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

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@AngelaM98460 My heart goes out to you...my grandmother and my Dad both had Alzheimers; Daddy just died 5 months ago so I know what you mean when you say you feel that gut wrenching feeling when you think of your mom. It is such a rough road and for you - your mother was so young - I can't imagine. I was blessed to have my Dad until he was 94 years old, and my grandmother was 88. It's such a huge loss for you and I understand the PTSD. I hope you are getting some good support and treatment for your PTSD and grief. 

 

One thing that I think helped me deal with the experience of caregiving for Dad, which may be helpful for you as your grandmother lives with Alzheimer's: I never felt like my Dad was not himself in the sense that the essence of him was always still there. I found that interacting with him and treating him as I always had seemed to help him and it also helped me. My mindset was a big part of caring for Daddy. I looked for the glimmers of his personality - and they were always still there on some level, even if they were hazy from the disease. He was still my adorable Daddy, could still comfort me if I put my head on his shoulder, still had a glimmer of his sense of humor even to the end, still loved music, still loved and responded to hugs and sunshine and comfort. The last really clear thing he said to me two days before he passed was "thank you" - that was him all the way. Always a gentleman and always aware of what to be grateful for.

 

I hope maybe you can look for and focus on the essence of your grandmother and maybe that will help you and your Dad. 

 

Take care, and be gentle with yourself over The Holidays.

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

 

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

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My mom was diagnosed with a rare form of Alzheimer’s at 42 years old, which took her life 7 years later, at the ripe young age of 49. Nine days ago marked 6 years since she passed away, even though it feels like just yesterday. The pain still hurts so bad everyday that I can barely stand it. I spent most of my twenties as her part time caregiver. I lived with her and my stepdad, and took care of her during the day while my stepdad was at work. When he got home, he would take over watching her, but I would never leave, so I was always around if he ever needed help. My mom had a habit of trying to walk off, so we had to keep an eye on her at all times. When it comes to my moms caregivers, my stepdad and I were it, even though both of her parents are still alive, she has 2 sisters and 2 brothers, and I have an older sister. They would all visit every now and then (maybe a couple of times a month for 2-3 hours, at most), but all had a plethora of sorry excuses for not helping out more (or at all) with time or finances. But yet, still had the audacity to talk badly about us behind our backs, saying things like how we weren’t doing enough, even though we were doing our best and they were nowhere to be seen. But, if you ask me, they are the ones who lost out. Because even though watching my mom go through all of that messed me up really bad psychologically (I’ve been diagnosed with PTSD because of it), I wouldn’t change being with her for what little time she had left for anything. She was the sweetest, most beautiful woman I’ve ever had the privilege of knowing and I’m lucky enough to call her my mom. Not a day goes by that I don’t think about her and miss her terribly. I just hope some day I can think about her without this heart breaking, gut wrenching pain. Unfortunately now, my grandma on my dad’s side has Alzheimer’s (but not the rare form my mom had), and will one day take away the second most wonderful woman in my life. What’s even worse, is that now my beloved dad is going through the hell and heart break of watching his mom deal with Alzheimer’s and it’s devastation. It’s devastating to the person who has it and devastating to the family members with the hole in their heart it inevitably leaves behind. As it takes away everything that makes you “you”, in my opinion, it’s the worst disease a person can be afflicted with by far. Prayers for everyone dealing with Alzheimer’s, not just those afflicted, but also their caregivers! All the best, Angela M.

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

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When my Mother was dying from a brain tumor my sister being a Nurse wanted to keep her at home. 

She did the nursing stuff 1 night me the next, we also took turns cleaning for my Dad. My brother did almost nothing. 

 

My sister taught me what she could, she did the real Nurse stuff, making sponge things on my Mom's should's etc so she didn't get bed sores, and we took turns sleeping  there a lot. .  

I had a 40 hr a week job, 1 child and a husband at the time. She had 3 kids, a husband and no job. 

 

I was OK until she wanted to teach me how to put a catheter in my Mother and I felt I could not do it. She insisted I could and I was very nervous and upset. 

 

Unfortunately the next night my Mother passed away, and at 76 pounds. When we went to the funeral home, the Under Taker asked us who cared for our Mother and we said we did, he said what a good job we did, she had no bed sores. She had been bed ridden about  6 mos. 

 

My sister and I were upset my brother could have at least sat w/her, or even tried to feed her, we did not expect him to nurse her. 

 

As for me and my husband  our youngest daughter was killed and we only have 2 Grand Children left and 1 is a boy. Our Grand Daughter says she will never put us in a home, but that may change when she gets grown w/a family.  She is 20 now. 

 

My husband is a Veteran, but it is something I do worrying about as we really only have her and each other, but I do not dwell on it. 

 

I did what I could do for my Mother, cried doing it as it broke my heart, and really wish I had my  own children to do the same for us. 

Live For Today, No One is Guaranteed a TOMORROW !
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Re: Sharing responsibility when caring for someone with dementia (Dementia Expert Series)

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My mother never went anywhere or did anything fun while she worked as a nurse. She was an RN nurse, so she made pretty good pay. She saved everything she made so now she resides at a dementia unit in a retirement community. My sister puts one of her retirement checks in the bank once a month since she still works, and I, being retired pays her bills. She 91 yrs old, and, I believe it is due to DNA. We drive 1X a month to visit. 

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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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