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.

 

 

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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…….

The Ma I used to know

As Mother’s Day approaches I’m reminded of what I’ve lost, and found in my own Ma.  Looking back over the years I look at what we’ve shared together. We were like two peas in a pod.  We loved to go walking together until her arthritis won and walking became too difficult and painful.  She would teach me the names of the different flowers that crossed our paths and from this I developed a love for gardening.

Growing up I wasn’t interested in cooking.  I didn’t bother as the rest of the family were good cooks so I didn’t consider it necessary.  When the family get togethers stopped, as people went their separate ways and got caught up in their own families, I started to take an interest.  Dad, who was a baker by trade, and I would make Easter buns from scratch every year.  I haven’t done this since he passed away.

As my parents aged I took over more and more of the cooking and started collecting cookbooks and hoarding dozens of pull outs from magazines.  Ma and I would pour over the recipe books discussing the merits of recipes and what we were going to cook.

Recipe books are still something we share together.  Ma can’t operate the stove and can no longer remember where any of the ingredients are kept but she can still sit at the table and help me cut things up.  She can roll a mean Lamington in the coconut and help me with sausage rolls.  We taste test and argue about what needs to be added.  Her secret ingredient is Sweet Chilli Sauce for anything that just doesn’t taste like it should. It works!  She has trouble knowing how to cut some things up and can no longer remember her tried and true recipes.  I’m so glad I took it on myself to write my favourites out a long time ago, some of which I’ve shared on here.

We were cutting up onion and garlic the other day and I used the flat of the knife to crush the garlic so the skin would flake off, this was something she taught me many years ago.  She told me she’d have to remember that trick for next time.  That’s when you feel sad, sad for what she’s lost.

My Ma is a wonderful cook. Over the years I think she has managed to create a jam, pickle or relish out of any ingredient you care to name.  The big saucepan was always bubbling away on the stove emitting odours of vinegar or the sweetness of sugar.  Those jars were sold to raise money for various local charities.  I now make Ma’s famous Tomato Relish and last year potted up a few jars of Strawberry, Ma’s favourites.

The Christmas pudding, cake and mince tarts are no longer part of her repertoire, I have taken up the mantle.  Occasions like Christmas and Easter create a fixation and confusion in her.  For weeks beforehand she wants to cook the Good Friday fish or buy the Christmas ham.  It prays on her mind, nibbling away at her psyche until finally I give up.

The Mother’s Day and birthday cards I have given her over the years were from a daughter paying homage to a mother, supporter and best friend.  Every card I used to give her would reduce her to tears.  It was always my mission to find the card I knew would make her cry. Over the last couple of years, I’ve struggled to find a card to express our changed relationship.  I can’t bring myself to buy the cards of old.  Don’t get me wrong, I still love my Ma to the moon and back, it’s just that things have now changed, she is different from the Ma I used to know

I’m now more like the mother than the daughter.  I now take responsibility for her health and well being.  I now take her everywhere she needs to go.  I now spend nearly every waking hour with her.  So yes, I don’t feel like I can give those cards any more.  I’m sad for the mother I’ve lost.

But I’ve also found another Ma.  Over the years whenever I’ve asked Ma if she wanted to go out, 9 times out of 10 she would say no.  Now Ma will nearly always go out with me.  She is more outgoing.  She asked me for purple highlights (we’re talking bright purple) before Christmas and has been rocking them ever since.

My Ma has never been very demonstrative.  She hugged me the other day of her own accord for the first time I can remember.  I was blown away.  She now uses a term of endearment to address me… she has never done that.  (Not sure whether it’s because she can’t remember my name or?)  Anyway I’m basking in the glow.

While I’ve lost the Ma I knew, the new Ma is just as loveable albeit different.  So this year the Mother’s Day card will be different from previous years and as always I will try and pick the card that makes her cry.

During the month of April I am running/walking to raise funds for Alzheimer’s Australia. If you would to support me please go to my fundraising page.

