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.

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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?

A respite from Ma?

My sister booked Ma into respite care a number of months ago (the waiting lists are several months long).  The way I’ve been lately, I knew I needed a break.  Not only for my sake but for Ma’s also.  As the date approached my stomach started tying up in knots.  Who was going to take her to the toilet the 4 and 5 times a night she sometimes goes?  Who was going to make sure she emptied her bowels regularly and wiped her bottom when she did so?  We have finally found a regime where she goes every one to two days.  Which has helped her confusion and has made her feel better.

I got her doctor to fill out the medical paperwork to which I added my notes as well as her medications list and medical history.  I also created another list of information containing problems that Ma encountered the last time she was in respite care several years ago.  These included her bowels and what I have done to keep them working; what triggers increases in her confusion and hallucinations; instructions on drying under her apron and breasts and the cream to use (which I supplied); a request to keep her walking rather than taking her everywhere in her wheelchair so that she keeps mobile (learnt that lesson from her last stay in respite); and instructions on how to care for her ulcer including the need to bag her leg rather than scrubbing it under the shower (yes, they did that last time she was in care which resulted in infection and the need for hospitalisation).

I was given the medical form to fill out and had to ring to ask who had to fill it out was it was titled Medical Officer’s Report; it had to be filled out by her doctor.  Doctors are busy, overworked people, I went through her doctor’s report and added my information to it plus her list of medications.  All of Ma’s medical file is kept at the house as the doctor visits her there.

Every time I talked to staff or the Manager at the facility they added information or told me of something else that had to be done.  After ringing the Manager about the Medical Officer’s Report I was told I had to pick a doctor off a list for Ma which I did.  Next time I rang to ask a question I was told that I needed to contact the doctor and ask them to be Ma’s doctor while she was in care as she couldn’t have her own doctor.  The first ones I rung said they weren’t taking any new patients (why are they on the list I asked myself?).  Others didn’t ring back.  I finally got a doctor and emailed Ma’s medical information, only to be informed when I rang that they couldn’t print it and wanted it faxed.  After faxing the information they told me they already had that information but wanted a different form which the lady filled in over the phone.  The evening before Ma was due to go in I opened an email from the Manager asking me whether I had organised with the doctor to admit Ma on her arrival… it was at this point I gave up as I knew the next day was a public holiday and I wasn’t going to be able to ring the ‘new’ doctor.

The day after the public holiday I rang the facility, after organising the doctor, only to be told I was missing another four forms that needed to be filled in.  There was no sign of the form I filled in over the phone.  At this point I broke down as I’d had enough.  Poor communication, nobody rings you back and it’s all been my ringing them asking for information.  The lady I spoke to turned out to have some empathy and was very nice to me.  So after spending 40 minutes filling out paperwork which involved questions about Ma’s children, growing up, marriage, work etc we were ready to go.

Day 1 – On arrival we are taken to Ma’s room which has a lovely outlook on a garden.  The room is very sparse and reminds me of a hospital.  There is a large mirrored wardrobe door opposite Ma’s bed which worries me knowing Ma’s problems with ‘visitors’.  Different people come in to introduce themselves… the registered nurse, aide, social activities person (SAP).  I talk to the nurse about Ma’s bowels; making sure she is dry under her sagging bits; and not showering her ulcerated leg.  I am informed I need to supply all of Ma’s dressings including pads, dressing packs etc.  Nice to be told now!  I also ask about Ma being allowed her brandy of a night time.  The SAP informs me that residents have a big fridge where their alcohol is kept and can have two drinks a day.  They also have happy hour on a Friday.  She says she will put Ma’s stuff in the fridge… it’s still in her room on day 6 of her stay with the first bottle being empty.  The social planner we were promised by her has also not made an appearance.  Ma is in high care so she has a buzzer for a nurse so she can get help to the toilet etc.  I leave her for her first night, worried and upset.

