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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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.

Quality of life vs Quantity of life

Which would you choose?

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

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

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

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

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

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

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

The reasons why I think Ma has Lewy Body Dementia

In the beginning I was convinced Ma had delirium from the three anaesthetics she’d had within 5 months.  The geriatrician said that Ma didn’t have dementia, just delirium.  She improved but had recurring delusional episodes where she was a danger to herself. She didn’t know where her bedroom or the toilet were, she kept asking to go home; she tried taking her wheely walker down the stairs. This continued until I was forced to place her into the hospital’s medical assessment unit in order to get to the bottom of what was really wrong with her.

So after a battery of tests and 10 days in hospital, visits by various geriatricians, there is still no diagnosis for Ma’s ‘issues’.  Dementia doesn’t seem to come easily off the tongue of doctors or geriatricians… it’s inferred but never named.  I even had one geriatrician tell me that I needed a formal diagnosis in order to access more services, but even he couldn’t diagnose Ma.  Another told me he had never seen anything like Ma’s symptoms and that he just didn’t know.  I don’t profess by any means to be any type of expert on dementia or on medical matters.  I’m just a daughter who is searching for answers to explain what is happening to my Ma.

I got my first clues on what might be wrong with Ma when I had to ring the National Dementia Hotline  for help during one of Ma’s delusional episodes.  They mentioned that it sounded like a specific type of dementia.  When I was setting up in-house respite for Ma, the coordinator mentioned that Ma could have Lewy Body Dementia.  Over the past few weeks I’ve been undertaking an online course on Understanding Dementia through the University of Tasmania.  (It’s a free course available online and most invaluable to anyone that wants a better insight into this insidious disease.)

Lewy Body Dementia (DLB) was discussed and I did further research (Alzheimer’s Society).  What I found led me to believe I have found the answer to Ma’s problems.  The reasons why I’m convinced Ma has Lewy Body Dementia are as follows:

1. Visual hallucinations occur in most people with DLB, and can be distressing.  These are often people or animals, and are experienced as detailed and convincing.

   Ma is often convinced there are people around her that I can’t see.  Sometimes adults, sometimes children, sometimes animals.  Just last night she was convinced somebody was in her bed and then in the chair in her room.  When I think back, Ma has been seeing ‘white birds’ and a man climbing up a palm tree for a few years.  When she was in hospital there were multiple animals residing with her.

2. Hallucinations and visual difficulties partly explain why many people with DLB have delusions (thinking things that are not true).  Someone may believe they are being persecuted, that there are strangers living in the house.

   Yes indeed, Ma is constantly under the impression that there are other people in the house.  She even wants me to cook extra for them!  When really upset I get accused of stealing her handbag and her money.

3. Problems with attention and alertness.  These can fluctuate widely over the course of the day, by the hour or even a few minutes.

   Sometimes Ma is so ‘with it’ it’s scary!  There was a recent article in the paper about an ICE user eating their toes.  After she had eaten cake which put powder on her nose I made a remark that she looked like a drug user.  Without missing a beat she told me: “well at least I’m not eating my toes!”.  Yet five minutes later she couldn’t find her way to the toilet.

4. Difficulties judging distances and perceiving objects in three dimensions.

   Ma is often convinced that doors have been closed in front of her and that she has been shut in.  She will go and sit somewhere else as she is convinced the door to her bedroom is shut.

5. Difficulties with planning and organising

   Ma hasn’t been able to do this for awhile now.  Just getting her to answer yes or no to a question is a major undertaking.  If I ask her to ring the doctor or anybody else she can’t do it…. although she did manage to ring 000 when she was having a delusional episode!

6. Up to two thirds of people with DLB have movement problems when the condition is diagnosed, and this proportion increases as it progresses.  These symptoms are those of Parkinson’s disease, and include slowness and rigidity of movement with a blank facial expression. Walking is often stooped and shuffling, with problems balancing. Trembling of the limbs is also sometimes seen.

   This is a hard one as Ma walks on a wheely walker and her gait is already bad and she suffers chronic pain from her arthritis.  She is certainly having increasing difficulty pulling herself up the stairs but she is also in more pain…

7. Sleep disorders are common.  The person may fall asleep very easily by day, but have restless, disturbed nights.

   Again, this is a hard one as Ma’s sleep patterns haven’t been good for a long while.  I will see her fall asleep sitting up with her head in her lap.  Even when I have her out and we’re waiting she will sometimes nod off.  Sometimes she’ll be very hyper during the night.

Information about Lewy Body Dementia (DLB)

• Lewy Body dementia gets its name from the characteristic pathological change called a Lewy Body. These deposits cause damage to, and the eventual death of, nerve cells in the brain.
• Lewy Bodies are also a characteristic feature of Parkinsons’ disease.
• Dementia with Lewy bodies develops slowly and tends to progress gradually.
• Unlike Alzheimer’s disease, in the early stages of dementia with Lewy bodies the person’s attention and alertness often vary widely from day to day, or even during the course of a single day.
• DLB can be difficult to diagnose.
• Diagnosis of DLB is largely based on the symptoms – particularly fluctuating attention or alertness, persistent detailed visual hallucinations, and movement problems associated with Parkinson’s disease.
• A more specialised brain scan can be carried out. This can confirm a diagnosis of DLB if it shows reduced density of a particular type of cells (dopamine nerve cells) at the base of the brain.
• A person with DLB will benefit from individualised and meaningful occupation (eg tasks, hobbies), social interaction, reminiscence or life story work and strategies to cope with memory loss and visual hallucinations.

