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Re: Sharing responsibility when caring for someone with dementia (Dementia Expert Series)

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Speaking from my own experience, it is not just with Dementia but any time an ageing parent has difficulty taking care of themselfs. When my mother starting having a great deal of difficulty taking care of herself the responsablility fell on me alone as I am an only child. After a year of day after day the responsablility was becoming overwelming. My mother had a sister and a brother and their accociated families and I asked for some help but none were willing to help even just a little. I finally was able to hire and outside person to come in on apart time schedule to help but it was not cheap. I ended up having to work as much overtime as possible to pay for it which took away more of my time when I should have been at my mothers. As bad as this will sound I was some what relieved when she passed away, a great deal of stress fell away. My mothers brother and sister decided to at least show up to the small funeral, they did not talk to me nor did I talk to them. It has been almost 10 years now and I have not seen them or talked to them, I will not forgive them for abandoning their sister when she needed them. I hope others who have not had to take care of an ageing parent yet don't have to do it alone and are able to share the resonsability with other family members it sure will make the ageing parent fell and live a better life. 

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Re: Sharing responsibility when caring for someone with dementia (Dementia Expert Series)

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If you are a dementia caregiver, chances are you are super busy.  But sometimes you are super busy going super slow, helping with very challenging tasks that never seem to end, and you are trying to find all the patience you can muster.   It can be tough!  And all so easy for other people to say oh you must find time for yourself.  Maybe you are the spouse or an only child and sole caregiver, and there doesn't seem to be anyone else to help divy up the tasks!   Sometimes letting off steam through a community chat can help relieve some pressure, or someone else reading your posts can have a good idea to share.  If you have a sec., share your story!  Thanks.  Sarah

Sarah Lock, AARP Expert Brain Health
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Re: Dementia Expert Series, Week 2

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@agoyer wrote:

In our family, I took the lead as I was asked to do so by my parents, but my sisters all played important roles. For example, my oldest sister lived 2000 miles away and had very poor health and very small financial resources. So I asked her to call every night - and she did so, evey when she was feeling terrible, she made that call. My parents looked forward to those calls, and when my Mom died, my Dad perked up every evening when my sister called. Even when his cognitive abilities were becoming more and more difficult, when my sister didn't call, Dad would say, "We haven't heard from that one, you know, she hasn't called..." It helped keep him oriented and it mattered to him. 

 

For the last 2 years of my Dad's life, another sister moved from Ohio to Arizona to help care for him (I had moved 7 years earlier from Washington, DC to Arizona to care for both parents). She and I split up the direct care time, and supplemented with paid caregivers. Dad lived with me. 

 

Another sister didn't provide much direct care, but she came to visit periodically and when my oldest sister died, she took over calling every night. 

 

There's no perfect way to divide up responsibilities and tasks - every family is different. The most important thing is to draw on people's strengths, accept what people will do and make sure they do it, and know that it won't all be "equal" - there are many different types of roles needed - there is something for everyone! 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 


Wow your family has been through a lot, and works together as a team really well. I'm sorry to read that one of your sisters passed away. That's a lot of loss, three family members, in recent years. I admire you and your family, and all you do for others. thank you for sharing this.

 

jane

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Re: Dementia Expert Series, Week 2

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In our family, I took the lead as I was asked to do so by my parents, but my sisters all played important roles. For example, my oldest sister lived 2000 miles away and had very poor health and very small financial resources. So I asked her to call every night - and she did so, evey when she was feeling terrible, she made that call. My parents looked forward to those calls, and when my Mom died, my Dad perked up every evening when my sister called. Even when his cognitive abilities were becoming more and more difficult, when my sister didn't call, Dad would say, "We haven't heard from that one, you know, she hasn't called..." It helped keep him oriented and it mattered to him. 

 

For the last 2 years of my Dad's life, another sister moved from Ohio to Arizona to help care for him (I had moved 7 years earlier from Washington, DC to Arizona to care for both parents). She and I split up the direct care time, and supplemented with paid caregivers. Dad lived with me. 

 

Another sister didn't provide much direct care, but she came to visit periodically and when my oldest sister died, she took over calling every night. 

 

There's no perfect way to divide up responsibilities and tasks - every family is different. The most important thing is to draw on people's strengths, accept what people will do and make sure they do it, and know that it won't all be "equal" - there are many different types of roles needed - there is something for everyone! 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

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Sharing responsibility when caring for someone with dementia (Dementia Expert Series)

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How does your family divide up the responsibilities of caring for your loved one with dementia? 

 

Share what works for you or ask advice from others who have taken this journey.

 

Do you have specific questions on how to do this?  Our expert Sarah Lock is here to help you so don't hesitate to ask for advice .  She leads policy initiatives on brain health and care for people living with dementia and is Executive Director of the Global Council on Brain Health, an independent collaborative of scientists, doctors and policy experts convened by AARP to provide trusted information on brain health.

AARPTeri
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