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Lessons I Learned From Caregiving

Posted by Scott, Volunteer Mentor @IndianaScott, Sep 13, 2019

Good day caregivers everywhere! I hope, no matter where you are, the sun is shining on you today.

I love to write and just the other day I finally felt strong enough to begin to write about the experiences and lessons I learned during the time of my wife's illness and my years of caregiving. Up until now I have basically written about the pre-cancer times in our lives.

Rather than take up space here and retype them, I thought I'd invite any caregivers here, who are interested, to simply check out the below links. I have titled them as Shifting Gears since prior to this my website has been mainly focused on wine. I know -- big shift 🙂

The first is what I see as some of the primary lessons I learned as a caregiver, noting there will no doubt be more to add:
http://dpwinecellar.com/gear-shifting/
The second, which I just wrote today is what I call busting the bromides I encountered so often as a caregiver:
http://dpwinecellar.com/gear-shifting-busting-bs-bromides/
Certainly I have not hit them all so I ask are there any bromides that as a caregiver particularly get your dander up?

Interested in more discussions like this? Go to the Caregivers Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 12, 2019
In reply to @becsbuddy "I just returned from helping my 96 yr. old mother and I thought I’d pass along..." + (show)
@becsbuddy

I just returned from helping my 96 yr. old mother and I thought I’d pass along some things that I learned. My mother was always independent until a month ago. She had a nice apartment in a retirement community. Then a friend lost her balance and knocked my mother over and she sustained a broken pelvis. X-rays didn’t show anything but an MRI showed the break. Mom had to move to the nursing unit, in her building, where she is monitored and gets PT. So, what did I learn?

- Try to keep things as near normal as before—change can be disorienting. Work with the dietician to have food they like
- Have a table within reach for tissues, water, phone, brain exercise books like crosswords, suduko, acrostics, wordfind, solitaire
- Encourage upper extremity exercises while in bed and out of bed time (with assistance)
- Keep room cool at night to help sleep. Bring a quilt or blanket that can remind them of home
- Ask about attending care team meetings. My brother and I attended one for Mom . It included all disciplines
- Attend a physical therapy session, if possible

It was all exhausting, especially to combine her needs with the fatigue from my illness, but important!

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What I forget in my post yesterday was that everything doesn’t go smoothly! When I suggested that she might want her iPad (she loves following her children and grandchildren and great grandchildren) she insisted that she didn’t want it. Asked her if she wanted some fabric to start a new quilt, she said no. Everything I suggested, she didn’t want. 😑 Except she wanted to turn on the TV volume but was sure that would bother the roommate. My mother loves to follow all the latest political news but she was sure her roomie must be the other political party! Oh well, just do your best!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 22, 2019
In reply to @lah "Now His skin looks sun burned with acne and he says it is non stop painful...." + (show)
@lah

Now His skin looks sun burned with acne and he says it is non stop painful. It has spread down to his chest and inside thighs and hands. Another scan next week to see if it is working.

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@lah. How has your husband been doing? What have the doctors said about the skin rash (burn) and acne?

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1 reply
lah | @lah | Nov 23, 2019
In reply to @becsbuddy "@lah. How has your husband been doing? What have the doctors said about the skin rash..." + (show)
@becsbuddy

@lah. How has your husband been doing? What have the doctors said about the skin rash (burn) and acne?

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Hi! Thank you for asking! I've been tying to get on here but crazy busy.
He had a scan on Monday and we saw the dr on Wednesday. He has had 3 treatments of Vectibix and the nodules decreased by almost HALF!! That is the best result we have seen from any chemo or immunotherapy since this all started 6 years ago. His face is still very painful. It has spread on his back, arms, hands, legs, chest and neck. They are not as painful as his face.
Dr is skipping the next 2 treatments, then scheduled again for December 17th.
I bought a dozen white pillow cases-- because they need to be changed daily. I use unscented soap for his clothes. Aquaphor seems to feel the best. Its very greasy tho . I got him an electric blanket cause he is so cold all the time. He is an electrician and yesterday a pair of dykes fell off a ladder and hit him on his nose . Ugh!!
We are hoping his face will start to feel better soon! Anyone have an idea how long that might take?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 23, 2019
In reply to @lah "Hi! Thank you for asking! I've been tying to get on here but crazy busy. He..." + (show)
@lah

Hi! Thank you for asking! I've been tying to get on here but crazy busy.
He had a scan on Monday and we saw the dr on Wednesday. He has had 3 treatments of Vectibix and the nodules decreased by almost HALF!! That is the best result we have seen from any chemo or immunotherapy since this all started 6 years ago. His face is still very painful. It has spread on his back, arms, hands, legs, chest and neck. They are not as painful as his face.
Dr is skipping the next 2 treatments, then scheduled again for December 17th.
I bought a dozen white pillow cases-- because they need to be changed daily. I use unscented soap for his clothes. Aquaphor seems to feel the best. Its very greasy tho . I got him an electric blanket cause he is so cold all the time. He is an electrician and yesterday a pair of dykes fell off a ladder and hit him on his nose . Ugh!!
We are hoping his face will start to feel better soon! Anyone have an idea how long that might take?

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@lah. I’m so glad to hear from you! Sounds like you and the doctor are doing everything to address the painful rash. Are you also using unscented soap for the bedsheets?
Sounds like the Vectibix is really working well for your husband! Keep us informed. We care

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lah | @lah | Nov 24, 2019

Yes unscented soap on everything he wears or sleeps on. ! Thank you!
Its been almost 3 weeks since his last treatment and it still looks awful. He says doesn't feel any better at all. It's not permanent is it??

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2 replies
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Becky, Volunteer Mentor | @becsbuddy | Nov 24, 2019
In reply to @lah "Yes unscented soap on everything he wears or sleeps on. ! Thank you! Its been almost..." + (show)
@lah

Yes unscented soap on everything he wears or sleeps on. ! Thank you!
Its been almost 3 weeks since his last treatment and it still looks awful. He says doesn't feel any better at all. It's not permanent is it??

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@lah. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644628/. I found this article from the National Institute of Health about skin rash causes by Vectibix. It’s a long article but only a couple of pages refer to the rash. Sure hope he gets better! Tell your husband to keep his skin clean so he doesn’t get an infection!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 24, 2019
In reply to @lah "Yes unscented soap on everything he wears or sleeps on. ! Thank you! Its been almost..." + (show)
@lah

Yes unscented soap on everything he wears or sleeps on. ! Thank you!
Its been almost 3 weeks since his last treatment and it still looks awful. He says doesn't feel any better at all. It's not permanent is it??

Jump to this post

@lah. Here’s another helpful site: https://fightcolorectalcancer.org/blog/preventive_measures_reduce_rash_from_vectibix/

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