Dealing with Family that just doesn't get it & criticizes

Schmail13

Brand new to this forum with so much to share to know that I'm not alone in with my experiences.  What brought me here today was a blowout with a family member about me being too extreme & obsessive in the care for my mom.  I'm sure everyone is different with their comfort level of how much care to give or not , but I'm curious.  I'm probably being too vague and more information is needed which I can provide if this happens to start a conversation.

Thank you for all the responses!   Here is my story in a nutshell...my mom was diagnosed last December (LBD), however knowing everything that I do now, I believe it had been there for several years earlier. Until this September, it was basically memory, but now we have seen so much more. Been checked for UTI several times when things act up and always negative.  Hallucinations have started but seem to be on occasion.  The memory seems worse and worse every day.  She is very unsteady and has been blessed with her falls (refuses a walker) to not break anything.  Most recently since Dec, she has had 2 episodes of being totally unresponsive, laying down, moaning & unable to communicate.  The first time we called the ambulance because it was new & we were scared.  A weekend in the hospital with zero answers from test after test.  I finally told them we were going home.  It took a few days, but she slowly bounced back, however not to what she was prior to it.  It happened again last week, I didn't leave her side and by the next day she was at least alert and just like last time it took a few more days for her "normal".  I believe that there is no better place for her than home. 

She lives with us in her own in-law.  My family (brothers, sister in laws, etc) do nothing to help, not even phone calls.  Just one brother that calls, daily, comes over once a week now that he is retired and watches TV with her for a few hours.  I have no problem carrying the burden, but the fact that no one seems to really give a crap eats away at me daily.  I have made the decision since december that I will not leave her alone as I never know when the switch will flip and that terrifies me.  I give her as much independence as she can handle, but I will not leave her alone other than to take a shower if no one is here.  I was blasted today by my son (he & his family live with us at the moment)  I'm consumed with doom & gloom and am obsessive with her. That I'm miserable to be around because all I do is share my experiences and talk about nothing else. Should probably mention that we are trying to survive the pandemic to keep our family restaurant going and it's not easy at all.  I manage the back end & finances.  My husband is a gem for both me & her.  My release is to let my family living with me know what's going on is to tell them my experiences, cause everyone else is too busy with life to ask.  I keep myself together, do what I need to do to take care of everyone else, because that's who I've always been.  I'm not miserable or depressed and keep a smile on my face always, unless behind closed doors.  To be made to feel like I was bringing my family down by sharing my day to day of seeing my mother change so drastically just crushed me. Now I ask myself am I doing too much?  Am I really full of doom & gloom?  I don't believe so.  I'm a give and always have been.  My mom and dad have been my priority since I was an adult and I was lucky enough to have a husband that supports my decisions. I feel as though I am rambling, so I will stop here.  I believe that I have found an outlet on this forum.

Marta

By all means, tell us more.  You are definitely not alone.

Quilting brings calm

Welcome to the forum.  You are not alone,  you will find all sorts of examples of family tension in the various posts.  For example, I have two siblings and 3 step siblings.  I’m the only one taking care  of my parents since we moved them back to my hometown.  My two siblings are long distance,  one never responds to updates about them, the other told me that I needed to find other topics to talk to her about because all I talked about was my parents.she often tries to tell me what to do with the parents though.  Two of the 3 step-siblings are local but don’t have a relationship to speak of with my parents ( the fault of the 4 adults back when the kids were kids). 

star26

Welcome to the forum. If you feel comfortable sharing the specifics, you will get feedback from other caregivers. A lot of us have had care disagreements with family members and sometimes it comes down to whoever has been entrusted with the POA just needs to make the decisions without discussion. But you may have some insights from others or some tips to help everyone get on the same page. Sometimes, it's about education for family members that don't understand dementia or the caregiving needs and challenges. It sure makes it harder when there are family disputes.

ecsteinbach

Hello all! First post. I am the daughter (one of four children) of a mom with Alzheimers. It runs in the family, and so it was somewhat expected - but still no easier to manage. I guess I will also note that I am a physician trained in Internal Medicine (adults) and Allergy/Immunology.

My question to the forum regards my father, who is 70 and is my mom's sole caregiver at the moment. My mom was a spitfire in her heyday, making most of the life decisions for her and my dad (and the family), while my dad was the breadwinner (although my mom ran a daycare and then preschool out of our home). My dad is also not very empathetic, which was tough when my mom struggled with depression most of her life. He just isn't the most patient or understanding person in the world - and that's ok! God didn't make everyone out to be an amazing caregiver.

