In our latest blog Bob and Val share their journey of love, living with dementia, faithful four footed friends and hopes for the future. “We sincerely hope each of you takes something important away with you from this article; we also hope we will give you some idea of it is like for us to be living with dementia”.
From their experiences since Bob’s diagnosis in 2010, Bob and Val have become passionately committed to reducing the stigma and improving the lives of all those impacted by dementia.
Bob grew up in England and in the mid seventies he chose to settle in Perth. After a varied background he set up a Public Accountancy practice in Midland and became a well-respected and sought after business financial adviser.
Valerie grew up in New Zealand and also chose to settle in Perth in the seventies. Before that her working career was also varied starting as a nurse and finishing as a bank teller.
They met in 2003 and led their busy lives from Perth hills. Bob’s Public Accountancy practice was still growing when he had to have bowel cancer surgery in 2001 and two years later when we moved in together he was still unsure how his future would evolve. Had they really got it all? Would it return? Would he ever fully regain his health?
Well. Yes, he did pretty much regain his health. We had some wonderful years together until Bob experienced several worrying incidents which culminated in August 2010, with a diagnosis of Alzheimer’s disease. He was just 59 years old.
As just one part of coming to grips with this devastating diagnosis we decided to share the journey together and cemented our relationship by getting married that November.
Unusually – and bravely – Bob decided to live with Alzheimer’s Disease without any drugs. Initially there was little change to our daily lives. We joined Alzheimer’s Australia and received enormous benefit from the knowledge, advice and support they offered. Bob was very open about his diagnosis and has never minded discussing his experiences. We did several interviews for the media and gave talks to medical students and community groups. We live in a relatively small community and many locals recognized us from our media exposure and wanted more information.
Gradually this insidious disease began to eat away at Bob’s abilities. Fortunately NOT at his sense of humour nor at his integral decency.
For Bob the loss of his driving licence in April 2013 was the hardest experience. By June 2013, – not quite 3 years after diagnosis – things were difficult. Through Bob’s GP we requested an ACAT Assessment in order to begin acclimatizing Bob to day centres and overnight respite centres. I experienced quite a run around because Bob was only 62 years old and ACATs were for over 65s. Well, Alzheimer’s Australia had warned me of this possible stumbling block so I persevered and eventually Bob was assessed and, as expected, classified as requiring Low Care.
Unfortunately, by this time I was at a breaking point. There is always a straw that breaks even the strongest camel’s back and that’s what happened. I was a mess and with little warning, Bob was placed at Hakea Respite Cottage for emergency respite. It did not go well. Within days he was threatening suicide — and all I could do was cry. Fortunately a friend was able to take Bob down to Walpole for a week of fishing and walking while I got my act together.
With better preparation Bob has been back to Hakea and although he finds it difficult he accepts the necessity of regular respite for BOTH of our sakes. The key workers at Alzheimer’s Australia have created a program specifically for younger people with dementia where they have extra staff on duty at Hakea Cottage and have daily outings and interesting activities. This works very well for Bob.
Another respite facility Bob finds very good is the Milperra Cottage in Mount Helena. There are only three bedrooms for guests and the rostered carers are usually able to spend a little more time talking with Bob. I let the staff know that Bob would prefer to be gardening or even washing dishes than sitting in front of television – unless there’s some English soccer showing!
We’ve been managing things pretty well lately. Bob is a keen sailor and has been a member of the South of Perth Yacht Club for over 30 years. We no longer own a yacht but his mates there like him to go out sailing with them on a Wednesday afternoon and Bob sometimes operates the winches. The yacht club is an hour’s drive from our home and public transport is not available, so a friend and I take turns to ensure he gets there and his daughter brings him home afterwards. Lately, Bob finds sailing day very tiring so rather than go weekly he now goes fortnightly.
Bob’s always maintained his fitness. Before he emigrated from England, he had played professional soccer but these days his fitness is maintained with long walks twice daily and doing the physical work necessary to maintain our ½ acre very bush block in the Perth hills. Bob also has to keep us well stocked with firewood for winter.
When Bob is out walking I know he’s safe because of our canine friend Shah. She’s a well trained Border Collie cross and has taken on the role of Bob’s guardian and guide. Across the road from our block is a very hilly, 55 hectare bush reserve with some tracks through it. We’ve always loved walking through it together but these days I’m limited to where I can walk and that’s not enough exercise for Bob. However, so long as Shah is with him, she will ensure that Bob sticks to the correct tracks to get back home. Or maybe to ensure that she gets home for her dinner!
For several months last year, I took Bob to the local Men’s Shed on Tuesdays. He’s not a manual tool, handcraft kind of fellow, but they have a big vacuum cleaner there so he would clean up the sawdust from around the machines while having a great social time with the guys. Now twice a week, Rise, the local Community Support group, pick up Bob in their bus and take him to their social centre for a few hours. Bob enjoys this a lot better than the Men’s Shed because he gets involved. He can put out the tables and chairs when they go on outings and generally help some of the other clients who are less able than he is.
Bob has not lost all of his basic accountancy skills and with my previous life having involved some accounting experience, we are still able between us, to conduct audits of Self Managed Superannuation Funds. This brings us in some pocket money which enables us to continue one of our shared loves – traveling.
Overseas travel is a bit daunting now but we manage really well in Australia. Bob & I are members of several Alzheimer’s Australia committees dedicated to improving the lives of people with dementia and their support person, families and friends. Some of these committees involve travelling to other states for meetings and when possible we will add a few days and enjoy whatever is going on wherever the meeting is held before coming home. We also still enjoy driving holidays in our own state and have some good friends who are happy to drive along with us for a few days away.
While Bob & I do everything we can to ensure Bob’s abilities are utilized to his full capacity, we also need the supports available to us through the Independent Living Centre, Alzheimer’s Australia, and other community facilities.
I hope the relatively new Consumer Directed Care packages will make a measurable difference to our lives. Bob doesn’t seem to “fit the mould” of people living with dementia. For example, he’s still able to actually DO the yard but needs guidance – that’s a weed so remove it; no that’s a plant don’t remove it!
Let me share an example: Last spring I showed Bob a Flinders Range Wattle which needed to be trimmed back. —- I left him to it and continued with what I’d been doing. —- After a while he sought me out to see if he’d taken it back far enough. —– I was devastated to see he’d trimmed the nearby gorgeously Christmas-tree-shaped star bush and not touched the wattle!
One of the things I’ll be looking for in our CDC package is a social worker who likes gardening to come and join Bob in the garden. Not to do it for us but to share the work next to Bob. – – – I’ll stay inside at the computer with which I’m pretty good!
At present, my concern around CDC is the need for us – the consumers – to have sufficient information in order for us to make informed choices. Part of what we need is:
- Information about our entitlements;
- Information about what services are available to us;
- Information about which local providers have suitable services; and
- Information about flexibility of services.
It’s not enough to say “we can have someone come up and socialise with Bob”. What Bob needs is someone who can be active with him. In the garden. Take him walking in a different park. Maybe even have a glass of wine at the pub with him AND let him chat with them!
In summary and as a “take home thought” every consumer with whom you work is an individual. EACH one of them has likes, dislikes, wants, desires and most importantly NEEDS.
I would like to share a little thought with you:
Growing older is mandatory.
Growing up is optional.
Laughing at yourself is always therapeutic.
The Independent Living Centre Commonwealth respite and Carelink centre can provide short term and emergency respite services to people who provide unpaid support to another person with an ongoing disability or illness on a regular and ongoing basis. This centre supports Carers who reside within the North metropolitan region of Western Australia.