Sam’s Snippet Number Four – Alzheimers, Challenges and Blessings

To say life was peaceful, relaxed and full of hope at the moment would be a lie.

We are consumed with change to nearly every part of daily living.

We are getting there but not without consequences…some good, some not so good.

Let’s have a look at what I mean by that….

Alzheimers Diagnosis

Ensuring my husband is receiving the best support and care he needs is my first priority.

So much has happened this past week it’s hard to know where to start.

The good news is his government funded Level 2, My Aged Care Package was finally allocated last week. This provides him with $18000 AUD to use over the year for care at home, including all Allied Health care (OT, Speech Pathology, Physio, Dietician, etc.), and overnight carers for when I’m in hospital, cab charges for transport and much more.

This sounds amazing, doesn’t it but the only issue is $18000 doesn’t stretch far and the money is released on a monthly budget so that restricts services in the early months of the package being allocated. Each month, we will have to juggle needs verses needs rather than needs verses wants.

I’ve engaged the services of a highly recommended service provider, “5 Good Friends” to help me navigate all this.

We can only afford the OT and speech pathologist for Sept/Oct, and they are a priority, plus a carer to take him to a PET scan in 2 weeks’ time. I’ll explain more about all that in a moment.

It also means I won’t be able to go into hospital as planned for my health review in October.

I know many of you won’t like the idea of me postponing until next year but there is sound reasoning ;

Peter needs a solid routine as we navigate all his upcoming appointments;
He needs time to be familiar with new carers and allied health professionals as it can cause terrible episodes of confusion or other adverse behavioural changes if new routines aren’t carefully managed.
He needs time to adjust to his impending drivers license loss. Such a life change for both of us, but especially for my husband.
I have to attend appointments with him as he is struggling to communicate, and specialists and Allied Health Therapists want me there.
My Orthopaedic Surgeon would prefer I manage at home as he thinks I’m safer here in terms of infectious diseases, etc, particularly given my current lymphorrhea diagnosis (leaky legs from lymphatic fluid build-up)
I am seeing my specialists and GP regularly and have registered nurses’ visits twice a week, plus a carer and cleaner, so I have support.
We have amazing neighbours looking in on us and are on hand, and a close friend of over 20 years lives around the corner. Afternoon teas are always a lovely distraction with her, plus she so often helps us in our hours of need.

The Much Awaited Neurologist Appointment

This week, we finally had Peter’s Neurologist appointment.

It’s not great news. Within minutes, the neurologist picked up that he had Dementia. He has been diagnosed with a rare form of Alzhiemers called Logopenic Progressive Aphasia caused by Frontotemporal Dementia.

It starts by affecting his ability to speak, and all the more common Alzhiemers symptoms kick in, which are worsening as the disease progresses. He will eventually totally lose his speech.

His disease is progressing fast.

Here’s an informative link that explains his form of Alzhiemers so well:

Logopenic Progressive asphasia

He is booked in for a brain PET scan in two weeks’ time and will be seeing a neuro psychologist in October.

My heart is breaking, but I know he needs me. He’s been there for me for so many years. There is no way I’m not going to be there for him now.

Blessings

No matter how dire things are, there are always blessings to be found.

Despite difficult circumstances, it’s helpful to keep a look out for silver linings and for unexpected blessings. Celebrate the kindness of others when you weren’t expecting it, or look back over the events that perhaps led you to a place where you were made aware of an unknown and potentially dangerous issue. I’m so incredibly grateful for my silver linings and am definitely looking for them!

For example…My new carer is an absolute angel. She took us to Peter’s neurologist appointment, and she is already part of the family. Her car couldn’t have been more perfect to support my broken back. It is a Volvo SUV with all the bells and whistles possible.

She will be my permanent carer as far as possible and she is so amazing with Peter. Nothing overwhelms her.

We have also been blown away by the love shown from friends and acquaintances, whether it be prayer support, beautiful messages, monetary gifts, etc. we feel hugged and supported, and that’s priceless.

We feel blessed that Peter’s diagnosis has been clear. It’s helpful to know exactly what we are dealing with, despite wishing he didn’t have it. Knowledge helps you prepare for the future.

We feel blessed that Peter’s specialists seem a perfect match for us. So much care and concern permeates from them.

If you are feeling overwhelmed by your own difficulties, take a moment to reflect on the circumstances surrounding the difficulties and see what silver linings you may have missed. I hope you find some and realise you too can find a sense of peace in the midst of what may seem endless chaos.

Take care….I’ll keep you posted.

Love Sam xx

Sam’s Snippets

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