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.

 

Advertisements

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.

20160705_152123

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…

When day is night and night is day

Night times are turning ‘interesting’ in our house.  I have noticed for a while now that Ma is finding it difficult to tell night from day.  Daylight saving just adds to the confusion as it’s so dark in the morning and so light in the evening.  A nap in the afternoon just makes her think it’s now morning and time for breakfast.  Each night it’s different.  Some nights she’ll sit up all night on the side of the bed.  She won’t tell me why, she just says that she feels more comfortable.  I’ll walk in to find her slumped backwards or sideways or even with her head in her lap.  Other nights she’ll sleep through other than toilet stops.  From what I’ve read and from what I’ve been told, it’s more than likely that Ma is experiencing what is called Sundown Syndrome or Sundowning.

Sundowning or Sundown Syndrome is when people with dementia become more confused, restless or insecure late in the afternoon or early evening.  It can be worse with triggers such as a move or a change in their routine.  People suffering from sundowning can become demanding, restless, upset, and suspicious, disoriented and even hallucinate, especially at night.  Attention span and concentration can become even more limited.

Nobody knows what causes sundowning, although it seems to result from changes that are occurring in the brain due to dementia.  People with dementia tire more easily and can become more restless and difficult to manage when tired.

Sundowning may relate to lack of sensory stimulation after dark.  At night, there are fewer cues in the environment, with the dim lights and absence of noises from routine daytime activity.  Ma’s perception of night and day has really diminished.  At 2am in the morning she will think it’s time to get up even though it’s pitch black outside.  Lately she has wandered down to my room crying.  She thinks she is alone in the house and wants reassurance that I’m still there.  (I really don’t know where else I’d be except home, but that’s the nature of the confusion).  She also says she’s cold (it has been very warm lately, even of a night.  I’ve been sleeping with only a sheet.  She wants a poncho on or her winter dressing gown.

As the dementia worsens and the sufferer understands less about what is happening around them, they may become more frantic in trying to restore their sense of familiarity or security.  It is said that the person becomes more anxious about ‘going home’ or ‘finding mother’ late in the day which may indicate a need for security and protection.  They may be trying to find an environment that is familiar to them, particularly a place that was familiar to them at an earlier time in their life.  Ma at her worst, will talk about going to the ‘other house’ which is exactly the same as ours but somewhere else…. But she doesn’t know where.  She is always convinced there are other people living in the house with us. I always show her the locks on the windows and doors and tell her about them.

A person experiencing sundowning, may be hungry, uncomfortable, in pain or needing to use the toilet, all of which they can only express through restlessness.  Factors or triggers, as I like to call them, that can have an impact on behaviour when the sun goes down include:

  • Fatigue – Ma just doesn’t sleep very well and tends to drop off during the day sitting up. This can go on for days until finally she is so exhausted she sleeps.
  • Hunger – I’ve yet to find this a problem with Ma. She likes her food.
  • Infection – such as a urinary tract infection. A sudden change in behaviour could indicate there is an infection.  In my experience the regular symptoms of a urinary tract infection ie. regular need to urinate, temperature and burning when urinating don’t apply to Ma, her confusion just increases dramatically.  She will get her possessions and pack up her wheeled walker and go off around the house.
  • Pain – There are many causes of pain such as shingles, neuralgia etc. Pain can get progressively worse through the day. Ma suffers from chronic pain due to arthritis.  After years of taking very strong pain killers (opiates) her system can no longer handle them due to her fragile state.  Since decreasing her pain medications and starting her back on an anti-inflammatories her pain seems to be back under control without the heightened confusion. She also takes Curcumin with black pepper, a natural anti-inflammatory suggested by her urologist.
  • Medication – Consider whether restlessness is due to medication eg medication may be causing ‘restless’ legs or cramps; diuretics may be causing incontinence, some medications may cause agitation.
  • Constipation and/or dehydration can significantly affect behaviour. This is certainly true in Ma’s case.  If she hasn’t emptied her bowels, her confusion increases.  I keep a strict eye on her bowel movements as she suffers chronic constipation and needs laxatives every day to keep on top of things.  She doesn’t like drinking either, except cappuccinos or brandy… Trying to get her to drink any other fluid is an uphill battle.  Again, her confusion increases when it’s a hot day and she won’t drink.  A glass of fluid (of the right sort) usually decreases her confusion.
  • Extreme temperatures such as a heat wave. Ma’s brain can’t seem to tell her when she is getting overheated.  She will sit in a jumper when it’s very hot with her body perspiring but she still doesn’t think she’s hot.  Her confusion will increase and it’s only when I get her cooled down that her confusion decreases.

