27forParkinsons: Day 27 (Wednesday)

WOW - that 27 days went quickly ...

Gratitude:

Thank you to all who have followed my posts for the past 4 weeks, liked or commented on them and donated to Parkinson's Aust - my target was $250 and I've been overwhelmed with the generosity of friends and family, the total I raised is $885 (if you would still like to

donate you can do so for the next couple of weeks via the link I posted).

Doing this challenge taught me a lot, raised questions in my mind-the what-ifs, should I have, could I have, why did I, why didn't I - it raised some happy memories, some sad ones, I've smiled, I've cried and hopefully I've raised awareness of Parkinson's and in particular Lewy Body Disease.

I'm so grateful to have such wonderful family and friends ... thank you one and all

2Mezza J Oneill and Sue van der Heide

 27forParkinsons: Day 26 (Tuesday)

Caring for someone you love 24/7 often 'just happens' - often it's a gradual process - sometimes it's not - like most things in life, the experience for each person can be so different, yet similar.

Caring can be complex

Caring can be rewarding

Caring can be demanding

Caring can be tiring - try exhausting

Carers need care too

Carers need respite (a few minutes, few hours, few days, few weeks)

Carers need support

We all need love

Recently I've been asked how I cared for Bill for so long - I'll admit there were times it was difficult but I'd do it again in a heartbeat if I could have him back ... so I thought today I'd share a few tips that were given to me that I found useful -

Spend quality time - use the 3 P's

Pleasure - you both enjoy the time

Participation - you both get involved as much as possible

Presence - you show you want to be with the person

Any simple activity can be a positive experience

Past hobbies and skills can be a good starting point (mmm the jigsaw puzzle idea didn't work too well for me)!

Activities don't have to be long - they may only last 5 minutes (depending on your loved ones attention span)

Technology can be great - Facetime calls with family/friends - especially during lockdowns!

Keep in mind also ... DOING NOTHING TOGETHER CAN ACTUALLY BE DOING SOMETHING

Activity is still worthwhile even if its soon forgotten

Simple experiences you can share:

Go for a drive

Eat an icecream

Go out for coffee

Reminisce - look at photos

Prepare dinner

Bake biscuits

Listen to music

Visit an art gallery

Fold the washing

Watch TV (even if it has to be sport sport sport)

Seek support and help - it's out there to be used

My Age Care can benefit both of you immensely and help keep a loved one at home longer (it is a good idea to set the wheels in motion early as it can be 18mths before package approval)

MAC can provide home care services, cleaning, lawns, garden, meal preparation, respite care (short term), shopping, equipment and aids.

Bill balked a little at the thought of having 'strange' women coming into our home to sit with him whilst I took time out, however, he soon looked forward to their visits - especially the drives Fiona took him on.

Carer Support Groups - companionship, support, trips and outings I've so enjoyed my time with LCHS Sale Carer group - Puffing Billy trip was something Bill really enjoyed and he never seemed to forget Corina and her 'poo talk' (every trip has to have an educational component)

Friends and family - if they offer their time to sit with or take out your loved one - take them up on the offer.

Dementia Australila - website

Carer Gateway - website

Parkinson's Australia - website

Weather warming up (for how long??) Tuesdays I meet up with a group of friends for Hydro Therapy exercise (and chatting) - looking forward to next week when the cafe opens up again and we can stay for lunch (best hot chips and gravy in Sale).

PURE GENIUS - ANNEMEKE MEIN

 27forParkinsons: Day 25 (Monday)

Communication and Connection

Communication is essential for maintaining our identity and connecting us to others. The content of your everyday exchanges may be relatively unimportant. What counts is its role in connecting us together

Language skills and vocabulary can diminish as dementia or illnesses progress, however the desire to communicate does not. People continue to want to understand and be understood. You can keep the communication going even when it feels one-sided.

The person with dementia may forget details of recent events, or the event itself. This is not an indication of indifference or lack of significance, it is simply one of the major impacts of dementia.

Good communication tips:

Talk to the person, not the carer, family member or friend

Greet the person with a smile and get their attention

Make eye contact and use body language.

