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The Science of Caregiving: Bringing Voices Together Conference

Posted by @IndianaScott, Aug 4, 2017

I came across this conference on caregiving being hosted by the National Institute of Nursing Research (NINR). I cannot attend, but I have signed up for the free video feed of the conference. It is August 7 and 8. Some very interesting topics so I bring it to this group.

The physical conference is on the National Institutes of Health campus in Bethesda, Maryland, but the video feed is free and available to sign up for.

Here is the link. https://www.ninr.nih.gov/newsandinformation/events/caregivingsummit?platform=hootsuite

For those who cannot participate I look forward to reporting back here on what I hear and learn.

Should be interesting I think, although I do not know much about the NINR.

Peace, Courage, & Strength to all Caregivers!

REPLY

Hi indie Scott, today I attended a workshop call “physical well-being “ by the West Australian carers assoc., 4 hours of women complaining, stressed, some at terry eyed point, I came home feeling worse. They talked about isolation, ignored by friends and family, misunderstood, no pay involved, and the worst but poignant words were “a lost sense of self”. I came home, with a resentment toward my husband that I’ve been really trying to let go of. Truth is I hope to seperate from his emotional abuse then neglect, within the next few months. I have had enough and can no longer cope with being used this way. I feel not only used by my husband but also by a govt system that’s finding a cheap way out of dealing with the aging population, and that topic was brought up by the women as well. That’s a new resentment for me. It’s almost funny in a sick sort of way. Meanwhile this precious life passes by , each day , with living with a man who’s become a cold stranger , unless it suits him. I pray for the strength to leave and for each day for God to show me the way out of this relationship. Thank you for letting me get this out.

@mnina

Hi indie Scott, today I attended a workshop call “physical well-being “ by the West Australian carers assoc., 4 hours of women complaining, stressed, some at terry eyed point, I came home feeling worse. They talked about isolation, ignored by friends and family, misunderstood, no pay involved, and the worst but poignant words were “a lost sense of self”. I came home, with a resentment toward my husband that I’ve been really trying to let go of. Truth is I hope to seperate from his emotional abuse then neglect, within the next few months. I have had enough and can no longer cope with being used this way. I feel not only used by my husband but also by a govt system that’s finding a cheap way out of dealing with the aging population, and that topic was brought up by the women as well. That’s a new resentment for me. It’s almost funny in a sick sort of way. Meanwhile this precious life passes by , each day , with living with a man who’s become a cold stranger , unless it suits him. I pray for the strength to leave and for each day for God to show me the way out of this relationship. Thank you for letting me get this out.

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good day @mnina Good to hear from you and, while this may sound peculiar, I am happy you feel comfortable enough to ‘get this out’ here at Connect! Oftentimes just saying (typing) something helps me cope. That said it is unfortunate you find yourself in your situation. I wish there were some magic words that would help. Oz is ahead of the US in so many areas, it is tough to hear it is not so with caregiving.

It saddens me to hear the struggles of caregivers is truly so worldwide. The same feelings, pain, words, etc. It is mind numbing to think so few are actually thinking about this area of overwhelming need by so very many — and a need while given basic demographics will only be increasing!

I understand the feelings of being crushed by caregiving. I truly do. While I loved my wife with a deep and abiding love, there were those days when all I could think of was NOT caregiving! The never ending cycle of demands and often times lack of appreciation was an incredible burden. Again, in our case, I knew my wife had no available alternative should I not have been her carer, so on I went.

Stay in touch — and I will hold you in my thoughts for sure!

Continued strength, courage, and peace!

mnina,
I am so sorry to hear of your distressing experience. The caregivers support group that I attend locally has been very helpful and full of information as we share our concerns. Yes, caregiving can be very stressful and at times discouraging. Just know that we all have days when tears help and can’t be controlled. Your husband really doesn’t mean what he says and it is just his condition that is causing it.

I had a very discouraging day yesterday when I went to see my husband of 62 years at the care center where he has been since July. He immediately “ranted and raved” that I never come to see him, when I try to go at least every other day, as it is a 40-mile drive from home. I had been to visit him on Sunday and this was Tuesday. His brother had been to visit that morning and he seemed to have a good visit with him. He was agitated with the helpers and even tried to strike them, when he has never done that that know of. They just laughter it off and left him to “stew”. Very hard to witness that behavior when he was always so outgoing and friendly with everyone. Could talk about anything with everyone and always struck up conversations with people as we waited in line anywhere we went.

I know it is the disease (Alzheimer’s) and try to overlook things, but it is really hard and I am in tears many times as I drive home. Sorry to vent with my problems, but this group is so understanding and willing to listen.

AARP in the US is trying to get relief for family caregivers, including outside care for the care receiver (to give the caregiver a day off), tax deductions for family caregivers, and special training. Although my mother didn’t have Alzheimer’s, she had stroke-induced dementia, and it added up to Alzheimer’s. The calm, kind mother of my childhood gradually disappeared. She lost the ability to read, frame sentences, recognize me, became hostile, stole things, and swore like crazy. I kept reminding myself that it was disease talking, not my mother. If you go to the AARP website you may find some articles that help you.

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