in answer to Respite

[Redalfie]

I have been diagnosed with PSP. The problem is, you remove to much of their independence from them and you will do it forever. My wife, granddaughter and daughter take fabulous care of me. But I am always fighting for my independence. It’s a fine line. Only you can decide. (By the way- I am level 4 of care in Australia which is the worst)

[Bergenser]

Dear Redalfie

I am glad to hear that your wife, granddaughter and daughter are taking good care of you and that you have access to the highest level of care package in Australia thecareside.com.au/post/hom...

You raise an excellent point about the fine balance between independence and care. As a caregiver for my husband during his PSP journey this was sometimes the most difficult thing to explain. As my husband increasingly struggled to communicate it became ever more important that those around him knew his preferences and fought on his behalf to make sure he could live the way he wanted - even if this was more risky or even went against medical advice.

This could be big things like when to stop driving his electric mobility scooter and risk feeding vs tube feeds. It could also be little things like whether to have alcohol at festive occasions or spending money on gifts (suitable or unsuitable).

Probably the biggest thing was walking on the beach and getting in the water - this would increasingly lead to falls, and relying on helpful strangers - but it would be wrong to deprive him of the opportunities to do the things that brought him most joy 🌞

I hope you continue to fight for your independence and that those around you continue to understand your wishes and preferences.

Encourage them to think "how can we help you do the things you like" rather than "how can we stop anything bad from happening".

All the best in 2025

Bergenser xx 🌻

[rougegorge in reply to Bergenser]

Yes, yes, yes. Thank you for discussing this fine line in all of its complexities. My dad did not have PSP but another type of dementia, degenerative progressive aphasia which affected his movements and involved several falls. However, we let him keep as much of his freedom as long as possible, even if it included a risk. I do not regret it.

[Redalfie in reply to rougegorge]

Thank you for your reply. It is nice to know that I’m on the right track “even though it may upset the loved ones who are very special to me, (my daughter and granddaughter mainly)”.

[rougegorge in reply to Redalfie]

This is because your loved ones care about you and are afraid. You have to consider the personality of the person you are trying to protect and respect this while protecting them as best as you can. Not an easy task.

[rougegorge]

I had a very dear friend diagnosed with PSP. He is gone now. Also felt his family was caring but removing too much from his life too soon. May be wrong but I totally agree with what you feel and think.