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.

 

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Ma’s way with words (Part 2)

Ma doesn’t say many of her old sayings any more.  Occasionally she will utter one but more often than not it’s a new turn of phrase.  Some real rip snorters in fact…

I’m a bit of a Queen fan (the rock group).  Whenever there is thunder around I will utter the words from Queen’s Bohemian Rhapsody, “Thunder bolt and lightning”.  A couple of year’s ago Ma started saying, “very very frightening” in response.  I have no idea where she got the words from as she was never a rock and roll aficionado but to this day if I say my line… she will say hers!

These days Ma’s nights and days are very much mixed up.  There are many times when she thinks night is day and vice versa.  Even though it’s pitch black outside she will still insist it’s daytime and there is something ‘wrong’.  After one such occasion she uttered to me, “I don’t like these 24 hour days”.

Some days I can’t win.  While we were out shopping I showed Ma a dress I thought would suit her.  After looking it up and down she told me she couldn’t wear it because it was a grandma dress!  I reminded her she was a grandma… she just looked at me. Undaunted, in the next shop, I showed her another dress to which she told me she couldn’t wear because she was a grandmother… I gave up.  No dress was bought that day.

Recently I purchased a bottle of wine and mentioned the name of the wine to Ma.  Ma must not have heard me correctly (or I didn’t speak clearly) because Ma responded with, “what?” “You’ve prepared human?” “Since when have you become cannibal?”

I made some 20160425_115636waffles recently on Ma’s ancient waffle iron.  The ones that weren’t eaten I put in the freezer for later use.  Ma requested some of the waffles for her dessert which she polished off with ice cream and maple syrup.  After she had finished demolishing them she told me she could still hear them ‘waffling’…

My favourite new saying of Ma’s would have to be this one… The other day I asked Ma if she wanted something to drink to which she replied, “yes”.  When I asked her what she wanted she told me she wanted something, “wet and wild”… I finally worked out she meant brandy.  The new name for brandy in our house is, “wet and wild”.

Every new little saying or quip gives me a giggle.  The mother of my past is slowly diminishing.  This new mother is different but still amusing.

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…….

7.5mg of Hell

I took Ma to her Urologist, or as I call him ‘The Wee Man’, on Monday.  After discussions around Ma’s problems of pain, sleeplessness and urinary incontinence, he decided to prescribe Mirtazapine to help Ma with her pain, sleeplessness and depression.  Mirtazapine is an anti-depressant used to treat major depressive disorder.  Knowing how fragile Ma has become to any medications, I was reluctant to get them for her…. And then I thought, “what if they worked and I got to sleep all night?”  I did some research and asked my Memory People™ family if they had had any experience using this on their loved one.  Experiences were varied with some having great success. As each person reacts differently it’s something that’s hard to predict so with great trepidation I gave her 7.5mg to go to bed.

I tucked her in and she was soon snoring.  She slept for five hours straight.  When I checked on her she was lying across the bed in a horizontal position with her legs on the floor sound asleep.  I’m not sure how she got there.  She was restless from then onwards… up and down every couple of hours.  In the morning she was like a zombie.  She ate some breakfast but I couldn’t communicate with her properly.  She sat there on the side of the bed with her eyes closed rocking slightly.  She spent the day like that.  Not making any sense, not understanding anything I said and drifting in and out of sleep…sitting up as she wouldn’t lie down.  She also seemed to be having increased difficulty getting off the side of the bed.

I rang her doctor for advice and in the end I decided not to give her any more tablets.  I finally got through to her in the evening when I roused her enough to eat some dinner.  She was very confused and sat there at the table after she had finished eating until I asked her what she was doing.  She responded with, “you know I’ve only been in the house a short time and I don’t know where the toilet and shower are”.  I got her washed and into bed and she was out like a light.

She roused enough during the night to find the toilet but couldn’t find her way back.  The ‘people’ were also back in her bed so I had to convince her each time that there was nobody there.  In the morning I could see she was more awake but still very dopey.  Her confusion (more than usual) continued, she also seemed very depressed and unhappy and continued to be very disorientated throughout the Wednesday.  She was also very angry at me.  She told me she wanted to go home to her house, that none of her clothes were here and the bedroom I made her go in was different from the bedroom she was in before.

