Twilight Zone

Mum continued to adjust to Regis Residential Care, with less frequent requests to go home.  I think her little muddled brain wasn’t sure if Regis was her home or whether she was somewhere else.

I continued to sell items on Gumtree or to family and friends as the house went up for sale.

We had a few offers on the house, none of which we were impressed by; they were much lower than what we had hoped.  We had to cover the Regis fees, which included a daily cost for the services offered, a deposit, plus the interest on the lump sum due, which was astronomical.  We needed to sell the house fast!  Our real estate agent said he was able to negotiate the minimal price we were looking for, which we should accept as house prices in Perth and all over Australia are low and getting lower.  After a family discussion between Mum’s three younger daughters, we decided to accept.

The house officially sold on Dec 19^th after only being on the market a week.  We were a little late with one of Regis monthly fees, but with the house now sold they were willing to wait.  The settlement went through on 11th January 2019.

During this time I bought Mum’s car.  I don’t really need a car, except to visit Mum, which requires a trip taking most of the day because it involves catching two buses and over a kilometre walk from one stop and also the buses are so irregular.  By car it is about 8 km and takes 15 minutes. The other thing is that Jen and Kat can borrow the car when they visit.  My neighbours also offer their car or give me a lift to help me out when needed.

Having come over to help Mum move into Regis, both Kat and Jen soon had to return to work; Kat back to the boat and Jen back to QLD.  Tricia hadn’t been seen this whole time although she had been informed on every move or discussion and the selling of the house. She came once to weed the front garden which was a great help. But other than that hadn’t offered to help with anything else.  The only possession she requested was one of Mum’s two large camphorwood chests.  It was actually the one I had taken to my place but I really didn’t want an argument so suggested she pick it up from there, which she did when I was out.

It was difficult to know when Tricia visited Mum as she refused to sign the visitor’s book at Regis.  Mum often asked after her and why she didn’t visit.  On rare occasions staff would let me know if she had popped in.  On one occasion the staff told me Tricia had left upset as Mum had said “Who are you?  I don’t know you.”  This must have been very hurtful, especially as Mum knew full well who she was.  After this she didn’t visit for many weeks.  I continued to reassure Mum that she had been to see her but because of her dementia she just couldn’t remember (which on occasions was true).

Mum would often have a chat with Jen or Kat via WhatsApp so she could see their faces.  What a blessing modern technology is in these situations.  We also had a special joint chat on WhatsApp for Kat, Jen and me to keep us all up to date with what was happening and decisions we needed jointly to make.  There were times we also needed to coordinate with Regis for family chats to discuss Mum’s needs, including her Advanced Health Directive, palliative care plan and the like.

Not long after she arrived in Regis, Mum started complaining about an itchy back.  She had had this problem for years.  It drove her crazy!  When she was at home and while I was cooking for her we tried altering her diet.  On one of Jen’s visits she tried her on her FODMAP diet.  Then about a year after I had moved back to Perth it just seemed to disappear, but now it was back with a vengeance.  We tried all sorts of things, steroid and cortisone creams, antihistamines, probiotics.  Finally Jen suggested trying to keep Mum’s body temperature cool.  This was difficult as she was also complaining about being cold all the time so the staff overdressed her in the mornings.  I asked them to please make sure they took her jacket off by 10am.  This was difficult to manage and I was constantly disrobing her when I arrived at 2pm.  There was a bit of a trick to this as she hated to be told what to do but liked having cream rubbed on her back.  I’d say “let’s take your jacket off so I can rub some cream on.”  By the time the jacket was off she had forgotten why it had been removed and if I distracted her quick enough the cream was also forgotten.

We also suggested cutting out the extra sugary foods including cakes, biscuits and muffins and give her fresh fruit instead.  We started a new trend with the fresh fruit as it started turning up in a basket in the coffee lounge too.  I think in general we have been a good influence, introducing several things when we saw the need.  Another change we instigated was having the doors to the garden areas left open.  This was soon instigated for both downstairs in the coffee lounge and under supervision in Mum’s wing.

