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?

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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…

A respite from Ma?

My sister booked Ma into respite care a number of months ago (the waiting lists are several months long).  The way I’ve been lately, I knew I needed a break.  Not only for my sake but for Ma’s also.  As the date approached my stomach started tying up in knots.  Who was going to take her to the toilet the 4 and 5 times a night she sometimes goes?  Who was going to make sure she emptied her bowels regularly and wiped her bottom when she did so?  We have finally found a regime where she goes every one to two days.  Which has helped her confusion and has made her feel better.

I got her doctor to fill out the medical paperwork to which I added my notes as well as her medications list and medical history.  I also created another list of information containing problems that Ma encountered the last time she was in respite care several years ago.  These included her bowels and what I have done to keep them working; what triggers increases in her confusion and hallucinations; instructions on drying under her apron and breasts and the cream to use (which I supplied); a request to keep her walking rather than taking her everywhere in her wheelchair so that she keeps mobile (learnt that lesson from her last stay in respite); and instructions on how to care for her ulcer including the need to bag her leg rather than scrubbing it under the shower (yes, they did that last time she was in care which resulted in infection and the need for hospitalisation).

I was given the medical form to fill out and had to ring to ask who had to fill it out was it was titled Medical Officer’s Report; it had to be filled out by her doctor.  Doctors are busy, overworked people, I went through her doctor’s report and added my information to it plus her list of medications.  All of Ma’s medical file is kept at the house as the doctor visits her there.

Every time I talked to staff or the Manager at the facility they added information or told me of something else that had to be done.  After ringing the Manager about the Medical Officer’s Report I was told I had to pick a doctor off a list for Ma which I did.  Next time I rang to ask a question I was told that I needed to contact the doctor and ask them to be Ma’s doctor while she was in care as she couldn’t have her own doctor.  The first ones I rung said they weren’t taking any new patients (why are they on the list I asked myself?).  Others didn’t ring back.  I finally got a doctor and emailed Ma’s medical information, only to be informed when I rang that they couldn’t print it and wanted it faxed.  After faxing the information they told me they already had that information but wanted a different form which the lady filled in over the phone.  The evening before Ma was due to go in I opened an email from the Manager asking me whether I had organised with the doctor to admit Ma on her arrival… it was at this point I gave up as I knew the next day was a public holiday and I wasn’t going to be able to ring the ‘new’ doctor.

The day after the public holiday I rang the facility, after organising the doctor, only to be told I was missing another four forms that needed to be filled in.  There was no sign of the form I filled in over the phone.  At this point I broke down as I’d had enough.  Poor communication, nobody rings you back and it’s all been my ringing them asking for information.  The lady I spoke to turned out to have some empathy and was very nice to me.  So after spending 40 minutes filling out paperwork which involved questions about Ma’s children, growing up, marriage, work etc we were ready to go.

Day 1 – On arrival we are taken to Ma’s room which has a lovely outlook on a garden.  The room is very sparse and reminds me of a hospital.  There is a large mirrored wardrobe door opposite Ma’s bed which worries me knowing Ma’s problems with ‘visitors’.  Different people come in to introduce themselves… the registered nurse, aide, social activities person (SAP).  I talk to the nurse about Ma’s bowels; making sure she is dry under her sagging bits; and not showering her ulcerated leg.  I am informed I need to supply all of Ma’s dressings including pads, dressing packs etc.  Nice to be told now!  I also ask about Ma being allowed her brandy of a night time.  The SAP informs me that residents have a big fridge where their alcohol is kept and can have two drinks a day.  They also have happy hour on a Friday.  She says she will put Ma’s stuff in the fridge… it’s still in her room on day 6 of her stay with the first bottle being empty.  The social planner we were promised by her has also not made an appearance.  Ma is in high care so she has a buzzer for a nurse so she can get help to the toilet etc.  I leave her for her first night, worried and upset.

Lessons learnt

  • If you are going to put your loved one in respite care for a break make sure you document all of their health history backed up by their doctor if you can.
  • If you are going away allow a couple of extra days so that you can see how they settle and sort out any problems such as their medications and any health issues that need careful treatment. They say they are listening but they aren’t.  This makes it very hard to trust your loved one to their care.  Take the time to make sure things are being done properly.
  • Try to get instructions in writing. Make a list of questions you want to ask.  I now know the things to look out for but I didn’t before I placed her in respite.
  • Talk to your loved one and make a list of the most important things that need to be considered for their sake as well as yours.
  • Use their time in respite to assess the facility in case you need to consider permanent care. How do the staff treat the residents?  Are the staff attentive to questions from residents or are they palmed off and talked down to.  Do the staff listen to your concerns?
  • Find out what the facility does and doesn’t supply.

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.

Famous people with dementia

Anybody can get dementia.  It doesn’t differentiate between colour, religion, nationality, or financial status.

Robin Williams was a most beloved actor and comic whose talents have always left me in awe.  When it was announced that he had committed suicide back in August 2014 I was shocked and sad that he had been driven by his demons to end his life.

His wife has since revealed that Robin had Lewy Body Dementia, the same condition I think Ma has.  The Guardian wrote a good article about this of which an excerpt follows.

“Taken all together, a severe case of dementia with Lewy Bodies means you potentially can’t think, can’t sleep, can’t stay awake, can’t trust what you see, can’t move, can’t understand what’s going on and can’t be happy.  Judging by Susan William’s (Robin’s wife) comments about the speed of progression of his symptoms, it sounds like Robin Williams had a severe case of dementia with Lewy Bodies.”

How horrible to suffer so and not know what’s going on.

Robin is not the only famous person who has suffered from dementia.

