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.

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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.