Where to begin

Always discuss concerns about change in behaviour with their doctor, who will be able to check out whether there is a physical illness or discomfort present, and provide some advice.

Arrange for a thorough medical examination and discuss the person’s medications with the doctor. Sometimes changing the dosage or the time that medication is given can help relieve the symptoms. The doctor will also be able to advise if there may be undesirable side effects of medication.   Reducing some of Ma’s strong pain medications has led to a marked reduction in her confusion.

Suggestion that may help

  • Early afternoon rest – If fatigue is making the sundowning worse, an early afternoon rest might help. Keep the person active in the morning and encourage a rest after lunch.  Ma drops off to sleep sitting up during the day.  I try and keep her stimulated with activities but sometimes I don’t win.
  • Avoid physical restraint – Don’t physically restrain the person. Let them pace where they are safe. A walk outdoors can help reduce restlessness.  I hear Ma get up and listen to where she is going.  I always breathe a sigh of relief when it’s the toilet and I get up and help her.  It’s when she ‘travels’ further that I start to worry and try to find out where she is going.
  • Encourage comforting pastimes – Some people are comforted by soft toy animals, pets, hearing familiar tunes, or an opportunity to follow a favourite pastime. Nightlights or a radio playing softly may help the person sleep.  Ma finds great comfort in the cats.  The old boy, Colonel Gadarffi like to cuddle and smooch.  I sometimes go in to find her hands lying on him as she sleeps.  Ma likes to listen to the radio which is push button, so easy for her to operate.  She can’t work the television so if she wants to watch a program I turn it on and off for her.
  • Minimise noise and lights – Consider the effect of bright lights and noise from television and radios. Are these adding to the confusion and restlessness?  Ma has her bedside light on all night.  I also have a sensor light in the hall and keep the toilet light on all light so she can see where she is if she gets up.  My bedroom door is on the way so she wakes me up when she goes past.
  • Check for objects – clothing hanging on doors, doonas folded over, pillows doubled up, curtains and mirrors, can all be misconstrued.  Ma will think they are people and refuse to enter the room or sleep in the bed as she thinks there is somebody already there.
  • Avoid upsetting activities – Try not to arrange baths or showers for the late afternoon if these are upsetting activities. The exception may be the person who is calmed by a hot bath before bed.  Ma sometimes wants a PTA (which is a bit of a rude acronym for ‘girl bit’, bosom and armpits) rather than a shower.  Usually when she is really tired or she is feeling cold.
  • Consider medication – Some people may need medication. This will need to be discussed with the doctor.  Ma was on regular strong pain killers and Mogadon for many years.  Her confusion has decreased with the reduction of these drugs. We are reluctant to use any medication at this stage.
  • Stuffed toys, pets, familiar music or a favourite activity can help comfort and distract the person.  Ma has taken a liking to documentaries on television.  At the beginning of the week I read through the television guide and highlight what I think she will like.  This makes them easier to find.  I always send her stuffed cat with her when she goes into hospital or respite.  I also play her favourite music in the car on the way to appointments and in the house.  Dragging out the cook books and discussing recipes and what we are going to make goes a long way in distracting her.
  • Daylight saving seems to wreak havoc with Ma’s internal clock.  Because it is still quite dark at 6am and still light at 7pm she gets very confused.  She has told me she doesn’t like these 24 hour days!