An additional challenge we had was her very thin skin.  She often had accidental skin tears and along with fluid retention, her legs swelled causing leaky leg syndrome.  This basically means that some of the wounds on her legs constantly seeped clear fluid, forming pools on the floor where she sat or saturating her bed linen.  Unfortunately some of the staff thought it was urine, until I pointed out that the crotch of her trousers were dry as were her pullups.

One Sunday evening after returning from my visit to Mum, I was relaxing when I noticed my phone was showing a message that said I needed to go on wifi as my phone had just updated.  WHAT!  I hadn’t given permission to update my phone!  Now I was locked out of the phone until I hooked up to wifi!  I was furious!  I don’t have wifi at home!  The only internet connection I have was on my phone!  And now I was locked out of my phone!

I asked several neighbours for help but they either didn’t have wifi like me or didn’t know their passwords to allow me access their wifi.  I then saw a light in a house just up the road a bit from another neighbour I was going to try and decided I’d try there instead.  They must have been surprised to see a stranger standing at their door asking to use their wifi.  I was greatly relieved when they invited me in and linked me up.  I had several attempts at putting in my password but all failed.  I said I’d have a look for my password on my computer at home and be back, if they didn’t mind. I brought back my tablet and tried to link the phone through iTunes but I still needed my password for that.

After googling how to retrieve my password I was eventually able to reset it.  I tried setting it to the one I had been trying that hadn’t worked but I wasn’t able to as it came up that it had previously been used.  What?  I thought it wasn’t recognised so why are they now telling me they can’t use it?  I hate trying to choose a new password so I changed the old password slightly and it worked.  I just pray I will remember it for the next time I need it!  Within no-time I keyed in the new password into my phone and bingo it was unlocked!  Hallelujah thank you Jesus!  What a relief!  It’s amazing how trapped I felt not being able to call out.  It really is a necessity these days.  I was so thankful to the Lord for His gracious provision of kind, welcoming neighbours.

They invited me to stay and chat.  We introduced ourselves and somehow I brought up Mum’s name.  Andrew, the husband said her name rang a bell.  He was a dentist and maybe she had been a client.  I then told them where she lived and the things she use to do from home including swimming at Mettam’s Pool.  That rang a bell and immediately he knew that was where he knew her and her dog Sam.  I said she was now in residential care at Regis.  Surprise, surprise, his parents were also in Regis, his father was in the same wing as my mother but he was wheeled each day into another wing where his wife was.  What a small world!  Some time later I bumped into them at Regis which was a pleasant surprise. What surprised me even more is that I remembered their names!

Sometimes Mum said some very funny things.  She often asked the staff where I was or asked me, “Where is Sally?”  “I’m here mum.”  “Then where is Kathy?  Where is Jen, Where is Tricia?”  She also repeated our names, in order of our age, to the staff.  I think she was just proving to herself that she still remembered us. Kat shared a quote from one of her visits, “I like having you come and visit.  It’s nice being part of the family and not a knobbly bit on the end.”  She often said we should be able to find her when we visited as she would be in the garden or in the house somewhere.  “Oh so muddle puddly” she would say, writing it all down to remember later.  “Kathy rang for chat, Sally rang, mummy going to bed.” “When are the others visiting, there are plenty of beds at my place for everyone to stay”.   By the ‘others’ she was referring to Jen and Kat who live in QLD.   Our little sweetie mummy, I called her “our little muddle headed wombat”.  Her befuddled mind was worse when she had an infection and that was often a sign she was unwell.