My mom is in the middle stages of her disease, although I'd characterize her as "late-middle" (her most recent MMSE score this winter was 16). She doesn't have trouble with her ADLs yet. However, she is pretty constantly confused now (though thankfully pleasantly confused). She hasn't wandered off, she hasn't driven in several years. 

My sister and I (my sister is the only child living close to my parents, but I recently stayed with them for >1 week after my dad fell and broke his jaw) feel pretty strong that my mom needs constant supervision during the day, but my dad does not agree. Unfortunately, he is not helping her exercise, stay on a schedule, eat healthy, etc. After multiple discussions, I feel like we have gotten nowhere. He could be in denial - he does still try to get her opinion of things, even when it isn't appropriate. 

So my question (after lengthy explanation - every family dynamic is so different!) - how would you help your dad understand that mom needs constant supervision? I don't want to wait until she wanders for it to sink in for him.

Thank you in advance!!! 

[Deleted User]

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LaurenB

Welcome to the group Gail and Ecteinbach.  You are most definitely welcome in this group.  Keep reaching out and find the tools here to find a "local" virtual support group that meets via Zoom to be able to connect with others in real time and meet friendly faces!

Lauren

Cynbar

Gail, you are such a wonderful and devoted daughter, your mother is so lucky to have you! In answer to your question, no,  I don't think you are doing too much. There are a lot of changes going on, it's natural to be worried and to be vigilant. You wouldn't be you if you did any less. But I do think you may want to talk about it a little less. No one but you will be quite as invested in this, and you shouldn't expect them to be. Yes, share your experiences and concerns, but work in conversation about other things as well. Ask how their day has gone, talk about sports or news stories (plenty going on these days), whatever is important to your family members. They need to feel that they matter too, or they will pull away. Good luck, I know none of this is easy, by any means.

star26

IMO, all caregivers to a PWD need an outlet where we can "debrief" and get the daily stuff out and hopefully have some acknowledgment and support in return or at least a patient and non-judging ear to listen to us. For me, the person was my Mom. She automatically knew that I wasn't a doom and gloom person but that I was in a tough situation and that I just needed to unload, because we all do, and she was wiling to be that person. You've discovered who cannot be that person for you. Being a caregiver changed me and changed how I felt about some of my relationships. Some of the people that I thought I was most close to, ended up as people that didn't want to know about "negativity" AKA reality and preferred to have maybe just a few insincere inquiring remarks to be polite and then go on to other stuff as usual. That serves its purpose and was sometimes helpful to me when I needed to get my mind on other stuff but it didn't take the place of having someone I could let loose with. Some other people really surprised me as being the ones that really "got it" and our closeness grew. Those turned out to be people that had personal experience with dementia or caregiving. As you said, this forum can be one of the outlets you need and you may find others along the way too. And I think you already know this in your gut, but I just have to say that you have nothing to feel guilty or bad about in terms of your family.

Schmail13

Perfectly stated!   Thank you!

MimiMinder

Hello Gail,

So glad you reached out to the forum. Hopefully you will find this to be a safe place where you can share and vent. I re-read your post and wanted to address the 'blasted by son' comment. Not knowing him or you, but part of me wondered if he misses the old way of life. He and his family didn't always live with you, it seems, so he might miss the independence of the life he once had. He also might miss things that you had done previously, whether that was playing scrabble together or sharing time after the restaurant closed. Maybe he is thinking 'holy cow, there is no way I could do for my mother what she is doing for hers' and he is feeling guilty. Maybe he has COVID fatigue and just wants life to return to normal.

And maybe there is a tiny bit of truth that he is tired of hearing about his grandmother. I get that it can be all consuming when were are caring for a loved one, particularly when that person lives with us 24/7, but sometimes our family members just don't want to hear about it. I get it. My brother can handle little bitty pieces of information and shuts down when I go on and on. So, I have found some dementia buddies and we share stories. I don't know if it would help to talk with your son less (about what you are doing with/for his grandmother) and reach out to the forum more. This is not an easy journey, but it helps when we can travel with others who are on a similar path.

Good luck and know that there are many of us cheering for you and wanting to help.

Schmail13

Thank you for the reply. Much of what you say is true . In all honesty he is in denial where his nana is really at & I find myself telling him everything to try and make him see reality . I’m very thankful I found this page to share my feelings with people who get it & share their experiences as well.