How to Avoid Strained Sibling Relationships When a Parent Has Alzheimer's

Dealing with family dynamics when a parent has Alzheimer's

Siblings have a "strength in numbers" advantage over only children when a parent develops Alzheimer's -- but for every additional family member in the mix of caregivers, there's also an increased chance of communication snafus and discord in decision-making. Here's how to keep everyone in the loop and on speaking terms:

 

Agree to disagree

It's a blessed but rare family where everyone is in agreement about every decision pertaining to a parent's care. Differences of opinion are liable to crop up on any number of issues, large and small. This is only logical because although you might have been born into the same family, you each have different personalities, life experiences, and relationships with your parent. Your age, marital situation, birth order, financial history, and a hundred other details inform how you see a situation. And everyone brings this baggage to the difficult situation of caring for an ill parent.

Accepting that there will be disagreements is the first step in getting along better. You may win some, you may lose some. There's rarely one right way to handle things. The primary goal is that something gets done.

Outgrow old expectations

The typical dynamic in a family crisis is for adult children to revert to their childhood roles and perceptions. Thus, for example, other siblings perceives a successful lawyer as the "baby" of the family and don't take even her legal advice seriously. Or they expect the oldest, by default, to make the hard decisions, while they exclude the "black sheep."

Be aware that sometimes the damage is self-inflicted, and we limit ourselves by slipping into our childhood roles or seeing through the lens of family history.

Another inadvertent expectation is gender stereotyping. It's not necessarily the daughter to whom care should fall, while the son handles the money.

Remember that you're all grown-ups now, and that puts you on an equal footing. Everyone involved should have a say in what transpires. If you see someone getting left out, lightly point out that it's happening and help everyone correct course. If it's your parent who clings to rigid expectations from the past, it's important for all siblings to gently set him straight.

Realize that you need one another

It's virtually impossible for a single individual to provide Alzheimer's care for the duration of the disease. That's because 24-7 care is extremely stressful, and becomes more so as the disease progresses.

If you're the sibling who is the primary caregiver, provide candid appraisals of the situation for your brothers and sisters. Learn how to ask for help; often family members don't volunteer because they aren't sure what to do and from a distance can't see how taxing Alzheimer's care can be.

If you're not the primary caregiver, it's important to support the person who is, in words and deeds (and dollars, if possible). Caregiver burnout is a leading reason people with Alzheimer's move from a home to a nursing facility. Don't assume everything's going fine: ask, visit, call. Alzheimer's is not a onetime problem to solve; because it's progressively debilitating, your parent's situation (and the kind of help she needs) can change from month to month or year to year.

Practical tips for keeping sibling relationships smooth when a parent has Alzheimer's

Figure out how to divide the labor

Rather than having everyone involved in every step of the care process, consider the "divide and conquer" approach. Talk over each family member's skills, strengths, and life situation. A sibling who lives far away or who is a single parent shouldn't be expected to make exactly the same kind of contributions as one who lives next door to the parent, for example. One sibling may be most suited to discussing your parent's condition with medical personnel because he works in medicine or has had other firsthand experience with a medical crisis. Another may be more comfortable providing hands-on care, researching housing options, or working through financial and insurance matters.

Some families worry about placing a disproportionate burden on one sibling. That can happen to some extent; the person doing hands-on primary care has the toughest task. If one sibling feels resentful of doing more than the others, or feels guilty that she's doing less, there are ways to even things out. These might include financial contributions, providing relief care, or rotating schedules for care.

Share vital information

Putting key information in writing gives everyone access to the facts, while also leaving a paper trail in the event of disagreements later. Ideally, hands-on caregivers use e-mail to CC everyone at the same time. Even if you've all been in on a conversation, it can be helpful to have a written record afterward. Here are some examples of information to share:

  • Medical history, including dates of critical doctor visits and a list of medications with dosages
  • Results of doctor appointments
  • Outcomes of meetings with therapists or eldercare consultants
  • Impressions of your parent's condition following a visit
  • Financial information, including the costs of care and discoveries about a parent's financial situation
  • Contact information for health professionals and others involved in your parent's case

If you're the primary caregiver, sound out your siblings on the depth of information they feel they need. While regular updates are important, they may not care to receive a daily report about diet, activities, and so on.

Check in regularly

Don't communicate only at crisis points (after a diagnosis, after a fall). Even if you've lost touch over the years and aren't in the habit of regular communication, do so now for your parent's benefit. Agree to revisit the care plan you've put in place every three months -- and mark it in your calendar.

Try to avoid side conversations, by phone or in person or via e-mail, in which you make decisions without all siblings involved. It's normal for some sibling relationships to be closer than others, but in the long run, you need to make decisions regarding your parent's care jointly.

