Along Came Alzheimers…And A Much Needed Holiday At Home

You know the feeling of needing a holiday. Time away from your own life realities, if even for a few days.

You are probably exhausted from work, life events, health issues, chronic illness fatigue in general, and numerous other reasons.

My list of reasons for needing a holiday is not short!

Life is full of ups and downs, as they say, and bad news is part of life.

When Life Gives You Lemons Make Lemonade

For Easter this year, I was given a cushion cover with the well-known saying:

” When life gives you lemons, make lemonade”

I wrote a blog post on this topic two years ago. It’s literally all about turning our chronic illness lemons into our own special lemonade. If you’d like to check it out, the article is called Let’s Make Some Lemonade .

Let’s get back to the lemons being thrown at my husband and I at the moment. These are not small lemons they’re huge life changing lemons.

While some of the lemons involve my chronic illness journey, I’m not focusing on those in this blog post. I’m focusing on my husband and the life changing news we received last week.

A few weeks ago, my husband ended up in hospital with a suspected stroke.

After numerous tests, including an MRI angiogram, a stroke was ruled out, but he was told he had short-term memory loss and “wear and tear ” showing on the MRA.

I could have told them that, so I wasn’t particularly happy with the outcome.

Once I was able to view the actual MRA report  and do some research, it was apparent the damaged area of the brain was a little more than “wear and tear.”

In fact, the Radiology Department Dr had reviewed an MRI my husband  had in 2016. This MRI was originally for a sinus issue and was not assessing other parts of the head. Had the reporting Dr at the time looked at the scan a little more holistically, we would have known my husband was already on the path towards Alzheimers disease. The comparison between the 2016 and 2024 scans shows significant progression of the brain damage that indicates Alzheimers disease.

Findings:

Reference is made to MRI of the cervical spine 21 October 2018 and MRI of the brain performed 1 June 2016.

Brain:

Involutional changes are present and progressed when compared with the prior MRI examination performed in 2016. The changes are most pronounced involving the temporal lobes where there is widening of the temporal horn of the lateral ventricles and the sylvian fistula.

We did have a teleconference booked with his specialist, so I was happy knowing I’d get a chance to talk to the Geriatrician/ general physician.

Along Came Alzheimers

On the day of the teleconference, my husband was feeling good. However, the Dr was an hour late, causing fatigue to set in.

The phone call was a disaster. My husband couldn’t remember words and was fixated on a particular subject and wouldn’t let it go. The phone was on speaker, and I could hear the Dr was finding communication difficult. The whole thing was painful to listen to.

I knew I needed to help out, so I quickly introduced myself and let the Dr know my husband was struggling. I decided to be direct with my concerns and explained that we had been married for nearly 30 years and that my husband’s behaviour was not normal for him. I explained a couple of key abnormalities like verbal aggression, falling asleep while eating, confusion, unable to remember or find words, and severe short-term memory loss. I also told him I needed to know what we were dealing with, and I didn’t want to sweep anything under the carpet. I explained that our family wanted to support and care for my husband, so a diagnosis was important.

The words the Dr said next were heard as clear as a bell by both my husband and I:

“It’s early onset dementia/alzheimers disease”

Despite never wanting this for my husband, I was also so relieved. I knew he had Dementia but having a specific diagnosis of Alzheimers is so helpful.

We can now understand his behaviour better as symptoms are quite definite.

I found the Alzheimers Queensland website and was very excited to find they have a series of simple resources that explain everything we need to know about this disease.

Even my husband has read them, and he said he’s found them incredibly useful. He can even see he’s had this disease for a while.

I’ll leave the link to the resources below if you would like to read them:

Alzheimers Queensland Resources

We have a whole new life ahead of us now, but I’m determined to not only stand by his side but to stay by his side. We are in this together. He has always supported me through thick and thin. He is still an amazing carer even though our roles are reversing more and more each day.

We are, however, so exhausted. We need a holiday, but routine and familiarity are important for anyone living with Alzheimers, so going away is not an option, plus we can’t afford it.

Thankfully, we both agree that there is no place like home.

There’s No Place Like Home

So, why not holiday at home?

Given my disabilities I wouldn’t be able to do much other than stay in the holiday apartment if we did go away.

Our own home has every creature comfort we could need and is set up to assist me with my disabilities.

It really is my very own Bed n Breakfast.

Medical expenses and being pensioners doesn’t leave us with any spare spending money, so a holiday at home ticks the budget box perfectly.

All we have to do is commit to a holiday at home plan. We need to decide what this will look like and what changes we need to make to achieve it.

I love a plan and I really love a planning session, so this is part of the fun and anticipation.

My Holiday At Home Plan

• Decide how long the holiday will last…..we’ve decided the next 6 days.
• Cancel all unnecessary appointments
• Let your close circle of supporters know your plan… We might decide to text every few days to let them know we’re ok. If your situation is like ours, remember they’ve been worried about you given the severity of your health, so a contact plan is important for everyone’s peace of mind.
• Plan Activities…..reading, watching movies or sports as the mood takes us.  My husband will enjoy a walk or time out to take photos, we can play word games, enjoy good food, and some holiday treats plus the odd  snooze as needed.
• Don’t Plan Anything…..It doesn’t really matter what we do. If we have a plan and it works great, if it doesn’t, it doesn’t matter. The whole idea is to dial down the stress and focus on anything relaxing and non health related.
• Set Up Your Own BnB… This can be the fun preparation part. Put fresh linen on your bed. Perhaps the budget may stretch to a new duvet cover or bedspread. Add some extra cushions, a throw, and a breakfast tray. Before you know your bedroom could be a new BnB room, all set for your holiday at home. escape.

I’ll still be in extreme pain, I’ll still be severely disabled but I would be like this no matter my location. My husband will still have Alzheimers. A holiday at home won’t miraculously change our circumstances.

It can change our mindset though which is key. It will take us away from a life focused on illness, q rehab and recovery.

We need to step out of the medical world as far as possible, just for a few days.

So, if like me, you’re exhausted and a little fed up with the medical merry-go-round you’ve been treading, considering shaking things up a little.

Give yourself permission to relax, to reclaim a little normality. Be sensible and keep in place anything crucial to support your health needs, but remove any non essentials for a few days.

A holiday at home has some huge advantages. For us they include:

• The comfort of our own bed;
• No packing or unpacking required;
• All my mobility aids on hand;
• Our comfortable lounge chairs/recliner;
• Our own TV, wireless network, Netflix etc…no signing in required;
• We can choose the food for our fridge and pantry….all dietary requirements looked after.

I’m sure your holiday at home plan will have its own unique and important advantages.

The point is, trying to go away when health is complex, can be incredibly stressful. A holiday at home could be the perfect solution.

Have a think about it. Have fun planning it and above all, if life is a little overwhelming and you’re exhausted, don’t think for too long before taking action and booking into your very own, “at home,” bed and breakfast!

Take care

Sam xx

Medical Musings with Sam

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