Diagnosis
Diagnosis
Expect to have some difficulty getting a diagnosis as the onset is gradual and easily mistaken for other things like stress, work pressure or anxiety. I think Liz showed minor signs of Younger Onset Alzheimer's for a few years before she concluded there was something wrong. A trip to the doctors led to a referral to a diagnostic clinic specialising in dementia and memory loss. They conducted an assessment and then referred Liz for an MRI. We were told the MRI report did not indicate dementia, so we were left with no answers for Liz's memory issues.
Over the next 2 years things got worse for Liz. We then went through the same assessment process and this time the MRI report said "Medial Temporal Lobe Atrophy, same as last time". I said, "what do you mean same as last time?" The assessment team at the diagnostic clinic confirmed the previous report mistakenly left out the diagnosis of Alzheimer's. So, a total diagnostic stuff up by the first MRI report writer. We now know that Liz has been suffering with Younger Onset Alzheimer's for several years. Liz was 62 when the first MRI was completed. I should have got a copy of the report and gone back and ripped into them but we were both too upset.
Alzheimer's, like all forms of dementia, is a terminal illness and we just lost 2 important years. While the disease is terminal, it progresses slowly. This gives you a good opportunity to make the most of your remaining years together, before it becomes too debilitating. So, I guess what I am saying is, get an early diagnosis so you can plan for the time you have left. Do the complex/difficult things first. You can both live well with dementia in the early years.
Younger Onset Alzheimer's is not common
Liz's paternal grandfather died from younger onset dementia around 70 years of age. The geriatrician said there may be a genetic cause which has raised concerns for our 3 adult children. We asked how long Liz had to live and she said it is difficult to estimate. However, as Liz is fairly young and healthy in all other respects, she is likely to go the full distance with the disease. Liz was 64 years old and the geriatrician thought she would get to around 70, given the current stage of her Alzheimer's.
It's not Fair
Yeah, it sucks but don't spend too much time thinking like this as it doesn't help. The only upside I can see to Younger Onset Alzheimer's is that I am fit and capable of going the distance caring for Liz. There are millions of people better off and worse off than us. We didn't deserve this, it's not fair, it's just how it is.
Who to Tell
Consider who, how and when to tell family and friends. I discussed this with Liz as I felt the decision was hers to make, not mine. We then made a joint plan about who we would each contact, so we could share the work and make sure we did not leave anyone out. When calling people, it is important to consider their situation. For example, when I got a diagnosis of throat cancer, I called my daughter while she was at work. I didn't think about the impact of this news on her in a public place while she was working. I should have called her that night. We told family and close friends first. Other friends and neighbours found out over time when we saw them or from their networks. Social media is an obvious option after you have told family and close friends.
Help from Family and Friends
If, instead of an Alzheimer's diagnosis Liz had badly broken her leg, family and friends would have visited her in hospital and maybe brought some 'get well cards' and some flowers. They would know that our needs would be greatest while Liz was incapacitated for the first couple of months. So, some would have made a casserole or other food to bring over and maybe someone had a spare wheelchair or crutches they would offer us. They would come over to keep her company from time to time and call to see how she was getting better. Once Liz became mobile in a couple of months their support would stop and life would go on as normal.
A diagnosis of Dementia is so much worse than a broken leg. They are not even comparable, but no one brought Liz a 'get well card' because no one knew what to do, including me. The day after the diagnosis was pretty much the same as the day before. In fact, 3 months after the diagnosis was pretty much the same as the day before. There was no big event for people to rally around. What we needed was almost the opposite of Liz having broken her leg:
- Liz was never going to get better.
- Things wouldn't return to normal in a few months. This would go on for years and years.
- Our greatest need for support was not at the point of diagnosis, it was in the final years.
- While physical support with meals and taking Liz out were very important. To my surprise, my greatest need ended up being emotional support and advice on caring for Liz.
