May 14, 2018

Alzheimer's and The Invisible Siblings

Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned by those with an equal stake in our loved one’ s care.


Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned
By Pamela R. Kelley
Alzheimer's Reading Room

Buried in the comments to Bob’ s article, In the Bunkhouse, Random Thoughts Edition, and in reference to the growing number of Alzheimer's caregivers (almost 15 million), I noticed this exchange:
Carole: "What I'd really like stats on, are those who have a close relative with Alzheimer's ... and they refuse to help. I want a stat on the deadbeats so they can see themselves officially identified. Right now they are invisible".

Nancy: “ Hear, Hear!!! I totally agree!! If everyone who identified themselves as a primary caregiver also indicated how many siblings they have who do not help … well, my conservative estimate is another 15 million!!!”


Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned to our mission by those with an equal stake in our loved one’ s care.

Reading the above exchange made me wonder about those invisible siblings and adult children.

How can they blithely carry on without realizing how important and meaningful a small act in support of the caring mission would be? Then, I began to identify all of the assumptions I made when I formulated the question.

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I assumed that they are untroubled by their abdication of support responsibilities. I assumed that they know what to do in support. I assumed that they are capable of empathy, for their afflicted parent as well as for their burdened sibling.

Is it reasonable to assume any of this?


Why should it matter whether the invisible sibling is troubled by their inaction? Perhaps because we want to believe that eventually their consciences will prod them to action. Perhaps we cling to this hope despite months and years of evidence to the contrary simply because hope is part of the gravitational force that pulls us forward and through every day.

Maybe they don’t know what to do after all.

The last thing the caregiver needs is another task -- that of educating the absent ones on how to help. No primary caregiver can manufacture compassion and empathy in a person unfamiliar with these states of mind and heart. That Herculean task need not be added to our abundant responsibilities.

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Everything we choose signifies something about us. We who have chosen to be the One need only consider the invisible ones to realize that another choice existed, and it’s a choice we rejected.

Spending our emotional capital lamenting the incomprehensible choice made by those who have turned a blind eye or hardened their hearts will only deplete us. We can’t afford that.


When I’m troubled by matters like these, I look for a way to frame an invisible sibling’s behavior that explains it. I’m just looking for some sort of rational context so that I can steel myself against future disappointments.

What can feel punitive usually isn’t intended in that way. Contextualizing it lets me put this burden aside for a while, if I’ m lucky.

If you’re burdened by a family member who is missing-in-action, what do you do?


How do you keep those feelings from intruding in the positive and caring environment you work so hard at maintaining?

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Pamela R. Kelley is a caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. Ms. Kelley lives, works and writes in Anchorage, Alaska.

Citation
Publisher Alzheimer's Reading Room
Author Pamela R. Kelley
March, 2011
Title: Alzheimer's and The Invisible Siblings
https://www.alzheimersreadingroom.com/2011/03/alzheimers-and-invisible-siblings.html

Original content the Alzheimer's Reading Room

28 comments :

  1. Replies
    1. Bob I do not like this ! I am not a technical person, just started not too long ago on my computer, self taught. I have noticed not too many people are commenting, and I really miss reading these comments which are very helpful. By the way, now you have two Angels looking over you from above. Smell the Roses, they are by your side.

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  2. I was living in TX with my Mom who I was a caregiver for. My stepdaughters said, "come to FL, we will help you with your Mom". I moved to FL in 2006. Not one time did they ever offer to come over and stay with Mom to give me time off. In fact, when I asked the younger stepdaughter (in her 50's), one time to stay with Mom while I went out, charged me $20 an hour.

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    1. I hope that you didn't pay her the $20/hour. Better yet, tell her "It's in the mail!!" Shame on her.

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    2. I totally agree with Denise.

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  3. As an elder care mediator, I frequently work with caregiving families. And, yes, there is usually "the one" who has stepped up to be the primary caregiver. In a few fortunate families, that primary caregiver receives substantial support from siblings, but that is rarely the case.

    While "the one" is entitled to resent the lack of assistance from siblings, I've really come to conclude that some (not all) of those nonhelpful siblings are blissfully ignorant of the care needs of mom or dad and the incredible burdens placed on the shoulders of the primary caregiver. Some are in denial of mom or dad's illness, some are clueless as to the illness's symptoms and care needs, others believe they can't help (or shouldn't have to) because they don't live close enough, have a family of their own or have a full-time job. The primary caregiver may have already made the sacrifice to move closer or to actually move in with mom or dad, to cut back hours or quit a job, and to spend less time with family and friends to respond to caregiving duties. Once those sacrifices are in place, others can convince themselves that "the one" really has more time to help mom or dad (and now he/she truly does, because he/she has rearranged life to make that happen, which reinforces siblings' conclusions).