Thursday was more of the same, still confused, still disorientated, still angry.  The doctor visited and checked her over and gave a script for a mild sleeping pill.  I’m not sure I dare give it to her as yet!  The carer came and I was glad to get out for a few hours to go to work.  As usual, Ma was on her best behaviour for the carer.  I walked through the door and it was ‘game on’ with her talking about her imaginary ‘friends’.  Papers that were on the table had been placed there by ‘the boss’ who had come home… She said she had to tell me in case somebody got hurt.  I’m still trying to work that one out.  The radio was on, but she hadn’t put it on… and she wasn’t going to turn it off in case ‘they’ were listening to it. She wouldn’t go in her bedroom as there were ‘people’ in there.  After spending a few hours at work and pretending that my life was normal her behaviours hit home worse than usual.

On Friday she was as cranky as a bag full of cats.  I was trying to do some work when I heard her start talking (my office is next door to her room).  “I want to go home to my house, although I suppose nobody will be there.”  When I went in to see her she said, “why am I here”?  That stopped me in my tracks.  For the life of me I couldn’t think of how to answer her question.  To stall for time, I asked her what she meant.  She repeated her question.  It was then I went for the big ‘D’ for Distraction, and asked her if she wanted to go out for coffee.  She couldn’t get out the door fast enough.  I took her up the street where she bought new slippers. We then had coffee and cake where she looked at me and said, “I feel better now”.  After a shop through the supermarket we came home and she laughed and joked.  It was like somebody had thrown a switch.

Her confusion remains worse than it was before her disorientation the same. It will be a week tonight since she had the pill.  I don’t know whether her mental state will recover.  Her mood seems to be more stable although her ‘friends’ continue to visit.

I’ll just take it one day at a time…

When day is night and night is day

Night times are turning ‘interesting’ in our house.  I have noticed for a while now that Ma is finding it difficult to tell night from day.  Daylight saving just adds to the confusion as it’s so dark in the morning and so light in the evening.  A nap in the afternoon just makes her think it’s now morning and time for breakfast.  Each night it’s different.  Some nights she’ll sit up all night on the side of the bed.  She won’t tell me why, she just says that she feels more comfortable.  I’ll walk in to find her slumped backwards or sideways or even with her head in her lap.  Other nights she’ll sleep through other than toilet stops.  From what I’ve read and from what I’ve been told, it’s more than likely that Ma is experiencing what is called Sundown Syndrome or Sundowning.

Sundowning or Sundown Syndrome is when people with dementia become more confused, restless or insecure late in the afternoon or early evening.  It can be worse with triggers such as a move or a change in their routine.  People suffering from sundowning can become demanding, restless, upset, and suspicious, disoriented and even hallucinate, especially at night.  Attention span and concentration can become even more limited.

Nobody knows what causes sundowning, although it seems to result from changes that are occurring in the brain due to dementia.  People with dementia tire more easily and can become more restless and difficult to manage when tired.

Sundowning may relate to lack of sensory stimulation after dark.  At night, there are fewer cues in the environment, with the dim lights and absence of noises from routine daytime activity.  Ma’s perception of night and day has really diminished.  At 2am in the morning she will think it’s time to get up even though it’s pitch black outside.  Lately she has wandered down to my room crying.  She thinks she is alone in the house and wants reassurance that I’m still there.  (I really don’t know where else I’d be except home, but that’s the nature of the confusion).  She also says she’s cold (it has been very warm lately, even of a night.  I’ve been sleeping with only a sheet.  She wants a poncho on or her winter dressing gown.

As the dementia worsens and the sufferer understands less about what is happening around them, they may become more frantic in trying to restore their sense of familiarity or security.  It is said that the person becomes more anxious about ‘going home’ or ‘finding mother’ late in the day which may indicate a need for security and protection.  They may be trying to find an environment that is familiar to them, particularly a place that was familiar to them at an earlier time in their life.  Ma at her worst, will talk about going to the ‘other house’ which is exactly the same as ours but somewhere else…. But she doesn’t know where.  She is always convinced there are other people living in the house with us. I always show her the locks on the windows and doors and tell her about them.