Memories of dementia

During the past 12 months I’ve learnt more about dementia than I ever wanted to.  Ma’s deterioration has led me to research and learn as much about this syndrome as possible.  After being seen by several Geriatricians, Ma is still undiagnosed.  Yet, her doctor and I remain convinced she has dementia, probably Lewy Bodies.  When I think back through my childhood I now realise the friends of Dad’s that were ‘acting funny’ had dementia.

As a kid growing up with older parents, Ma was 40 when she had me and Dad was 50, I was always worried my parents would die earlier than other ‘normal’ kids (ie kids with younger parents).  My parents like to tell the story of the day they found me crying my heart out in my room.  When they asked me why I was crying, I responded, “you’re going to die soon”.  Such was my worry of having older parents.

My parents were very active socially, Dad belonging to Rotary and Ma to Innerwheel.  They were always entertaining or going out to different functions.  In this way my sister and I were exposed to a variety of people from a very early age.

There was a man that was fixated on Dad and would visit him at every opportunity, presenting him with various gifts.  Dad’s best friend, who was a very highly strung man, one day visited and was convinced that he’d just disembarked from a warship and that Ma and I were there to greet him.

I will always remember a good friend of Dad and Ma’s visiting after she’d been diagnosed with Alzheimer’s.  She was my first real introduction to the disease.  She sat in a chair and tried to carry out a conversation.  She would become stuck for words and then shake her head and say, ‘no, no’.  It broke your heart to realise that she knew what was happening to her.  She knew that she would soon forget who she was.

It was about this time that the media reported a connection between Alzheimer’s and aluminium saucepans.  Being quite young, I was terrified I was going to catch it, as we had aluminium saucepans!  It was probably not long after that that it was reported that white bread caused cancer…

I look back at my Dad in his later years and I know now that he had dementia.  Most probably Alzheimer’s (the most common type of dementia).  He would ask the same question over and over.  He would sit and fiddle and dismantle transistor radios until they wouldn’t work.  He could no longer write the newsletter for his Probus Club and he could no longer give an ‘off the cuff’ speech at the drop of a hat (he found this out the hard way when he got up to give a speech and became very muddled).  His driving was appalling and he couldn’t pass the test to get his licence renewed.  That broke him.  They were his legs and they were taken away from him.

I remember being impatient with him for his constant questions. I remember Ma yelling at him for leaving soiled pants in various places in the bedroom as well as other things. I remember helping him clean up after soiling himself as he didn’t want to tell Ma. I only told her after he’d passed away.  I showered him in his undies when he was too impatient to wait for the carer to come and shower him. Things that would have appalled him if he was himself.  My aunt and uncle wanted Ma to place him into care, Ma refused to do so.

I took him to the ballet as he once took me.  He became more affectionate and spoke of how proud he was of me.  The last Christmas he had with us he became very upset with the noise and confusion a big family Christmas can bring.  Ma promised him that that would be the last Christmas and he was happy.  He had bought Ma and I perfume but had addressed both gift tags to Ma.  It’s funny that throughout all of these signs, I just remained oblivious in my own little world.  He dropped dead suddenly from a heart attack on 5 January.  Looking back, I’m glad he went that way.  We were spared the agony of losing him twice and of making decisions on his care.

My awareness has only awoken due to Ma’s deteriorating condition.  The search for answers to Ma’s behaviours has led me to become more aware.  As I’ve learnt more about dementia I’ve wanted to raise awareness.  I want more support for sufferers and their carers.  I want people to stop turning their back on people who suffer with dementia.  And more than anything else, I want a cure for dementia.

People don’t want to talk about dementia.  It’s too scary.  Fundraising for different cancers achieve more funds than dementia yet dementia numbers will increase as the population ages (the risk of dementia increases over the age of 65). Dementia is the second largest killer of Australians, surely that’s enough reason to find a cure.

I am currently raising funds for Alzheimer’s Australia for the month of April who provide support services, education and information about dementia.  If you would like to support me, go to: Memory Walk.

 

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!

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?