    Those siblings who do have some idea of the care needs often do feel guilt, but may not have a true idea of how to help if they can't quit their jobs and move in with mom or dad. Their own guilt and feelings of helplessness frustrate them and,in some perverse way of thinking, may actually make them angry with the primary caregiver. Relationships and feelings aren't always logical.

    While I know the primary caregiver does not need any additional tasks, it may fall on him/her to point siblings in the direction of education (the Alzheimer's Association, Alzheimer's support groups in their area, this wonderful blog, etc) and to create a list of tangible realistic things other siblings can do to help right now. Examples: spend your vacation here with mom so the primary caregiver can take a vacation; take over bill-paying, taxes and other financial tasks that can be managed long distance; research services or products the caregiver needs and communicate the info to him/her; pay personally for shifts of in-home or adult day care on a regular schedule (even if only once or twice a week) so that the primary caregiver can have a break; if close enough, commit to showing up every other weekend and providing care personally at those times so the primary caregiver can get away or rest; support the primary caregiver through regular phone calls, e-mails, etc.

    The primary caregiver may have to ask for help, not in that vague indefinite undemanding way ("I need help") but by asking for very specific types of help that are within the capabilities of siblings. Make it easy for them to say yes by suggesting what they can do to help -- don't leave it to their imagination because they probably don't know what you need. Admit you need help and support and then ask for exactly what you need.

    If the primary caregiver is too exhausted, or too hurt or angry to educate and ask siblings, then a respected neutral party, such as a caseworker, clergy known to the family, or an elder mediator, can help the family discuss care needs and how to more fairly divide caregiving responsibilities. If family tensions and emotions are running high, the intervention of a neutral professional can decrease stress levels and improve communication.

    Not only does the primary caregiver need and deserve assistance, siblings need to feel they have contributed to mom or dad's care and they need to spend precious time with ill parents while they can. Siblings who miss those chances will likely feel great guilt and loss upon the death of a parent.

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    1. I do agree that you need to ask and be specific in what you are asking. I went through a phase of thinking 'they should know I need help' and sort of mentioning things that would be nice to do without ever actually asking, in most cases it doesn't work.

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  4. Pamela, it is not just siblings, you have the caregivers looking after a spouse whose children do not help as they should. Fortunately that is not my position. I am very fortunate that my children are pretty good but they don't all live close. I now also have the support of Paul's siblings, which wasn't always the way, but as his illness progressed they realised that he wasn't going to get better and he could not help the way he is. They are now very supportive.

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  5. Excellent article! Thanks!

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  6. Pamela,

    I'm guessing that I just returned from one of my clients homes, where the caregiver (usually a child) was giving me an earful on their siblings dereliction of duty. I was probably expressing some of the anger and pain thrown at me just hours before.

    So let me clarify my remarks; not all disappearing siblings or other family members are deadbeats. Many of them are not contributing for the reasons Dee so aptly described. However, some ARE deadbeats. Just as not all parents who don't pay child support for their children are deadbeats for any number of valid reasons (illness, unemployment, etc...) but then again, some who don't pay child support ARE deadbeats. In my 8 years out there with families, I've got to tell you that I have experienced some deadbeats in the flesh.That said, more family members who weren't there answering the call expressed reasons more along the lines Dee was talking about.

    I do think that the caregiver does have some responsibility in educating the others if they really expect them to step up to the plate. Perhaps if the caregiver has a disinterested (read independent) professional third party approach the others to educate them on the realities of the situation (as Dee says) they will listen better. No family dynamics would clutter up the message.

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  7. In all honesty .... You do what you have to do.

    You do what is right. You do not try to understand others but keep on keeping on. God provides energy, strength and rest when we need it.

    I love this site! It has become a lifeline for me. I don't feel so alone.

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    1. i totally agree. My siblings, some of them do not want to know or help. No point worrying about it.

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  8. I'm an only child and single. I have nobody to help with my Alzheimers family member, and often feel resentful because of that. I don't know what's worse: nobody to help at all, or "deadbeat" family members who could help but won't.

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    1. Perhaps you can make an appointment with someone who specializes in eldercare and get advice on what services your parent qualifies for. You may have to hire a sitter, but you could discover some valuable resources available to your parent that you don't know about. My friend, also an only child, discovered her Dad qualified for funds through his military service that she was unaware of. It enabled her to hire help when she needed it. In our county there are senior day centers available on a sliding monetary scale that might be helpful. Someone in the eldercare community could point you in directions you may be unaware of. Good luck and hang in there.

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    2. Believe me "deadbeat" are the worst. If they don´t exist you don´t have to look at any body in the eye when the time comes. Ask for help and express your situation.

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    3. I am also a single only child caring for a aged parent with Alzheimer's disease. My mother is 93 years old and needs 24-hour care. It is very lonely having to make every decision and handle all of mom's affairs by myself. But at least I don't have to deal with the negative emotions that absentee siblings evoke. I am ArnieK.

