Challengers of Dementia

It seems that so much and yet nothing much has happened this month till I went through and wrote it all down!

There was a bit of excitement one evening when I walked down to the local shopping centre.  I thought I could smell electrical smoke but didn’t know where it came from.  While shopping there seemed to be some scurrying and someone asked if anyone owned a BMW car as it was on fire in the shopping centre car park.   On finishing my shopping I went to check it out.  When the owner of the car beside it hurried over to move his car I advised him to stay clear till the fireman arrived as the ignited car could explode if the petrol tank caught alight.  It wasn’t long before a fire brigade arrived.  The other owner moved his car safely while the flames were being put out.  The owner of the burnt car didn’t turn up while I was there and I wondered if it might have been left in the carpark while the owner went to the beach for a swim.  This is of course is against the shopping centre policy but it happens often.

November was a month of new work.  I was offered three cleaning jobs by a friend whose husband was given work in the Middle East.  She gave me jobs she had in North Beach, one was once a week, the other once a fortnight and one once a month.  I was also called in for an interview with an age care provider.  There were lots of questions one included ‘what kind of client don’t you want?’ I said ‘one like my mother!’  The interviewer laughed and asked if she could put that down as my answer.  It’s nice to know she has a scene of humour too. After all the reference checks I was pleased to hear I was accepted.  You might have thought being my mother’s carer was more than enough work with the elderly!  I figured at least I’ll be paid for it this time.  It is also a great opportunity to be taught how to care for the elderly and therefore be better able to care for Mum too.  By the end of the month all my paperwork was done, I have finished my orientation and manual handling course and was ready to commence work.

Denmark Beach Mission had their orientation one Saturday where we met people from some of the other Scripture Union Beach Mission teams.  I drove south early as I was unsure of where I was going and my GPS has been playing up so I gave myself extra time.  I’m so glad I did as there was an accident on the freeway just before I crossed the Swan River.  I was able to take the exit north of Perth and go via Vick Park then south along the river to meet up with the freeway on the south side.  What a long way around!  I arrived 10 minutes late but I’m sure it would have been quicker than waiting for the traffic to clear.  It was an interesting day.  My hunt for a tent went from a one man tent to a four man tent. I was told I’d be crazy living in a one or even two man tent for 10 days.  I would need something I could stand up in and be comfortable in.  Praise the Lord there is a church member who operates camps in the Pilbara who not only offered me a four man tent but also a mattress, and torch.  Another member of the team offered me a lift down with her on the 27th December, my sister Kat would be back in town and able to stay with Mum from 28th Dec till I returned on the 5th January.  Looks like the Lord was lining things up here too.

I started to put in place extra care for Mum.  I ordered Meals on Wheels to deliver her dinner on Sat and Sunday evenings.  I also arranged for someone to visit her on Saturday and Sunday evenings to put out her breakfast tray with her medication and for her friend Belinda from Baptist Care to come on Monday morning to make sure she takes her Monday medication.  This would give me the weekend off.  I was getting quite busy especially with the bread run on Saturday evenings.

The first Saturday I decided to meet the new carer, a lovely Christian lady from Kenya.  I showed her where things were and how to set out the medication on the breakfast tray for Sunday.  Mum wasn’t at all pleased and paced around the house telling the lady to leave.  I too had to go as I needed to pick up the bread.  I left them both hoping Mum would settle down.  On route I stopped to SMS Jen to let her know if Mum rang fuming she would know why.  Jen soon rang me back and said “Do you want to hear something funny?” She had chatted with mum who told her she had had a huge barney (old English for argument) with me.  She asked Jen if she would call me to ask me what it was all about as she couldn’t remember.  Poor old thing her memory really is deteriorating.  Jen and I had a giggle.  Short term memory loss is sometimes a good thing when the cause of an argument is forgotten, it’s quicker to get over it and move on.  Mum called me a little later to tell me she was taking the dog for a walk, I was cheery in return, as if nothing had happened, to help her know all was well.  I later called in to see if her food had been delivered.  It hadn’t!  Thankfully, when I dropped by to check on things, Mum was still out so I left her a plate of leftovers from the previous night and a note saying I was busy and wouldn’t be back that night.  Meals on Wheels had let me down.

Sunday evening I had invited Jan around for a meal at my place.  We were just about to start when I received a call to say Mum had once again told her carer to leave.  I rang Mum to say I was busy but by this time the carer had left.  Thankfully Jan understood so I excused myself while I rushed around with some of our stew.  Thank God I had made extra!

