Guilt and Vigilance

It’s been a long time since I’ve written.  Every time I thought about writing I felt sick. Why? I don’t really know. Maybe I just poured too much of myself out in writing this blog and maybe because I just didn’t know how to express myself anymore.  My feelings were very raw like a scab you continually pick.

I put Ma into care on 4 July 2016.  It was the hardest thing I’ve ever had to do.  I’m now the decision maker of her life and death needs.  It’s a hell of a responsibility and one I wasn’t prepared for…. but then again, how does one prepare for that?  The legals, the financials, the need for constant vigilance as well as the need for constant vigilance (yep, I repeated myself). Ma has had a number of issues since she went into care. If I wasn’t vigilant she’d slip through the cracks.  Pressure sores, pneumonia, flu, sores from urine burns, infections, skin tears, not eating or drinking… the list goes on.

I’m there every day and sometimes twice a day.  I can’t afford not to be.  The facility is supposed to be one of the better ones.  I’ve been lucky that the Manager is very response when I raise issues and Ma’s doctor is wonderful… I’m sure they hate the sight of me, but I don’t have to be liked, I just need Ma taken care of.  I pity those that don’t have an advocate or can’t speak for themselves.

I always laugh when people say to me that I must have much more time now that Ma’s in care.  In fact I now have less.  Yes, I now have freedom to go out for more than an hour and I get to sleep all night but my days are longer now.  I cook up batches of food on the weekend so I can spend more time with Ma.

I see Ma slipping away.  Every day I feel regret for having ‘given up’ and placed her in care. Every time I find a problem, like a pressure sore, I feel regret.  Every time, Ma tells me she doesn’t like it there, or somebody didn’t treat her right, I feel regret.  I look back and wonder how I could have been so weak as to have given up.  It’s now hard to remember how I struggled.  All I feel now is guilt as she slips away before my eyes.  Difficulty swallowing, not eating or drinking and sitting in her chair 24 hours a day.  I never know what I’ll find when I visit.  Sometimes I’ll tie myself in knots contemplating what she’s going to be like when I get there.  I dream of other solutions and ways of bringing her home… although home ceased to be home to her before she went into care.

Would she have been like she is now if I hadn’t placed her in care?  I don’t suppose I’ll ever know.  All I can do is live with my decision and be vigilant.

 

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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!

 

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.

The lady in the mirror

The day before Ma is due to go home I arrive to find Ma sitting in a chair with a towel on her leg, with the ulcer, and an ice pack on the floor beside it.  She tells me that an aide has ‘bumped’ her leg on the wheelchair foot plate getting her out of the chair.  There are big bruises and her leg is swollen.  I try and find somebody to tell me what has happened and what the damage is.  They have another story, saying Ma has knocked her leg on her wheely walker.  They are going to dress her leg but after waiting for a half hour they decide to take her to lunch instead.  I don’t get to see her leg ‘undressed’ before I leave.

Day 19 – Escape at last.  Arrived at the nursing home to find Ma sitting next to the mirror with piles of her stuff everywhere.  She had tried to pack up ready to go home.  I brought her a coffee to distract her which she sat and enjoyed while I packed everything up.  Now and again she would nod to the ‘lady in the mirror’ and talk gently to her.  She told me she had become good friends with the ‘lady’ and that she’d miss her when she went home.  She mentioned how the ‘lady’ would wear everything that Ma wore and even had the same books Ma had!  When I asked Ma if the lady had purple hair like Ma did, Ma said she did not… Ma bid farewell to her new ‘lady friend’ smiling and waving as we took her out.

As we had no instructions on signing anything or doing anything besides taking Ma, we went to leave.  We were stopped at the door and were told we had to pick up Ma’s medications.  So we waited. The nurse came to say goodbye and I asked again about Ma’s ulcer and how her leg was after her mishap the day before.  He told me that her ulcer looked better and that her leg looked good. We hadn’t been home for an hour when the nursing home rang to ask that we return as they had forgotten to give Ma a box of medication that had been left behind… SIGH

Ma made it up the two flights of stairs better than I’d hoped and went straight in to say hello to the cats.  She was so happy to be home… I think only because of the cats.  She’d often tell me how much she missed them.  She has a small toy cat and photos of the kitties which she had on her bedside table while she was in care.  That night I made sure she got back on her bowel regime.  She was very very tired.

Unfortunately we were up and down more times than a bride’s nightie with her bladder.  I was a wreck come morning being out of practice.  Her bowels also decided to co-operate to great fanfare unfortunately soiling her pants in the process.  The next night was much better even though we had a midnight bowel movement.  I think she’s making up for lost time! Thank goodness we weren’t up as much as the bowel pressure on her bladder had been lessened.

The community nurse came to change her ulcer dressing and I was absolutely horrified and angered to find that she had a new ulcer and that the other ulcer had deteriorated.  And yet nobody saw fit to tell me even though I specifically asked.  They had even taken photos when she’d arrived so it’s not as if they didn’t have anything to compare it with.  How can they not tell you there is another new ulcer? AND that the other ulcer is so much worse?

I look to the future and I am afraid.

