Weekend respite care turned out to be a huge success. My wife is already looking forward to the next time. She was so much more switched on and responsive when we got home on Sunday afternoon. Maintaining that level of engagement is now the major challenge for me. I have no knowledge of what the staff did at the centre apart from the personal care, provide 3 meals a day and a comfortable room with en suite at night- time. Whatever they do they do it well and at the same time respect the dignity and personal space of those people for whom they care.
On the other hand one of the personal care assistants who attends my wife at home has become persona non grata with my wife. The one who went over and above the requirements of the care plan started to become overwhelming and too much to cope with. Last week my wife refused to co-operate with her, and even when I asked the PCA to cool it down a bit she still couldn’t make any head way. The other PCA who attends is a quiet person and not at all pushy and my wife gets on with her very well.
I had an interview with my carer support worker last Thursday. It has been a couple of months since we had a chat and we reviewed where we are at in this caring role. I mentioned the problem with the PCA and Judy said she would take the matter up with the local council who provide the service. She was pleased to hear that my wife was having respite care for the weekend. Judy’s role is to provide support for me, not for my wife. This is done by making connections with training courses, day centres, council in home services, and extended aged care in the home (known as an EACH(dementia). This last one is the one we are still on a waiting list to access. We have been approved for the service but there is not enough funding or personnel to deliver the service to all those who need it.
During my free weekend I spent some time trawling the internet and found some interesting thoughts by other carers on the role of caring for our contemplation:
The carer unthanked a shoulder to cry on
One who loves life and the burden upon
Late nights and early morns without complaint
End of the day all the stress we clean the slate
Next day has dawned — same routine and problems we face
If you think we complain your right off base
We care for people less fortunate than us
If we could take the pain that would be a plus
All we have is love and care and extra hands
God for us has given special plans
From the words of ‘THE MAN’ we have insight
My yoke is strong my burden light
To look on our life as hard is so unfair
The one’s we care for have much more to bear.
by Dennis Two Eagles
On a Bad day I perform….
On a Good day I perform…
by Jennifer Pont
I have just now returned home after dropping my wife off for a weekend of respite care. This is is the first time we have had this offered to us by the people at Banksia Day Centre. It has all been a bit of a rush getting organised as we only received the offer on Tuesday of this week. My wife had a doctors appointment on Wednesday and he changed one of her medications. The doctor had to fill in an official medications chart, then I had to get her medications, as required by Banksia, put into a Webster pack which was ready by this morning. Hopefully it will be an enjoyable experience for her. In the meantime, after I have done the laundry, I shall relax, play some soothing music, read a book, enjoy a nice piece of steak (medium rare) and a glass or two of red wine for my dinner tonight and hope that there are no phone calls from Banksia. Over and out, but I’ll be back next week.
PS There have now been 520 hits on this blog which was first published in June 2012. I hope whoever is reading it will get some feeling for what goes in this caring role. I also hope that those of you are not carers might be better prepared for the time when you too need to step into a role you are not trained for and have no idea of what is ahead for you.
We had some sad news this week. Our family doctor, Dr George, died 3 weeks ago. We had been his patients for 13 years and always found him to be helpful and understanding. The saddest part of this is that he was only in his 40’s and had a young family. When we first attended his surgery I distinctly remember saying to him that we were looking for a younger doctor who would be around to see us into our old age. I have a particular reason to applaud his work because of his persistence in following up a quite serious medical problem I had 4 years ago when after attending an emergency room I was told the condition was “not serious enough yet” and to come back in 4 weeks time.
My wife’s personal care assistance (PCA) started last week. She has two ladies who come taking it in turn on Monday Wednesday and Friday. One of them is going above and beyond the terms of the care plan, including giving hand and foot massage as part of the assistance.
Last week also saw my wife start at Banksia Day Centre. She will be attending there each Tuesday. Yesterday as I dropped her off I was asked if I would stay and watch a demonstration of a robot which is designed to boost the emotional well-being of people with dementia. It is being trialled in some resident’s homes to see how they can assist residents and their carers. I may have a lot more to write about this in the next few weeks.
Now we have personal care in place and 3 days a week in Day Centres our weeks are tending to be more predictable and less stressful. There have been no more sundowning episodes since the bad one a few weeks ago.
Communications is still pretty bad between us. For example if I ask my wife to close the door behind her as we enter our home she will do the exact opposite. If I say turn left when directing her to the bathroom (because she longer knows where to find it) she turns right. It becomes much less stressful to lead her where she needs to go, and close all the doors myself.
Mirrors are becoming a problem for her because she doesn’t recognise herself when she looks in the mirror. I have found her on more than one occasion having a conversation with her own reflection.
I have got quite a collection of 50’s and 60’s music now. It is good to watch my wife stand up and move to the rhythm and beat of the music and sing the words of the old songs from her youth. The secret with this is not to do it for more than 30 – 40 minutes and then only once a day.
Since I have no knowledge of who is reading this blog, (apart from some family members and some close friends) I think it is appropriate that I restate the objectives of having this diary. If someone finds this blog via a web search engine and wonder the reason why it exists here it is copied from the very first post I made in June 2012:
This blog has two purposes. The first is that is intended to be an occasional record of the day to day caring for my wife who was assessed as having Primary Progressive Aphasia, a type of dementia, in September 2011. The second reason is that in some small way it may help other people who find themselves in a similar situation. When my wife’s dementia started I had no idea of where or how it would lead us and the changes it would make to our way of life.