Lessons learnt

• If you are going to put your loved one in respite care for a break make sure you document all of their health history backed up by their doctor if you can.
• If you are going away allow a couple of extra days so that you can see how they settle and sort out any problems such as their medications and any health issues that need careful treatment. They say they are listening but they aren’t.  This makes it very hard to trust your loved one to their care.  Take the time to make sure things are being done properly.
• Try to get instructions in writing. Make a list of questions you want to ask.  I now know the things to look out for but I didn’t before I placed her in respite.
• Talk to your loved one and make a list of the most important things that need to be considered for their sake as well as yours.
• Use their time in respite to assess the facility in case you need to consider permanent care. How do the staff treat the residents?  Are the staff attentive to questions from residents or are they palmed off and talked down to.  Do the staff listen to your concerns?
• Find out what the facility does and doesn’t supply.

The gradual disappearance of Ma

Today I placed Ma in respite care for three weeks.  I walked out of the facility bawling my eyes out, feeling like a failure and that I’d let Ma down.

I no longer like the person I’ve become.  I don’t recognise myself.  I’m a cranky, horrible person with a short fuse and I can’t seem to stop being like that.  It’s like I’m standing outside of myself watching myself having a breakdown while telling myself to stop… but I don’t.  I’m mean to Ma and have lost the patience I once had.

I look over the last twelve months and look at the parts of my Ma that I have lost.  The thing about Ma’s ‘diminishment’ is that it is a gradual insidious thing that you don’t really notice until you look back.  When I look back and compare the then with the now it breaks my heart.

Ma used to love reading Mills and Boons.  The house is choc a block full of them.  Over the years I’ve picked them up from fetes and bought her new ones each month.  She collected books by her favourite authors.  Now she no longer reads them.  Not even her favourites.  She now reads and re-reads and re-reads her complete collection of Kerry Greenwood books.  She fixates on them, counts them, hides them and writes in them, then tells you it’s a new book she hasn’t read before.  I’m not sure how much she even takes in.  She will sit for hours pouring over the pages of her books.

Ma can no longer turn the stove on or make herself a hot drink.  She can’t prepare herself food.  The other morning I found her eating chocolate because she had no other food and didn’t know the way to the kitchen (I prepare all her food and mostly serve it in her bedroom). She still insists on telling me she doesn’t like chocolate…

Her tastes have changed… for the last few years she has told me she doesn’t like spaghetti (her recipe) so I’ve only made it for myself.  In the last few months spaghetti and pizza are two of her favourites.  Dessert is still top of her list… that hasn’t changed!

We have gone from small ‘drip tray’ incontinence pads to the heavy duty pull-up pants that she wears day and night.  I look back at her transition into the pull-up pants and remember how frustrating it was finding the right product.

Bowel accidents are not uncommon.  I’m now so anal about her bowels (sorry) it must drive her to distraction.  It’s a fine line getting it right.  Anything over two days and her confusion and hallucinations start to increase and her stomach distends to epic proportions.  Her bowel also starts pressing on her bladder which means we’re up 4 times or more a night and she leaks like a sieve.

We now live with Ma’s ‘friends’.  I made Lammos (Lammingtons) for Australia Day and put her in charge of coconut covering.  When she came out for dinner she noticed that none of the Lammos had been eaten and said, “Didn’t anybody like my Lammingtons?”  As there is only the two of us in the house most of the time it’s always interesting when ‘the others’ make an appearance… or won’t eat my Lammos!

Her strength and walking has deteriorated so that she barely shuffles along on her walker. I now allow 20 minutes to get her out the door and down the stairs into the car.  She is so hunched over it’s like she is bent double.  Most days she doesn’t get dressed preferring to stay in her nightdress and dressing gown.

She finds it difficult to make decisions over what to wear or eat.  She just lets problems slide.  It’s like she’s in a bubble where nothing can penetrate.

Ma used to be able to find her way around the house.  Her bedroom was, her bedroom.  It’s now somebody else’s bedroom.  The house doesn’t belong to her, nor does her clock radio.  The house she has lived in for over 50 years is the house she has only been in for a few weeks.  The town is unfamiliar and her sense of direction has disappeared.

People are starting to slip from her memory, especially those she doesn’t see very often.  It’s sad having to explain who her granddaughters are.  Memories are eroding and being replaced with different ones.  Her new reality of being nearly drowned and burnt during her last stay in hospital in September stays with her even now.

I think part of my anger is over the loss for the Ma I once had.  I’m losing her slowly but surely.  Our relationship has been changed forever.  I hate being strong when all I want is my Ma to make everything alright.