Thanks again everyone for your kind and supportive words.
@psychmomma yes, family dynamics. My post was long and rambling already; I didn’t want to bore everyone with all the backstories and issues.
Several months ago, I was thinking of making a post to discuss family issues in caring for parents as I felt like my sister wasn’t understanding the effects and symptoms of my mom’s dementia. She’d complain to me that mom would spend all day in bed, wouldn’t do her dishes, etc. “You wouldn’t believe how hunched over she is when she walks!” I’d send her links to websites and videos with information on vascular dementia. Tell her apathy is a symptom. Losing executive functioning skills is a symptom. Mom can’t help it. I tried to be as polite and non-confrontational about it, because I wasn’t the one living near her and having to deal with her, and I knew I had to walk on eggshells in these discussions.
But when I was there in October, after my mom was put in the nursing home after her stroke that paralyzed her left side, I couldn’t hold it in anymore. We were all sitting in mom’s room and my sister started in on ordering my mom around, telling her “You NEED to use your good leg to push yourself up and reposition yourself! You can’t lay in the same position all the time!” So I just motioned to my head and mouthed, “She can’t remember to do that!” (So quit ordering her around and try to show some kindness left unsaid). My sister did not like that one bit, and brought that up in the big argument we had later - “Who did I think I was, telling her what Mom could or could not do?” Effectively telling me that my input was not welcome because I didn’t live there.
We had other issues involving my mom’s home and their plans for it which I wasn’t allowed to have input into either (sister wanted it to be sold at a heavy discount to her son, I wanted to see if the proceeds could go towards putting her in a better nursing facility). It was as if I wasn’t even considered a part of the family anymore, which was very very upsetting to me. Thus why I declined to go to the funeral. Who wants to be in that position, feeling shunned in a difficult time like that? I’ve come to the realization that I just need to let them go. I have three family members here in my home who are actually enjoying being together with me 24/7. We love each other. They’re enough.
I do appreciate the supportive comments from you all. It helps to know that I’m not alone in my situation.
We are having some frustration because some of the family members aren’t pulling their weight. My sister watches mom and has her sleep at her house every night. One inter wat he’s mom during the day two days/week, I watch 2 days/week, SisIL watches 1day/week. We want my younger brother to watch one day a week but he has only done so twice in 2 months! The other sister ends up watching mom both weekend days, which is the only time she can be with her H and S and have no work. Compared to issues many of you are dealing with, this is very minor but irksome that brother is so lazy.
I think it’s sometimes hard to see things from the other perspective with these eldercare issues. I’ve spent some time explaining the daily routine that I have with my mom to my kids who have been home for an extended period. They haven’t been here much at all for the past 4 years as she’s deteriorated mentally and physically.
The thing I most wanted them to understand was that when I ask her to perform an activity over and over in many different ways (sit up, stand up, lift yourself up, push up off the bed, hold your walker, move your feet forward, take steps… and on and on…), the reason I am not touching her to help her is that her doctors feel it’s important for her (and all elderly people) to do as much as they are physically able for themselves to keep their muscles/bodies working. The old “use it or lose it”. If I did each task for her, she would likely be bed bound by now and unable to walk the little bit she does each day. I still have to take care of all personal issues as she’s been completely incontinent for four years and has no idea how to handle that correctly.
I also lose my patience at times, and no one feels worse than me. When you have to repeat each step in each sequence of each task up to 30 times and over a 30-60 minute time period each day, just to get a person dressed, for literally years, you get exhausted and aren’t always as kind as you should be. (I’m not unkind, just matter-of-fact instead of sweet at times.) Two of my siblings have shown no interest in having any relationship with my mom. If they suddenly wanted to have input, I would have a hard time not dismissing it out of hand. (They haven’t called our mom even once a year or sent her a birthday or mother’s day card at all over seven years. Yes, I’m bitter and full of bad feelings toward them.) Yes, @Himom, siblings can be irksome!
And add conflicts about money and the fireworks really go off. I could go on and on, but have found an online therapist during this coronavirus time, and have been so lucky.
The one physically closest or most responsible is often the one with a different sort of hard time from the responsibilities. And depending on circumstances, it may not truly be financially mandatory for adult kids to become full time caregivers, even for part of the week. It’s not always selfish to say you can’t. Sometimes, it’s just one or some who push.
In my experience, primary caregiving usually is not evenly distributed, even within the most functional families. There is always someone who takes on more of the burden, whether that be because of physical proximity, availability, martyrdom (kidding but not kidding), etc… It’s hard to have good boundaries, it’s hard not to feel resentful, it’s hard not to feel guilt. All family members also experience the decline and loss differently.
My $.02 is to give everyone in the family the benefit of the doubt that they are all doing the best they can and that they love the ill parent too.
Ironically I think sometimes the less burdened siblings feel jealous or left out, without realizing that is an emotion they have that has no relation to the actual real-life burdens of the caregiving sibling.
I also think that caregiving involves some serious gender biases within families, as to who does what, who is free to work or move, and so on. We can make the choice to do it anyway but with eyes open.