For big questions, such as those regarding legal guardianship or where a parent should live, try to arrange a family conference. If you can't all be together in one place, arrange a conference call in which everyone can speak on one line. Decide together if in-laws should take part in these conversations or not. Certainly the spouses of caregiver siblings will have insights and opinions worth hearing, since a large burden of care probably falls on them as well.

Don't second-guess

Above all, never criticize your sibling's efforts. Everybody is doing the best they can in the situation, especially the primary caregiver. The job is tough. If you feel she needs more financial, emotional, or practical support, be prepared to offer it, research it, and arrange it, rather than sitting in judgment. This is especially important if you live far from your parent and from the caregiver sibling.

Don't make promises you can't keep

Geriatric care managers note that families hit two of the most common stumbling blocks when a sibling loses touch with the reality of the situation: one, a sibling is in denial about how things are going; and two, a sibling clings to a promise never to institutionalize a parent.

Denial over the decline in a parent or the suitability of a care situation can lead to hard feelings all around. A sibling may be perceived as putting up roadblocks to the family's ability to do what's best, stirring up guilt and resentment.

For this reason healthcare professionals often advise not to promise a parent that you'll never put them in a nursing home. You simply can't know what the future will bring. Besides, many facilities for assisted living and long-term care make wonderful homes. By the last stages of the disease, your parent may not really understand where she's living.

Bring in outside help

When painful differences of opinion occur -- or rivalries that have festered for decades erupt -- a neutral third party can play the "mom" and restore peace. A geriatric care manager is a terrific resource for any family managing a parent's care, especially considering that the baby boomers facing these issues may have their own families to juggle as well. An experienced professional whom you all trust can make working through snags easier.


about 1 year ago, said...

Love what you have to say here. Im on a closed fscebook site and sorry to say the families of the people who are ill become collateral damage from the stress of the illness and lsck of coping skills. Everyones rmotions are so raw and they take it out on each other really hating the disease and impending loss. My mom has past away and thankfully my family was able to take a step back and realize we were of like mind and purpose to make sure mom knew we would be alright and her love made a family that stayed together and loved each other in her memory. She lives in our hearts slways and I try very hard to get that message accross but its not easy. But I keep it up anyway. Well thank you.


over 4 years ago, said...

It is very difficult for people to understand how hard it is to care for an Alzheimers family member 24/7 unless they have been there. Easy for anyone to point a finger and say "You should.......". Sometimes it is almost impossible for caregivers to ask for help. Especially after being rejected once or twice.


almost 5 years ago, said...

it was very informative and gave me good insight into what occurs when a parent declines, also what to expect from my siblings; i am the one presently visiting on a regular basis and caring for my widowed father of 5 years whom still lives alone at age 83 but my parents felt most comfortable with me regarding their healthcare and business matters, and thank God they at least took the proper steps in establishing a living will and advanced directives... they deemed me most responsible, and true too their words i intend on being fair in for fulling their wishes;while i have 2 younger brothers one of which i don't have a good relationship with and my middle brother has his own health issues to deal with none the less i will do as my parents requested and hopefully it will all work out without much drama.. in closing i might add that my dad suffered a significant heart attack approx 4 yrs ago this Nov the Doctors said too get his affairs in order that he wasn't expected to make it and my youngest brother challenged me on the decisions i made regarding his care, but it resulted in him have an additional 4 yrs of a good quality of life/ health after i gave permission for certain heart procedures and a pacemaker insertion which has improved his overall health and life and of course i discussed it with him prior to making such a decision after all i wanted to do what he my dad felt was rite most importantly; my youngest brother questioned me as too why i was doing all that to just let him go! thankful i did what i felt was rite and have enjoyed having him around all theses additions years as have my children and a host of family and friends.. i would do anything that my dad ask of me because i really appreciate all the things he and my mom did for me all my life, it's the least i can do and it's not a burden at all... well not yet at least =0)


almost 5 years ago, said...

