When I’m sitting beside Don’s bed he usually drifts in and out of sleep, sometimes has to be woken up for his meals, might ask what’s on the news but then shuts his eyes within a couple of moments when you try to tell him.

On Sunday I was sitting beside the bed half watching the TV and half skimming the newspaper.  He seemed asleep.  Then, without moving and without opening his eyes, he muttered, Nobody talks to me.

What do you mean, nobody talks to you?  I asked.  Don’t the nurses ever talk to you, is that what you mean?

He was motionless for quite a while, with his eyes still shut, and I thought he had gone back to sleep when eventually he said, You don’t talk to me.

I realised he was right.  I said, No, I haven’t been talking to you, you’re quite right.  I sit here and do the Sudoku or watch the news or read the paper, and I don’t talk to you.  He gave a tiny nod, so I added, So will I tell you about church this morning?  He nodded again.

He kept his eyes shut but I told him things such as, that the sermon had been fairly pedestrian even though it was on doubting Thomas, that there had been a couple of children there as visitors who took great pleasure having the job of collecting everybody’s cups after morning tea and in fact had been standing hovering and pressuring people into swigging the last dregs so they could rush off to the kitchen with the cups, that there had been one hymn nobody knew and one that I thought was a dirge and some very good ones, and that Shirley and Joy had asked after him.

He didn’t respond in any way, so after a while I said, So what do you think about everything I told you about church this morning?

After a long pause, eyes still shut, he said, I didn’t hear a word.

All the same, it was very cheering to me that he wants a conversation and wants people to talk to him.

Since I bought a deluxe wheelchair for our outings, staff have been putting him into that whenever they get him up and take him to the common room.

Wheelchair

But that chair is really only for outings away from the nursing home.  It fits into the back of the taxi – just! – and is bearable for a couple of hours but it is made primarily for convenience, not comfort.

I have protested many times to staff that this chair is not suitable for getting him up regularly in the home, and they need to be finding something better – not sure what you call it, different names such as a tub chair / air bed / pressure relief chair – for him, when he is not leaving the building.  They would go all vague and tell me that those are not supplied by the home but are the personal property of other residents who may no longer be using them, or who may have indicated that they can be used by anyone.  And apparently nobody is sure which ones might be the right size for Don.

In the end, I decided Don’s comfort is more important than arguing about who should provide what, so I got him a new chair.

New chair

It has transformed the days he gets out of bed.  Instead of pleading to be put back to bed after a couple of hours, he is quite happy to stay in the chair all day without complaint.  It’s as good as being in bed, as you can see.

All the same, I don’t think something this important should be left up to whether the resident or the family can fork out the necessary $4000.  It should be a normal provision by the facility.

Here we are almost halfway through January and I am still getting myself organised for the year.

Christmas went well at the nursing home.  They used to provide Christmas lunch for carers and visitors, provided you put your name on the list well in advance, and there was a wonderful feast of ham and turkey and mountains of food, and Christmas pudding and pavlovas and a whole smorgasbord of goodies.  However, as sometimes happens, people make a welter out of a good thing, and so they had people turning up who had not notified beforehand, including family groups of up to 16!  Consequently the last time they did it this way, they not only ran out of food but also places at the tables.  This was three years ago, and it was a year we could not get Don home for Christmas Day as we usually did, and we were some of those who ended up having to sit in our own room with a last-minute sandwich rustled up by the kitchen staff.

Now they have a firm policy of no extra meals on Christmas Day, but they put on a big shindig a couple of days beforehand, on a come-one-come-all basis.  They have an afternoon with entertainment, Santa, a marquee in the grounds with extra seating, and staff serving lemonade and finger food until everyone is practically waddling.

Christmas

It went on for a couple of hours and I thought Don would be asking to taken back to his room as he normally does but this time he wanted to stay until the end.  It was really well done and very enjoyable and the singer was excellent and got everyone involved.

You can see his hair needed cutting and in fact that did happen just the week after Christmas when he finally said it was too long.  Up until then they had been trying to insist on getting him to the hairdresser but he was rather stubborn and said he wanted to grow his hair long.  They wanted me to agree to an appointment and I just said, If he wants to grow his hair long what is the harm in that —  it’s his decision.

This question of empowerment versus disempowerment comes out in so many small ways.

Don at Christmas

New Treatments

The more I read about MS, the more optimism I have for anyone who is diagnosed today.  The beta interferons and other medications that relapsing-remitting sufferers take regularly, are apparently being developed at the rate of knots and are increasingly effective.  Not only that, but there are strong indications that lifestyle changes, in particular diet, can dramatically affect the disease.  And now I am reading of new approaches that are effective for primary progressive MS, which we have been told in the past is completely untreatable.