It took a few weeks of living at Regis before Mum was able to answer the phone in her room.  This made it easier for Kat and Jen to chat without me being there to help. Once when Jen rang, Mum told her she had not had time for drawing…. “Been too busy. No time for anything these days” she said.  Then other days she said she was bored.  She sometimes complained that nobody visited her.  The nurse often reassured her that one of her daughters visited very day and Sally will be here soon.  If it wasn’t me then when Kat was in town it was her.  I think Mum was the most visited resident at Regis!  On occasions she would burst into tears while we were there or try to prevent us from leaving.  Staff were very helpful reassuring her we would be back soon.  On other occasions we could see she was trying to be brave and not let us know how she was feeling so as not to make us feel bad.

I had asked extended family and friends to let me know when they were planning to visit Mum as this would give me a day off from visiting, while Mum could also have time with her friends.  This worked most of the time.  Tricia knew I visited in the afternoons so she was able to visit at other times undisturbed.  Mum continued to ask after her, sometimes asking me to take her to Tricia’s house unexpectedly so she could see her.  Again I would reassure her that Tricia had visited, whether she had or not, I was always unsure, but Mum seemed to be satisfied with the answer.  The staff also let me know when Tricia or other family and friends had visited Mum, which was great as I could then mention their visit to Mum.  When Kat was in town I often didn’t visit as she had my car and public transport to Regis was shocking!

On one occasion Kat had told me about a group of volunteers who take the elderly on electric-powered trishaw bikes rides along the coast. We both thought Mum would enjoy this, especially as it was along the coastline she knew.  On one occasion I picked Mum up and then her friend Dorothea and they went for a ride, which both enjoyed.  Two coffee shops along the route are sponsored by the Cycling Without Age and offer free coffee to the participants.  A few weeks later Kat was in Perth for a quick visit (from 21^st to 28^th of February) which gave me time off to do my own thing.  During this time she took Mum on another ride.  It was a wonderful idea for an outing.

Then in March I arranged a trip to Mandurah, around 78km, or an hour’s drive south of Perth.  I wanted Mum to visit her good friend Margret, and thought if we don’t go soon it would be too late, as Mum was getting weaker by the day.  I asked mutual friends, Helen and daughter Jan, who also knew Margaret from Christmas Island, to meet us at Regis where we planned to travel together in their car.  It was a long drive for two elderly ladies; both Mum and Helen sat in the back complaining about the distance.  Jan and I took it in turns trying to distract them.  Once we arrived it was much better, although Mum kept complaining about her itchy back.  Margaret entertained us with her usual scrumptious spread which we all enjoyed whilst trying to ignore Mum and her antics: banging the table with her cutlery, picking at her food and then trying to cut into the mini ice pack before trying to eat it.  Jan had offered the ice pack to Mum to try and help with the itch.  Dementia is such a debilitating terrible disease!

After fond farewells we headed back to Perth.  We had to stop along the way for Mum to move out of the sunny side of the car to try to help relieve the itch which seems to get worse when Mum overheats. This was a palaver in itself as she didn’t want to move and didn’t know why she was being bullied by me.  She hates being told what to do.  I was losing my patience and pushed her across the back seat as I climbed in where she had sat.  With the air conditioning up high we set off again with Helen complaining from the front seat and Mum having a panic attack beside me in the back. I held her hand, praying under my breath, and distracted her as best I could with the passing scenery of trees, clouds, flowers and the river.  Both Jan and I were exhausted by the time we reached Regis!  We vowed never to do that again!  In fact this was about the time I realised that taking Mum out anywhere had become too difficult.

Mum had quite a few little bouts of illness, sometimes needing antibiotics, sometimes I asked for her to be given vitamin C, Echinacea and olive leaf extract which helps with the immune system.  She bounced back eventually but after every episode she was a little weaker and more muddled.  It was in March that she was no longer able to walk with the support of her walking frame.  We found it more and more difficult to assist her with getting off and on the toilet or in and out of bed to the wheelchair.