This article helps but most people have no idea as to the devastation caused by Alzheimer disease. I ended up being the primary caretaker for my Dad. He would be rolling in his grave if he had any idea what my siblings have done to me. In fact both my parents died within 6 months. For 23 yrs I rented from them with the understanding that I would inherit this 2 family. The other apartment was to be my rental income to pay my taxes, as I am disabled myself. I didn't buy a home because of this agreement. For years my Sister would complain, saying she didn't like the agreement I had with them. It was none of her business to even stick her nose into, never mind do what she did. My parents had several properties. They set up their wills over 25 yrs ago. Intended to leave each kid a house except for the older brother. He was to get the family business & commercial property. They told everybody "Bobby's not getting a house, he knows he's getting the lion's share of the business & the commercial land with it" (Guess what? Trusted brother Bobby ended up with the business & commercial land, also property in Canada & the house in Florida too!) The 2 siblings they trusted the most turned out to be the greediest. I am still in shock over what was done to me. My Dad had Alzheimer disease for at least 5-6 yrs. Approximately 8 yrs ago he disinherited my younger brother because he hasn't been sober since High School. He had screwed my folks out of about 10K in back rent owed. He's 50 & his addictions to drugs & alcohol had led him to lose 2 marriages, a business & everything else in his life. My oldest brother removed this alcoholic younger brother from their business partnership due to this irresponsibility & all their other problems. Well, It was hard enough keeping my Dad home from a nursing home, but I did it. The last 5 yrs of my Dads life was bittersweet. We got so close, for this I thank You God! I lived upstairs, had intercoms & lots of help. The siblings put in about 10 hrs a wk each. I was on that schedule 12 hrs every other night. Plus did Dads meds, food & diabetes tests & shots, care taking during the day. I took him to his Dr. appointments etc. All this time my mother who has always despised me, was here as well. Verbally abusive & eventually smacking me around. The chaos with her care was mind numbing, 10 yrs of falls in & out of hospitals plus dementia. Her care was mostly handled by homemakers & P.T. by my hateful sister. I still got stuck having to both care for her, take her abuse & pay her rent every month for the privilege! My Sister is better than the rest of the world & will tell you so. Every time my Dad would make a remark about how helpful I was with all his daily diabetes care, she would say " I can't stand her, Ma can't either" Also for 5 years she badgered my father weekly telling him "You need to change your will. Your will is wrong! You need to put Henry back in it" For 5 yrs he told her "My will is none of your business, don't tell me what I have to do...& stop badgering me Margie" My Mother had always been money hungry. I even had to continue paying her rent while I took care of them. During the last 2 yrs of their life the disinherited brother conned his way back in. Or he would have been homeless. I knew what he was doing. So they allowed him to live in the basement for free. Of course he came back for a reason, Mommy's boy. Every time Dad would say something like "Can you get your junk out of the front hall?" My brother would say "Yeah sure Dad, as long as your going to put Me back in the will" My Sister was their Administrator, she wrote the checks, made the care schedule etc. Informed everybody how much she hated me whenever anyone mentioned I was giving up every other night (& running up & down stairs during the days too) She used her position of influence with my parents every time she came here. Spent 5 yrs trying to brain wash them into hating me like she did. A year before my parents died she told everyone including the state social worker..." My parents aren't to sign anything if I'm not there. They both would be considered Legally Incompetent" Long story short. 3 months before my father died he could no longer remember what anyone was getting in the will. Her & the older brother took my Dad for a ride to the lawyers. Had him sign a new will they wrote. They told the lawyer that Dad was "at the beginning of Alzheimer disease" (even though he had been diagnosed, treated for & on Alzheimer & Depression meds for over 5 yrs) He didn't know what he was doing except trusting the 2 kids he raised. My Dad couldn't even read a newspaper anymore or tell the difference between day or night. He was in bed 23 hrs a day. He'd talk to you then 5 minutes later tell you the same story. I had to administer his Meds for 5 yrs because 10 mins after he took them he'd forget! Well in the end guess what? I was forced into a partnership that gave the Alcoholic brother HALF of my inheritance! (investment actually) Nobody else lost a dime. Behind my back they did this to me. I am so sick over this betrayal. First they used me, then they swindled me! After my dad died I mentioned to my Sister "I was supposed to have moved away, but I couldn't leave you to take care of both of them" She looks at me & not only did she not even say 'Thank You' for what I did, keeping them home (If either parent ended up in a nursing home none of us would have ended up getting houses) No instead she says to me "I didn't ask for your help" That ungrateful scheming bitch ! Oh & this partner of mine, doesn't even pay his half of the house bills. Every time I mention a bill is due he laughs "I don't give a F___ about bills, why are you bothering me" He's made a disaster out of the apartment that was supposed to have been my rental income. Every reason my Father had taken him out of the will, sure enough has come true. My brother didn't own half the house for 5 minutes before both his ex's put liens against it for almost 100K (back owed child support) The older brother has a loan against the house from his business for about 100K that he had promised my Dad he would remove (when all the legal will stuff went into affect) Yeah, right! Hows that for a wonderful family? Hey if you can't trust family, who can you trust right? TRUST NO ONE!


almost 5 years ago, said...

Loved this article. Gave me some ideas how to get my siblings more involved in our Fathers care.Thanks!!!


almost 5 years ago, said...

my older sisters are very jealous of my because i'm the youngest girl and my mom gave me so much. now that my momk has alzheimers, they seem to be getting revenge on me by saying my mother never meant those things. now they are kicking me out of my mothers house and i have not finished my degree yet.


almost 5 years ago, said...

