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 Helping sibling adjust to parent's condition? 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Helping sibling adjust to parent's condition?
I am not sure if this is the right category so please redirect me if it is not.
One of my siblings just visited our mother for the first time in three years (almost one year post-DX) and was really disturbed by the changes in her, despite my having sent out regular updates to all my siblings via e-mail all year). I don't know the best way to help. I have explained the course of the illness and the question keeps coming back as to when all the changes will occur. I'm no expert but I know enough to say that it is not predictable because everyone is different. I do understand wanting to know, but does anyone have any suggestions? Other than the most obvious--educate yourself. That has not worked. I think there is some denial going on, e.g., my sibling would not even set foot into the SNF where Mother lives ("didn't want to remember her that way"). (To which I thought, to myself, "Welcome to my world"). Any ideas would be welcome.

Thanks,

Julianne


Mon Dec 27, 2010 6:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Helping sibling adjust to parent's condition?
Julianne -

My suggestion is to give no further thought to this sibling. Include the sibling on your regular reports but don't engage in predictions or any other questions. What's the point? It's simply a waste of your time.

You might recommend a book such as "After Shock" (aftershockbook.com).

Robin


Mon Dec 27, 2010 7:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Helping sibling adjust to parent's condition?
I think you need to just go about doing what you're already doing - keep people abreast of what's happening, but between your brother or sister not visiting for 3 years, being in denial, not wanting to visit her in the SNF and not wanting to be educated OR helping you out, there's nothing you more you should do, in my opinion.
It is more frustrating to try to educate, engage and try to elicit help from a sibling who isn't inclined to do any of that that to just let it go now. Take it from one who's been there, done that!
There is quite a bit of discussion on this forum somewhere about sibling issues. It might be good for you to read to see how many of us had difficulties with our siblings, especially when it comes to helping out with the care. Misery loves company maybe?! I'm sorry about your situation but know pretty much what you are going through. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 7:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Helping sibling adjust to parent's condition?
It's always an exercise in frustration to try to change the attitude and behavior of others so why beat yourself up? As has been suggested, send regular reports, don't be judgmental, just accept the fact that you are the one bearing the whole burden of responsibility. I'm sure most of us on this forum fall into the same category. God bless you for being the caring, responsible person that you are! :P

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Dec 27, 2010 7:42 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Helping sibling adjust to parent's condition?
Robin, Lynn, and Pat,

Thanks for your thoughtful replies! This is my eldest sibling by several years and being the "baby sister," the other three are pretty used to telling me what to do and when I am wrong! No surprise there. I guess I expected someone older to be more mature. No??

I appreciate the reality checks! I needed reminding that there is nothing more I can do except for what I have been doing.

You guys are so helpful! Thanks again!

Julianne


Mon Dec 27, 2010 8:37 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Helping sibling adjust to parent's condition?
Julianne, I remember with a smile one afternoon while sitting in the hospital with my mother, age 94, when she asked who would be spending the night with her that night. I told her I did not know becaused Evelyn had not told us yet. Evelyn was our youngest sister and let us know who should be where and when. That's just the way it was. Yu are carryiing a heavy load and I wish you the best. Wish I could help. Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Dec 27, 2010 8:56 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Helping sibling adjust to parent's condition?
Yes, you are carrying a heavy load, Julianne, and I just want to say 'thanks.' My younger sister carried the heavier load with our mother (who died in Sept at 104) and I've tried to let her know in many ways how much I appreciate what she did. That job always falls on one of the children more than the others and I suspect it is often the youngest. My younger sister stayed close to our mother while I traveled the world. I owe her a tremendous debt - and I'm very aware. I want to extend my gratitude to you for what you are doing.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 9:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Helping sibling adjust to parent's condition?
I remember whining to one of my close friends last year about how I wished there were more than 2 of us siblings. Her answer "don't spend any more time on that. No matter how many kids are in a family, it is ususally 1 person who bears most of the responsibility and just gets upset with all the others who are doing little or nothing to help out." She was one of 7 kids, and the one who was responsible for her mom when she became very ill. She spent many frustrating years trying to get others to help, to no avail. The more I meet other CGs, the more I see how true that is.
I was so glad that my sister stepped up and planned my dad's funeral and lunch afterwards. She did a great, thorough job and I barely had to do anything. That felt really good that agreed to do all that and I didn't have to make decisions, make calls or run around town. Now I'm still doing paperwork to settle the estate, get the house ready for sale, etc. so we are back to our usual roles. At least I can see the light at the end of the tunnel now. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 9:38 pm
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Joined: Thu Dec 02, 2010 1:44 am
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Post Re: Helping sibling adjust to parent's condition?
My experience with my siblings was a little different when I was the caregiver for my parents. They were both quite ill, but neither had dementia. My sister tried numerous time to help them, but they always told her and my brother the same thing. Don't do anything, Bernie is coming and she knows what to do and how to take care of us. I was the only one they wanted. So I loved them, took care of them, and tried the best I could to make them happy. Since my sister did not assume the daily responsibilties of their care. She instead took care of me. My parents died 2 weeks apart.


