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?

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Disabled Access… really?

A few years ago, Ma started to struggle with her walking.  Every step was pain with bone grinding on bone.  Dad’s faithfull ‘wheely walker’ named, Cyril, became her means of getting around the house.  I bought her a horn so she could warn the cats to get out of the way and it became quite a talking point wherever she went.  Nobody can resist honking a horn!  He even came in handy when she was in hospital and couldn’t reach her buzzer, to get the nurses.

Around 6 years ago I tried to convince Ma it was time to get a wheelchair for when we went out. If we went out shopping she would only make it a few metres before it got too much for her, yet slow as she was, she persevered.

I then finished my degree and my graduation was in Orange.  I told Ma that I wouldn’t go to my graduation unless she was there.  I impressed on her that although it was giving up some of her independence it would mean that she would get to see and do more because the wheelchair could take her places that her legs could no longer take her to.  So, we purchased her wheelchair and every time we go out the wheelchair is her means of getting around.

I have lost count of the number of places that call themselves wheelchair accessible, but aren’t.  My pet hate are the specialists that are in heritage houses.  They usually have makeshift ramps that are never flush so it’s a big heave to get her over the ‘lip’.  The halls and doorways are all narrow so that I have to lift the wheelchair around corners (or maybe I’m just a bad driver).

There are only a few local restaurants I can take her to in our area.  I remember taking her to a restaurant that said they had a disabled toilet.  When I arrived they had put us downstairs and the disabled toilet was blocked off because they were having a function and the tables were across the access.

I’ve gotten quite good at manoeuvring over the years.  I’ve found that the best way with a wheelchair is to go backwards. My other pet hate are the shops that think it’s ok to pile stuff in aisleways so that there is no way you can get a wheelchair there.  I’ve lost count of the number of times I’ve had to leave a shop because I can’t get Ma where she wants to go.  Sadly it’s more common than what I’d like.  A lack of thought and planning, I’m sure mothers with prams experience a similar thing.

My biggest, most HATED thing though is the ignorant, arrogant barstool that thinks it’s perfectly ok to park in a disabled spot when they aren’t disabled.  I have had to take Ma home on more than one occasion because the last disabled spot was taken by a car with no disabled sticker.  I usually try and find a double car space so I can at least get Ma into her chair but sometimes that’s not possible.

Surprisingly, hospitals are the places that seem to lack adequate disabled spots.  The ground floor of parking stations have disabled spots but the other 8 floors do not, so again you search for a double spot.  I always allow myself extra time at hospitals because I know there will usually be a problem with parking.

The best thing about Ma’s wheelchair is she gets to go places now that she wouldn’t have been able to access with her walker.  This gives her more independence and makes life just that little bit better.  She’s very good at telling me I go too fast and where she wants to go.

Tips:

  • Getting a walker or wheelchair is a massive step for your loved one.  It’s just another thing that mean’s, “I’m losing my mobility”.  Make it a positive.  Ma can now access places she couldn’t before.  My Dad found himself useful again because ‘Cyril’ would carry the shopping into the house.
  • Always allow extra time to find disabled parking and for assembling mobility apparatus.
  • Purchase a good pressure relieving cushion for the wheelchair.
  • Make sure you label all mobility equipment, especially in hospitals.
  • When making appointments or going to new places make sure you ask about disabled access it saves you a headache when you arrive at your destination.
  • Some hotels have disabled rooms suitable for wheelchairs and other mobility equipment.