A person experiencing sundowning, may be hungry, uncomfortable, in pain or needing to use the toilet, all of which they can only express through restlessness.  Factors or triggers, as I like to call them, that can have an impact on behaviour when the sun goes down include:

  • Fatigue – Ma just doesn’t sleep very well and tends to drop off during the day sitting up. This can go on for days until finally she is so exhausted she sleeps.
  • Hunger – I’ve yet to find this a problem with Ma. She likes her food.
  • Infection – such as a urinary tract infection. A sudden change in behaviour could indicate there is an infection.  In my experience the regular symptoms of a urinary tract infection ie. regular need to urinate, temperature and burning when urinating don’t apply to Ma, her confusion just increases dramatically.  She will get her possessions and pack up her wheeled walker and go off around the house.
  • Pain – There are many causes of pain such as shingles, neuralgia etc. Pain can get progressively worse through the day. Ma suffers from chronic pain due to arthritis.  After years of taking very strong pain killers (opiates) her system can no longer handle them due to her fragile state.  Since decreasing her pain medications and starting her back on an anti-inflammatories her pain seems to be back under control without the heightened confusion. She also takes Curcumin with black pepper, a natural anti-inflammatory suggested by her urologist.
  • Medication – Consider whether restlessness is due to medication eg medication may be causing ‘restless’ legs or cramps; diuretics may be causing incontinence, some medications may cause agitation.
  • Constipation and/or dehydration can significantly affect behaviour. This is certainly true in Ma’s case.  If she hasn’t emptied her bowels, her confusion increases.  I keep a strict eye on her bowel movements as she suffers chronic constipation and needs laxatives every day to keep on top of things.  She doesn’t like drinking either, except cappuccinos or brandy… Trying to get her to drink any other fluid is an uphill battle.  Again, her confusion increases when it’s a hot day and she won’t drink.  A glass of fluid (of the right sort) usually decreases her confusion.
  • Extreme temperatures such as a heat wave. Ma’s brain can’t seem to tell her when she is getting overheated.  She will sit in a jumper when it’s very hot with her body perspiring but she still doesn’t think she’s hot.  Her confusion will increase and it’s only when I get her cooled down that her confusion decreases.

Where to begin

Always discuss concerns about change in behaviour with their doctor, who will be able to check out whether there is a physical illness or discomfort present, and provide some advice.

Arrange for a thorough medical examination and discuss the person’s medications with the doctor. Sometimes changing the dosage or the time that medication is given can help relieve the symptoms. The doctor will also be able to advise if there may be undesirable side effects of medication.   Reducing some of Ma’s strong pain medications has led to a marked reduction in her confusion.

Suggestion that may help

  • Early afternoon rest – If fatigue is making the sundowning worse, an early afternoon rest might help. Keep the person active in the morning and encourage a rest after lunch.  Ma drops off to sleep sitting up during the day.  I try and keep her stimulated with activities but sometimes I don’t win.
  • Avoid physical restraint – Don’t physically restrain the person. Let them pace where they are safe. A walk outdoors can help reduce restlessness.  I hear Ma get up and listen to where she is going.  I always breathe a sigh of relief when it’s the toilet and I get up and help her.  It’s when she ‘travels’ further that I start to worry and try to find out where she is going.
  • Encourage comforting pastimes – Some people are comforted by soft toy animals, pets, hearing familiar tunes, or an opportunity to follow a favourite pastime. Nightlights or a radio playing softly may help the person sleep.  Ma finds great comfort in the cats.  The old boy, Colonel Gadarffi like to cuddle and smooch.  I sometimes go in to find her hands lying on him as she sleeps.  Ma likes to listen to the radio which is push button, so easy for her to operate.  She can’t work the television so if she wants to watch a program I turn it on and off for her.
  • Minimise noise and lights – Consider the effect of bright lights and noise from television and radios. Are these adding to the confusion and restlessness?  Ma has her bedside light on all night.  I also have a sensor light in the hall and keep the toilet light on all light so she can see where she is if she gets up.  My bedroom door is on the way so she wakes me up when she goes past.
  • Check for objects – clothing hanging on doors, doonas folded over, pillows doubled up, curtains and mirrors, can all be misconstrued.  Ma will think they are people and refuse to enter the room or sleep in the bed as she thinks there is somebody already there.
  • Avoid upsetting activities – Try not to arrange baths or showers for the late afternoon if these are upsetting activities. The exception may be the person who is calmed by a hot bath before bed.  Ma sometimes wants a PTA (which is a bit of a rude acronym for ‘girl bit’, bosom and armpits) rather than a shower.  Usually when she is really tired or she is feeling cold.
  • Consider medication – Some people may need medication. This will need to be discussed with the doctor.  Ma was on regular strong pain killers and Mogadon for many years.  Her confusion has decreased with the reduction of these drugs. We are reluctant to use any medication at this stage.
  • Stuffed toys, pets, familiar music or a favourite activity can help comfort and distract the person.  Ma has taken a liking to documentaries on television.  At the beginning of the week I read through the television guide and highlight what I think she will like.  This makes them easier to find.  I always send her stuffed cat with her when she goes into hospital or respite.  I also play her favourite music in the car on the way to appointments and in the house.  Dragging out the cook books and discussing recipes and what we are going to make goes a long way in distracting her.
  • Daylight saving seems to wreak havoc with Ma’s internal clock.  Because it is still quite dark at 6am and still light at 7pm she gets very confused.  She has told me she doesn’t like these 24 hour days!

