It has been nearly 10 years since my mother was diagnosed with Dementia/Alzheimer's that has changed our lives. The hardest thing were the conversations with her describing her journey into this unknown disease.
Our family dynamics - I am the oldest of the children and the cinderella of the family.
My parents would have family vacations with my sister and her family, while my family wasn't invited. Parents would visit my sister's home and wouldn't visit or call my home often, but expected me to visit their home. When asked what the issue was, I never received an answer.
I am educated, a working professional, divorced mother, and cancer survivor. While living through cancer treatments I received very little familial support. My Dad assisted with taking me to treatments for 4 days a month for 6 months while I was in the process of a divorce. At the time my child was a toddler. Fast forward nearly 12 years later, my mother's alzheimer's has been a challenge over the last five years because my family refused. In a past life, I was involved with aging care and knew what was to come as we enter the 10th year of Mom's disease. She is healthy with the exception of the disease.
The last five years have been stressful because family refuses to plan for more than the immediate moment. My sister and I are not close and she doesn't want to collaborate. She wants to handle things but clearly cannot. My father wants me to fix it but wants everything done on his schedule, when and where it suits him. He is angry and has stated life wasn't supposed to happen this way. That he and my mother should be enjoying their retirement and living life to the fullest.
His anger has been directed at me over the last 5-6 years because in his mind, I should stop my life and focus on he and my mother. Working a six-figure job, with some travel, a middle-schooler, and custody issues with my ex, his expectation is that I need to give more. Caring for my mother after 10 hour workdays at their home or having her dropped off at my house during the last 3 hours of my business day, bathing, feeding, then driving her home and putting her to bed in the evenings, when he refused to stop working because it gave him a break from her, he stated that I needed to do more.
He recently retired and has become the primary caregiver, since COVID occurred. When he retired, I backed off and allowed he and my sister to pick up the slack. I stopped and stepped away for my mental and physical health as a cancer survivor. My child and I have pre-existing conditions and I am putting us first and allowing my sibling to take over. I have towed the load since childhood and am over ALL of it. I love my mother and father dearly, but spiritually can no longer handle the insane family dynamics that have exacerbated during COVID.
Regardless of our family dynamics, I love my mom. I have done all that I can to assist with planning and have been met with resistance, it seems every step of the way. Now that the train wreck is here, why can't I do more to provided care for my mother is the question I get. Well, that's what service providers are for. We had a wonderful woman that cared for my mother but was treated with such disrespect from my father she finally quit after four years. When I have attempted to assist with finding another long term caregiver, my sister wants to take over and the result is a temporary person who doesn't work out. It is the saddest and craziest situation that I have ever seen.
I want to see my mother more but have difficulty interacting with my father because of his explosive temper and verbal abuse. My mother needs to be in a memory care facility. My sister and father have power of attorney.
How are others coping in situations where the family dynamics are horrific and exacerbate the caregiving and planning process?
Although it is hard, you need to step back. Your first priorities are you and your child. Everything comes after the two of you. If you have grave concerns over how Mum is being treated by Dad and your sister report your concerns to Mum's doctor to your local seniors advocate.
Although I do not provide hands on care, I do deal with a great deal of challenges in my family, a mother who has been exposed to Covid, an adult son who had a psychotic break last week and providing respite for my infant grandson all while launching a new career. We cannot do everything and sometimes the best thing we can do is take care of ourselves and let the chips fall.
We can’t force others to heed our advice. People who think they know best or are too proud to ask for help, usually figure out what we went through when they have to deal with it on their own.
You are not under any obligation to care for your parents. It becomes harder with each passing year. You most likely feel guilty because they aren’t listening to your advice and suffering with consequences, but that isn’t your fault. You haven’t done anything wrong. Some will say that you are grieving for what you once had with your mom. She is no longer the same mother from several years back.
Please don’t do anything that your heart isn’t in. That isn’t good for anyone.
Also, since sis and dad have POAs, the ball is in their court.
I too was not allowed to drive the bus (as I call it). I didn't like the route they took, they wouldn't listen to my directions, I didn't feel safe up the back - so I got off.
