leads you down a different path to what she intended.  So now I always investigate first before I look for a trigger before I make my mind up.

  10. Find ways to hang on to your sanity – The first thing a carer is told is, “you have to look after yourself!”  I always laugh when I’m told that.  There is no way as a carer that you can make this happen unless you have services and money to spend on caring for your loved one ($60-70 an hour).  So, you learn to find things to help you hang on to your sanity.  Mine include an hour at the gym three mornings a week; my blog where I can cut lose on all that ails me; op shopping where I can lose myself among racks of second hand clothing in search of treasure… and clothes I’m sure I will never have the opportunity of wearing; music, reading and prayer.  You have to find your ‘escape’ and find ways of losing yourself where you can.

 

Quality of life vs Quantity of life

Which would you choose?

Ma’s has many health issues including Osteoarthritis and Osteoporosis which cause her lots of pain sometime to the point of her crying with it. Two frozen shoulders and when she moves you can hear the bone grating on bone.  Over the years she has been on more pain medications than a junkie. Strong medications with opioids such as morphine and other nasties as well as an anti-inflammatory. They have been the only reason she has been able to function.  She can’t dress or do much for herself as she can’t lift her arms very far.

When the kidney stones were discovered early this year she was taken off her anti-inflammatory because of the risk to her kidneys.  After three surgeries to remove the stones (yep, it took three goes as she was riddled with them) she descended into a delirium which has improved but remains with her so that her doctor and I now think she has dementia.   This has meant that her pain medications have been decreased due to the affects they have on her confused state.  Her pain has increased to the point where it is affecting her confusion and her mobility.  We have stairs, so getting her up and down these has become a major challenge.

We visited a rheumatologist in the hopes of getting her some pain relief.   She tried a cortisonne injection which didn’t give her much relief and sent her into a delirium for 48 hours (I think).  She is now also on a medication that ‘turns the nerves down’ so that the pain becomes less.  (If you read the side affects from that, you’d never use it on the elderly!).  We talked about putting her back on the ani-inflammatory.  The rheumatologist talked about quality of life and referred us to a Urologist for his opinion on putting Ma back on the anti-inflammatory.

The Urologist was very reluctant to put Ma back on the anti-inflammatory but in the end came to the conclusion that Ma needed quality of life and at the moment she wasn’t getting it due to the pain she was suffering from.  He also said that there probably wasn’t another doctor that would agree with what he was doing.

He asked her how she felt about dying from kidney failure and whether she was concerned about it.  She told him, “I’m 84 years of age (she is actually 88) and I’m a firm believer of what will be, will be.”  With that, she was sent on her way with a script for anti-inflammatorys.  You could tell the doctor wasn’t happy but that he couldn’t see any alternatives.  She will be closley monitored with blood and urine tests in two weeks and probably monthly thereafter if no damage is detected.

Within 24 hours her pain had improved and she hasn’t had any strong pain killers in nearly a week just her regular Panadol Osteo.  She has also been brighter in herself, moving better and was able to make it up and down the stairs without too much trouble.  I’m hoping this will continue.

So, which would you chose?  I’m sure I would have made the same decision.  To see her with pain relief and being much brighter is a gift.

Being a carer makes it easier to be taken advantage of…

Why do I get the feeling that because I’m Ma’s carer and fit my whole life around her wants and needs that people, aka service providers, want to take advantage of that?

I have had a couple of ‘run ins’ with Ma’s community nurses over the last few months all stemming from a complaint I made as I didn’t like that the assigned nurse wasn’t following the protocol set down by the Ulcer Clinic.  I used to come home from work to find her dressing was too tight which I re-bandaged.  As Ma has had her ulcer for over three year’s now I’ve learnt to be proactive about its care.  Too often we have had it go ‘pear shaped’ due to changes in her dressing made by a nurse who thinks she knows better then the experts.  (Nurses don’t have the authority to access the ‘golden dressings’ that doctors or podiatrists do so you can get locked into a never ending situation of inadequate dressings.)