A lot of the information I’ve placed on here is from the Alzheimer’s Australia website which has a lot of useful information.

For wonderful support and advice try the Memory People™ on Facebook.  It’s for patients, caregivers, advocates, family members and professionals, seeking comfort and understanding, and receiving support and helpful information.

Lessons learnt in respite care

As I’ve found out in the past, nursing homes are never going to deliver the same care that you do. Unfortunately this is something a caregiver has to accept, as hard as this is.  The reason why there is a couple of year’s gap between Ma’s stays in respite care is because of the bad experience she had the first time.  Hopefully with some preparation and preparedness your loved one’s stay in care will hopefully be uneventful.

These are some of the lessons I learnt and thing to be aware of from Ma’s couple of stays.

  • If you are going away while your loved one is in care make sure you allow a couple of days before going away to visit them and iron out any problems…
  • Make sure your loved one is having regular bowel movements. The staff assured me they logged (no pun intended) Ma’s bowel movements on computer.  Ma didn’t go for six days as they hadn’t written her up for a daily laxative even though I had informed them of her dosage and what she used.  Constipation can lead to confusion in the elderly so it’s important this is under control.
  • Make sure their teeth/dentures are being cleaned. I would usually wash Ma’s dentures when I visited her.  Ma said that the staff had only done this a couple of times (can’t prove or disapprove this because of Ma’s mental state) but she did came home with a sore mouth.
  • If they have an ulcer or any other medical condition that is usually seen to by a community nurse you will have to rely on nursing home staff to see it is dressed as you can’t access two services at the same time. Unfortunately on both occasions she’s been in care, her ulcer has suffered from not being adequately cared for.  Make sure you provide as much detail as possible on its care.  We had to provide her special silver dressing but wasn’t told this until the day she checked in.  Make sure you ask up front whether they require your loved one to supply their own dressings.  Take a photo of the ulcer so you have a comparison of how the wound is doing.
  • Ensure your loved one is being dried properly after their shower, especially under folds of skin. Ma suffers from chaffing under her breasts and stomach.  I asked them to ensure this was done and provided a zinc and castor oil cream to treat any sores.  When I got her home, I found red welts where they hadn’t dried her properly or used the cream.
  • Make sure they are getting their proper medications. Going into care you have to use the doctor the nursing home has.  This doctor may have a different idea on whether your loved one should be on the same medications.  Ma ended up having her pain medication cut by the doctor at the nursing home as he thought he knew better.  She spent a miserable time in pain.  If you don’t think they are getting the right medications ask to see the list and speak to the assigned doctor if you aren’t happy.
  • Make sure you keep copies of all the paperwork including the application form.
  • Make a list of questions you want to ask:
    • What does your loved one need to bring?
    • What does the nursing home provide eg. incontinence pads, dressings for wounds, Panadol (I must admit that I ended up giving Ma her own to take when she wanted as she wasn’t getting pain relief)
    • Can they bring alcohol (Ma so loves a brandy)?
  • Have a look in the room they will be staying in. Are there mirrors that could cause a problem, depending on their mental state?  Ma still wonders how the lady is going she shared the room with…
  • What can you bring to make your loved ones stay a bit more comfortable? Ma had her big numbered clock, pictures of her kitties and her kitty calendar (sigh, I didn’t get a look in) as well as books, magazines, and munchies (the food wasn’t very nice) AND of course her brandy.
  • I’m sure there are plenty of other considerations that I haven’t thought of… feel free to add.

