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.

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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.

Gadgets and gizmos that make life easier in the bedroom

Over time I’ve discovered an array of different aids that make life easier around the house.  Ma has mobility issues because of her arthritis, osteoIMG_9818porosis, frozen shoulders etc etc.  She users her wheeled walker (Cyril) to get around the house and a wheelchair when we go out.

Bedroom Aids
Ma spends most of her time in her bedroom sitting on the side of the bed reading or listening to the radio.  To make it easier to get up and down and out of bed, we have an ‘L’ shaped bed-rail that goes under the mattress.  Ma wouldn’t be able to get up without it.  It’s very sturdy.  I’ve seen these at Bunnings or you can get them from ‘mobility’ shops.  I have also a different design of bed rail at Aldi (usually only once a year).

As Ma suffers from incontinence a waterproof pad on the mattress is a must, just in case of accidents.  The Conni brand makes a bed pad that holds 2,000 mls for up to 8 hours.  That’s huge peace of mind!  When Ma had a UTI she was running like a tap and they were my saving grace.  They are also machine washable.  I ordered one online but I know chemists stock them and I got my second one at Aldi.  They also manufacture pads for chairs.

Ma’s hands are crooked with arthritis and she hasn’t much strength in them at all.  She started to have difficulty turning on and off her bedside lamp.  I now have a touch lamp in her room which is so much easier.  Much as I don’t like Bunnings, they do have a good variety of lamps and railings and a few other aids.  The only downside of the touch lamp is the bulbs don’t last very long because they have to be ‘dimmer’ bulbs.

With her delirium/dementia her sense of time has been affected.  She finds it difficult to read her clock radio and even though she listens to the news, she doesn’t always hear the time.  I’d ring her at 11am and she’d think it was 3pm.  She would get very upset.  I found a great talking clock at Vision Australia.  She can push the button on the top and the clock tells her the time.  It also has a very clear face which she can easily read.  She loves her clock!

This winter she couldn’t stand the weight of her woollen blanket.  It was just too heavy for her to pull up.  I got her a couple of light weight fleece blankets which keep her lovely and warm.  The only downside is the cats love padding on them because they are so soft and cuddly.

These items make life much easier for Ma and help to ensure that she keeps some of her independence.

Tips:

  • Mobility shops have a great array of aids that make life easier, unfortunately they are also usually quite expensive, so check your prices.  Aldi have some great items from time to time and Bunnings stock a few things also. 
  • Conni bed pads are fantastic.  They are also good for people who sweat excessively.
  • Search for ideas on the net:  ‘mobility aids’, ‘independent living’ will give you a good selection to start with.  Chemists usually stock some items or can probably order something in for you.

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.