Mon Dec 27, 2010 10:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Helping sibling adjust to parent's condition?
That sounds like a lovely sibling story and thanks for sharing. It must have been incredibly difficult to lose both of your parents so close together. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 10:59 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Helping sibling adjust to parent's condition?
Thanks to everyone for your encouragement. It is a heavy load but it definitely has rewards. And my siblings are generally very appreciative and supportive of me. I think it was just hard for the eldest to see how much our mother has changed, and the same questions I had at the beginning are coming up--how long is this process, how long will she be able to communicate, how long will she know us? Last night, my sister spent 20 minutes on the phone with Mother, trying to help her remember how to work the volume and channel changer on the TV remote, and she couldn't do it. Who knows what cognitive function will disappear next, or whether it will come back? The not knowing is one of the hardest things.

Julianne


Mon Dec 27, 2010 11:51 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Helping sibling adjust to parent's condition?
Julianne, I agree with the others, you have enough on your plate. If you have "extra time" do something for yourself.
Take care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Dec 28, 2010 7:41 am
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Joined: Mon Nov 22, 2010 1:24 pm
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Post Re: Helping sibling adjust to parent's condition?
Julianne,
Be glad for your sister's questions. I am the younger sister of two and the sole caregiver. My sister is in another state far away. She was in denial of Mom's condition up to the end. Talk about frustrating. She is a nurse and never did any research on LBD! I will never forget a phone conversation. I had sent Mom to see her for a couple of weeks. Me: so how is Mom? Sister: Fine, I dont see anything wrong with her.

Sharon E.


Fri Dec 31, 2010 11:55 am
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Joined: Mon Nov 22, 2010 1:24 pm
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Post Re: Helping sibling adjust to parent's condition?
P.s.

Even at time of death, my sister wanted, needed to know how long was left so she could decide if she should take this planned trip! She expected me to be able to time her death. I guess she thought I had control of everything.

Sharon E.


Fri Dec 31, 2010 11:58 am
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Joined: Mon Dec 27, 2010 11:34 am
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Location: North Carolina
Post Re: Helping sibling adjust to parent's condition?
I'm sitting here trying to think of the correct word- ironic, amusing, funny, sad? Shortly after the dx my sister and I had a huge blow out during one of our phone conversations. I remember yelling "You are not here. I am." Since then, we've been able to communicate a hundred times more effectively. I studied empathy a lot in grad school and I constantly have to remind myself that my siblings will never really understand the changes now in the beginning stages because they will always have the showtime moments. They have vacation days, trips to the malls, soccer games, and a life that only encompasses minutes of phone conversations with mom. I know it is hard not to doubt but volunteering for this journey already shows that we are capable of making the best decisions.

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Katie (36) daughter of Marcia (70)


Fri Dec 31, 2010 12:56 pm
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