August 19 2014

I have been reading ‘Loving Someone Who Has Dementia’ by Pauline Ross, PhD. The subtitle is ‘How to Find Hope While Coping With Stress and Grief’. I found the book very helpful in putting into words the emotions I have gone through in my time a carer, and giving pointers on how to cope with the conflicting emotions I experience still, even though my wife has now been in residential aged care for just over 1 year. I read the e-book version available for Kindle from Amazon.

The basic premise of the book is that dementia creates ambiguous loss. Ambiguous loss is defined as loss that is unclear, it has no resolution, no closure. Dementia causes our loved one to become someone we no longer know, they are gone – but still there. This leads to complicated grief. By the time the loved one passes away, very often the carer has grieved several times over at each and every further loss of ability, as the loved one progresses through the various changes caused by the disease.

I highly recommend this book to any person who is caring for a loved one whether they are a parent, child or spouse. The views expressed are so close to my own experiences over the time I was my wife’s carer and now that she is in residential aged care.

 

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Bleeding brains – Part 2

When my wife moved into residential care I wrote that I probably would not make any new posts on here. This is mainly because my role as sole caregiver was no longer a valid claim. Since my episode in early January (refer to Bleeding Brains) I have to say how glad I am that she is in good hands at her care home.

After quite a bit of messing waiting for a  hospital outpatients appointment I was referred finally to a neurosurgeon. He required another brain scan, the result of which was that I needed surgery within 4 days to drain a sub dural haematoma which had developed. After 4 days in the hospital neurosurgical ward and 7 days in a rehabilitation hospital I came home. One of the most inconvenient outcomes of this diagnosis is that I am not allowed to drive until the doctor gives me the all clear.

Before the surgery I informed the care home of my situation. I also asked if I should tell my wife what was happening. Because I visit her 4-5 times each week I know that she looks for my arrival. The advice I received was not to say anything to her. The reason for that advice was that if she remembers being told what was going on she would worry about it and become upset.

My wife and I are blessed in that we have a lot of very caring friends. They drew up a roster for visiting my wife, all of whom knew that she didn’t know why I wasn’t visiting.

When I returned home I started visiting again. The first time I visited I explained why I hadn’t been for nearly 2 weeks. At first she couldn’t understand what I was saying. Eventually the fact registered with  her and she became quite emotional. After reassuring her I was alright, even with the restrictions placed on my activities, she became calmer and with a bit of distraction with some chocolate, things got back to being a normal visit.

Now it is 6 weeks since I had surgery, and when I visit her it is only with the help of Ken, the husband of one of the other residents who lives nearby, who picks me up in his car. Each time I visit, when it comes time to leave, I have to explain that I have to go when Ken leaves, because I am not allowed to drive. Some times my wife asks why can’t I drive. Then I have to explain again about having had brain surgery.

One of the reasons I started this blog was to inform other caregivers what being a carer has required of me, and that by relating my experiences here, they might glean something that might be useful in their role. I had no idea of knowing in August last year, when my wife was admitted to the care home, that bleeding brains would take up so much of my time this year. If I had still been her carer in January she would have been relocated into emergency respite care. There is an emergency telephone number to make contact to arrange that care. It can be anywhere the first available bed is located. Similarly that arrangement would have been made while I was in hospital. In my experience people with dementia do not cope very well with change. Knowing my wife as I do after 46 years of marriage, I know that those changes would have been devastating for her well-being and self-esteem. I am so thankful that she is where she is, that she is well cared for and secure. As the care home nurse said to me before I was admitted to hospital, “you take care of yourself, and we will continue to take good care of your wife”.

 

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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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