My uncle is being foolish and stubborn

amylostinohio

I am currently in month five of being away from home, taking care of my grandmother, with the help of my mother. Unfortunately, due to financial and personal reasons, we are having to move my grandma into independent living, and eventually into assisted living at a elder care facility at the end of January. We traveled over a thousand miles to get here, learned of my grandmother's diagnosis, and have been primary caregivers for her since. My mom is able to work from home, but I am basically the full time caregiver for grandma until we get her moved in at the start of 2022. My uncle, however, is local, he could be at her new apartment in minutes, and we unfortunately will have to go back home. 

I am genuinely concerned for the lack of interaction he has already had with her. We beg and plead for him to come over to spend time with her, something he promised he would do. We ask if he can help with preparing for the move, and he suddenly has plans, or is too tired from work. He thinks that we are lazy because we are tired all the time, even though caregiving feels like a 72 hour days, every day, the exhaustion defies logic. I am only 23, and my mom needs help calling the shots, as they both share POA. I am beyond disappointed with him. He refuses to get vaccinated against Covid, something that my grandmother would be at risk of getting, but more importantly, he has little regard or care for the plans we set in place. 

Has anyone had experiences like this with the ones who are supposed to be helping? We can't be here forever, I have put my life on hold to protect and help my grandma, and he won't even give us a Saturday afternoon. I have been reading a very insightful book, "The Caregiver's guide to Dementia: Practical Advice for yourself and your loved one", a book I HIGHLY recommend anyone read, and I told him to do the same, but was met with ignorance and him saying he knew more than me, and that reading a book would be a waste of time. Thank you for reading, I just hope it gets better.

Here's a link to the book if anyone wants to look into it, 

https://www.amazon.com/Caregivers-Guide-Dementia-Practical-Yourself/dp/1646113926

NizhoniGrrl

People can really let you down when it comes to caregiving. The book I recommend to everyone is "They're Your Parents, Too!: How Sibling can Survive their Parents Aging without Driving Each Other Crazy." This was very helpful for me understanding my brother (before he died unexpectedly) while we were first trying to get organized planning and caring for my parents. He lived close by, but acted very annoyed about checking in on them, and when he did he was grouchy and argumentative. The bottom line is that it is almost impossible to evenly divide the care and mental energy needed to deal with the needs of declining parents, and some people just aren't capable (emotionally or otherwise) of helping when you need them. It's disappointing, but it is reality.

With this in mind, you might talk to your mother about moving your grandmother to a facility close to you. Even in AL you need to visit frequently and there will be many things they do not monitor (dental care or needs, nail cutting especially of toenails) or take care of (shopping for incidentals like lotion, toothpaste, stamps for her letters, making doctor appointments, etc.). You'll also need one of you to go with her to medical appointments which will be numerous. 

You should make your decisions based on what will help you and your mom meet her needs in the least disruptive way for your lives and convenience. Your uncle should not be a factor. He's shown that he will not step up and you need to move on to another plan that doesn't depend on him participating, regardless of his reasons.

sandwichone123

It's very common for family members to "check out" when it comes to caring for or even visiting someone with dementia. Being around someone with dementia can be frustrating and tiring, and I think for a lot of people it's very scary, thinking, "there but for the grace of God go I." Whatever the reason, it's pretty common and intractable--I haven't heard of anyone getting any traction trying to move their family members out of that space.

M1

Agree that you and your mom are wasting your energy trying to change his behavior. I agree with the suggestion that you move her somewhere that is convenient for your mother, that is what is going to matter in the long run.. Let the uncle go.

King Boo

Grandma would be best served in a facility near your Mom.

There are red flags waving all over the place about your Uncle.  He is unlikely to be a good care manager.

You can hire a Geriatric Care Manager to be your eyes and case manager, but it is an added expense.

There are multiple studies that indicate both the vaccinated and unvaccinated are transmission vectors of Covid 19.  More concerning is his lack of involvement and lack of understanding of the situation for him to be an adequate advocate.

You may need to leave Mom alone to deal with this.  Ultimately, this is her situation to deal with, though your loving support and help most wonderful.

Rescue mom

Friends and family disappear when faced with a person with dementia. I’ve been on this board at least 2 years, and that’s been a topic forever. There may be one or two—like you and your mom—who help, but the vast majority just don’t. 

There’s countless reasons, some even valid, but the fact remains that they don’t and you’re stuck. They say they will, they they’ll say “let me know what I can do” but they don’t, even after dozens of broken promises. Let him go.  It wastes your valuable energy and time to try to deal with him, when he’s not going to change. 

As others said, he’s shown you he won’t be there. Believe him. He won’t change (of if he does, it’ll be a virtual first). Start thinking about moving grandma near your home(s), long distance caregiving is virtually impossible and unaffordable for all but the very wealthy.

OK2Overwhelmed

I'm sorry that your uncle isn't helping. I have pretty much the same thing with my brothers not really helping. But if your uncle isn't vaccinated, it's probably better that he doesn't interact with your grandma. I agree with other posters – you have to let it go. He will continue to disappoint you. If your grandma has any funds for outside caregivers, that might help until she moves (they could help you and your mom with things like baths).

If you can move her close to you, it would be best. That way you can make sure she's taken care of, has essentials, and visitors. Your uncle would not be able to visit if he's not vaccinated anyway. Someone needs to there in case of emergencies, too. I don't think you or your mom want to travel 1000 miles if something comes up. Does your grandma have friends that would visit her once or twice a month? Or anyone else that could get her things like shampoo, lotion, clothes? I know you can order these online and have them delivered, but ideally someone should see her in the flesh at least a few times a month if not more.

One way to look at it is that other family members are not abusing her or stealing from her. I know that's not much, but it's something to be thankful for. You and your mom are doing a great job. It's too bad that your uncle thinks your "lazy" – he obviously doesn't have any experience taking care of an adult (definitely not the same as an infant). Some people just don't have the capacity to caregive. And he might have a difficult relationship with his mom (though it would be kind of him to rise above that, given that she has dementia and is vulnerable).

Good luck and remember to take care of yourselves, too.

Cynbar

Pay attention to that old saying, I think from Maya Angelou --- "When someone shows you who they are, believe them." Your uncle is clearly showing you who he is, he's not going to help out, and that won't change if you leave grandma there and he's the only local family. This is a sad but common theme, as you've heard from these posters. Please consider placing her close to where you live. It's important for her to have regular visitors, it's important for someone to be on-site ensuring she gets good care, it's important to have someone who can arrive quickly in an emergency. Your uncle is not going to do any of those things. Unfortunately, you can't make someone care. It will be a nightmare if you and your mom try to supervise long distance. You can deal with your relationship with your uncle later.