Ma’s respite care diary…

…not the most exciting read in the world.

So, what to write?? I was going to condense all of the following into a shorter version and then I realised that it doesn’t give a full picture.  If you are needing to put your loved one into aged care you need to be on the ball.  I’ve been called a pedantic b*tch in the past because I like my i’s dotted and my t’s crossed… that’s just the way I am.  It’s my mother and I know that nobody will be able to care for her as good as I have but I need to know that somebody is going to care enough to try… So here you go… warts and all.

Day 2 – I see Ma and find out that she’s had a bad night, no surprises there.  Apparently she woke during the night asking for me and of course I wasn’t there.  She tells me that the nurses take too long to respond to her call.  Indeed I take her to the toilet as soon as I get there and a nurse comes in 20 minutes later to see what she wants.  I talk to the nurse again about Ma’s bowel habits and how to dress her leg ulcer.  I take Ma out into the courtyard for a breath of fresh air where she meets a couple of the ‘inmates’ and watches the BBQ lunch being cooked while having a brandy.  I ring that night to see how she has settled and mention her bowels again.  The nurses have a cordless phone they can take to Ma so we can talk but unfortunately the nurses can’t find it…  I never do get to talk to her on the phone during her stay.

Day 3 – Early visit this morning she had breakfast in her room which she didn’t eat.  I’m able to bring her a cappuccino in an insulated mug and she is very very happy.  She was waiting to go to the toilet after pressing her buzzer but all of the staff were busy collecting breakfast trays and didn’t have time to take her so I take her.  The aide comes in and wants to know whether I also want to dress her as well!  Ma has a ‘lady’ in the bathroom that copies everything she does.  If Ma lifts her hand, the lady lifts her hand.  I point out the mirror which Ma says she knows is there.  The mirror on the wardrobe door also shows a lady in the room… and even in her bed!  (Sigh, I knew it would be a problem).  Ma tells me that the lady wears the same clothing that she does AND she also has a stuffed toy kitty just like Ma!  Ma is frustrated and upset because nobody lets her move without assistance and when she presses the buzzer nobody comes.  She still hasn’t had a bowel movement and nobody is giving her the medication that we use to keep them going.  I mention this again to staff and ring again that night and tell the nurse.  The nurse says all the right things to me and I have hope in my heart.  But I should know better.

Day 4 – No poo – I talk to staff again about her bowels….

Day 5 – No poo

Day 6 – No poo – Repeated discussions I have with nursing staff fall on deaf ears although they respond nicely to my concerns…

Day 7 – Ma has poo but not the kind to get her excited… I text my sisters and boyfriend to tell them of the ‘arrival’… we have all been waiting for.  I ask to speak to a nurse…. Again.  Ma’s leg ulcer is leaking and I’m worried about her bowels and the lack of ‘movement’.  You talk to them and they agree with what you’re saying and then do their own thing.  Before Ma went into respite she was achieving a bowel movement every 1 to 2 days.  The nurse tells me that Ma wasn’t written up for a laxative every day… she acknowledges that my notes told them about the need for every day but still they didn’t do anything.  She tells me that they are now going to give her Movicol every day.  Not what I’ve been giving her or what I’ve supplied or what has been written up on her medication sheet attached to her doctor’s report.  I also ask the nurse about Ma’s ulcer and she informs me that they’ve changed the days the leg is being dressed on… and that they’ve ordered the stuff to do Ma’s leg with.  Deep breaths…

She speaks to Ma like a child saying in front of me ‘she really enjoys her meals, don’t you?’ Ma looks to one side and doesn’t respond to her.  She has already told me that there has only been a couple of good meals and the rest is inedible.  Sometimes the whole table doesn’t eat the food and they complain.  I can’t see that they get much if any fibre in their diet.  Ma says its tinned fruit with artificial cream. Ma doesn’t know anybody there and doesn’t feel like she ‘clicks’ with anybody that she’s met.  I go to take her outside and to get her hair cut but she doesn’t want to move in case my brother visits…. He doesn’t turn up.