Ma’s name is down at the nursing home just a couple of blocks from here.  I am not working full-time but am using carer’s leave, for which I will be forever grateful for, while we wait for a vacancy.  When Ma was in respite care I tried to make sure that she would be looked after.  I wasn’t happy with her care.  Even though I wrote notes to ensure her special health requirements were met AND even though I talked to the staff including the registered nurse, she came out with bruises on her legs; welts under her breasts and ‘apron’ where they didn’t dry her properly and put cream on; constipated; and with new and deteriorated leg ulcers.  Everyone I talked to at the home said they were listening but they weren’t.  I only saw the aide put the brakes on Ma’s wheelchair once when they were putting her into it.  Her legs got bruised because they would push her chair into the table but not check where her legs were when they pushed her in.

So what now?  I rang the nursing home she wants to go into and where she has been on a waiting list since September.  The tell me to ring back every two weeks because when you don’t keep ringing, you drop down the list (thanks so much for telling me this!).  I’m now petrified about placing her into permanent care.  If a reputable nursing home can do that much damage in three weeks how am I supposed to trust that she will be well looked after in the nursing home of her choice?  This is the home where she also had problems.  A few years ago when she spent five days in their ‘care’ she ended up in hospital with an infected leg ulcer.  This was the first time we had tried respite care and I’d been too scared to try it since… until this time.

So I’m left with more questions than answers.  Do I keep on caring for her until my leave is exhausted and losing my sanity or do I do the ‘selfish’ thing and place her in care; fingers crossed?  Will the nursing home she has chosen be any better… or worse?

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…

The gradual disappearance of Ma

Today I placed Ma in respite care for three weeks.  I walked out of the facility bawling my eyes out, feeling like a failure and that I’d let Ma down.

I no longer like the person I’ve become.  I don’t recognise myself.  I’m a cranky, horrible person with a short fuse and I can’t seem to stop being like that.  It’s like I’m standing outside of myself watching myself having a breakdown while telling myself to stop… but I don’t.  I’m mean to Ma and have lost the patience I once had.

I look over the last twelve months and look at the parts of my Ma that I have lost.  The thing about Ma’s ‘diminishment’ is that it is a gradual insidious thing that you don’t really notice until you look back.  When I look back and compare the then with the now it breaks my heart.

Ma used to love reading Mills and Boons.  The house is choc a block full of them.  Over the years I’ve picked them up from fetes and bought her new ones each month.  She collected books by her favourite authors.  Now she no longer reads them.  Not even her favourites.  She now reads and re-reads and re-reads her complete collection of Kerry Greenwood books.  She fixates on them, counts them, hides them and writes in them, then tells you it’s a new book she hasn’t read before.  I’m not sure how much she even takes in.  She will sit for hours pouring over the pages of her books.

Ma can no longer turn the stove on or make herself a hot drink.  She can’t prepare herself food.  The other morning I found her eating chocolate because she had no other food and didn’t know the way to the kitchen (I prepare all her food and mostly serve it in her bedroom). She still insists on telling me she doesn’t like chocolate…

Her tastes have changed… for the last few years she has told me she doesn’t like spaghetti (her recipe) so I’ve only made it for myself.  In the last few months spaghetti and pizza are two of her favourites.  Dessert is still top of her list… that hasn’t changed!

We have gone from small ‘drip tray’ incontinence pads to the heavy duty pull-up pants that she wears day and night.  I look back at her transition into the pull-up pants and remember how frustrating it was finding the right product.

Bowel accidents are not uncommon.  I’m now so anal about her bowels (sorry) it must drive her to distraction.  It’s a fine line getting it right.  Anything over two days and her confusion and hallucinations start to increase and her stomach distends to epic proportions.  Her bowel also starts pressing on her bladder which means we’re up 4 times or more a night and she leaks like a sieve.

We now live with Ma’s ‘friends’.  I made Lammos (Lammingtons) for Australia Day and put her in charge of coconut covering.  When she came out for dinner she noticed that none of the Lammos had been eaten and said, “Didn’t anybody like my Lammingtons?”  As there is only the two of us in the house most of the time it’s always interesting when ‘the others’ make an appearance… or won’t eat my Lammos!

Her strength and walking has deteriorated so that she barely shuffles along on her walker. I now allow 20 minutes to get her out the door and down the stairs into the car.  She is so hunched over it’s like she is bent double.  Most days she doesn’t get dressed preferring to stay in her nightdress and dressing gown.

She finds it difficult to make decisions over what to wear or eat.  She just lets problems slide.  It’s like she’s in a bubble where nothing can penetrate.

Ma used to be able to find her way around the house.  Her bedroom was, her bedroom.  It’s now somebody else’s bedroom.  The house doesn’t belong to her, nor does her clock radio.  The house she has lived in for over 50 years is the house she has only been in for a few weeks.  The town is unfamiliar and her sense of direction has disappeared.

People are starting to slip from her memory, especially those she doesn’t see very often.  It’s sad having to explain who her granddaughters are.  Memories are eroding and being replaced with different ones.  Her new reality of being nearly drowned and burnt during her last stay in hospital in September stays with her even now.

I think part of my anger is over the loss for the Ma I once had.  I’m losing her slowly but surely.  Our relationship has been changed forever.  I hate being strong when all I want is my Ma to make everything alright.