Playing God

I never expected to have to make life and death decisions for my Ma.  As Ma’s health has deteriorated over the last few years I’ve taken control of all of her medications and medical appointments.  If difficult questions were asked over treatment, Ma would turn and look at me to answer, trusting that I would do the right thing by her.  So much so, that she made me her Enduring Guardian.  This gives me the right to make life and death decisions on her behalf when she is unable to do so.  It allows me to ‘play’ God on her behalf.

When I placed her in the nursing home we had to fill out paperwork for her ‘end of life’ wishes.  Did she want to be resuscitated in the event of heart failure? Did she want to be intubated?  Ma has always said to me that she didn’t want this so I signed the paperwork to say ‘no resuscitation’.  This means that if she is sick and requires antibiotics or anything else, she will be taken care of but if her heart stops, nobody does anything to try and get it going again. Hard core stuff.

Early Monday morning the nursing home rang me to tell me Ma was ill and that she had a high temperature, her oxygen levels were low, her heart was not good and she was incoherent and did I want to send her to hospital.  Of course I said yes and she was taken into Emergency with severe, uncontrollable pain; a raging infection in her newly ulcerated leg in fact. Again I was asked the question of resuscitation and what my wishes were in her care.  Again I had to say to let her go if heart failure occurred.

Ma was crying with pain.  She could barely verbalise as she was in too much pain to do so. I held her hand and tried to take her mind off it.  They pumped three different types of IV antibiotics into her without waiting for test results and gave her three different pain medications.  All without giving her relief.  She cried at me, asking me to knock her on the head so she wouldn’t feel the pain any more.  She called out to God and then told me he wasn’t listening, telling me he didn’t answer her.

I prayed to God to end her pain, to let her die.

A few hours later and she was feeling better.  The pain was more manageable and she’d been moved to a bed.  She was bright.  Later in the day the Dr told me she’d also had a mild heart attack and what did I want to do about it.  I told him I didn’t want any further trauma to ma and he said they would monitor and he would tell me if something had to be done.

I returned to work the next day but told the hospital to ring me if she became distressed. When I arrived in the afternoon they went through her notes with me.  The read out the phase, ‘daughter refused treatment’.  I thought to myself, ‘I wonder whether they think I’m a bad daughter for refusing treatment?’  I hate that I’m making life and death decisions on her care.  She keeps telling me how sick and tired she is of being poked and prodded.

Today I arrived and was stopped by the day nurses who told me that Ma had had a very bad day and was very distressed.  I could hear her yelling and crying from her room.  They’d had to give her an enema and then had to turn her to clean her up.  My sister and I gave her a couple of cappuccinos that made her feel better.  She started to become less distressed and we helped her eat some dinner.  She then developed chest pain and started crying, becoming very distressed, again, praying to God and telling me he doesn’t listen.

The doctor on call came and she told me Ma’s heart had been ‘playing up’ for the last couple of days and that ‘I wanted no intervention’.  I explained that Ma’s heart and blood pressure medications had been changed only in the last week and she decided to place her back on one.

Right decision, wrong decision, I don’t know.  I know in my heart that Ma’s tired and wants to rest.  She doesn’t want to be pushed and pulled and ordered about any more.  She doesn’t want to be in pain anymore. She told me she’d like to go stay on an island somewhere or just sit in her cottage.  She wants peace.  I’m ready to let her go but I still second guess every decision I make.  She’s still giving me cheek, talking about the kitties and discussing day to day things.  This makes my decisions all the harder.

My wish is that she’d just slip away in her sleep. Much as I love her, I want her to have her peace. I want her to be without pain. I want her to have her rest. I want to have done my best by her. I suppose I want forgiveness also.


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.


Life in an alternative reality…

Being with Ma full-time has its challenges. Some days I think I’ll go stark raving bonkers.  It’s like living in limbo.  I feel like my life is on hold and I really don’t know where we are going to end up.  I’d like to think I’m a patient person but some days I really loose it!!  I can deal with the physical side of things till the ‘cows come home’ but when it comes to the ‘mental stuff’ it really does my head in (no pun intended).

After a few relatively sane days, well as sane as things get around here these days, Ma has gone back to having occupants in her bed.  Just trying to get her into her bedroom is a major exercise.  I’ve tried my old routine of:

  • When going into her bedroom I usually try to be there first so I can discretely lounge across the bed in my best pose (think bikini model advertising a car drapped across its bonnet… or maybe not!) so that she hasn’t got an opportunity to say somebody is there.
  • I really ‘lost it’ once and bounced up and down on the bed chanting ‘THERE’S NOBODY THERE’!!!!!.  This of course went down like a lead balloon.
  • I’ve even slept in the bed beside her on occasion.
  • I’ve tried reasoning with her.  Colonel Gadarffi, our cat, disappears if anyone strange appears, so I tell her if Colonel is on the bed, everything must be ok.
  • Iv’e tried luring her with Brandy… her favourite.  Ma and Brandy have a good relationship.  Brandy has calmed her down on a number of occasions.  She usually has one of a night but on occasion this has been earlier in the day depending on circumstances.  As far as I’m concerned at 88 if a Brandy is going to make her feel better, she can have one.
  • I’ve done the mean and horrible thing of calling her a coward to try to spark some gumption (when you’re desperate you try anything as horrible as it sounds).
  • I’ve tried to distract her by turning the television on and doing fast talking till I’ve tucked her up in bed and a cat has drapped themselves across her chest.

There are only two beds in the house, hers and mine.  I would gladly give her mine if she could actually get into my bed which is much higher than hers.  She asks me, ‘which bed am I going to sleep in tonight’?

Today we went to the Rheumatologist to get some help with her two frozen shoulders which affect her mobility and give her lots of pain.  He’s a lovely gentle man who is down to earth.  He questioned why Ma was off her anti-inflammatory as in his opinion, her comfort should be more important than worrying about long term affects of certain drug use.  I agree, but she was taken off this when her urinary/kidney problems started.  Not only was she taken off her anti-inflammatory but her pain medications were also decreased due to her confusion and fragile state.

I feel like the lowest of the low as I only hand out the ‘top you up’ extra strong pain medications when she says she really needs them.  Before all her latest health issues started she was managing all of her pain medications by herself.  I cannot help but think that her pain medications affect her mental state.  As I’ve learnt the hard way, medications can cause delirium: you may not tolerate a new medication prescribed for you.  Sometimes there is an interaction between different medications and sometimes you may have done well on a particular dosage level for many years but changes in the way your body deals with it as you age mean side effects can surface.  One of these can be delirium with its dementia like symptoms (Eat to Cheat Ageing).

So, today when the Rheumatologist assessed Ma, he decided to do only one injection in her right shoulder and see how she reacts before trying another on her left shoulder.  Apparently the elderly can experience some confusion after the injection.  I took her to lunch after her appointment where she was giving me cheek and ate with a healthy appetite. Once home she started to get very agitated and refused to go into her room.  It’s now getting later in the evening and she is sleeping in her electric recliner.  Tonight, I’ve not been able to convince her to go into her room, nothing worked.  I can’t give her her new medication as it makes you sleepy and I’m too scared to give it to her in case she gets confused because of where she is sleeping.  So is it the injection or is it just part of her cycle or is it something else?  So many things can cause her systems.

I feel like it’s going to be a long night…wait and see.