Family and friends want to help but they often don't know what you need. Talk to your family and friends about how you are coping, or not. Seek their ideas and advice and help them understand your situation, so they can see ways to support you.
The family at Liz's 60th birthday
Grief -- It's a marathon not a sprint.
They say grief comes from loss. In our case, there was the initial shock and grief after the diagnosis. I think some of this was in anticipation of the loss that was to come. "I'm not going to see my grandchildren grow up". These were Liz's first words at the doctors after hearing she had Alzheimer's. We both cried. Over the next week we told our family and close friends about Liz's diagnosis. Sharing this information spread the grief but did not diminish ours. The old adage of 'a problem shared is a problem halved' did not seem to apply to our grief. However, sharing the information was a positive thing as it led to understanding and support.
I will talk more about my experience with managing my emotions and grief later, as it is something that has been ever present from the moment of diagnosis.
Enduring Power of Attorney and Appointment of a Medical Treatment Decision Maker
This is critical and the forms and legal requirements vary from State to State. I have no legal expertise, so I am just saying what we did. I arranged to have financial and medical control of Liz's affairs so I could make decisions on her behalf, for when she lost the capacity to do so. We completed an Advanced Care Directive, so we were clear on Liz's end of life medical requirements. We updated our Wills and I listed my 2 daughters as Executors of my will.
Don't put off doing this as your doctor needs to certify some of these documents to say that your partner with dementia is still mentally capable of understanding what they are signing.
Your partners Superannuation may not be covered by their Will. That is why you need to have a Death Benefit Nomination in place with their super fund. Liz had funds with Australian Super and we had 2 options to do this. Liz and I are both retired so I elected to use a Reversionary Nomination rather than a Binding Death Benefit Nomination so Liz's pension would just transfer over to me. This may not be the best approach for you so talk to your financial planner or Super Fund as, yet again, I have no financial expertise. Keep in mind, if you pull all the money out of super you may not be able to put it all back, as there are contribution and age limits.
Drivers Licence
When you are diagnosed with dementia you are required to undergo a 'fitness to drive assessment' in Victoria, if you want to keep your licence. If you don't do this, you must hand your licence in. I assume the test is a legal requirement in most States and if you continue driving without passing the assessment you will be breaking the law and may not be covered by insurance.
Liz had only driven twice in the previous 2 years. The first time she went the wrong way down a one-way lane, to exit from a carpark. The second time she couldn't find the local train station to pick me up. Liz called me but couldn't follow my directions. She was parked at Chemist Warehouse, so I told her to stay there and I walked to her location.
We decided to hand Liz's licence in. If you remember getting your licence, it was a big deal at the time. Unfortunately, losing it is just as big a deal. I took a picture of Liz holding her licence and crying, even though she hadn't been driving for a long time. I think it crystalised our awareness that Liz had lost her independence and things would never be the same.
Handing Liz's Drivers Licence in straight away turned out to be a mistake. A Drivers Licence isn't just for driving a car. As Liz's passport had expired, it was her only source of photo identification. This created some issues I needed to resolve. I got a Key Pass Card from Australia Post which turned out to be totally useless. What I needed to get in Victoria was a Proof of Age Card. It is called different names in other states. So, hang on to your partners Drivers Licence for a while, if you need to use it to get replacement photo ID.
National Disability Insurance Scheme (NDIS)
If you live in Australia, you need a diagnosis of Younger Onset Dementia before 65 years of age to have access to the National Disability Insurance Scheme (NDIS). Once you are on the NDIS you can stay on it past 65, until you permanently enter an aged care facility. You can also access a limited number of respite days and still maintain your NDIS eligibility. We had access to the NDIS and it enabled me to keep Liz at home until 6 months before she passed away.
Resources
There are heaps of resources available. Not so many for Younger Onset Alzheimer's but the general principles of supporting someone with Dementia apply, no matter what their age. Dementia Australia https://www.dementia.org.au/ and Dementia Support Australia https://www.dementia.com.au/ are two I have accessed. Just google for other options.
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