Lead, Follow or Get (outta the way). I had to 'Get'.
Now just standing at the sidelines & will call for assistance once they crash. All I can do.
Peace to you 🙏🕊️
This is another view – ignore it if it annoys you, but it might help. You say that you love both your parents dearly. It is very hard to see why you tell yourself that you love your father dearly. Surely not ‘because of his explosive temper and verbal abuse’. Surely not when ‘his anger has been directed at me over the last 5-6 years because in his mind, I should stop my life and focus on he and my mother’. It might help to face the fact that your father is NOT loveable. We all have special relationships with our parents, even bad parents, but that special relationship is NOT necessarily love. FOG – Fear Obligation and Guilt – are what keep carers stuck in completely unreasonable pain.
Perhaps you DO love your mother. But remember that she has been ‘on his side’ all their marriage, including all the times when you didn’t get the invitations and support that went to your sister. When one parent is worse, it’s easy to see the ‘better one’ as the victim. The ‘victim’ has been complicit in what has happened. At least earlier in her dementia, mother was there too when you were ‘met with resistance, it seems every step of the way’. How much more do you think you owe?
Think carefully about the earlier replies. If you can’t take part in reasonable planning, if your help isn’t appreciated and is never enough, just stop. You aren’t helping, it’s not working, and you are only hurting yourself and your child. You are an ‘educated, a working professional’ with enough brains to see what to do. Just get out of the mess!
MargaretMcKen wrote: "But remember that she has been ‘on his side’ all their marriage, including all the times when you didn’t get the invitations and support that went to your sister. When one parent is worse, it’s easy to see the ‘better one’ as the victim. The ‘victim’ has been complicit in what has happened."
This is SUCH a good point! Sometimes I point this sort of thing out when a poster will bemoan how awful a sibling is in regards to caregiving, or mooching off a parent, or whatever. And that dear Mama must still have every whim satisfied by the martyr poster. They need to remember that "dear Mama" "or papa" brought that sibling up to be that way, or at least tolerated/condoned it. So why should the martyr poster continue to think their parent is somehow the victim? (The real victim is the martyr poster.)
Your child is in middle school. That's a difficult age, where the child is going through many changes. Don't make it that much more difficult by stepping in to do caregiving for your mother that you so wisely steeped away from!
Your guilt is why, because you've backed off? You've given of yourself long enough. There is no guilt in realizing that. Guilt in your case is both self imposed and misplaced. Ben Franklin is quoted as saying, “There are three things extremely hard; steel, a diamond, and to know one's self”. You've apparently set a limit on your involvement with your mom's care and your dad's indignation. You've transferred all that caregiving energy to caring for yourself. Excellent.
So instead of feeling trapped, recognize the freedom you give yourself by letting mom's POAs handle her care, and by having recognized your caregiving limits.
I would stay out of their orbit for now. Without POA, the doctor(s) can't discuss her condition(s) or care with you, but you CAN provide input to them (if that fails, you could try social services.) It is difficult for you as you do care for your mother and want what's best for her, but if they are blocking your attempts, there isn't a lot you can do otherwise. If they allow you to visit and/or take mom out for short excursions, do that, but stay out of the care or even suggesting how best to provide the care. Short of taking guardianship, there's not much you can do. They hold all the cards.
Avoid confrontations with them. If you get calls that are negative, make an excuse, ANY excuse, to get off the phone. This can be as simple as I offer help and suggestions, you won't take my advice, I have nothing else to offer and hang up. Block calls if they continue to harass you. You need to protect yourself and your child.
I do feel for you. You want what's best for her and they aren't cooperating. Although my 2 brothers are mostly useless, I am at the least thankful they haven't intervened or caused problems, at least not since initially being PITAs. Mostly that's because I stopped consulting with them. I more or less just took the reins and managed everything for mom. One of them was also POA and executor of the will. All 3 of us were trustees, but ALL of the necessary duties and management were done by me.