On Monday I rang Meals on Wheels who informed me they didn’t deliver on the weekend.  They could delivered two meals on the Friday instead.  I didn’t think this would suit Mum so instructed them to deliver the meals to my place.  I could then take the meals to Mum’s, label them with the days in separate plastic bags and put them in her fridge.

The following weekend I was all prepared, or so I thought.  Mum had her meals in the fridge labelled and ready to go.  I had asked Baptist Care try a different carer and suggested she take Mum and the dog for a walk to the park or beach before coming back to heat up her dinner while setting up the breakfast tray.  What do they say about the ‘well laid-plans of mice and men’?

This was the Saturday I was doing my beach mission orientation, half an hour south of the river.  I was also having to rush back to pick up the 5 pm bread.  I had a total of three calls from Baptist Care on my drive north.  One to say, your mother doesn’t want to go out and the carer was unsure of what to do with the medication”.  Another to say Mum was refusing to take her medication.  Things were worse than I thought!  The carer had totally stuffed things up!  I hadn’t been there to show her what to do and she had tried to give Mum her medication in the evening instead of reading the instructions I had left which clearly asked her to leave the medication in a single blister pack on Mum’s breakfast tray for Mum to do herself the following morning.  Mum was furious, one of her pet dislikes is being TOLD what to do especially if she know better!  (Which is most of the time!)  The third call was to let me know the carer had left after Mum told her that her daughter, meaning me, would be around soon to cook dinner.  That was it, I asked them to cancel all weekend visits till I could work something else out as this just wasn’t working.

My friend Jan was at the bread shop as I arrived, she had offered to help pick up the bread if I was running late.  I then rang Mum to say I couldn’t make it that night and that’s why I had arranged a helper and that her dinner was labelled ‘Saturday’s dinner’ and was in the fridge.  All she needed to do was warm it up.  Could she do that?  She assured me she could.  I rang later to hear she had eaten.  I was exhausted!

Sunday after picking up my loan tent, Mum rang to ask if I wanted to go down the beach for a swim.  It had been a hot day so I relented, saying just her and me but not the dog as we were going to Mettam’s Pool where dogs were not welcome.  It was lovely in the water, Mum needs helping in and out and enjoys a wallow after a hot day.  I enjoy a quick splash, diving in as quickly as possible to lessen the chill factor then after a minute or two I’m out to warm up.  This means I need to help Mum in first and then when she is just about to get out I take the plunge, immerse myself below the chilly waves, before helping Mum out.  As I dropped Mum at home, I prepared her breakfast tray with meds and looked in the fridge for her Sunday Meals on Wheels.  I was dismayed to see both packets had been opened although I couldn’t see the extent of the damage or if there was enough for this evening’s meal!  At this very moment I heard my sister, Trish arrive.  A sigh of relief.  I didn’t want to hang around to work things out, instead, whispered in Trisha’s ear please make sure she has some dinner.  Then hurried out the door waving my goodbyes.

The following weekend I was determined to have my Saturday off.  During the week I had cancelled Meals on Wheels and bought some frozen meals instead.  Once again I was foiled!  It started well, my neighbour, Jess, was over for a chat when Mum called to ask if I wanted to go to the beach.  I explained Jess was visiting and I’d be around there a little later.  Jess decided to join us, I also rang Jan to see if she wanted to come, which she did.  By the time I had picked everyone up Mum was furious.  She thought I was on my way last when we spoke on the phone so had been waiting over half and hour.  I had some shopping to put in the fridge so left the keys in the ignition which Mum decided to take out and wouldn’t give back.  These were all my keys including those of the homes I cleaned and I wasn’t going to leave them with Mum who might put them somewhere where we couldn’t find them!  Jan came in as I was wrestling Mum for the keys and suggested she stay with Mum and for Jess and I to go to the beach.  By this time my keys had broken off the flimsy ring and I was able to rescue the car key.  I wasn’t sure if I left them with her whether or not she would try to drive the car.  I felt bad about leaving Jan there but I need to escape for a while to cool down, what better place than a dip in the ocean.  I think what also might have aggravated Mum was that Jess was sitting in the front seat which is usually where Mum sits.  Routine is very important for those with dementia.  Jan was wonderful with Mum, being a registered nurse and also working with the aged and a very calm person she was able to placate her.  After dropping Jess at home I went back to Mum’s, she was still out on her dog walk.  I took a frozen meal from the freezer and left a note saying I needed some time to cool down so wouldn’t be coming for dinner.  A little later Mum rang to ask if I was coming for dinner.  I told her I needed some time to myself.  She then said ‘so you’re not coming tonight?’ I asked her if she wanted me to come and she replied, ‘Yes’.  I then suggested she put the frozen dinner back in the fridge and to wait for me.   When I arrived the frozen meal was still on the bench so I decided to heat it up for Mum and I would have leftovers.  This Saturday night off wasn’t going to work!  I’d have to think of something else!   Buying a quick fix meal or a takeaway is now my options so that I don’t have to do the preparation.

