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.

 

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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…

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?

Beware the cortisone injection…. maybe

Ma spent the night sleeping in the electric recliner.  I heard her trying to coax a cat to come sit with her but they weren’t giving up her bed!  I got up twice with her to the toilet both times she wouldn’t talk to me.  Obviously I’d done something wrong again, but this time I didn’t know what.  I’d let her sleep in her chair without too much fuss thinking she may get cold and seek her own bed.  I forgot that I got my stubborn gene from her!

This morning she spent an hour just sitting in the chair and staring into space.  She asked me if I’d help her pack up her clothes and I just asked her if she wanted breakfast.  She ate a good one, and is now in her bedroom busily going through her drawers and pulling things out… looks like ‘we’re’ packing again.  I’m not saying much, just leaving her to it.  Her radio is on and I’m hoping it will distract her.  She hasn’t taken her medications and her short term memory and confusion is very much at the fore.

I’ve managed to avoid discussing her packing and have now got her a cappuccino, Ma’s favourite.  As I hand her her coffee she tells me she is worried that Nala the cat has been chased by a dog that’s in the house…. After assuring her there’s no dog, I walk away and leave her to her coffee and packing with the ever loyal Nala.

The in-house respite lady is half an hour late and when she gets there I can’t wait to get out the door for an hour of freedom.  I cruise the Op Shops and catch my breath.  When my hour is up I open the door to be met with a foul odour.  She has soiled herself and tells me she’s cleaned herself and has fresh pants on… time will tell whether that’s right or not, she won’t let me shower her or check.

She asks me for her purse which I don’t have and then calls me a thief and that I have her purse and that this is not the first time I’ve taken her money from her.  I also apparently have her shoes in my room somewhere.  While she was on the toilet apparently somebody shut the door on her room where all her things were.  Yeah for respite and my hour of freedom…

She is now putting on her shoes and I’m waiting for her next move… I’m going to have to stop her trying to get out the door which is going to be interesting.

Sigh, ok so it’s been a not so great afternoon… Ma got both doors open and took Cyril (her wheely walker) out onto the verandah and then tried to take him down the stairs.  All with me beside her telling her she couldn’t… consequently Cyril ends up at the bottom of the stairs with all her packed up important stuff strewn around.  She then tries to pick it up and decides to sit down on the stairs….

So, when Ma ends up on the floor there is no way she is going to get up by herself or by me.  She is a dead weight with two frozen shoulders.  I ring for an ambulance (I really hate taking them away from important stuff just to pick Ma up).  I always feel guilty getting them out to pick her up but what other choice do I have?  Two beautiful paramedics arrive and get her up with me helping.  They check her vitals which are normal (of course) and give me a lecture on where to draw a line… I give my usual explanation of no care ‘cause there’s no vacancies which is why I’m virtually a full-time carer.

When they left I showered Ma and got her into her bedroom with some cajoling and promising I’d sleep with her tonight.  I’ve also given her a brandy.  She is acting more ‘sane’ although time will tell…. Stay tuned….

Being a carer makes it easier to be taken advantage of…

Why do I get the feeling that because I’m Ma’s carer and fit my whole life around her wants and needs that people, aka service providers, want to take advantage of that?

I have had a couple of ‘run ins’ with Ma’s community nurses over the last few months all stemming from a complaint I made as I didn’t like that the assigned nurse wasn’t following the protocol set down by the Ulcer Clinic.  I used to come home from work to find her dressing was too tight which I re-bandaged.  As Ma has had her ulcer for over three year’s now I’ve learnt to be proactive about its care.  Too often we have had it go ‘pear shaped’ due to changes in her dressing made by a nurse who thinks she knows better then the experts.  (Nurses don’t have the authority to access the ‘golden dressings’ that doctors or podiatrists do so you can get locked into a never ending situation of inadequate dressings.)

The last straw was when I returned home from work to find the nurse had helped herself to a bag on the table which I had some items in so, she could use the bag for the dirty dressings.  My stuff was dumped on the table!  Really? Would you walk into somebody’s house and help yourself to somebody’s things? What was in the bag wasn’t important, the fact that she had helped herself, was.   I rang and asked the ‘boss’ to have her removed, I even said I was happy to take over her dressing changes.  In the past the nurses have always asked me to do her dressing if there is a public holiday or they are too busy.  They have never shown me how to do her dressing.  So, after my complaint and questioning of the nurse’s conduct the ‘boss’ turns from being ‘you need to tell me what’s going on’ to ‘oh no, you must be mistaken’ and ‘I find that very hard to believe’… in other words calling me a liar!  I offered to take over her leg completely but was then asked if I was cancelling the service!!!  The service continued and hey presto the nurse started following the protocol set down by the Ulcer Clinic and deferring to me when she wanted to make a change (roll of eyes).