It could have gone horribly wrong. When I scheduled time for us to check out two facilities near me (knew I would be the one running!), YB found another 5 min from his place. We went there first. Nice. New. But more expensive than the one she ended up in and that was for a shared space (2BR, one bath) which she wouldn't like! They have private rooms, but it would cost even more. Anyway, after our tour, we met up for a bite to eat. BOTH got out of their cars and immediately said "For that kind of money, I'll take her in!" Obviously they were clueless about the cost of care. I told them fine, but you NEED to understand what you're taking on. Both were totally clueless, not just about the cost, but what the care would entail! YB is 10 years younger, so needs to work. OB isn't local, so he'd be on his own. YB had no room for her in his GF's place. Turns out OB never lost his childhood anger issues, they were just sleeping. No patience. Physically and verbally abusive. I can't imagine what it would have been like for mom under either of those conditions!
So, from one Cinderella to another, hang in there. I've no Prince Charming in my life, which is fine. But, I've done what's right by mom and don't give a rat's patootie what either brother thinks. Yes, OB was the "special" one, YB was also high up. Me? I'd get "What're you doing here?" when I'd go to visit (BTW, OB never came back to visit as he couldn't "handle it", for over 2.5 years and I don't think YB was visiting in the last 2+ years either!) I did what needed to be done and watched over/visited mom, 4 years in MC, 2 years while she was still in her condo (early stages.)
Sadly in your case, you can't just take over and ignore them. Perhaps you could do some research on facilities near by and find a nice place or two. Get some details, such as costs and what services are included. Provide the brochures and information to them. Maybe their mind set is to keep her home, whether it's to preserve money or because it's what families do. Until they reach a breaking point, they aren't likely to listen to you. Maybe if they finally get a clue, they will welcome the information.
If you honestly feel your mother is in danger, I would pursue temporary guardianship. Otherwise, as Beatty said, you can only watch from the sidelines and call for help when the crash happens!
Your father seems angry that you can't fix your mother so he can have the retirement with her that he wanted. It seems (imho) that your father may believe you owed him for his taking you to your cancer treatments all those years ago. He wanted you to stop your life to take care of your mother, but he refused to retire for that exact reason so he wouldn't have to deal with it. He wants you to work on his schedule and do it his way. Let's face it, your father is just carrying a lot of anger and he's directing it at the person he feels should be able to fix it the way he wants it fixed.
Do you have other siblings? You said you were the oldest of the children. If there is more than you and your sister what is their relationship with your parents, your sister and you? Has your sister always been the fair-haired child? If there are other siblings what is their opinion of the situation? From reading your post, it appears the dynamics were already there before the Alzheimer's diagnosis and your mother's condition has exacerbated it further.
You say your parents and sister's family vacationed together and they visited her. Your family wasn't invited and they rarely visited you - could this have had something to do with your marriage (I DON'T ask this to place any blame on anyone - while my parents/mom loved/love my husband, a little of him goes a long way and because of his personality I try to limit their exposure to him - mom acknowledges his good points but his bad points ... well enough said.) It's just that you seem to still have some ongoing concerns there (custody). You also said when you asked what the problem was you got no answer - I know my parents/mom wouldn't go out of their way to talk about my husband. Let's face it family can be messy - really, really messy.
You also spoke of the difficult discussions with your mother regarding her future journey. Did family resent the gloomy future she had to look forward to? Were they looking for your mother to be cured? It sounds as if the family is still in denial if they refuse to plan for your mother's future.
I'm not trying to place the blame on anyone - just a 3rd party with no skin in the game trying to analyze your post and present - well I don't know what I'm trying to present - an alternate view of things from the outside.
You should be able to visit your mother whenever you want. Make sure they know you love them both dearly while you can. While saying that - it doesn't mean you put up with dad's anger and abusive behavior. Address it or leave.
The number 1 thing I would not do is criticize sis on the job she is or isn't doing. Let her do what she does and if she asks an opinion give it without judgment and with kindness (easier said than done). Your father is burning himself up with anger. Did he always have an explosive temper? Would he be willing to get mental health services with a possible Rx - if we were talking about my father the answer would be a firm "NO." Also, if your father asks something of you THAT YOUR ARE WILLING AND ABLE TO DO, then do it with kindness and love for your parents. If you can't also decline the request with kindness and love.
