This is an edited version of a speech Imelda gave at The Four Ds Forum held by the NSW Ministry of Health Aged Care Unit, Nursing and Midwifery Office and Older People’s Mental Health Policy Unit; Agency for Clinical Innovation, Clinical Excellent Commission and Health Education and Training Institute.
In speaking to you this morning, I want to honour my husband, Graham by sharing our story. We will have been married 44 years next month and we were blessed with a deep and abiding love and companionship. He is now living the nightmare of young onset Alzheimer’s disease.
Graham worked as a public servant for 42 years, the last 15 years senior management. He was a highly-skilled administrator, meticulous in every aspect of his work. In 2006, at age 58, I began to notice some difficulties Graham was having, mainly through comments about work, where he had missed some detail or forgotten to complete something. His retirement was coming up at 60 and I knew that everything would be okay once the stressful job was finished.
In 2008, his first year of retirement, Graham worked on a limited project 2 days a week. I started to become concerned: not only was he was struggling with the job, he wouldn’t change his underwear for days on end; his ability to navigate his way in familiar streets was affected. It was becoming increasingly more difficult to hold any sort of deep conversation; would he lose the thread and forget things said a couple of minutes earlier. I knew something needed to be done but I also knew that I needed to stay as his “good cop” and had to find a “bad cop”.
When our GP asked Graham if he would like to see a neurologist because he admitted he was “forgetting things”, he said no. Oh how I wish she would have talked him into to saying yes. By 2009 Graham at age 62 was still more or less functioning around the house, reading, watching television but he couldn’t for example take the coins in his money jar and stack them in denominations for bagging; he would go out to his beloved garden and repeatedly weed one little spot, no longer remembering to water the plants.
In June 2010, both our daughters together convinced their Dad to see a doctor. The first availability with the neurologist at the hospital was August 2010. She checked all the usual physical things; with her chatty prompting, his mini mental score was 27. The neurologist recommended a CT scan. Graham refused because he had one a couple of years earlier for hearing loss and vertigo where he was claustrophobic and traumatised. The specialist had a look at these old scans and said they looked fine! More months ensued with waiting for a cognitive screening, waiting to see if Vitamin B12 and Vitamin D3 would have some effect.
The cognitive screening report was unspecific about the type of dementia but pointed to the possibility of Alzheimer’s or fronto-temporal or Lewy bodies. In all, 13 months passed and all we had was a loss of driver’s licence and a conclusion by a chatty doctor that there was “some sort of early dementia”. She mentioned that there was medication but said that mostly it didn’t work, so Graham declined trialling it. Having been told to come back in 7 months, Graham refused. We finally found a highly recommended doctor in Gosford: a further wait of 5 months to see her and over 3 hours’ return trip. She immediately ordered a spect scan which was immediately definitive – classic Alzheimer’s with some frontal and rear lobe degeneration, hence the possibility of some additional vascular cause in mini-strokes. Why didn’t the first neurologist do that?? How much time we’ve lost! By now, there was little or no conversation; my companion was no longer accessible.
The following nine months saw Graham continue to decline steadily; I loved my job but I needed to retire to be home with him. I thought he was okay walking the dog around our block until one afternoon a neighbour in our suburb drove him home, having found him, having fallen on the footpath, not knowing where or who he was.
He tried Aricept but it was hugely unsuccessful; he could no longer engage in his passion of reading; he couldn’t concentrate on television for any length of time. Gardening, mowing the lawn was beyond him.
In December 2012 having just turned 65, Graham suddenly became irrational, psychotic, aggressive and agitated. Our GP tested for a UTI, which was positive; he also gave Graham Risperidone. This had some benefit. Not long after, we added depression and huge separation anxiety: Graham would not let me out of his sight, even in the bathroom. He would only sleep for a few hours before getting up and wandering the house at night.
A trip in the car was a nightmare and I had to lock the doors. Our GP added an anti-depressant to the regime which seemed to help somewhat. In April 2013, I accessed 2 weeks’ respite care at the only high-care secure facility with a bed because I needed to rest. This was an absolute nightmare for Graham: it was a behaviour-specific dementia unit and Graham’s being locked up in this inhumane environment was hugely traumatic for him, as it was for me when I heard reports from visitors.
I was able to arrange an emergency ACAT assessment in May 2013. The eminent neurologist said Graham needed immediate permanent placement back in the facility I’ve just mentioned. I was very polite to the doctor but I would have liked to have shouted “over my dead body!” I believed I had not yet done all I could in caring for Graham: I needed the time and the facility to be right. His Risperidone was increased. He was now needing help toileting and showering and had had a couple of falls.
In August 2013, I again needed respite. The only place that had a bed available for high care dementia was, believe it or not, in Wyong – a nightmare trip with a terrified toddler! A couple of days later, his RN rang to say that even with all her professional skills she would not be able to care for Graham 24/7 and I really needed to decide that it was time to put him into care.
I spent the next week looking at facilities: specifically looking for a facility with a bed available which could take a person with young onset dementia who needed high care and security and treat him like a human being. I was blessed to find the nursing home where Graham has now lived for 14 months. There has only been a brief number of behaviour issues, usually traced to pain, constipation, UTI or dehydration.