  This is so the case with Ma.  The less social interaction she has the worse she gets.  I can’t leave her for more then an hour before her mental state starts to deteriorate ie. hallucinations start.  Reading and listening to the radio also add to her comfort.

Dealing with hallucinations or delusions

• If someone is having hallucinations or delusions, in most cases it is unhelpful to try to convince them that there is nothing there, or that what they believe is untrue. What the person is experiencing is real to them at the time. Instead, carers can offer reassurance that they are there to support the person, and perhaps try distracting them.

  I have used distraction on a number of occasions ie. drawing her attention to the kitties or what’s on the radio; has she read a certain article…

• As in other dementias, behaviours that challenge (eg agitation, aggression) in a person with DLB should be viewed as a form of communication – a sign of an unmet need. Approaches tailored to the individual should try to identify and meet this need.  The underlying cause may be a medical condition such as pain or the side effects of drugs. Or the behaviour might reflect frustration, fear or boredom. To manage these, carers should look for specific triggers and make appropriate changes in the person’s environment or care.  Aromatherapy, massage or talking therapies may also help.

  Triggers!  Yep, I’m beginning to know these.  For any ramped up delusional episode Ma experiences, I can always find a trigger (see my previous post on Triggers).

So, does she or doesn’t she?  The only way there will ever be a positive diagnosis is by autopsy and she isn’t ready for that yet!

Life in an alternative reality…

Being with Ma full-time has its challenges. Some days I think I’ll go stark raving bonkers.  It’s like living in limbo.  I feel like my life is on hold and I really don’t know where we are going to end up.  I’d like to think I’m a patient person but some days I really loose it!!  I can deal with the physical side of things till the ‘cows come home’ but when it comes to the ‘mental stuff’ it really does my head in (no pun intended).

After a few relatively sane days, well as sane as things get around here these days, Ma has gone back to having occupants in her bed.  Just trying to get her into her bedroom is a major exercise.  I’ve tried my old routine of:

• When going into her bedroom I usually try to be there first so I can discretely lounge across the bed in my best pose (think bikini model advertising a car drapped across its bonnet… or maybe not!) so that she hasn’t got an opportunity to say somebody is there.
• I really ‘lost it’ once and bounced up and down on the bed chanting ‘THERE’S NOBODY THERE’!!!!!.  This of course went down like a lead balloon.
• I’ve even slept in the bed beside her on occasion.
• I’ve tried reasoning with her.  Colonel Gadarffi, our cat, disappears if anyone strange appears, so I tell her if Colonel is on the bed, everything must be ok.
• Iv’e tried luring her with Brandy… her favourite.  Ma and Brandy have a good relationship.  Brandy has calmed her down on a number of occasions.  She usually has one of a night but on occasion this has been earlier in the day depending on circumstances.  As far as I’m concerned at 88 if a Brandy is going to make her feel better, she can have one.
• I’ve done the mean and horrible thing of calling her a coward to try to spark some gumption (when you’re desperate you try anything as horrible as it sounds).
• I’ve tried to distract her by turning the television on and doing fast talking till I’ve tucked her up in bed and a cat has drapped themselves across her chest.

There are only two beds in the house, hers and mine.  I would gladly give her mine if she could actually get into my bed which is much higher than hers.  She asks me, ‘which bed am I going to sleep in tonight’?

Today we went to the Rheumatologist to get some help with her two frozen shoulders which affect her mobility and give her lots of pain.  He’s a lovely gentle man who is down to earth.  He questioned why Ma was off her anti-inflammatory as in his opinion, her comfort should be more important than worrying about long term affects of certain drug use.  I agree, but she was taken off this when her urinary/kidney problems started.  Not only was she taken off her anti-inflammatory but her pain medications were also decreased due to her confusion and fragile state.

I feel like the lowest of the low as I only hand out the ‘top you up’ extra strong pain medications when she says she really needs them.  Before all her latest health issues started she was managing all of her pain medications by herself.  I cannot help but think that her pain medications affect her mental state.  As I’ve learnt the hard way, medications can cause delirium: you may not tolerate a new medication prescribed for you.  Sometimes there is an interaction between different medications and sometimes you may have done well on a particular dosage level for many years but changes in the way your body deals with it as you age mean side effects can surface.  One of these can be delirium with its dementia like symptoms (Eat to Cheat Ageing).

So, today when the Rheumatologist assessed Ma, he decided to do only one injection in her right shoulder and see how she reacts before trying another on her left shoulder.  Apparently the elderly can experience some confusion after the injection.  I took her to lunch after her appointment where she was giving me cheek and ate with a healthy appetite. Once home she started to get very agitated and refused to go into her room.  It’s now getting later in the evening and she is sleeping in her electric recliner.  Tonight, I’ve not been able to convince her to go into her room, nothing worked.  I can’t give her her new medication as it makes you sleepy and I’m too scared to give it to her in case she gets confused because of where she is sleeping.  So is it the injection or is it just part of her cycle or is it something else?  So many things can cause her systems.

I feel like it’s going to be a long night…wait and see.