After this episode Mum had a bit of a turn.  Monday morning I get a call at 6:30 am, from Trish.  I had just woken up after a difficult night’s sleep so was a bit groggy.  Trish said Mum had called her (I’m surprised she got through as Trish is notorious for not answering calls or emails).  She said she was feeling very muddle headed and not well.  Hmmm what’s new?  I said ok I’ll check on her later.   Not long after this Mum’s neighbour, Kylie, called to say Mum had knocked on her door saying something similar.  I reassured her that Belinda, Mum’s carer would be there at 7:30 am.   Kylie called again soon after to say Mum was labouring to breath and she thought she should ring for an ambulance.  I told her to hang in there I was on the way.  Mum has often been breathless but refuses to take her morning puffers.  Belinda since coming early has tried to help her remember but noted that she had no idea anymore of how to do it.  When I arrived I found her puffers and the spacer which helps her take them and although she breathed out instead of in she eventually got enough to help her breathing.  Kylie was relieved the puffers worked so well she thanking me for showing her how it was done as she was now confident she would know what to do if, in the future it happened again.  Later that day I took Mum to the doctor.  I was going to ask Mum if she wanted me to come in when she was there but she beat me to it.  I said only if she wanted me to as she usually doesn’t want me to be there as I’m often contradiction what she says due to her failed memory.  While explaining to the doctor I gave him a wink to let him know I’d like his support in my suggestion to have extra help in the mornings so that Mum is reminded to take her puffers.  I had already spoken to Mum about it by suggesting we try to get someone in who could take her to the beach in the morning which she has been nagging me about.  Unfortunately her doctor didn’t help me out but instead stated in quite a gruff voice “Only if the client is agreeable”.  Really!  If I could I would change her doctor as it’s not only me who thinks he hasn’t been helpful to family who are trying to do their best for Mum.

That night Mum asked if I could stay with her for the night.  The following day was a really busy one for me so I suggested she call Trisha as I knew she wasn’t working on the Tuesday.  I called Mum back after 20 mins to see if she had got through but of course not!  Trisha was not answering her calls as per usual!  I then tried Baptist Care but they were unable to help with overnight care.  Unfortunately my attitude was not good and begrudgingly I packed up my earplugs, pillow and a few necessities.  When I arrived I wrote a note on the bedroom door where I was sleeping to remind Mum I was there otherwise she would no doubt wonder why it was closed and open it waking me in the process.  I knew if she was really needing me she wouldn’t hesitate to wake me.  We both survived the night without any mishaps and after checking she was ok and a quick morning greeting I left around 4:30 am.  Mum had taken her puffer during the night and was feeling better.  When I returned that night I set up a calendar so she could tick off when she had taken the puffer.  She has since refused my help so I’ve left it to her and Belinda who comes three times a week.

Praise the Lord, Kat was arriving that afternoon.  She was only home for a quick visit, flying in on Tuesday afternoon and out very early on Thursday morning.  It was long enough to get Mum back to better health and confident in staying alone again.  I was really grateful for the break.  That evening Kat picked me up for fish and chips and our favourite ice cream at Hillarys Marina.

During her time here Kat also arranged a debit-card for me to do Mum’s shopping.  Jen had suggested I do the shopping this way as I was struggling to get finance from Mum.  After explaining my situation of scrupulously dividing all the shopping into Mum’s, mine and ours to make sure I paid for my own items both Kat and Jen thought it was a good idea for Mum to pay for ALL our shopping.  They had thought I was already doing this.  My conscious would never have allowed it plus I was prepared to, if need be, provide all the dockets to prove what it was all spent on.

The card has made things so much easier.  I’m also hoping it will also enabled me to take out cash which I can then give Mum instead of her going to the bank then forgetting where she has hidden the cash. Kat then emailed everyone to tell them what she had done and how much was going in weekly and that this money was to pay for both Mum and my shopping and for me to enjoy taking Mum out to different things and for meals out.  Kat said I was not to feel guilty in doing so.  I was so appreciative and grateful for the thought.  It made me feel much more supported by everyone.