One of the reasons you say you stepped back is because spiritually you needed to. You are going to have to lean hard on your spiritual life to get through this. Pray, meditate or whatever your practice is often and leave the stress, anger or other negative feelings there. Live with as much faith as you can muster.
If none of this applies, then by all means disregard it without another thought - as I said I'm just a third party with no skin in the game.
I wish your love and peace. Blessings on you and your family.
Since your sister&father have power of attorney you're limited implementing decisions..+ you obviously need to care for yourself&child.
So :
1st:
On a given &convenient day why not arrange a family diner-reunion where you calmly can Express your concerns ,offer reasonable help,WITHOUT blaming anyone..
2nd:
Any social services around ?they may know of services to assist with your mom's care.
3rd: Never put too much on "your plate"..the burn out risk is real..your father &sister may be approaching that..
4th: Spirituality is so vital ,as you mention it..
I went through your experience, not as bad as you,..now I learned my lessons:
Learn to delegate, don't expect a perfect solution....
Failure to plan on your part DOES NOT constitute an emergency on mine.
When you are ready to treat me civil, then I am willing to do xyz, ONLY! If you choose to continue to treat me with nastiness and abuse then I will not be able to participate in helping with mom.
Dear sister,
Since you obviously know it all, I would appreciate you not dragging me into the pit that has been created in this situation.
I am willing to do xyz, only if I am treated civil by all parties involved, you know, you and dad. When you can treat me with respect I look forward to discussing the situation.
Do what you able to do and are comfortable with doing. Only give what you can and explain that this is all you have to offer.
The hard part is stepping back. Others have POAs and they are the ones to use it as well as they can. You have offered advice which was rejected. Step back and let them handle it.
In our case, MIL and FIL lived in Hawaii. Both had/have dementia. We called as often as we good. We begged them to come live with us. We saw FIL 2 years before his dementia took a turn for the worse. "Worse" was MIL also suffering from dementia and not feeding or giving fluids to either of them. No other family there to help them.
Brother-in-law has control of their finances and directs their decisions. He said, "this happens all the time in Hawaii." I said, "this is neglect and abuse." I reported it to APS. No change.
Unfortunately, FIL died of malnutrition and dehydration. All his organs shut down. We were notified too late to visit him or to attend his Buddhist memorial.
MIL now has 2 caretakers that take turns caring for her in her condo. Seems she passed out while shopping before a couple of years before COVID. Hospital notified BIL, had his number but we were never notified. We found out 6 months after the fact when we took a trip out to visit her. Seems that state or social work got involved and mandated changes. Never got a straight answer from BIL about this.
So, we talk to MIL via phone and check in with her caretakers. So far, she remembers my husband but not me or our children.
I think you do you need to place y our interests paramount and it is a time not to place much stock or none at all in what others think of you. You and your child are number one.
When alzheimer's strikes a dysfunctional family it is substantially worse. I am lucky that I have never had a health issue like cancer or anything like that. I was worried about this happening to me as I beloved I would have utterly zero familial support. So, now when one parent has alzheimer's they expect me to drop everything when I have never had any support myself.
I can see why he might be experiencing anger.
Credit to you for giving credit to him for what he did do to support you through treatment. Transport once a week to appointments might not seem the biggest deal ever, but he was consistent and he was there; and true to male stereotype this was something he could *do* that would actually help.
He refused to retire early because having to go out to work saved his sanity. But don't forget that he too, when he came back from work, then had the primary caregiving responsibilities AND was deprived of the family life that in normal circumstances restores us rather than drains us. I know you were doing this too, but he had it 24/7/365. And he was older.
Now it's your turn to refuse to retire. You say his expectation is that you will retire and devote your life to caring for your mother. Has he said as much? I ask because it seems that you and he could do with some clarity: the conversation that starts What Do You Want Me To Do? - and then goes on to the nuts and bolts of it.
What about your sister? "Not close" appears to be a fairly dramatic understatement, is it, I'm guessing?