A different kind of Christmas

This Christmas was my first by myself, with Ma in care.

Since Dad died, Ma and I have planned the menu and prepared it together.  We would go ham and pork shopping.  Turkey was off the list and chicken was in… only because I pleaded.  The Christmas cake would be made and wrapped in foil until the right moment came to ‘open’ it.  The massive Christmas pudding was no longer an option and we resorted to a recipe that made individual microwave puddings that we froze and ate during the year. We’d cook and prepare way to much food but it never went to waste.

Christmas Eve would find us sitting around the kitchen table preparing the different foods and listening to Christmas music.  Christmas Day would find us doing the finishing touches, with more Christmas music, while having coffee and Kahlua. We then unwrapped presents together while sipping on sparkling wine and nibbling on chocolate coated peanuts and smoked almonds.  Last year Ma attended Christmas Day services with me and my sister which was special… even though she dozed off during the sermon.

Last year I had to show her how to cut things up and how to construct the Trifle.  For years, Ma’s Trifle has been the piece de resistance. Christmas was held at our house and my siblings with their families would all descend for lunch.  After my Dad passed, everyone went their separate ways but the family didn’t miss out on their Trifle fix.  Ma would construct individual Trifles for all the men in the family. For some reason men love Trifle.  This fact belongs with, men don’t know how to hang washing.

This Christmas, everything changed.  I woke to an empty house, except for hungry kitties.  It all felt wrong.  I decided to get out and go to the gym and then took myself to Maccas to pick up some breakfast.  I felt I had to change everything.  I came home, showered and went to church where I cried on the way in; during the service; and when I came out. Everything felt wrong and I felt very ‘off-quilter’.  My sister and her family visited Ma and I arrived around 12 to go to the dining room for lunch with her.

Unfortunately they were still dressing the bad pressure sores on her bottom and I walked in to her crying and struggling, as she’s always convinced she’ll fall off the bed.  Staff then couldn’t work out how to get her out of the bed into her wheelchair.  Asking me whether they should use the lifter or whether she could stand.  The more they discussed, the more agitated Ma became until I told the staff to leave her and I would sit with Ma in her room. They organised a tray for her which was beautifully decorated, unfortunately I didn’t get anything.  She only ate a few bites and gave up.

My sister had left four 200ml bottles of pink ‘champagne’ and Ma sat up like the queen enjoying her treat, with morphine attached, sipping her sparkling while watching David Attenborough DVDs. My man arrived around 4pm and after visiting with Ma we tried to leave.  Ma started to cry and couldn’t understand why I was going.  She wanted to come with us.  We sat some more and I kept saying how hungry I was… She settled down some and we left her watching Carols by Candlelight.

My last Christmas with Ma? I don’t know.  I treasure the times we had and found this Christmas to be very difficult, the time spent with her was bittersweet.  I’m glad I changed the way I do things.  I’m glad I got up and left the house.  If you can’t have what’s familiar, do something different. I know that got me through.

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Guilt and Vigilance

It’s been a long time since I’ve written.  Every time I thought about writing I felt sick. Why? I don’t really know. Maybe I just poured too much of myself out in writing this blog and maybe because I just didn’t know how to express myself anymore.  My feelings were very raw like a scab you continually pick.

I put Ma into care on 4 July 2016.  It was the hardest thing I’ve ever had to do.  I’m now the decision maker of her life and death needs.  It’s a hell of a responsibility and one I wasn’t prepared for…. but then again, how does one prepare for that?  The legals, the financials, the need for constant vigilance as well as the need for constant vigilance (yep, I repeated myself). Ma has had a number of issues since she went into care. If I wasn’t vigilant she’d slip through the cracks.  Pressure sores, pneumonia, flu, sores from urine burns, infections, skin tears, not eating or drinking… the list goes on.

I’m there every day and sometimes twice a day.  I can’t afford not to be.  The facility is supposed to be one of the better ones.  I’ve been lucky that the Manager is very response when I raise issues and Ma’s doctor is wonderful… I’m sure they hate the sight of me, but I don’t have to be liked, I just need Ma taken care of.  I pity those that don’t have an advocate or can’t speak for themselves.

I always laugh when people say to me that I must have much more time now that Ma’s in care.  In fact I now have less.  Yes, I now have freedom to go out for more than an hour and I get to sleep all night but my days are longer now.  I cook up batches of food on the weekend so I can spend more time with Ma.

I see Ma slipping away.  Every day I feel regret for having ‘given up’ and placed her in care. Every time I find a problem, like a pressure sore, I feel regret.  Every time, Ma tells me she doesn’t like it there, or somebody didn’t treat her right, I feel regret.  I look back and wonder how I could have been so weak as to have given up.  It’s now hard to remember how I struggled.  All I feel now is guilt as she slips away before my eyes.  Difficulty swallowing, not eating or drinking and sitting in her chair 24 hours a day.  I never know what I’ll find when I visit.  Sometimes I’ll tie myself in knots contemplating what she’s going to be like when I get there.  I dream of other solutions and ways of bringing her home… although home ceased to be home to her before she went into care.

Would she have been like she is now if I hadn’t placed her in care?  I don’t suppose I’ll ever know.  All I can do is live with my decision and be vigilant.

 

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.

 

 

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.

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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!