Chronologically, Graham very clearly had three years of gradual decline from age 62 to age 65 and has had almost two years of rapid decline from December 2012 aged 65 to today.
Today at 66, Graham is totally dependent on help for absolutely everything. He can’t sit in a chair or lie on a bed without being positioned and manoeuvred. He often needs help with feeding. He can walk unaided – his only life skill still remaining. He is physically well, although frail and much depleted in weight, as he paces constantly, day and night.
The hardest thing I have ever done was to put my husband into care.
I can contrast the quality of care I saw at three facilities:
The first was a lock-up; there were very few staff in evidence for 30 residents. There was little interaction evident in a human to human sense by staff with residents. My actual observations were brief but the effects reported by visitors and the effect on Graham were distressing to say the least: had there been a need to put my husband in this facility, I would not have been able to visit him ever – it would be too painful to see him crushed into terror. These are harsh words, I know, but what I’m trying to demonstrate is a key point – there’s a right facility for each person.
The second facility appeared to be better staffed per resident; it was again a lockup and our daughter, who is an RN and who lives close by, sent many comments about her poor perception of care she was seeing on her visits.
Other facilities I had interviewed had glossy brochures detailing the lovely artworks and modern lounges – that scores a zero in care quality. I probably spent an inordinate amount of time unsuccessfully trying to find a young onset high care facility, let alone one which had a bed available. I was relieved when Graham had been in his permanent residence for only a couple of days, I saw that it didn’t matter to him one little bit that most of the people were at least 20 years older than him. It was only confronting for me.
What is so good about this facility? When I was interviewing the DON, I was observing staff and their interaction with residents. There was a constant stream of staff moving around in a 24-bed house; there was much touching on the shoulder and saying, “Good morning, Mary. How are you, darling?” Lots and lots of deliberate person-to-person engagement, even with no response from the resident. Everyone in this facility is treated with dignity and respect, even those who are bedridden and totally dependent for every movement. My husband is shown love by those who care for him.
Over the first month of Graham’s residency they needed to get to know this new resident and I had to be vigilant in keeping on top of pain indications, constipation, agitation; each time I saw something that needed attention, I would bring it to the attention of the RN or the DON or both and very quickly the issue would be attended to. It’s been a totally collaborative experience over the past 14 months, with issues arising for attention now and then, and I’ve had total confidence in their ability to hear what I say and their willingness to ensure that Graham’s comfort is maintained.
My biggest cry from this whole experience is: educate the medical profession! It’s not just “old people”!!
A couple of things have been crucial in our negotiating this frightening world of dementia. First and foremost, we are Christians and our faith has seen us walking this journey trusting in God who loves us, supported by our family and our church community.
Secondly, in May 2012, at the suggestion of friends, Graham and I attended the Living with Memory Loss program run by Alzheimer’s Australia NSW at Ryde. Without a doubt, this has been the single most important source of information and ongoing support in our journey; without the absolute wealth of information, the ready accessibility of advice – what do I do now? – and the ongoing support group interaction, this would have been an even more lonely and frightening journey. I will go so far as to say that inasmuch as I feel let down by the medical profession, I feel immensely supported by and grateful to Alzheimer’s Australia NSW. As a flow-on from the Living with Memory Loss program, I am part of two carer groups which continue to meet regularly and/or socially, to support each other in this journey. No-one can do this alone.
I am also connected with Southcare, Sutherland Shire Carers, 3 Bridges Community (Pole Depot) and Carers NSW – each of these organisations again provides much needed support.
A crucial message to get through to a carers is – ask the questions; ask for help; ring the Helpline at Alzheimer’s Australia NSW, if you don’t know who to talk to.
What can we do in the community? I can’t begin to cover it all but here are a few points … and here I’m also including each of you specifically as “the community” whether you’re in the medical profession or a care giver … I would tell people Graham’s diagnosis and they would either say, “Oh, my grandma had that” or “Oh, he’s forgetting things, is he?” So, firstly, we need to educate the community that young onset dementia is very, very different from the elderly experience. It’s probably a person still in their prime, still at work, perhaps with children still at home. It’s not just “forgetting things” it’s forgetting how to be a functioning person. And it moves at a frightening speed.
Secondly, if you have a friend with a diagnosis – don’t abandon them: keep visiting. It’s not contagious and you can be a big help in prolonging activity. My husband’s golf mates went out of their way to “carry” him around the course for as long as practicable.
Thirdly, educate retail and service staff. I’ll mention an example in our local community: the RTA lady who assisted us to cancel Graham’s licence was so kind, discreet, sensitive and respectful – she made a horrible event into something that was emotionally manageable.
In concluding, may I say as a carer that I find it an honour and a privilege to be able to walk beside my sweetheart on this final journey and regardless of the fact that he doesn’t any longer really know who I am, I know who he is – and that’s what makes my visits bearable!
Hi Imelda - thank you for sharing your story. Beautifully written. It's a tough journey, that's for sure. All best, Helen
Reading your story sounds the way my husband John was before he went into permanent care. I was sitting here going yes thats the way John was. He has been in the facility for 15 months, John is high care now and like you I know who he is and it makes my visits bearable, we have been married 50 years.