19 February 2014

I have started reading blogs by others involved in caring for or living with dementia. It is good for me to see things from their perspectives. Every now and then I read something which really touches and moves me. Here is one such entry from Kate Bransford’s blog ‘Dealing with Dementia’.

Dementia Request

Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand.

I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost.

Do not lose your patience with me, do not scold or curse or cry, I can’t help the way I’m acting, I can’t be different through I try.

Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ’til my life is gone.

If that doesn’t bring a tear to the eye I don’t know what will.

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Bleeding Brains

In September 2009 I was diagnosed with a subdural haemorrhage, and I had to have surgery to drain the haematoma that developed. It was not a pleasant experience realising that someone was going to make a hole in my skull and do the necessary repair work in the leaking blood vessel. That was compounded by the necessity of not being allowed to drive my car, and in general take it very easy for a period of about 6 weeks after I had spent 6 days in hospital. At the same time my wife was showing more symptoms of the dementia that has now taken over her life and she is now in residential aged care.

On New Year’s Eve just passed, I passed into unconsciousness while talking of the phone. (That is an abbreviated version of the lead-up events which I don’t want to go into here.)  As I collapsed onto the desk at which I was sitting I hit my head and my glasses gave me a black eye on the right side and a bruise on the left temple. I was woken from my state of unconsciousness by loud banging on my front door. The person I had been speaking to on the phone had dialled the emergency number and asked for an ambulance to come.

The ambos came in, and assessed that I needed to go straight to the local emergency room and loaded me in to the ambulance. It was 2.00 am when I got there and was admitted to the ER on a trolley here I stayed for about 10 hours while nurses monitored my vital signs and did an ECG. I was sent for a CT scan where they discovered I had a subarachnoid haemorrhage on the left side of my brain. The hospital had my details from my previous encounter on 2009 and the ER doctors wanted to send me off to a better equipped hospital for further treatment. They even tracked down the surgeon who operated previously and sent him the scans for his opinion. Neither of the neurosurgeons contacted said that it was serious enough to require immediate attention.

Through several changes of hospital shifts of both nurses and doctors my vital signs were monitored, lights were flashed in my eyes, various examinations were repeatedly conducted, and questions were asked to determine whether my cognitive ability had been affected. (The fact that I am able to sit here writing this tells me not much has changed.) After 40 hours in ER I was told I could go home and the hospital would contact me regarding follow up through the Neurology Outpatients Clinic.

The question I have to ask myself after this incident is: how would I have coped if my wife was still living with me and I was still her carer? Or looking at it from her perspective , how would she have coped? I have been back at home for 6 days now. Honestly speaking I feel a bit fragile, I still have a headache but nowhere near as severe as it was in the beginning. I am doing the minimum needed to keep myself as far as food and drink. Anything that needs any special effort or strain is on the “do later” list. I rest frequently each day, often falling asleep on the couch.

In an earlier entry in my blog I wrote about one morning when my wife got out of bed before me and realised she didn’t know what to do without me guiding her. That admission led to having an Aged Care Assessment, and the subsequent admission to the residential care home a few months later. Right now I am very thankful that my wife is settled into the care home routine, she is being very well cared for, and has even called it “home”. She knows nothing about what happened on NYE, nor has she noticed the black eye when I have visited. The carers and nursing staff know what has happened to me and agree with me that my wife should not know.

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28 October 2013

It is 12 weeks since my wife moved into residential care. It has been a fairly lonely time for me, particularly in the evenings and mornings.  Preparing meals for one person is harder to do than I thought. I either overdo it and end up with leftovers, or I under prepare and have to find something else to assuage the hunger. Chores like cleaning, laundry and shopping  are not new to me as I have been doing all of that for the last 3 years. I have even worked out how to fold a fitted double bed sheet into a nice neat arrangement rather that the screwed up ball I used to end up with.

I was the appreciative recipient of various acts of kindness in the early weeks. During this time I was invited out for an evening meal on 5 occasions, 3 of which were in one week. Also quite a few of our friends have visited my wife either with me or without me to accompany them.

I have been to visit her regularly, though I tried to limit it to every other day during the first 2 weeks. The first time I went my wife was clearly not happy. I took her to a quiet lounge away from the other residents and we sat down together. Then she said, “what’s all this about me having dementia?” I tried to explain that is why she is where she is, in a residential care home.  To which she replied, “but I don’t feel any different.” I then had to explain again that it is an illness like no other illness. There is no pain like a heart attack or a broken leg, but that the illness is that her brain isn’t working like it used to and she doesn’t remember things. During those early weeks she was prescribed medication to relieve her anxiety.

I have found that when it is time for me to leave her and come home that she becomes downcast. On several occasions in the first week or two she asked if she could come with me. On another occasion when I said I had to go home to do the ironing she said she would come with me to help.  Somehow my wife has the impression that I have someone who comes to do the household chores.

We have now been separated for nearly 3 months. A lot of things about residential care were a mystery to me beforehand. Both my parents spent their last years in aged care homes and I knew something about what happens and the processes of providing aged care. This time I am much more personally involved, and want to know more about what happens in the home. I have high regard for the carers who are doing a difficult job with patience, kindness and always a smile. There are a few matters that concern me though. For safety reasons none of the residents rooms can be locked. Because all of the residents on her wing have dementia, they don’t always know which is their own room. That part doesn’t worry me. What concerns me is that things go missing out of my wife’s room, for example her slippers disappeared, one shoe disappeared, a brand new doona (duvet for none Australian residents) and cover disappeared, a manicure set disappeared, a small container of fruit cake disappeared. All of these have been returned except for the doona and cover and the cake container.