Recently I have been quite concerned about my short term memory especially after some very strange incidents.  On one occasion I went out shopping and bought exactly the same thing the following day but had no recollection of the previous days shop!  Then one evening during a letterbox drop for the Church’s Christmas Carols I was inviting some people and handing them a flyer but was told they already had one in their letter box.  I thought, who has been giving them out on my route.  Now before you jump to conclusions and judge me for being arrogant I’ll just explain.  Before we take a wad of flyers we also mark off on a map where we will do the distribution so as to avoid doubling up and wasting not only paper and the cost of the flyers but also people’s precious time.  One of my pet peeves is wasting time, money and energy!  I rang Frances who often letterbox drops along my street but she said she had doctor’s orders not to overdo things and that another lady who loved to walk may have been there.  I contacted the church the next morning to ask if anyone knew who might have been around my area.  I was reassured everyone stuck to their mapped out route.  As I got off the phone suddenly the fog lifted and I remember it had been me!  I had done that route the day before but at the time had no recognition of it!  I immediately rang for a doctor’s appointment and asked for a CT scan.  I though while they were there they could check the tinnitus and my piturity glad which had in the past had a growth.

I usually attend a medical clinic in Karrinyup which was on the bus rout and bulk billed.  I waited here for my appointment for nearly three quarters of an hour but had to cancel as I was having my job interview with the aged care provider.   While I was waiting I met another patient who told me about a wonderful doctor at another clinic who very rarely run late.  This surprised me but as I had to cancel this appointment I decided to give her a try.  I was so pleasantly surprised not only with her promptness but with her medical skills.  We talked about my situation and concerns as well as with caring for a mother with dementia, which she could relate to as her mother also has dementia.  We discussed my poor sleep and the medications I had tried including the very addictive kind.  She told me she wasn’t concerned as I didn’t have an addictive personality.  I asked her how she could say that without really knowing me.  She reassured me she had done studies in psychiatry.  She also said someone who didn’t like taking drugs was not likely to take any for long periods of time.  It was so refreshing talking to someone who REALLY knew what she was talking about.  The first doctor I visited on my return to Perth, I took a letter from my Sydney doctor. On reading this letter the doctor immediately pulled me over the coals for the drugs I had been prescribed.  She hadn’t even asked me anything about my condition!  I told her I rarely took sleeping tablets and in fact the ones I had were about to expire that’s how old they were!  I hadn’t even come to ask her to renew the script!  Understandingly, I never went back to her!

I digress!  My new doctor suggested I do a few blood tests to check all was well which they were except for vitamin D.  Low vitamin D is quite normal after the winter months, I explained I’d be in the sun more now that the weather was warming up.  She said it was too dangerous to be in the sun due to skin cancer and instead I should take a supplement.  Hmmm  This is when I see I am my Mother’s daughter!   Me, take a Vitamin D supplement when God provides it free from the sun! I don’t think so!  Anyway I’m sensible when it comes to going out in the sun, I’ve learnt from being in Asia.  Stick to the shade between 9 and 5 pm especially during the summer months.

I did leave with a script for another milder sleeping tablet which I’m told is also addictive.  I still haven’t filled in the script after having it for over a week.  Maybe I’ll try it sometime in the future, it might come in handy during the beach mission if I get behind with sleep.  The CT scan came back all clear which confirmed the doctor’s diagnosis for the short term memory loss being caused by sleep deprivation and stress.

Now how to cut back on the stress?  I often find myself fighting back tears and realise it’s due to sleep deprivation, caring for an obstinate mother who knows best doesn’t help either!  We get along very well most of the time but sometimes there are clashes which is quite normal.

I can’t wait to find out the results of Mum’s up-and-coming assessments.  I’m hoping Mum will be given a higher care package which will, God willing provide someone to take her to the beach and check her medication in the mornings.  I’m also hoping it will confirm her memory is getting worse so that I can apply for Guardianship which will give me legal access to her medical assessments.  I just pray that the rest of the family doesn’t get upset or try to prevent this move.