Sadly, I think these new breakthroughs may be too late for Don but if there is even a small chance that he can benefit from any of it, we will give it a try.  I am presently checking out dietary changes that seem to be working for people, but they are quite drastic and I am not too sure how to implement them in a nursing home.

More details later.

Audio Books

Vision Australia (used to be the Royal Blind Society) sends us talking books regularly.  We normally have up to four at a time.  Trouble is, it’s hard to know what will interest Don enough so that I can leave the book running when I leave and he will still listen to it.  I can request titles but usually they just send a selection, based on a questionnaire of interests and preferences that we filled in ages ago.

Currently we are listening to “Buster” which tells the true story of the dog Buster who is a service dog with the Australian Armed Forces and was trained to sniff out bombs or explosive devices and has apparently been responsible for saving dozens of lives in Afghanistan.  I’m finding it interesting and was surprised when Don got a bit irritated with me putting it on while I’m there, says he isn’t interested in it.  So it’s hard to predict what will grab his fancy.

But a friend recently lent us a book – an actual book, with pages, not an audio book – called “A Carefree War” written by our friend’s friend Ann Howard.  It tells the story of children who were evacuated from the cities in Australia during the Second World War, and the time they spent in the country during that period.  I read out bits of it to Don and he was completely fascinated.  Largely because we had no idea that so many of the places we have lived, had children or families coming to live during the war.  Even Glen Innes had 200 evacuees, and this was particularly astonishing because in the eight years we spent in Glen Innes, Don took a great interest in the history of the town and the area, and he never knew.

The title of the book comes from the sense that these children had a wonderful time living in the country with their grandparents, uncles, friends, or sometimes strangers, and many looked back on it as the happiest time of their lives.  The book was mainly made up of first-hand accounts and memories of those who had been evacuated as children.

I was surprised at how little I knew of the danger Australia was in during the war, especially 1942 (when most of the evacuations took place) or that, for example, bombs had been dropped on Katherine in central Australia!

I read vast tracts of this book for Don but it wasn’t enough, and so I checked out the website for the book to see if it had been made into an audio book but it seems not.  I think you can request Vision Australia to get books for you so I might try to do that.

Biotin

Biotin!  The great new wonder treatment for, not just MS, but for Permanent Progressive MS!

Up till now, no drug has been found that has any effect on Permanent Progressive MS – yes that’s right, NO drug has had ANY impact on PPMS.  So it is a fantastic breakthrough that there is now something on the horizon that might not just halt the progress of the disease, but actually reverse it.

I have left a message for Don’s neurologist to talk to him about giving Biotin a go.

But I am keeping my optimism in check and not getting carried away with hope.   The results for Biotin are “statistically significant” but that doesn’t mean everyone who has the treatment will get well.  In fact, the latest study I read says that 12% had significant improvement over the year, which of course is wonderful but it also means that 88% did not improve.

http://www.mdedge.com/neurologyreviews/article/110956/multiple-sclerosis/biotin-effective-treatment-progressive-ms

There are of course some side effects, which include “infections and infestations and disorders involving the nervous, gastrointestinal, musculoskeletal, and connective tissue systems”.  But these are things we would cheerfully deal with if the treatment was effective.

A reader of the blog has commented that her husband has been on high doses of Biotin for over a year but sadly, it has made no difference.

I guess with MS, we try anything remotely possible.  It is a horrible, horrible disease.

It’s all very well for me to wax lyrical about all the activities that Bayside puts on, but if they don’t get Don up then what’s the point?  I’ve pestered them somewhat about the need to get him up because firstly, he is missing out on some quite interesting things that are going on, secondly it gets him out among a whole lot of other people rather than just relying on me and the nursing staff for human contact, and thirdly anyone who spends their whole life in the four walls of one room is sure to go stir crazy.

I know it is a lot of trouble (the body lifter, two staff) but when I realised he had not been out of his room for 10 days (and that day had been when I organised an outing home, via the wheelchair taxi) I worked out with staff a routine that on the days they get him up for his shower (Monday, Wednesday, Friday) then instead of putting him back to bed, he was to stay up.  Everyone agreed and they wrote a note in the Day Book.

The next day being a Friday, I went immediately to the common room where a concert was in progress.  Not there.  Yes, they had got him up — and when I got to his room, there he was.

Out of bed but still not "out"

Out of bed but still not “out”

I tried to explain to staff that “getting up” didn’t just mean “getting up” – it meant “getting up and going out of the room”!

