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Tuesday, October 4, 2016

Your Dying Spouse 215 - A Caregiver's Bill Of Rights

We're linked with Messy Marriage's From Messes To Messages. Please drop by for some great marriage resources.

If you're a caregiver, you probably sometimes feel like everything's revolving around the patient - and as it revolves, some of it regularly comes round and smacks you upside the head.

It's frustrating; you can easily become more a 'role' than a person.

So, here's a Bill Of Rights for a caregiver - specifically one caring for a husband or wife.

  1. You have the right to be treated with courtesy and respect - illness may make your husband or wife frustrated and impatient, and pain may make them harsh, but beyond an allowable point, they can't take out their problems on you. You didn't bring the illness, and you're not responsible for the restrictions on their life. You're trying to help, and you're entitled to kindness and courtesy.
  2. You have the right to say no - chronic and terminal illness can easily give a feeling of entitlement ("I'm dying, I deserve this!"), but you have the right to push back and refuse intrusive demands. You are not a servant; you're a care-giver.. You're doing your best, but you should not bow to slavery.
  3. You have a right to privacy - this is going to sound a bit weird, but the loneliness engendered by terminal illness may drive your spouse to follow you...everywhere. You have the right to use the bathroom in privacy. Period.
  4. You have the right to your own interests - you've got the right to read about things you like, and watch the television shows you like; you don't have to track the tastes of the patient with your own tastes (and some patients do implicitly demand this).
  5. You have the right to worship - chronic and terminal illness can drive a person away from God, but you don't have to accompany them on the journey. You have a right to your faith, and the right not to have it questioned.
  6. You have the right to your own friends - time constraints arising from caregiving duties may make spending time with friends quite constrained, but you have the right to maintain your own friendships, and a patient's jealousy of them is not appropriate.
  7. You have a right to seek respite care - everyone needs a break, and if your duties are essentially 24/7, you have the right to look for trusted and qualified respite care so you can take some time to yourself.
  8.  You have the right to optimism - your spouse may be depressed - dying is depressing, after all - but you don't have the obligation to be sucked into that pit for 'togetherness'.
  9. You have the right to information - to do the best job you can, you require that your spouse tells you what is happening - physically and mentally - when you ask. "I'm fine" when the patient isn't, or "Leave me alone!" aren't acceptable.
  10.  You have the right to be a person - you are in a caregiving role; but you are an individual with an individual worth, outside that role. You will have a future on the death of your spouse, and it's up to you to build the support system, internal, external, and spiritual, to meet that future. You dion't owe the rest of your life as a monument to the dea. You owe it to the Almighty, to be lived to the best of your ability.
What did I miss?

Marley update...he's received a lot of support, but STILL NEEDS HELP TO BE SAVED.


He's up to nearly 200,000 signatures, but the local authorities are dragging their feet. They think that we'll give up and go away. We won't.

If you have a mment, I'd like to ask you to visit Change.org to consider a petition to free a 'death row dog' who has been separated from his family for ten months over a misunderstanding. Marley was saved from Afghanistan by a US serviceman; please help make sure this story doesn't end in needless tragedy! Marley's gotten a lot of support...but he still needs our help.

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.


  1. Hey Andrew ... this is a pretty comprehensive list. You've landed on all the things that matter.

    I'm doing a post on caregiving next week ... mind if I link this up?

    Good stuff, pal ...

    1. Linda, thank you so much...and I'd be honoured if you'd link this post! You just made my day!

  2. This is a very thoughtful list, Andrew. You and Barbara have lived this life, so your expertise on all of this comes through very vividly. I pray that this will help all the caregivers out there who let guilt, anger and fear creep in and poison the caregiving relationship. What a tragedy that would be. I'll be sharing this, my friend!

  3. I know this is for all caregivers but you are such a good husband and patient to be so aware of your wife and caregiver's feelings. Praying for you and Barbara

  4. Good advice. It's not an easy task for any involved. I am thankful there are special moments.