Yes, it’s hard being 2,500 miles away without the ability to even visit at this point.
My sister and I get along well and agree about 95% of the time when it comes to my parents. But wow, when she DOESN’T agree with me, she can be quite acerbic. She’s always been that way and it’s still difficult for me to handle. I try not to escalate the situation, but there’s no convincing her when she gets like that.
Having been the local caregivers for one set of elderly parents and long-distance for the other set (with varying degrees of family dysfunction on all sides), the only thing I can say with certainty is that all of it is hard. It exposes cracks in the foundation that might otherwise be overlooked.
@yauponredux as a structural engineer I like your “cracks in the foundation” analogy! You’re right. My sister and I had a huge blowup over issues that were many years old. I am not a confrontational person, so I was surprised at the emotions that welled up. It led to my sister even saying she was uncomfortable with my being the sole person with Durable Power of Attorney. I told her she is welcome to share the responsibility but she will probably have to consult an attorney because it’s not as simple as signing a form. She never followed through.
@momofsenior1. Your right on. I am actually in Detroit again to give my older sister a break caring for my mother. She needed it and to be honest don’t know how she does it. I don’t have the patience for it.
My mother was in /out of the hospital the last 3 weeks. Last one she bumped her leg against her bed and has a huge hematoma. So do you think they moved stuff around her bedroom so she can get the walker around without injuring herself again? No. So I took some washcloths and covered the corners of the bed and moved this shelving unit to another room that just had “stuff” on it. Nothing she uses daily and now she has plenty of room
I also put all her medications on the IPad she is starting to use for videoconferencing with her grandkids (even 91 year Olds can learn new things). The program is called Pillbox. Super easy to use and I just databased(typed in) all the information even her “as needed” medications. It separates by time of day and even like morning, lunch, dinner and evenings. If she uses it this will be a huge breakthrough
She rewrites each medication daily every time she takes it and confuses herself. She now just pushes the morning tab and all her meds for the morning are there and so on.
So at one point I was coming in from Chicago and seeing /caring for my mother more often then one of my sisters that’s 35 minutes away! So I get it. Good thing there is no assets when she goes. She lives in a second house of my older sisters that lives 3 blocks away. There is some money from the sale of her first house. First money goes for a funeral service. Anything after that I am fine if my older sister keeps it. She is with her daily (it’s always been like this though) but cooks, cleans, etc for her also and has spent a lot of her own money getting her stuff. I get into arguments with my mother if I don’t bite my tongue. She told me 10 times this morning she doesn’t understand something about the 2 high blood pressure medications she has to take. So I tell her to call her doctor. Then she tells me again she doesn’t know what to do. I tell her what to do but wants to take to her doctor. I keep telling her to call him then and so on. BTW - her memory is almost perfect so it’s not that. She causes herself anxiety her whole life. Yes, she has a medication for that. Lol.
@Knowsstuff omg I wish my mother would medicate for her anxiety, she just luxuriates in it! A few years ago I ended up taking antidepressants because she wouldn’t.
As I’ve described, my H’s family has some toxic members and it all became very obvious as we were planning for MIL’s funeral that occurred this morning. In the end, the 10 allowable attendees were H, one of his three sisters, our kids and hers. Since two of his sisters decided not to attend, I could go, together with the spouses of two of the grandchildren. The rabbi happened to be the hospital chaplain where she was treated (and also a member of our synagogue) and she had also officiated my FIL’s funeral four years ago because our rabbi was sitting shiva for his mother. She did a beautiful, personal, and meaningful ceremony for the 10 of us present and H’s brother on Facetime in California. But the absence of the two remaining sisters was deafening.
My H was the primary caregiver for his mother for the last 4 years, despite there being three daughters in close proximity. He didn’t mind doing his share but I think he did resent the lack of assistance. And then, when we took a longer than usual vacation last summer (we went to Alaska for two weeks), the two sisters who did not attend the funeral tried to get her to change her will to the detriment of my H. As difficult as family relationships can be (both my H and his one sister acknowledged the conflicting feelings they had for their mother during the funeral), when there is money involved it’s a disaster. I don’t know what else to say, despite all the drama, I wish they had come…for their mother and for their siblings. As we left I heard my H say that he feels as if he has two siblings now, not four. I’m not sure he will ever find forgiveness for their actions over the past week. But my MIL is now laid to rest next to FIL and hopefully H and BIL and SIL can being to heal from this toxic episode.
the entitlement of some siblings is pretty hard to fathom. There are issues between my husband’s siblings similar to above. They managed to communicate while their mom was alive, but not after her death. It’s sad.
@runnersmom even if your husband is able to forgive those two sisters, he may have a hard time forgetting how awful they were. Their attempt to convince their mom to change her will when your husband was away sounds like the evil sisters straight out of a fairytale.
It helps if family members are physically close enough to help, but the also makes it more frustrating when it appears some don’t appear to be “pulling their weight.”
I am grateful that among my siblings, people are all doing what they feel capable of doing. It may not be strictly “even,” but it’s a lot better than many families and we all are trying to work together.