I might also add that it helps me to ‘unload’ some of the emotion and frustration I experience in this caring role. As someone said the other day at the Creative Ways to Care course I have been attending – I have been handed a long term contract, which I did not apply for and I am not qualified to do (and the pay is lousy too).
I ask if any readers have any comments on the contents of these pages that you don’t be shy and feel free to to make statements of advice, disagreement or whatever you feel like adding. Just be aware that any spam is filtered out and will not make it to any published posts.
The Creative Ways to Care Course finished this week. Therefore the lovely carer Georgina will no longer be coming to look after my wife each week. I am pretty sure that my wife will miss those visits and I wish there was a way in which the contact could be maintained. The going charge rate for this type of service is $44 per hour. So for the last 7 weeks Carer Support have been footing the bill for 5 hours each week = $220 x 7 = $1540. On top of that morning tea and lunch have been provided during the course at a cost of $15 per head x 10 attendees x 7 weeks = $1050. Most of the course participants had carers provided for the days they attended. Lets say 8 out of 10 had carers. 8 x 1540 = $12320. Add to that hire charge of the room in which the course was held and food etc, there isn’t much change out of $14000. And I mustn’t forget the course leaders, two dedicated people whose experience and knowledge in this field is very extensive and freely shared when anyone of us sidetracked the discussion to describe the latest challenging behaviour we as carers had witnessed.
Just in case anyone out there has not discovered this course and would like to know more get in touch with Commonwealth Respite and Carelinks Centre in your area. This is the link for people in the southern suburbs of Melbourne http://www.carersouth.org.au/
My posts are coming more frequently at the moment because more things are happening.
Last night I experienced a classic case of sundowning with my wife. http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_and_sundowning
This has never happened before and was quite an eye opener for me. I have read about them and spoken to carers whose partners demonstrate this behaviour, but never actually seen it happen. It started at 10.30pm when I woke my wife who had been sleeping in a chair while I watched television. I was ready to go to bed so I turned off the television and gently woke her up and said it was bed time. This in itself is an unusual occurrence as my wife usually decides to go to bed any time between 7 and 8 o’clock. It took a while for her to come to and stand up and get her balance. As I tried to lead her to the bedroom she pushed me away and started re-arranging cushions on the couch, tidying magazines on the coffee table, re-arranging family photos on the shelf and generally showing no interest in heading towards the bedroom. She looked around the kitchen, even opened the door into the garage, all the while muttering something I couldn’t understand. After 20 minutes of this she finally headed to the bedroom where she pulled back the sheets and was intent on getting into bed fully clothed. I sat on the bed and insisted that she undress and put on her PJ’s. This ‘discussion’ went on for a further 20 minutes or so before she accepted the idea of undressing and getting ready for bed in the way she has always done. Then I suggested she go to the bathroom and do her usual routine there. It was 11.25 before she got into bed. Lesson to be learned from this – don’t let her sleep the evening away in a chair.
Last Thursday I was invited to take part in a focus group to discuss the needs of carers of people who have dementia. This was organised by Medicare Local whose aim is ‘connecting health to meet local needs’. This is a federal government organisation set up with Medicare within the last 8 months. Information from focus groups is being used to guide the local area dementia strategy with the aim of improving services to people with dementia and their carers. The clear message I left with the leader of the group was that more dementia specific short-term respite care is needed. I have found the services provided by Commonwealth Respite & Carelink Centre to be invaluable because of the insights learned from attending the courses provided. The encouragement and contacts provided by this organisation, and in particular from my carer support worker have helped me to see beyond my previous situation of sometimes despair, many times anger, and then guilt because of my anger, to become much more sympathetic and caring in my dealings with my wife. That doesn’t mean to say everything is smooth sailing all the time. Sometimes there are going to be times like last night where every ounce of patience is drained away.
Two more weeks have passed on the Creative Caring course. Week 4 was about stimulating and soothing the senses. Ideas were put forward about how to stimulate or sooth all 5 senses of sight, sound, smell, touch and taste. A further consideration was about movement and balance.It was shown that due to memory and personality changes that sometimes accompany dementia an individual’s response to different stimuli may be different from what they used to be. Also a person’s response may vary on any given day or even hour. We had a demonstration about using essential oils on the skin in a hand massage, and how to use an essential oil vaporiser.
Week 5 was about using music. We were required to list the music from the first 25 years of our care recipients life, and especially any music from between the ages of 16 and 25. It was stated that as well as listening to music for pleasure , we can also listen to music for a purpose – to divert behaviour or assist in achieving a certain behaviour.
The in-home carer Helen has not been available for the last two weeks. Georgina has replaced her and is an even bigger hit than Helen. On the first week Georgina came I could tell as soon as she walked in the door that she was going to be an excellent replacement. After quick introductions and a brief tour of our home she picked up the Life Story book I had started and sat down beside my wife and started going through it. My wife took a liking to her immediately and they had a great time together. This week Georgina brought hair curlers and after going through the Life Story book again (to which I had added more pages) gave my wife a shampoo and they had a ‘girly time’ as Georgina put it. I think my wife will be sad when the course finishes and Georgina won’t be coming any more.
We had a visit to Banksia last Friday when I was required to go through another pile of paperwork. My wife will be starting attending their Day Centre each Tuesday from the end of this month.