This year it was annoucned that Helen Reddy, aged 73, had been diagnosed with dementia and is now living in a Los Angeles nursing facility. Helen was the first Australian to win a Grammy in 1973 for her inconic song, ‘I am Woman’.

Former British Prime Ministers’ Harold Wilson (Alzheimers); Winston Churchill (multi-infarct dementia); and Margaret Thatcher (stroke induced dementia).

Singers’ Malcom Young of ACDC fame (dementia); Glen Campbell, County and Western singer famous for hits such as Rhinestone Cowboy is in the later stage of Alzheimers;  Perry Como, singer and entertainer (Alzheimers).

In 1983, US President and former actor, Ronald Reagan designated November as National Alzheimer’s Awareness Month.  Six years after the end of his presidency he announced that he had Alzheimer’s disease and wanted to raise public awareness of the disease.

US actor Charlton Heston, who played Moses in ‘The Ten Commandments’ also had Alzheimer’s disease.  He also announced publicly that he had Alzheimer’s to raise awareness.

Rita Hayworth, a US film star, famous in the 1940s, became the ‘face of Alzheimer’s disease’ during the 1980s which went a long way to destigmatise dementia.

Other famous US actors affected by dementia include Peter Falk, who was famous for playing Columbo in the US TV series (Alzheimers). James Stewart, one of my favourite actors, best known for his movie roles in ‘Mr Smith Goes to Washington’ and ‘It’s a Wonderful Life’ (Alzheimers plus another illness).  Eddie Albert of ‘Green Acres’ fame (Alzheimers); Charles Bronson (my 5th grade teacher was wildly in love with him), who always played the tough guy (Alzheimers);  Jack Lord of Hawaii Five-O fame (Alzheimer) and one of my favourite Star Trek characters, James Doohan (Alzheimers and Parkinson’s disease).

Terry Pratchett, author of the Discworld series, died of Alzhiemers in March 2015. He made a substantial donation to the Alzhiemer’s Research Trust and filmed a television program on his life with Alzhiemers.

Sugar Ray Robinson, famous US boxer (Alzheimers); E B White, author of ‘Charlotte’s Web’ (Alzheimers); Casey Kasem, US radio personality, growing up I always listened him on radio station 2SM (Lewy Body Dementia); and Rosa Parks, known as ‘the Mother of the Freedom Movement’, after being arrested for refusing to give up her seat on the bus and beginning the civil rights movement (Alzheimers).

People known to us Aussies include Don Lane, Australian TV personality) (Alzheimers); Hazel Hawke, wife of former Australian prime minister Bob Hawke (Alzheimers); and Neville Wran, Premier of NSW (Lewy Body Dementia).

And the list goes on… because dementia doesn’t discriminate.

Quality of life vs Quantity of life

Which would you choose?

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

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

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

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

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

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

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

The ‘D’ word or the disease that must not be named…

So, the social worker from the hospital leaves a message on my home landline at 8am… doesn’t try my mobile or work phone.  By the time I come home it’s half 6.  Sigh, really?  Thursday morning I ring her and she tells me that she would like to meet with me to discuss Ma’s care.  I mention to her that no doctor has yet given me a diagnosis or discussed Ma’s health.

Thursday night my sister and I meet with the social worker who gives me two options.  The first is to transfer Ma straight into care and the other is to take her home.  If I take the second option it may be harder to access care.  If Ma refuses to go I can enact my ‘enduring guardianship’.  If she still refuses then they can appoint the Public Trustee.  Really, you think I would let it get to that?  If she felt that strongly I wouldn’t push her, I wouldn’t do that to her… until her mental state was such that there was no choice.  At the moment, she is still ‘with me’ although she drifts in and out.  She’s now talking about her brother Jim (gone for a few years).

The only decision I can make is to bring her home while we apply for full time care.  What other decision is there?  She’s my mother and I love her very much. The doctor visits me and still doesn’t come out with a diagnosis.  He only tells me that all her physical tests came back clear and they can’t reverse what she has.  He still doesn’t say the ‘d’ word.  Nobody says it… why?

Thank goodness for my government job.  I’ve been there over 20 years and Workforce doesn’t see a problem in converting my sick leave into carer’s leave.  I just need a letter from the doctor.  My manager is happy for me to work 1-2 days a week, I just need to put forward a proposal.  At this point I’m feeling blessed as well as ‘what the heck I’m I doing?!’

The help that the social worker has organised rings me the next day to tell me they can’t help.  I have 4 hours in-house respite a week over 4 days and 1 1/2 hours housework a fortnight. I can’t leave Ma for more than a couple of hours at a time.  We are still on the waiting list for high level care and listed as urgent… we have been since May.  Looks like I’m on my own and my 1-2 days a week work are going down the toilet.

Friday I go to pick Ma up at 10, as instructed.  No paperwork is ready and they are all in conference….Ma’s missing dressing gown turns up.  Turns out she had a horrendous bowel accident after they decided to ‘clean her out’, as she had a bowel impaction, and soiled her night attire… They returned it to me after I made enquiries with no explanation.  Let me tell you that took some disinfectant and cleaning!

As we keep waiting… Herman, a wanderer with dementia pops by for a visit.  The nurse tries to make him leave. He tries to talk to her but every time he starts talking she turns away or gets distracted.  You can see by the look on his face that he knows she isn’t listening.  The frustration is sad to see. He even moves to one side in an endeavour to capture her full attention.  Still she looks away; she doesn’t see him.

After a two hour wait we are sent on our way with papers and a script.  I question the script and am told not to worry about it… SIGH.  Then why write it and why give it to me?  What was the reasoning behind it?

As we are driving home I have to drive slower as Ma gets disorientated with the driving.  She tell me it feels good to feel the sun on her face and she’s glad to be alive.

We are going home.