← Return to Care Giving Class/project

kateia (@kateia)

Care Giving Class/project

Caregivers | Last Active: Sep 20, 2016 | Replies (10)

Comment receiving replies

Interesting @kateia. I look forward to hearing more about this project when you learn more in November. Do keep us posted.

Have you heard about the “Stages of Caregiving”? Some say there are 4, 5 or 6. What are you thoughts on these articles?
– The Caregiving Years, Six Stages to a Meaningful Journey http://www.caregiving.com/the-caregiving-years/
– 5 Stages of Caregiving – Like a dramatic movie http://www.caregiversolutions.ca/caregiving/5-stages-caregiving/

Jump to this post

Replies to "Interesting @kateia. I look forward to hearing more about this project when you learn more in..."

Hi @colleenyoung and I hope you don’t mind me horning in here, @kateia 🙂

I viewed the sites and their information.

On a positive note, it is good organizations are putting out more information for caregivers.

Personally, and this is just my personal opinion, I dislike, REALLY DISLIKE, presentations like this, which give the impression there is a progression you need to follow, your patient will follow, you will follow, etc. THIS is the same issue I have with the vast majority of grief discussions and the artificiality, but seeming iron clad view, of the ‘stages of grief’.

Even the second one, while saying caregiving is fluid, the author, a doctor, says ‘caregiving unfolds into five distinct stages’. Again with the presentation of one person, but telling others this is how it will be. This is the path…. Plus caregiving is NOT like some movie.

I also do not see anywhere near enough ‘maybe’, ‘could be’, ‘possibly’, ‘perhaps’, wording. The resources suggested, the options offered, etc. are NOT always available, possible, etc. Nor are the suggestions prefaced with ‘if possible’ or ‘if your situation allows’.

Also I am forced to wonder, by some of the wording, if the person who did the first series was actually a caregiver. There is no way on god’s green earth I would have had the time to do all the things which are told to me to do in each stage. Can you say ‘pie in the sky’?

There are also a lot of very hurtful statements used, untrue fluff, and more, but again that could just be me. I found the ‘transitioning caregiver’ to be the worst. Saying my patient seemed to live nine lives is an insult, callous, and more as I would give anything for one more minute with my wife.

Life is not charted for anyone ahead of time — and certainly NOT with caregiving, grief, and loss.

Just my two cents plain.

@IndianaScott – I REALLY LIKE that you reviewed the links I shared and gave a frank critiqued from your first-hand experience. This is precisely why I asked in my original post “What are you thoughts on these articles?”
Thank you.

Are stages superimposed upon situations in attempt to make order out of situations that are decidedly un-orderly?

Words can be hurtful. I regret that the resource was hurtful, but I am thankful for this conversation. I look forward to hearing from other caregivers. What helps? What doesn’t?

As Scott demonstrates, we can be honest in our critique. What might help one may not help another and vice versa.

Thanks for your understanding, @colleenyoung. If nothing else I tend to be brutally honest when it comes to caregiving. I always try and state it is just from my point of view and experiences, but always want to focus on being as honest as I can be. This stems from two things:

1) I believe far too many articles in the media are painting a totally unrealistic picture of real life caregiving. I do not understand the media’s desire to focus on those caregivers who are doing things 99.9% of caregivers can’t. In one week of July — one week — I read one article about a caregiver who was able to fly from New York to California every other weekend to care for his father and his company gave him that time off. Then one where the caregiver’s company paid for her full pay and benefits while she took as long as she wanted to be a full time caregiver for her spouse. Then the topper was one with the headline that screamed this caregiver “I never had a bad day caregiving while my spouse died of cancer”. And these were all in major media and thus giving a huge number of folks the wrong idea about what real caregivers go through. No wonder so many in my family thought I was always whining or complaining, seeking attention, etc. The uninitiated many get a very skewed view of what we caregivers do and contend with when this is what they read and think is ‘average’ or the norm in American society.

2) I believe in all of life, but especially when a person is a caregiver, words matter. For 14 years my wife lived in her own kind of healthcare hell. During those years she weighed every word she heard and the words she spoke. What did it mean? What did it really mean? Why was it said? Was there a subtle hidden meaning? What caused this was her fear of getting more bad news from her doctors or nurses and more the fact that people would talk to her on the phone or in person and make promises to her they did not keep. All she wanted was the truth and so words became sacrosanct. Her word, and your word, were an invaluable bond. It was in large part also responsible for why she crafted her own Service of Celebration to be held after she died..

I am forever thankful she focused on words so much because it was contagious. I was always honest with her so she knew when I spoke I only spoke the truth. I was careful to do what I said and not overpromise. She rarely minded me saying ‘no’ so long as I explained why. Plus, while I am sure over those years many of her medical team members felt me far too blunt, I was always honest with them and forthcoming with my concerns for my wife. After all she was only their patient.

I would write things while she was ill and she would ask me to read them to her. Her most common critique of my writing style was this: “Scott, quit writing at me, write to me.”

I will try and remember that advice more here 🙂

This is priceless – “… quit writing at me, write to me.”