Speak clearly

Express one idea at a time - provide information in small chunks

Use simple direct questions

Don't offer too many choices

Remove distractions

Be patient, don't rush, allow the person time to find the right answer

Don't prejudge the person's level of understanding

Don't take the person literally

Use humour

Use clear and simple language

Don't argue or confront

Respect the person's dignity

As I've said previously it's not always easy to follow the guidelines/hints/suggestions put forward by the experts - just don't beat yourself up if you slip up ... I know I was guilty of talking for Bill on many many occasions (maybe if I'd known then what I know now it may have been different), patience would run out at times (when you're existing on 3hrs sleep). Also, remember it's sometimes difficult to establish fact from fiction.

Whenever I go to the Gallery I always take another look at the amazing intriguing stunning work of Annemeike Mein ... here's a few pics of the current display .... to really appreciate the work you need to click on each photo ... truly amazing

THE ARCHIES - ARCHIBALD PRIZE

 

27forParkinson's: Day 24 

When things change: (from Dementia Aus)

The person with dementia may have forgotten about some of your shared interests and memories, but they are still the same person 

Try to focus on the person they are now and respect what they are dealing with.

Connection with others is still important to them.

You can help them maintain a sense of identity and worth. 

How you behave towards a person can be a powerful reminder to the person of their role in your life and the value of that role to you. 

While your interactions with the person with dementia may change over time, you can still enjoy common interests in different ways. Simply being with the person with dementia can be comforting for both of you. Over time, the person with dementia may need more reassuring human contact. Hold their hands, link arms or offer a hug.

 I think this year I spent more time watching TV and in particular football and racing than ever (it had to be sport as he was unable to comprehend or his attention span was limited) with most other shows) - to be honest, neither of us was really watching most of the time, Bill would nod off and I'd play games or surf the internet on my ipad - he just needed the security of knowing I was there.

Went to the Archibald Prize Exhibition with Elaine and H today ... some amazing portraits there, so many different styles and mediums, well worth a visit if you get the opportunity. (I'm sure Bill would have really enjoyed it) Pleasant late lunch at The Dock overlooking the Port of Sale. After Elaine went home I got the pruning shears out and attacked the daisies out the back ... hard work for my shoulders, think I might pay for it tomorrow ... next week I'll attack the ones under the kitchen window. Just a few of my favourites today ...

 27forParkinson's: Day 23 (Saturday)

Continuing on with Support

(thanks to Dementia Australia)

If your friend or a family member has been diagnosed with dementia, you may feel shock, anger or denial.

For many people, it can also come as a relief as they 'suspected something was wrong.

It's important to remember that the person with dementia (or Parkinson's) is bound to have plenty of powerful feelings too.

They may experience:

loss

sadness

confusion

anxiety

embarrassment

fear

frustration

anger

paranoia

It's important to be there for the person with dementia and maintain a good relationship with them.

At times, your connection may be put to the test. It's important to stay connected, support each other and talk about how dementia/parkinson's is impacting the way you feel.

Putting yourself in their shoes and making peace with the new chapter of your relationship can help.

Our relationship was often put to the test and I know I don't stand alone here, speaking with others who have loved ones with dementia, they have said they feel the same. No matter how hard you try, how much you love someone, there are always going to be those 'down days', days when you're tired through lack of sleep, your own health.

Personally, I found great support through LCHS Carer Support Group. I only managed to make one of the LCHS Dementia Support Group meetings and thankfully I did as it was at this

meeting I met Mel F a local Dementia Aus support worker ... I didn't think then that I would need her support quite so soon. I can't thank Mel enough - and urge you, even if it's only a question which you may think is silly or irrelevant or someone removed from your situation - reach out to Dementia Australia, their website has a wealth of information and they will put you in touch with a local support worker.

My mood today matched the weather, cold and wet - a lovely message from my 'bestie' set me off crying .... but thanks for the lovely sentiments and no I'm not special I just loved him so much .... computer decided to disconnect itself from the internet whilst I was transferring photos from my phone ... sorted it out eventually.

SPRING AT LAST - WELL AT LEAST FOR TODAY!