So I wheeled him down to the concert and then we wheeled outside and sat in the sun and watched some magpies that were hanging about, and Don was so much brighter and alert and content, it was heartwarming to see.

Out in the sun

Out in the sun

Magpie

Magpie

Just looking at the photo you can see how much more alert and interested he is by just being outside and seeing the world.

I’ve written before about the despair facing anyone with the progressive form of MS.  All the treatments and possible breakthroughs relate to relapsing-remitting MS. Now there is hope from a new treatment which not only seems to halt the progress, but even reverses the condition! It involves high doses of Biotin – which is “a vitamin that acts with other molecules to speed up a number of processes within a cell including myelin synthesis”.

In this trial, which took place in France, 154 people with progressive MS (55 people with primary progressive MS and 99 with secondary progressive MS) were either given three doses of 100mg of biotin per day or a placebo (dummy capsules) over one year. The trial was particularly interested in people with progressive MS that was not currently active, so participants had shown no disease worsening over the two years prior to beginning the study. Unusually, this clinical trial aimed to reverse disability, where participants’ disability scores went down over time, rather than the usual aim in progressive MS trials of stabilising disease where symptoms do not increase.

13 of the 103 people who received the biotin showed a reversal of their disability compared to none of those given the placebo capsules. While this seems a modest number of people who showed some benefit, this is likely due to the requirement of disability to be reversed in this clinical trial. Disability needed to be reversed at nine months and confirmed at one year, either through improvements in the global disability score (the EDSS or expanded disability status scale) or on the timed 25 foot walk time (a measurement of the length of time taken to walk 25 feet which tests mobility and leg function).

This appears in a recent issue of the publication “MS Research Australia 2016″.  Don seems to fit the requirements of the trial in that the disease has not worsened noticeably over the past two years, ie is regarded as not currently active, so I am cautiously optimistic that we actually have something that might work!

http://www.msra.org.au/high-dose-biotin-shows-promise-treatment-progressive-ms

I spoke recently with a friend in the low-care section who moved from another facility to ours.  She had no real complaints about the one she had left, except that it was some distance away and she could not connect with friends.

However she also commented on the wonderful activities programme we have at Bayside, which they did not have at the place she had left.  To give you an idea, last week was as follows:

Tuesday – Residents/Carers meeting.  Held bi-monthly, with someone from the kitchen, the laundry, the activities officer, and director of nursing, so anyone is able to raise any issue from missing singlets, to not enough beetroot in the salads, to questions about staffing or suggestions for improvement.

Wednesday – “High Tea” with silverware, best china cups and saucers, elegant serviettes — cream cakes, petit-fours, Devonshire tea and so on.  (I think this was to celebrate Older Persons Week or something, which had to be deferred from the official date because we had some cases of flu and had been in lockdown.)

Thursday – Concert with local singer presenting some “golden oldies” for everyone to join in

Friday afternoon 2-3 pm – the usual weekly “happy hour” with a beer or a glass of wine for everyone including visitors, spring rolls and dim sims, cheese and biscuits, with Rod on his guitar entertaining everyone and nurses persuading some of the more ambulant residents to get up and dance with them.

At present the craft group are busy making decorations for Halloween on Monday, which will be big, then the Melbourne Cup on Tuesday, which will also be full on, and the following week will be a special marking of Remembrance Day.

This is apart from the regular routine of tai chi on Mondays, bingo on Wednesday afternoons, a bus outing on Wednesday and Friday morning for those able enough, and so on and so on.

Don always has to be persuaded with great difficulty to join in, but my friend was enthusiastic.   “It’s all “go” here!” she said.  “I think it’s terrific.”

Staffing Levels

Yesterday I was speaking to a friend who had moved their disabled relative from one nursing home to another because they were dissatisfied, among other things, with the lack of adequate staffing at the first nursing home.  Apparently there was only one Registered Nurse (RN) in the whole facility, and that RN did not even have to be on site, they only had to be “available”.  My friends had moved to a facility with an RN on every wing.

I was rather taken aback, because in our facility of 130 residents there are four sections and every section has an RN on duty (with just one RN for the whole facility at night).  I asked my friend how they could get away with it, surely there is a legal requirement about staffing?

The answer, to my astonishment is that there is no mandated nurse-to-resident ratio in aged care facilities in Australia!  We have mandated staffing levels in kindergartens, schools, hospitals – but not aged care facilities!

http://http://www.agedcarecrisis.com/resources/staffing

Looks like we are well served by Bayside.