One day I was very concerned for Mum as she rang me four times asking where ‘they’ were?  They being my younger sisters, Jen in Eumundi QLD and Kat who had just visited and was back at work on the barge.  Mum was very muddle headed, more so than usual so I suggested she see the doctor for a urine test.  Sometimes a urinary tract infection in the elderly can present with symptoms of confusion.  Mum didn’t want to go.  I rang the clinic and asked if they could give her a call to ask her to come down to see the nurse as I was concerned about her health.  Praise God they did.  When I rang Mum back she said she was just about to walk to the doctor.  I suggested she wait for me to pick her up as it wasn’t for another three quarters of an hour and I was coming her way.  The initial results were clear but on sending them to the laboratory, one of the doctors ring me to update me.  I was pleasantly surprised as I have had no help from her regular doctor and told this doctor how pleased I was she rang.  Unfortunately she suggested Mum see her regular doctor as although there was a slight infection and she might need antibiotics, her regular doctor would need to consult her in regard to my concern about her sudden deterioration of memory.  After that visit I heard nothing!

After all these events I decided to help cut back with the stress I would give up two of the cleaning jobs and just keep the weekly one.  This would give me more time for Mum if needed.  I also requested to start the carer’s job after I returned from the beach mission, mid-January.  This will take the pressure off for the time being.

My patience eventually paid off with my neighbour’s dad finally able to help me change a few light switches and putting in some double power points.  He is a retired electrician who had promised to help me before he went to Broome earlier this year and since returning had been busy with other things.  It was great to finally get them all done as I had bought the switches way back when Masters was closing down in October 2016.

This term I had taken our Monday Bible study, going through the book of Genesis looking at creation.  It has been very interesting sparking lots of conversation and discussion on various topics.  Then the last day of November we had our breakup morning tea.  It was a busy day for me and I hadn’t slept well.  I rushed off to do my weekly cleaning job to do first.  When I arrived at 8 am both my clients and their sons where home.  Sometimes it’s just one son but with everyone home it made it quite awkward working around them.  They stopped to chat and showed me around the garden.  Being a keen gardener myself I couldn’t be rude although I did mention I needed to leave on time.  I was also promised seasonal fruit which they would leave in the kitchen for me to take home.  I’m glad I decided to keep this job it looks like I’ll have a few benefits!

I raced home to change before attending the morning tea.  I am exhausted after two and a half hours of physically hard work dragging the vacuum cleaner up two sets of stairs and large areas of wooden floors but it was good to catch up with everyone.  Arriving half an hour late I also had to rush off after 2 hrs as Mum had a doctor’s appointment.  That afternoon I had to have a sleep.  I knew this would affect my night sleep but I was exhausted!  I crashed and slept two hours!  I must have been tired!  All that poor sleep had caught up.  I told myself I would take a sleeping tablet to insure I slept that night.  I was going to take it early but forgot!  By the time I remembered I was jumping into bed.  Still I felt tired but would take it anyway.  I was determined to sleep.  Alas it took me over two hours to finally fall asleep and when I woke I not only felt exhausted, groggy headed but I also had a headache!  It seems I just can’t win!

The next day, Friday was the Christmas Island Christmas lunch gathering.  I usually don’t go but decided I’d take Mum and see who I might know.  It was an interesting day.  When we arrived at the venue I asked where our group was booked.  There didn’t seem to be a bookings.  The organiser arrived shortly after us.  He had unfortunately told them it was a dinner instead of a lunch!  There was a hectic rush around to set things right and to organise food for the 46 of us.  All was sorted and a great time catching up with old friends was had by all.

And that was my November!


Photos:   1. Sunset from the top of our driveway.    2 & 3. Burning car   4. Denmark Mission camping gear      5. Bobtail lizards in my garden    6. Red and white strawberry plants    7. Beautiful scented rose from where I clean.     8. Bible Study morning tea

Prayer & Praise Points:
Praise the Lord for cooler weather with some lovely warm sunny days for swimming.

Praise Him for all the ongoing support and helpers He has put around me, friends, neighbours and professionals.  For His ever present help in times of need.

Thank you Lord for Your ongoing patience and wisdom in helping Mum through her challenges.  For teaching me how to manage the challenges along the way.

Please continue to pray for her health and that she will graciously accept the carers provided to help her.

Pray also for her assessments and for favour in acquiring Legal Guardianship and Power of Attorney.

Please continue to pray that I will learn how to sleep and cast my care on the Lord and to grow in love guarding my heart and zip my lip.

I appreciate your ongoing prayers for the business, Senior’s Benefits and Rewards.  We are still looking for someone to assist us with marketing ideas.

Thank you once again to all my supportive friends and prayer partners, knowing you stand with me in prayer is a real encouragement and strength.