 

27forParkinsons: Day 22 (Friday) 

SUPPORT .... (taken from Dementia Australia booklet) 

These principles could apply to most serious long-term illnesses.

Family and friends really matter.

They help us all navigate life's ups and downs. 

They accept us as we are.

If a family member or friend has been diagnosed with an illness - it's natural to feel unsure about what this means for the future.

• You play an essential role in their lives.
• You support them on their journey 
• You listen without judgment 
• You respect them and accept them as they are 
• You provide a link to their past and their future 

While dementia may cause some things to change over time, important elements of the relationship can still remain.

One thing that doesn't change is their need to be a valued member of a family or circle of friends. 

In fact, this may be the time they need you - as their family or friend - the most 

Instead of focusing on what the person can't do, it can help to focus on the things you can still enjoy together

Over the past 2 years, maybe longer, I thought Bill was becoming unsociable, I now know this was just another part of his illness that was never explained to us. Not long before Bill went into care, I watched one day as Rob continued a conversation with Bill even though Bill kept nodding off every few minutes, Heather never came round without finding Bill even if just to say Hello to - Bill was aware of that as he commented on how H always included him, most of our friends were the same, me well I just got used to having one-way conversations - just a sign of complete togetherness! I believe the dementia part of Bills illness was what he found the hardest to cope with - especially the last few months when he'd struggle to find words or his thought process and speech froze.

 Yesterday (Friday) I went back to Physio/Gym after seven weeks .. not even a little sore today - wore my Parkinson's Tshirt to promote the cause .... home for a quick change ... appointment at the bank - had to make a 'libran' decision (does taking Bills name of our bank account seem callous or is it just common sense, is it better to feel the pain now or have continued pain) - thanks Kaz (Westpac Sale) for your guidance and assistance. Then I was off to Maffra to have lunch with Marlene ... so lovely sitting outdoors enjoying a beautiful sunny spring day at The Coffee Bean - I recommend the Thai Beef salad.

BEAUTIFUL DAY FOR A TRIP TO BAIRNSDALE

 27forParkinsons: Day 21

Walking, freezing, falls (cont)

Useful tips - ways to avoid Freezing episodes include:

Always take your medications on time

Walking to a rhythm (listening to a beat or music can help)

Avoid distractions when you're walking, just focus on long steps

Ways to overcome an episode of freezing include:

Prompt yourself by saying aloud 'left, right, left, right' or one, two, one, two'

Stand still and start swinging your arms

Start shifting your weight from foot to foot

Visualise an imaginary line to step over

FALLING:

Walking problems can make people living with Parkinson's more likely to fall. Some of the more common causes of falling for people living with Parkinson's include:

Freezing

Short and shuffling steps

Tendency to lean forward

Reduced blood pressure (Bill experienced blood pressure spikes -highs and lows)

Environmental hazards

Each of these problems can interfere with a person's balance, resulting in a fall

Falls are more likely to happen and cause serious injury in the later stages of Parkinson's. Be aware that falls can occur at any stage of Parkinson's.

Falling is particularly hazardous because of the risk of serious injury. Falls are a common cause of hospital admission for people living with Parkinson's. Whilst minor cuts and bruises are common, more serious injuries can occur and make the challenge of living with Parkinsons more difficult.

It is a good idea to report falls with your GP and/or specialist - particularly if falls are becoming more frequent. Adjusting medications can be helpful in some situations.

A good idea is to keep a journal/note book/diary specifically for recording falls, blood pressure changes, medication changes etc as sometimes dates and times are hard to remember.

Useful tips - to lower risk of falling

Always take medications on time

Undertake regular exercise to help with balance and leg strength

Walk to a rhythm - listening to a beat or music can help

Focus on long steps when walking

Remove hazards in your home, such as mats, rugs or furniture that blocks walkways.

Trip to Bairnsdale today with Noelene ... coffee, food, op shops, iced coffee, food, antique shops and Bunnings ... great day - very enjoyable. And so proud of myself - I managed to fit new hose fittings to the garden hose myself .... never had to do so before .. new skills I'm learning.