I appreciated this article..as I am a caregiver. Having other family members involved, is important. Finding programs, like Adult Daycare Services in the community, or caregivers support services is a must.


over 5 years ago, said...

No information addressing how to deal with siblings who live far away and have NO CLUE (will not listen) about what is going on and want to "step in" and "fix" things


over 5 years ago, said...

This is a great article, my good friend is going through some of these issues with her family. For anyone in the Atlanta area who is looking for Alzheimer's care help look into this Atlanta home care company. My friend found them very helpful.


over 5 years ago, said...

EXCELLENT article considering the obstacles I had to overcome with my siblings as detailed in the memoir, "Where's my shoes?" My Father's Walk through Alzheimer's I found the "Outgrow old expectations" tip especially appropriate--and the paragraph about being grown up and on equal footing. Unfortunately, we siblings remain estranged to this day--14 years later. Read the story at this link: http://www.thecaregiversvoice.com/products-services/tcv-books/


over 5 years ago, said...

Valadation as the care provider.


almost 7 years ago, said...

This is a great article although I am the black sheep living in NYC while Mom recently went to an Assisted living and sister is in CONTROL but will not tell me what type of POA she has nor will show any documents. My mom says POA is only for when she gets incapacitated. I am not even given any living will nor any info about a DNR. I am excluded and would like to know how to obtain the documents as I do not trust my sister. She has manipulated my mother to pay for her daughters 3rd university degree and now I am unemployed, have a concussion from an auto accident and am fightng about what my mother's wishes to help me with meds, living expenses and my sisters holding of the purse strings leaving mother without any way of writing checks. It is a war and putting my 87yo Mom in the middle is not fair. I was also visiting over Xmas and sister told mom she was going to a neurologist. I wanted to go and meet him. Mom said ok. My sister drove us to an office of a Social Worker whom has no MA or PHD and within 4mins of meeting me said OH you are the one who caused your mom to go into the hospital because you always ask for $. I asked where did she get such information? Was not answered. I found out my mom has a digestive problem. I know no MD would ever say such a thing to someone and felt it very unprofessional for a Social worker to say such a thing just meeting me. My sister is a sociopath only wishing for all on her behalf and her daughters. I dont know what to do as FL does not provide free or any assistance on how the laws work in finding out how to obtain the documents. Attorneys want from $250-350 for a consultation and I have no funds to put out like this. It is a hard situation and my sister also stated she does not wish to communicate with me and would not state why when in the social workers meeting. Any suggestions on what sites to look at for FL laws? Thank you in advance for a response.


about 7 years ago, said...

An excellent article with excellent advice. Personally, as the primary caregiver, it is frustrating to read everything I have already tried. I know all this to be true but all my siblings live in a reality they have created. For instance my sister (the black sheep) never comes around. She has always played the pity card and people fall for it. She claims all I need to do is ask for help. So even though I feel she should come around see for herself what is needed, I asked for help in researching my mom's medical insurance. She sent me a link to a web site with general info. I kindly sent back a note saying that is a great start and let me know what you find. She said she was too busy. Too busy for the next two months before we need an answer?! I told her I was too as I do everything and still raise a family and am disabled. She refused stating I do not understand what she has to do. My reply was we are all busy but we all have to help. She still refused. I told her she said she wanted to help and all I had to do was ask but then she does not help. But rest assured she will be available when an inheritance check is handed out. I have been caring for my parents for over 20 years as my dad died 4 years ago after 16 years of cancer, heart disease and all the complications. I did it all and it was a lot. I learned to handle IVs, suctioning trachs, you name it. I slept at the hospital. In fact I did more than my own mother. Now mom has Alzheimers and I again handle it all. I keep all the records and notes and even handle the financial end of everything. I must admit I am now resentful as I feel it has taken my life from me and my family and with 5 siblings there is no reason for it. The worse part is my mom rewards the ones who do nothing. I am afraid damage has been done I can not get past and it does not matter anyway. As many witnesses have said I may as well give up because they will never be there. The only time they show up is when something big goes down so they can look good. Then they go away when the work starts.


over 8 years ago, said...

Excellent article!! Geriatric care managers advocate for the older adult and can often help "squabbling" families to come to agreements.. When they aren't able to get the siblings to resolve differences (often because of their allegiance to the older adult), it may be appropriate to bring in an impartial party, such as an elder mediator. An elder mediator facilitates discussions for everyone to listen to each other and helps the group to create creative solutions that work for everyone. One of the outcomes of mediation is a memorandum of understanding, where everyone agrees to roles, next steps and other issues and "signs off" in agreement, in an effort to both solve the current issues and stave off future strained relationships.