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kateia
@kateia

Posts: 53
Joined: Sep 15, 2016

Care Giving Class/project

Posted by @kateia, Sep 19, 2016

My sister and I will be participating in a care giving project that the University of Iowa is doing to monitor the care giving process. Don’t know a whole lot about it other than filling out a questionaire and belonging to one of two groups. We do not meet until November. I will share what I learn with the group!!

REPLY

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/

I have been through a 7-8 week program called Powerful Tools for Caregivers that was taught through our local Extension Service. Caregivers in the class ranged from taking care of dementia, Parkinson’s, cancer family members, to caring for friends plus a couple others I don’t recall. From that program one of the members started a support group in her home that meets twice a month. I have not seen either of the two sites that you listed but will peruse them I the near future. There is so much need for support out there and so much denial that anything is wrong with family members. I begged my sister and brother for six years to get involved and work to have help for mom but they were kind of “see no evil” “hear no evil” “speak no evil” type mentality and kept putting off helping. My goal is to have immediate information available for those that need it. So many times you are just visiting with others and the topic arises.
Can the information on the sites be used in a group setting? I would love to show the video’s from the Caregiving Years to church groups. What I saw of the first video really impressed me. I have been attending some Alzheimer’s meetings in our area. I have also visited with a hospice worker that is also interested in getting something started. Thank you so much for the information. Sorry I’m rambling.

Hi @kateia This sounds very interesting and I, too, will be interested to see what unfolds from the University! Sounds intriguing for sure and I congratulate you for participating.

@colleenyoung

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/

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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.

@kateia I just sent a message to the author of the videos, Denise Brown, to find out if they can be used publicly. I’m sure she will say yes, but it is best to check. I’ll be sure to let you know what I find out.

Kate, I really admire the work you are doing to share your experience and gained knowledge with people new to the experience of caregiving or, in some cases, people who may have been caregiving for years but didn’t realize there were others out there to help support them. Good for you.

@colleenyoung

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/

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@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 so much, Colleen, for pointing me to this discussion.

Kateia, I would be honored if you used my videos in a group setting. So, yes! 🙂 And, please let me know if you need anything else or have any other questions.

Best,
Denise

@colleenyoung

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/

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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 🙂

You make me cry. Thank you so much. The need is so great and if family would know ahead of time what to expect or what to look for… transitions would go so much more smoothly. There is just so much denial that anything is wrong. Again, thank you.

@colleenyoung

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/

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

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