The last straw was when I returned home from work to find the nurse had helped herself to a bag on the table which I had some items in so, she could use the bag for the dirty dressings.  My stuff was dumped on the table!  Really? Would you walk into somebody’s house and help yourself to somebody’s things? What was in the bag wasn’t important, the fact that she had helped herself, was.   I rang and asked the ‘boss’ to have her removed, I even said I was happy to take over her dressing changes.  In the past the nurses have always asked me to do her dressing if there is a public holiday or they are too busy.  They have never shown me how to do her dressing.  So, after my complaint and questioning of the nurse’s conduct the ‘boss’ turns from being ‘you need to tell me what’s going on’ to ‘oh no, you must be mistaken’ and ‘I find that very hard to believe’… in other words calling me a liar!  I offered to take over her leg completely but was then asked if I was cancelling the service!!!  The service continued and hey presto the nurse started following the protocol set down by the Ulcer Clinic and deferring to me when she wanted to make a change (roll of eyes).

So, now that I’m at home nearly full-time I was asked to do her leg last Friday because they were busy.  I’m now asked to do Monday because it’s a Public Holiday and now they also want me to do Wednesday because they are sooooo busy!!!  Really? Why is it my problem?  I did do Ma’s leg on the Wednesday because I find it improves when I do it as I find the care the nurses take is ‘slap happy’ at best.  It wasn’t always like this.  The good nurses we had have all left due to changes…

Public holidays mean care is only provided to people without anybody.  That’s by respite as well as community nurses and Ma’s 1.5 hours of house work she gets per fortnight.

Ma was allowed home from the hospital because I was there to look after her yet I get no extra help or assistance.

I keep getting told that I need to look after myself; that I’m important too.  If I’m so dratted important, why can’t I get more assistance?  Carer’s Week is coming up, there are pamper days and BBQs etc for carers being held.  How does a carer get the time off to go to these things? I want to cover the grey on my head and get my purple streaks back but that needs 3 hours! God bless my hairdresser who gave me a mineral powder that covers my grey, for free I might add, delivered through my sister.  Seeing the grey in the mirror and the lack of purple was enough to put me into a ‘funk’.

I’m very grateful I’ve been able to access 4 hours emergency in-house respite for 5 weeks so I can go to work for a few hours.  Why is it so hard?  Why do I feel like I don’t matter or Ma doesn’t matter?  Some days I just want to say ENOUGH! But, I can’t…  and so we continue…

Please don’t call me wonderful!

Over the years I’ve had many people say to me how wonderful I am to look after my Ma.  They are amazed I do so and I’ve even had people suggest that my life would be much easier if I just put her into care.  If they knew me and my relationship with Ma, they would never suggest such a thing.  Ma and I made a pact many years ago that we would cope for as long as we could until I couldn’t handle her  physically or her mental state became unstable.  I will always remember her caring for my Dad in his declining state.  It was also suggested to her that she give up caring for him, but she did until his end.

Sometimes I yell and say horrible things; sometimes I just want to run away, just to have 24 hours of freedom where I don’t have to care for anybody else’s needs but my own.   Sometimes, I’m hell on wheels, filled with so much anger and frustration that I could scream the house down.  Sometimes I feel very much alone and the burden grinds me into the ground so that I feel like I can barely function.

Sometimes, the black dog comes to visit and accentuates every problem into an insurmountable obstacle.  The black dog especially likes to visit on my birthday.  My birthdays, especially the last few years, have been horrible.  I usually take time off work for that reason.  In the lead up to it I can feel myself spiraling downwards into a pit of deep despair.  I start grinding my teeth, having headaches and my temper frays BIG TIME.  I cry at the drop of a hat and just want to crawl into a corner and disappear.  This year was especially bad.  Ma’s mental state was especially challenging with her even forgetting my birthday on the day.  Oh woe is me!  At the time, I truly just wanted to go eat worms! As anyone who has suffered depression knows, once you climb down into your deep dark hole, it’s not so easy to climb out.  Nothing penetrates your walls except negativity.  I could have the nicest thing in the world happen to me and it simply wouldn’t penetrate.  You can self talk all you like, the wall won’t come down until it’s ready. Luckily it did, but I did start to wonder whether I would ever feel happy again.

I look at other people’s lives and what they have to deal with and realise what I’m dealing with is pretty small in comparison.  If everyone’s problems were placed in a pile, I’d probably still pick up the same ones.

At the end of the day, I’m just me.  Trying to do the best I can; wanting to do better and feeling I fall short.  Some call me a martyr, an angel, or a saint.  I’m none of these.  Ma is my ma, she gave me life, and made sacrifices to give me the life I have today.  I’m grateful, but I also have an abounding love for her.  I don’t do what I do for her out of duty.  And when I get a glimpse of my old Ma and we laugh together, it makes it all worthwhile.  Calling me wonderful, doesn’t make me feel good, it makes me think of my short comings.