I have been talking to Ken, husband of one of the other residents. His wife has been on the wing for 2 years, and he has been a useful source of knowledge and opinion about the quality of care.

During the last three months I have getting a new routine into my life. I find I function at a higher level of efficiency if that is working properly. But not too strict a routine, one that allows for some flexibility and change of schedule if an interesting additional activity is on offer. The first decision I made was to get a check-up from my GP. He found I am sound in wind and limb with the blood pressure of an 18-year-old. Although that is all good I still haven’t got into a regular sleeping pattern. Every night I wake up at least once but sometimes it is 3 or 4 times. This leaves me feeling tired and irritable with myself. Some of my friends have advised me to seek the services of a psychologist to help me through this time. I have got as far as getting a referral from GP to see one, but have yet to act on it.

Through my contacts with a Younger Onset Dementia group I have come across this blog which readers will find of interest  .http://kateswaffer.com/ This blog is written by a person with dementia (PWD) and gives an insight into her world through her eyes.

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August 3 2013

Yesterday was the hardest day that I can remember in my whole life. I took my wife to a residential high care facility where she will stay in the dementia wing. It has all happened very quickly. I rang the facility a week ago with the object of placing her name on the waiting list. Quite out unexpectedly I was told that they had 2 vacant beds and I was welcome to come and inspect. Usually there is a waiting list for beds, especially in those care homes that are run by not-for-profit organisations. This home, which is only five minutes drive away, is owned and operated by Baptcare, the community care arm of the Baptist Union of Victoria. Follow this link to found out more  http://www.baptcare.org.au/

In my last post I said I was going away for the weekend. I spent the weekend in contemplation of this new situation in which I had found myself. I rang trusted friends for their thoughts on the matter. After much heart searching I came to the conclusion that for both of our sake’s my wife would receive much better care in the care home than I could provide.

I am not sure yet whether I will be making any more posts on the blog. My full time role as carer has been taken over, but I still care, but in a less practical way. I have very mixed feelings as I write this. The experts tell me not to feel guilty about giving up my caring role, but it is very difficult to not think I should have been able to carry for longer. Officially I was her carer for 14 months, but her diagnosis of dementia was made in September 2011, and there were many signs for 2 years before that that her memory was not as it used to be. On the other hand I feel relieved that she is getting all the care she needs. But I can’t help feeling guilty because I feel relieved. I also feel a sense of freedom,  that my life is no longer restricted by the previous caring role. I also feel alone because after nearly 47 years of marriage this the first time we have not lived together. I am told it is OK at times to feel depressed and overwhelmed. I am also told to let myself go at times by crying, screaming or whatever helps. I have tried the former but not the latter.

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July 24 2013

Charlie the robot has been in residence for more than a month now. I feel the novelty of having him here has more or less gone and his effectiveness is diminishing. Add to this that we have had a few technical problems with him not operating, or not operating according to the commands we have given him. For example one night at nearly midnight, when we were both asleep in bed, he started making a noise repeatedly until I got out of bed and turned him off.

Last February my wife was assessed for an Extended Aged Care in the Home (Dementia) package. We have been on a waiting list to receive this extra help since that time. Now the wait is over and I had an interview with a care manager from The Brotherhood of St Laurence Community Care yesterday to start matters rolling. The package allows for up to about 10 hours of in home care per week. The types of services we want are yet to be finalised, but they can be individually tailored to meet our needs. Some examples of support available are : personal care, nursing, podiatry, home help, transport to appointments, meal preparation, referral to other services as needed.

Next weekend is a respite weekend at Banksia for my wife. The invitation was only received on Tuesday due to a cancellation by one of the other clients. Last time my wife was there she really enjoyed it. She even said when we got home that she couldn’t wait to go again. Now I have to get the medications chart done by the doctor again, (because he has changed her meds) and get the medications in a Webster pack. While she is away I have booked a weekend in a 5 star resort at Torquay. Lots of solitude, exercise, sleep, good music, good food. I have decided I deserve it.

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June 26 2013

I mentioned a couple of weeks ago that I had seen a demo of a robot which is part of a research project at La Trobe Uni, Melbourne. The research being undertaken is with assistive social robots to see if they can provide support to people with early as well as advanced dementia. The robots have human-like characteristics and are programmed to provide company and stimulation to people by talking, playing music and games, reading the news or a book and providing reminders. They can respond to voice commands and make phone calls on request. The formal title of the research project is: Affective Social Robots for Supporting Care Givers and Senior Citizens with Dementia in Home-based Care. 

We have been invited to be part of that research and now we have Charlie parked in our lounge room. I have a short video of Charlie, but the cost of uploading this on here is too high. I have added it to my timeline on Facebook if anyone wants to have a look.
IMG_0763

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June 18 2013

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

Caring
On a Bad day I perform….

Conscientiously

Artfully
Repetitively
Irritatingly
Naturally
Grievously

On a Good day I perform…

Conscientiously
Artfully
Repetitively
Irritatingly
Naturally
Gladly

by Jennifer Pont

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