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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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.

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!

 

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 waffles 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.

Life of a carer

Time for a pity party!

You know when you’re just tired? Just tired to the bone so that you can’t think straight and your motivation just dries up? You sit there knowing there are things to do and yet you don’t do them.  You just want to curl up in a corner and not exist any more… well at least not for a few hours or days or?  The responsibility of somebody else’s life weighs heavy. Mothers and fathers will know this.

Life beckons… I used to travel, I used to be able to go out to dinner, I used to be able to go out for a few hours without worrying, I used to go to work 5 days a week.  When you become a carer these things disappear.  Your life revolves around bowel movements, dressing, showering, medications, incontinence, doctors appointments, wound dressing, mental stimulation, reassurance, and trying to grant their every wish and desire.

You love them so much it hurts yet resentment crawls in.  My life has disappeared and I’ve now become a satellite which revolves around my Ma making sure her every need is met. But I’m burning out.  I know this.  Every time I lose my cool because of something; I know this. I never saw myself as a bad person in the past but those days are gone.  Every time I yell at her, I really yell at the disease called dementia.  The thing that will ultimately take her away from me if some other health issue doesn’t take her away first.  Every day I see small changes which take her further away from me.

For the last few days she has been fixated on scones and talks about making them.  She then asks questions about the stove and how long it take to heat up etc. Today scones called too loudly to her and she went into the kitchen with the purpose of making some. Knowing she can’t turn the oven on, has forgotten where all of the utensils and ingredients are kept AND that she’s never been able to make a decent scone, I go into the kitchen with her and make them while she looks through a recipe book.  I didn’t know what else to do.  I didn’t want her to realise she didn’t know where anything was and how to turn the stove on.  So I just did it.  What else do you do?

Of all the changes, I think the spatial displacement thing is the worst.  Night and day don’t exist in her world as we know it.  At 2pm in the afternoon she is saying it’s night time and that she needs to get ready for bed.  She comments on how dark the night is.  I can’t convince her otherwise.  The other day she left her bedroom with her book on ‘Cyril’ (her wheeled walker) and I asked her where she was going.  She told me to her room and turned around and went back in to her bedroom.  She will lose her bedroom and the toilet. Yet find them other times.  If I take her out driving locally she will not remember many places even though she has lived in the area for over 50 years.

I can cope well with the physical stuff but the mental stuff is a real challenges.  One that I’m not coping with well.  Carer’s of dementia sufferer’s have a set of ‘rules’ that I read periodically.  I think I break most of them every day.  “don’t say they’re wrong”, “don’t say remember” blah, blah, blah.  I know these rules are supposed to make our life easier but unfortunately they just make me feel more guilty when I break them!

Caring for somebody with dementia is a day to day thing.  It’s like riding a roller coaster. On some days or hours, you may have sane moments and others… well and that’s just me!

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…

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.