A lot of the information I’ve placed on here is from the Alzheimer’s Australia website which has a lot of useful information.

For wonderful support and advice try the Memory People™ on Facebook.  It’s for patients, caregivers, advocates, family members and professionals, seeking comfort and understanding, and receiving support and helpful information.

Lessons learnt in respite care

As I’ve found out in the past, nursing homes are never going to deliver the same care that you do. Unfortunately this is something a caregiver has to accept, as hard as this is.  The reason why there is a couple of year’s gap between Ma’s stays in respite care is because of the bad experience she had the first time.  Hopefully with some preparation and preparedness your loved one’s stay in care will hopefully be uneventful.

These are some of the lessons I learnt and thing to be aware of from Ma’s couple of stays.

  • If you are going away while your loved one is in care make sure you allow a couple of days before going away to visit them and iron out any problems…
  • Make sure your loved one is having regular bowel movements. The staff assured me they logged (no pun intended) Ma’s bowel movements on computer.  Ma didn’t go for six days as they hadn’t written her up for a daily laxative even though I had informed them of her dosage and what she used.  Constipation can lead to confusion in the elderly so it’s important this is under control.
  • Make sure their teeth/dentures are being cleaned. I would usually wash Ma’s dentures when I visited her.  Ma said that the staff had only done this a couple of times (can’t prove or disapprove this because of Ma’s mental state) but she did came home with a sore mouth.
  • If they have an ulcer or any other medical condition that is usually seen to by a community nurse you will have to rely on nursing home staff to see it is dressed as you can’t access two services at the same time. Unfortunately on both occasions she’s been in care, her ulcer has suffered from not being adequately cared for.  Make sure you provide as much detail as possible on its care.  We had to provide her special silver dressing but wasn’t told this until the day she checked in.  Make sure you ask up front whether they require your loved one to supply their own dressings.  Take a photo of the ulcer so you have a comparison of how the wound is doing.
  • Ensure your loved one is being dried properly after their shower, especially under folds of skin. Ma suffers from chaffing under her breasts and stomach.  I asked them to ensure this was done and provided a zinc and castor oil cream to treat any sores.  When I got her home, I found red welts where they hadn’t dried her properly or used the cream.
  • Make sure they are getting their proper medications. Going into care you have to use the doctor the nursing home has.  This doctor may have a different idea on whether your loved one should be on the same medications.  Ma ended up having her pain medication cut by the doctor at the nursing home as he thought he knew better.  She spent a miserable time in pain.  If you don’t think they are getting the right medications ask to see the list and speak to the assigned doctor if you aren’t happy.
  • Make sure you keep copies of all the paperwork including the application form.
  • Make a list of questions you want to ask:
    • What does your loved one need to bring?
    • What does the nursing home provide eg. incontinence pads, dressings for wounds, Panadol (I must admit that I ended up giving Ma her own to take when she wanted as she wasn’t getting pain relief)
    • Can they bring alcohol (Ma so loves a brandy)?
  • Have a look in the room they will be staying in. Are there mirrors that could cause a problem, depending on their mental state?  Ma still wonders how the lady is going she shared the room with…
  • What can you bring to make your loved ones stay a bit more comfortable? Ma had her big numbered clock, pictures of her kitties and her kitty calendar (sigh, I didn’t get a look in) as well as books, magazines, and munchies (the food wasn’t very nice) AND of course her brandy.
  • I’m sure there are plenty of other considerations that I haven’t thought of… feel free to add.

The lady in the mirror

The day before Ma is due to go home I arrive to find Ma sitting in a chair with a towel on her leg, with the ulcer, and an ice pack on the floor beside it.  She tells me that an aide has ‘bumped’ her leg on the wheelchair foot plate getting her out of the chair.  There are big bruises and her leg is swollen.  I try and find somebody to tell me what has happened and what the damage is.  They have another story, saying Ma has knocked her leg on her wheely walker.  They are going to dress her leg but after waiting for a half hour they decide to take her to lunch instead.  I don’t get to see her leg ‘undressed’ before I leave.