Day 8 – No poo. I arrive to take Ma for her hair cut and find her still sitting at the lunch table along with the other ladies.  They are all staring at each other with no conversation.  I have brought Ma ice cream which she devours back in her room and then has a brandy.  She asks me every 5 minutes whether it’s time to go for her haircut.  My brother arrives just as we are leaving… great.  I’m sure we won’t see him again.  Ma is upset but leaves to get her hair done.

Day 9 – No poo.  I could tell them that using the Movicol doesn’t work but what’s the point when they don’t listen?  Walked in to be handed a statement for her stay.  $1,627.24 for 34 days… she is only there for 19 days.  Deep breaths times two… When I ask administration they tell me that they always take the money out in advance and refund it later… Really? I wasn’t told this… of course.  She tells me that she can’t see the sense in it and that many people complain… really? SIGH, I just walk away.

Ma tells me she has spent most of the night in her chair as her back was hurt getting out of bed.  The night staff apparently found her sleeping there during the night and moved her into her bed.  Not sure of whether this is true but she is sitting in the chair when I arrive and a bit confused.  Apparently somebody turned a bus over in front of the facility.  She asks me to see whether the ‘old lady’ is still there.  The ‘old lady’ has been absent since I moved the opaque door forward of the mirrored door.

Day 10 – No poo.  I decide to give Ma her own ‘movement’ medicine – two lower bowel stimulants and one Coloxyl with senna.  Ma’s leg ulcer is leaking and is looking very messy. SIGH

Day 11 – We have poo!  Arrived to find Ma has had a movement and is sitting on bed looking very pleased with herself.  She said she couldn’t get help so cleaned herself up mostly before help arrived.  There is poo all over toilet and basin and poo on her quilt.  How anybody could not see it and walk away is beyond me.  I’m very very angry.  I clean the bathroom and ask the aide where I can get another quilt for Ma’s bed.  I’m given a bag to dispose of the other quilt and after requesting a quilt twice from two different staff members, I leave.  My brother-in-law succeeds in getting her a quilt when he visits in the evening.

Ma tells me that she had soup for dinner the night before with no bread and she asks for some as she is still hungry.  She tells me she doesn’t like it there at all and that some of the staff get angry with her when she needs to go to the toilet during the night.  I can get up with Ma three and four times a night.  She can’t help it, how dare they get angry with her because she needs to go to the toilet.  She had the same problem in hospital.

Day 12 – I arrive to find her trying to get her heavy dressing gown off as she’s too hot.  She has been pressing the buzzer but nobody has arrived.  I take it off and dress her for the day.  The aide arrives and gets very defensive explaining herself.  Ma tells me she’s pooed again as she took more stimulants last night.  Nurse came to ask about Ma’s bowel movements and I had to bite my tongue as they reckon the Movicol is working!

I notice her dressing is leaking and her leg is very swollen.  The aide comes to take Ma to lunch at 11:45 and says she will be back in 5 minutes, 25 minutes later and we are still waiting and press the buzzer for somebody to take her to dinner.  When the aide finally arrives I tell them about Ma’s leg.  I check later and find that the dressing has been re-done… my sister was informed as soon as she walked through the door… oops I’ve seemed to have made my presence felt!

Day 13 – I’m going to work for five days this week!!!  It’s the first time since I can’t remember when.  I don’t shut up all day.  It’s like I’ve been let out of a cage… there is some normalcy which I haven’t experienced for a long time.  I don’t visit today… I feel incredibly guilty but my nephew is visiting along with my sister…. I decide I need to stay away.  It doesn’t stop me sitting and worrying.

Day 14 – I visit after work.  Ma is sitting on the bed half asleep slumped to one side.  She tells me what a horrible time she is having.  She says she is ‘leaking’ more than usual and that she’s very sore and that her ulcer has been throbbing.  I notice that her leg is looking quite swollen although not red.  She tells me again how horrible the food is and that there were sirens going all night and she’s being walking the corridors.  The tv show, ‘The Farmer Wants a Wife’ apparently turned into guns and shooting…. So she doesn’t what to ever watch it again.  I notice she hasn’t got her slippers on (the floors are very slippery… go figure in a new aged care facility) and she tells me that her feet have been sore.  As I go to put her slippers on I see she has a blister on her toe and ask if she can have a band aid.  The aide tells me she will tell the nurse… Ma tells me that the nursing staff keep asking her when she will be leaving…