A friend from church suggested I find out about the volunteer companions for Mum.  Regis helped and we organised a lady to visit Mum for a chat every Tuesday morning for an hour from the 30^th of April.  I then took Tuesdays off to catch up with my things.  Mum used to complain that she had no one to talk to, as many of the residents (including herself) thought they were having a conversation but really just strung a lot of words together, which to our ears sounded gibberish.  Staff and family of other residents would often stop by Mum for a chat.  She was very well known and loved by all for her wild exclamations as she tried to cheer people up.

We celebrated Mum’s birthday on Thursday, the day after her birthday instead of on the Wednesday, the first of May, as she was off on her fortnightly bus trip that day.  Regis staff organised a birthday cake, gathering the residents together to celebrate in Mew’s wing.  Mum also chatted on messenger to her sister, Sally, in Scotland, with Kat and Jen, and with Jen’s daughter Kate who is in the UK.  Tricia and husband and eldest son dropped in the following day as did some of her long-time friends during that week.  It was a week of celebrations for her and boy did she lap it up.  It was lovely to see her so happy.

At the end of May Regis celebrated a late one-year-of-opening.  Mum enjoyed the singalong and the mini farm with animals to pat.  Of course she tried to feed the piglets with the sausage she was eating.  It was a fun day.

Mum’s language and actions were slowly deteriorating.  She would often sit or lie with her eyes closed, she said it was too much of an effort to keep them open.  She would listen to whoever it was with her or on the phone and then ask me to take over or make an excuse by saying she needed to go to the toilet so that she didn’t have to exert herself further.  The speech not only became jumbled but also slurred.  We became adept in making up conversations from the jumble of words.  You could see her trying to find the right words to say.  I would often prompt her by saying “oh you mean the thing-a-me-jig” or “was it the whats-a-me-doover?”  She would agree and the conversation would resume.

She also started to fiddle with things.  All the zips on her jackets were broken off.  Sometimes she looked like she was trying to feed herself, but they were only gestures as she had no food in her hands.  I’m sure these little quirks were due to the deterioration of her mind.  We had entered the twilight Zone.  Dementia is such a sad journey.

Although I have not quite caught up with my blog posts I must inform you of Mum’s passing.  I will fill you in on the details in the next blog update.  Suffice to say, she died Tuesday 11 June at around 12:30pm at Regis in her own bed.  Her funeral was at 1:30pm on Friday 14th June at Pinnaroo funeral cemetery with a Thanksgiving service at my church at 3pm.

Also my apologies to anyone who has tried to access this site and been unable to as there was an error which I didn’t know about till I tried to put this post up.

Photos:   1. Roses from Mum’s garden     2. House sale     3. Garage sale for Mum’s paintings and pottery      4. Art at Regis     5. Birthday celebrations     6. Enjoying the Regis entertainment hour       7. Down the beach with Kat     8. View from Mum’s room window, her pots on the windowsill      9. Enjoying the beach with Kat     10. Regis activities     11. Trishaw ride with Kat     12. Trishaw along the coast      13. Back-seat drivers on trip south     14. Hot chocolate in the garden at Regis        15. Visiting dog at Regis      16. Cheese and wine with Sally in Regis gardens

Prayer & Praise Points:
Praise the Lord for His peace, strength, patience and enabling.  It is truly comforting to know He is with me in all the challenges I face.

Praise Him for the nine months Mum has had at Regis Residential Care and for the staff who loved and cared for Mum in a very special way during her short stay from 18 October 2018 – 11 June 2019.

Please continue to pray for the salvation of my sisters and especially for reconciliation between Tricia and her three sisters.

Pray that all the paper work needed for Mum’s affairs and for the public trust to be completed without too much difficulty and that Mum’s Will is not contested or causes any friction between her daughters.

I appreciate your ongoing prayers for the business, Senior’s Benefits and Rewards.  I will now have the time to concentrate on getting it done.

Thank you to all my supportive friends and prayer partners; it’s such an encouragement to know you are all standing with me.