 

7.5mg of Hell

I took Ma to her Urologist, or as I call him ‘The Wee Man’, on Monday.  After discussions around Ma’s problems of pain, sleeplessness and urinary incontinence, he decided to prescribe Mirtazapine to help Ma with her pain, sleeplessness and depression.  Mirtazapine is an anti-depressant used to treat major depressive disorder.  Knowing how fragile Ma has become to any medications, I was reluctant to get them for her…. And then I thought, “what if they worked and I got to sleep all night?”  I did some research and asked my Memory People™ family if they had had any experience using this on their loved one.  Experiences were varied with some having great success. As each person reacts differently it’s something that’s hard to predict so with great trepidation I gave her 7.5mg to go to bed.

I tucked her in and she was soon snoring.  She slept for five hours straight.  When I checked on her she was lying across the bed in a horizontal position with her legs on the floor sound asleep.  I’m not sure how she got there.  She was restless from then onwards… up and down every couple of hours.  In the morning she was like a zombie.  She ate some breakfast but I couldn’t communicate with her properly.  She sat there on the side of the bed with her eyes closed rocking slightly.  She spent the day like that.  Not making any sense, not understanding anything I said and drifting in and out of sleep…sitting up as she wouldn’t lie down.  She also seemed to be having increased difficulty getting off the side of the bed.

I rang her doctor for advice and in the end I decided not to give her any more tablets.  I finally got through to her in the evening when I roused her enough to eat some dinner.  She was very confused and sat there at the table after she had finished eating until I asked her what she was doing.  She responded with, “you know I’ve only been in the house a short time and I don’t know where the toilet and shower are”.  I got her washed and into bed and she was out like a light.

She roused enough during the night to find the toilet but couldn’t find her way back.  The ‘people’ were also back in her bed so I had to convince her each time that there was nobody there.  In the morning I could see she was more awake but still very dopey.  Her confusion (more than usual) continued, she also seemed very depressed and unhappy and continued to be very disorientated throughout the Wednesday.  She was also very angry at me.  She told me she wanted to go home to her house, that none of her clothes were here and the bedroom I made her go in was different from the bedroom she was in before.

Thursday was more of the same, still confused, still disorientated, still angry.  The doctor visited and checked her over and gave a script for a mild sleeping pill.  I’m not sure I dare give it to her as yet!  The carer came and I was glad to get out for a few hours to go to work.  As usual, Ma was on her best behaviour for the carer.  I walked through the door and it was ‘game on’ with her talking about her imaginary ‘friends’.  Papers that were on the table had been placed there by ‘the boss’ who had come home… She said she had to tell me in case somebody got hurt.  I’m still trying to work that one out.  The radio was on, but she hadn’t put it on… and she wasn’t going to turn it off in case ‘they’ were listening to it. She wouldn’t go in her bedroom as there were ‘people’ in there.  After spending a few hours at work and pretending that my life was normal her behaviours hit home worse than usual.

On Friday she was as cranky as a bag full of cats.  I was trying to do some work when I heard her start talking (my office is next door to her room).  “I want to go home to my house, although I suppose nobody will be there.”  When I went in to see her she said, “why am I here”?  That stopped me in my tracks.  For the life of me I couldn’t think of how to answer her question.  To stall for time, I asked her what she meant.  She repeated her question.  It was then I went for the big ‘D’ for Distraction, and asked her if she wanted to go out for coffee.  She couldn’t get out the door fast enough.  I took her up the street where she bought new slippers. We then had coffee and cake where she looked at me and said, “I feel better now”.  After a shop through the supermarket we came home and she laughed and joked.  It was like somebody had thrown a switch.

Her confusion remains worse than it was before her disorientation the same. It will be a week tonight since she had the pill.  I don’t know whether her mental state will recover.  Her mood seems to be more stable although her ‘friends’ continue to visit.

I’ll just take it one day at a time…

Kedgeree recipe

Ma and I have been making Kedgeree every Good Friday for a number of years.  For weeks before Easter she’d be checking for the cheapest smoked cod  (smoked haddock was a luxury and rarely if ever found at a supermarket).  Finally it would be bought and placed on the freezer until Good Friday.  This year Ma was 20160325_172924fixated on the smoked fish.  Once I had bought it, it was all about when we were going to cook it.

(Kedgeree is thought to have originated in India brought back to the United Kingdom by returning British colonials and is listed as early as 1790.)

Kedgeree

2 tablespoons of olive or vegetable oil
1 medium size onion, chopped
1 teaspoon curry powder (I add more)
1 cup of long grain rice (I use Basmati)
3 1/2 cups water (3 for rice; 1/2 for fish)
750g smoked gemfish, haddock or cod (we use cod)
3/4 cup milk
40g butter
3 hard boiled eggs; 2 roughly chopped, 1 sliced
1/2 teaspoon black pepper
1 tablespoon chopped parsley

Heat the oil in a large saucepan over a moderate heat and gently fry the onion until soft.  Stir in the curry powder, and the rice and mix well.  Pour in 3 cups of the water and cook at a simmer, uncovered, for 15 minutes.  If the rice gets too dry too fast, turn down the heat and add a little hot water. (It always takes me more than 15 minutes)

Meanwhile, put the smoked fish, the milk and 1/2 cup of water into a large frying pan over a moderate heat.  Bring to a boil and simmer for 2 minutes (I do more as I like to see the fish flaking).  Drain, peel off the skin and discard, along with any remaining bones.  Break the fish into large flakes.

As soon as the rice has absorbed all the water and is tender (I taste test), add the flaked fish, butter, chopped egg, and the pepper.  Stir well.  Garnish with parsley and the sliced egg.

Enjoy!!

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!