So, now that I’m at home nearly full-time I was asked to do her leg last Friday because they were busy.  I’m now asked to do Monday because it’s a Public Holiday and now they also want me to do Wednesday because they are sooooo busy!!!  Really? Why is it my problem?  I did do Ma’s leg on the Wednesday because I find it improves when I do it as I find the care the nurses take is ‘slap happy’ at best.  It wasn’t always like this.  The good nurses we had have all left due to changes…

Public holidays mean care is only provided to people without anybody.  That’s by respite as well as community nurses and Ma’s 1.5 hours of house work she gets per fortnight.

Ma was allowed home from the hospital because I was there to look after her yet I get no extra help or assistance.

I keep getting told that I need to look after myself; that I’m important too.  If I’m so dratted important, why can’t I get more assistance?  Carer’s Week is coming up, there are pamper days and BBQs etc for carers being held.  How does a carer get the time off to go to these things? I want to cover the grey on my head and get my purple streaks back but that needs 3 hours! God bless my hairdresser who gave me a mineral powder that covers my grey, for free I might add, delivered through my sister.  Seeing the grey in the mirror and the lack of purple was enough to put me into a ‘funk’.

I’m very grateful I’ve been able to access 4 hours emergency in-house respite for 5 weeks so I can go to work for a few hours.  Why is it so hard?  Why do I feel like I don’t matter or Ma doesn’t matter?  Some days I just want to say ENOUGH! But, I can’t…  and so we continue…

Please don’t call me wonderful!

Over the years I’ve had many people say to me how wonderful I am to look after my Ma.  They are amazed I do so and I’ve even had people suggest that my life would be much easier if I just put her into care.  If they knew me and my relationship with Ma, they would never suggest such a thing.  Ma and I made a pact many years ago that we would cope for as long as we could until I couldn’t handle her  physically or her mental state became unstable.  I will always remember her caring for my Dad in his declining state.  It was also suggested to her that she give up caring for him, but she did until his end.

Sometimes I yell and say horrible things; sometimes I just want to run away, just to have 24 hours of freedom where I don’t have to care for anybody else’s needs but my own.   Sometimes, I’m hell on wheels, filled with so much anger and frustration that I could scream the house down.  Sometimes I feel very much alone and the burden grinds me into the ground so that I feel like I can barely function.

Sometimes, the black dog comes to visit and accentuates every problem into an insurmountable obstacle.  The black dog especially likes to visit on my birthday.  My birthdays, especially the last few years, have been horrible.  I usually take time off work for that reason.  In the lead up to it I can feel myself spiraling downwards into a pit of deep despair.  I start grinding my teeth, having headaches and my temper frays BIG TIME.  I cry at the drop of a hat and just want to crawl into a corner and disappear.  This year was especially bad.  Ma’s mental state was especially challenging with her even forgetting my birthday on the day.  Oh woe is me!  At the time, I truly just wanted to go eat worms! As anyone who has suffered depression knows, once you climb down into your deep dark hole, it’s not so easy to climb out.  Nothing penetrates your walls except negativity.  I could have the nicest thing in the world happen to me and it simply wouldn’t penetrate.  You can self talk all you like, the wall won’t come down until it’s ready. Luckily it did, but I did start to wonder whether I would ever feel happy again.

I look at other people’s lives and what they have to deal with and realise what I’m dealing with is pretty small in comparison.  If everyone’s problems were placed in a pile, I’d probably still pick up the same ones.

At the end of the day, I’m just me.  Trying to do the best I can; wanting to do better and feeling I fall short.  Some call me a martyr, an angel, or a saint.  I’m none of these.  Ma is my ma, she gave me life, and made sacrifices to give me the life I have today.  I’m grateful, but I also have an abounding love for her.  I don’t do what I do for her out of duty.  And when I get a glimpse of my old Ma and we laugh together, it makes it all worthwhile.  Calling me wonderful, doesn’t make me feel good, it makes me think of my short comings.