Day 19 – Escape at last.  Arrived at the nursing home to find Ma sitting next to the mirror with piles of her stuff everywhere.  She had tried to pack up ready to go home.  I brought her a coffee to distract her which she sat and enjoyed while I packed everything up.  Now and again she would nod to the ‘lady in the mirror’ and talk gently to her.  She told me she had become good friends with the ‘lady’ and that she’d miss her when she went home.  She mentioned how the ‘lady’ would wear everything that Ma wore and even had the same books Ma had!  When I asked Ma if the lady had purple hair like Ma did, Ma said she did not… Ma bid farewell to her new ‘lady friend’ smiling and waving as we took her out.

As we had no instructions on signing anything or doing anything besides taking Ma, we went to leave.  We were stopped at the door and were told we had to pick up Ma’s medications.  So we waited. The nurse came to say goodbye and I asked again about Ma’s ulcer and how her leg was after her mishap the day before.  He told me that her ulcer looked better and that her leg looked good. We hadn’t been home for an hour when the nursing home rang to ask that we return as they had forgotten to give Ma a box of medication that had been left behind… SIGH

Ma made it up the two flights of stairs better than I’d hoped and went straight in to say hello to the cats.  She was so happy to be home… I think only because of the cats.  She’d often tell me how much she missed them.  She has a small toy cat and photos of the kitties which she had on her bedside table while she was in care.  That night I made sure she got back on her bowel regime.  She was very very tired.

Unfortunately we were up and down more times than a bride’s nightie with her bladder.  I was a wreck come morning being out of practice.  Her bowels also decided to co-operate to great fanfare unfortunately soiling her pants in the process.  The next night was much better even though we had a midnight bowel movement.  I think she’s making up for lost time! Thank goodness we weren’t up as much as the bowel pressure on her bladder had been lessened.

The community nurse came to change her ulcer dressing and I was absolutely horrified and angered to find that she had a new ulcer and that the other ulcer had deteriorated.  And yet nobody saw fit to tell me even though I specifically asked.  They had even taken photos when she’d arrived so it’s not as if they didn’t have anything to compare it with.  How can they not tell you there is another new ulcer? AND that the other ulcer is so much worse?

I look to the future and I am afraid.

Ma’s name is down at the nursing home just a couple of blocks from here.  I am not working full-time but am using carer’s leave, for which I will be forever grateful for, while we wait for a vacancy.  When Ma was in respite care I tried to make sure that she would be looked after.  I wasn’t happy with her care.  Even though I wrote notes to ensure her special health requirements were met AND even though I talked to the staff including the registered nurse, she came out with bruises on her legs; welts under her breasts and ‘apron’ where they didn’t dry her properly and put cream on; constipated; and with new and deteriorated leg ulcers.  Everyone I talked to at the home said they were listening but they weren’t.  I only saw the aide put the brakes on Ma’s wheelchair once when they were putting her into it.  Her legs got bruised because they would push her chair into the table but not check where her legs were when they pushed her in.

So what now?  I rang the nursing home she wants to go into and where she has been on a waiting list since September.  The tell me to ring back every two weeks because when you don’t keep ringing, you drop down the list (thanks so much for telling me this!).  I’m now petrified about placing her into permanent care.  If a reputable nursing home can do that much damage in three weeks how am I supposed to trust that she will be well looked after in the nursing home of her choice?  This is the home where she also had problems.  A few years ago when she spent five days in their ‘care’ she ended up in hospital with an infected leg ulcer.  This was the first time we had tried respite care and I’d been too scared to try it since… until this time.

So I’m left with more questions than answers.  Do I keep on caring for her until my leave is exhausted and losing my sanity or do I do the ‘selfish’ thing and place her in care; fingers crossed?  Will the nursing home she has chosen be any better… or worse?