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  9. My brother has not been here in six months. My Mom passed away in september, leaving me to be dad's caregiver. Once dad gave my brother mom's car on dec.31st, he has not been back. He calls on the last saturday of the month and chats for about 10mins. Seriously?? Yes, I am angry.. from the time mom took ill in august, until the day he got the car all I heard from my sister-in-law and him was I was not in this alone. Really??? My brother has weekends off and I know he had 3 days for memorial day.. did he show up? No! Did he miss Dad being honored as a WWII vet in a ceremony?? YES! I was blessed to take Dad to the ceremony in his Marine uniform. He is still handsome in it at 87. I cherished every second of that day, knowing it might be his last Memorial day. With health issues and alzheimer's one never knows what tomorrow brings..I feel sorry for my brother because when dad passes he will have that guilt to bear and I will know I did everything possible to make Dad comfortable and happy. It's a 2 hour drive, but guess dad is not worth his time to make the trip. I am blessed with a husband who helps when I need him to make small repairs for dad or get his lawn mower running.. he understands is dad calls and he has "lost" something and I have to go and help him. I am also blessed that right now dad can still live at home and drive a little bit. He gets VA benefits that help pay for someone to come in several times a week to cook and do light house cleaning. It gives me a few hours to do things I need to or go to the gym and workout. I have found my time at the gym to be beneficial, not only for my health, but my mind as well.

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  10. Pamela,

    What a great topic to cover! So many helpful and thoughtful comments from readers, too. You are a wonderful writer. Hope you keep submitting articles to Alzheimer's Reading Room!
    Tom & Karen Brenner

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  11. My brother was an invisible sibling - he lived out of state (I moved mom from his state) He is a doctor, and behaved more like a doctor and less like a son. Oddly, after mom passed, it finally dawned on him that family is important and he is now my new best friend. While this is nice, it is ironic and sad that he couldn't be there for the family that needed him most.

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  12. Great topic and Dee's reply was right on. I feel for all of the responders' situations. We all have similar but different lives going on. As a sibling who lives out-of-state from a much-loved Mom who is slowly needing more care, (not Alz,maybe MCI and other physical issues) I yearn to help more but rely mostly on phone calls to my sister, allowing her to vent, give opinions...but she knows that my husband and I have been and still are caregivers to his Dad (severe Alz) and this limits my ability to visit as much as I'd like. As adult children, we are truly the filling in the middle of a sandwich. Our children need our love and support as their lives grow with spouses and children and so many of us are spread across the country and around the world. We really need to rely on email, text, phone calls, handwritten notes too.

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  13. Our invisible siblings. Two of them have caused such a cruel cascade of tragedy...some people really ARE mean, and aging parents and inheritance will bring this out in the open. And the abandoned caregiver has been weakened by caregiving duties, loss of income, and pure stress of the entire situation...now formerly congenial relationships with siblings are full of rancor. you are stepping up to bat...expecting support and teamwork...and they WILL to NOT.

    Yet, if we are to keep our sanity, and our soul, WE are the ones who also have to do the hard work of forgiveness...with no expectation of redemption or apologies of the other parties.

    There are all sorts of methods to do this, usually gradually, and a good place to start is to view for free the long Oprah LifeClass that was done in toronto a few months ago. Deepak is one guest, but Rev. Jake really seemed to hit the nail on the head.

    The other forgiveness teacher, if you have to go cold turkey and into the dark night of the soul...if you think you want fairness and justice, but can admit you REALLY want vengeance, want to destroy all threads of hope in the other...then listen to audios by "medical intuitive" Caroline Myss. "Why we don't heal" from soundtrue.com can get you started. Oh, why we don't heal...we have so much of our healing grace (energy) tied up in past...blaming others. "forgiveness is the single most important act you can do for your body."

    My first encounter with her work was "Invisible Act of Power," about her research into generosity. OH, I'm a caregiver, generous...it will be affirming. WHOA...why we are NOT generous was half the presentation. Very sobering...and inspiring as well. You can hear many of her teachings on Youtubes to see if her approach clicks with you.

    i learned from a therapist that bitterness and resentment usually start out as disappointment. Oh...She was right...usually I'd say to myself, "I can't believe she did that..." "I can't believe she stood me up...said that...hasn't apologized..." When there is no rightful apology or action by the other, anger crusts it over...and resentment builds up. If found that getting in touch with that simple human sad initial disappointment...I could almost float the crusts of bitterness off the event.

    Generally, family caregiving in this country is considered a gift, and there is no legal requirement for a son or daughter to care for a parent...not like there is for parent to care for child. In Asian countries, usually tradition says it is #1 son who has this responsibility...most of work put on #1 daughter in law. However, then grandparents help babysit the kiddies...so lots of tradeoffs. At the end, #1 son family inherit family home. son may resent being stuck with this, but with the many tradeoffs...In this country, caregiver does all the work in final years, and all siblings come running for equal share of the inheritance.

    Oh, goodie! "Another learning experience!" More to forgive, more room for us to grow... ;-)

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