Intro and Major Family Ugliness

traveler2021

Hi everyone. First time poster. Not sure precisely what I am looking for other than I am feeling lost and have lots of questions to figure out how to help my Mom. I am not her primary caregiver and live several states away. The major issue weighing on my mind at the moment is a huge, angry, divide between my brother and I and its potential effect on getting Mom to her next step of treatment.

It looks like there's a lot of information here on the forum, which is great. (As I said, I have a lot of questions about all sorts of things.) This could potentially be the War and Peace of introductions, but perhaps it's best to start out with just a little about our situation history and where we are today.

In 2014 my Dad began to suspect something was wrong with Mom. Doctors' visits explained the forgetfulness and other symptoms as the result of UTIs, vitamin deficiencies, age, and other non-dementia related causes which they would treat and things would seem to be better for a bit. The symptoms came and went but we kept noticing things and it turned out that there was more happening than we thought that Dad was compensating for "behind the scenes". Dad finally told my brother and I the details of what was happening that we weren't aware of and what he suspected (though he had not gotten a diagnosis yet) so we began planning what to do next. Sadly, my Dad died suddenly and unexpectedly shortly after this came to light and after we dealt with that, we did get her diagnosis of dementia.

We discussed it and ultimately decided that my brother and his (then) wife would take Mom into their home. Early on I offered advice and recommendations well-intended to help but they were either glossed over ("everything's fine", "don't need anything"), rebuffed ("don't want other people in my house", "you don't understand so stop suggesting things"), or they were half-heartedly pursued and ultimately dropped. Overall, I don't feel like I handled that period of time very well because I didn't want to push any issue and we'd agreed he was the primary caregiver so I respected his decisions and hoped he would reach out if there was something he needed. (Plus through his work he had access to a lot of folks with knowledge of dementia which I felt grateful for, so I thought he had a good support system there.)

Over the next few years things seemed fairly stable except for major issue of his divorce, but I credit him that care for Mom never wavered. I visited when I could, continued to offer paying for help to come in and provide respite and/or coming to give them a break at times, none of which were accepted (though oddly he would accept financial help for other things.) More recently, he got re-married, bought a new house with an apartment for Mom, and everything seemed to be as good as it could be in the circumstances.

But all that changed suddenly and now the current situation has been declared untenable. They are reporting Mom has been abusive to the wife (obviously a serious thing) and other things that seem to be more common (difficulty getting her to bath, brush teeth, etc.) It's always been the plan that when Mom got to a point that exceeded the level of care possible from him in the home that we'd take the next step. But it looks like they're trying to jump off a cliff now: they have stated they have reached the end of the line, they are "done with her", and that Mom needs to leave their house as soon as possible. He has filed an application with Medicaid for placement (always the plan) in a local facility but I'm concerned because he has stated that she may not get any aid (although Mom has nothing to her name) which makes me think there's something he is not telling me.

On top of that (and the main source of my current stress and anxiety), in the last year it has become clear that there's a lot of resentment and anger towards me (much of it for things that happened decades ago) rising to the surface. Some particularly vile and ugly things have been said (the kind of things that are going to be very hard to repair.) I realize that's more about me and him, but its effect on working together to get Mom into what she needs has me worried. I know that it has probably been brought on from a really tough year of caregiving (particularly now that Mom has become abusive), the trials of 2020, and some guilt and shame for not being able to continue Mom's care in-home, but when he won't accept respite and there's no civil conversation to be had I'm not sure how to proceed. So far I've just worked to draw boundaries on the ugliness and stated that we need put that aside to get Mom into her next phase of care for safety and health. That's where I'm trying to focus.

Phew. I didn't think it would be this much so if you've read all this, deep thanks for letting me introduce (or vent I guess) and hoping that I didn't ramble too much. Lots of questions obviously so any sources about Medicaid, working through family issues, etc. you might want to suggest are appreciated. I am planning to call the ALZ Care Consultation and see if I can organization all this stuff in my head (in addition to contacting my local ALZ chapter for support.)

dayn2nite2

If he’s taking care of the Medicaid application and looking for her next place, why are you inserting yourself in this by calling a care consultant?

Frankly, unless you intend to take her into your home and/or place her in your home area, I’d not be offering any “suggestions” on her care.  There is nothing for you to do here.

Stay out of it unless he asks you to be involved.

Cynbar

I also think that you should step back and let your brother handle it. I assume he is the POA, and has been handling her finances as well as caring for her. Sounds like he has been doing a good job, I don't see any criticism of his care for her in your post. The regular path of dementia includes decline and often gets to the point where a PWD can no longer be cared for at home. He is working on the financial arrangements ---- good. Do you have any reason to think he won't arrange placement in an acceptable facility?  I understand there are a lot of issues between you and your brother, but unless you think he will handle this poorly, I don't see why you feel the need to be involved now. Given the circumstances you describe, it probably won't help facilitate this transition. You'll have to deal with those issues later, or possibly not at all .

traveler2021

Cynbar - Thank you. I have stepped back but looks like I've got more stepping back to do. I appreciate your response.

traveler2021

Thank you. I've not made suggestions for a while since it's usually not a very productive conversation. I thought a care consultant could tell me what other options there are beyond Medicaid since he will expect me to pay for care outside his home if that doesn't go through but if that's not something they can do then there's no reason to call them. I appreciate your response.

traveler2021

dayn2nite2 - Thank you. I've not made suggestions for a while since it's usually not a very productive conversation. I thought a care consultant could tell me what other options there are beyond Medicaid since he will expect me to pay for care outside his home if that doesn't go through but if that's not something they can do then there's no reason to call them. I appreciate your response.

Iris L.

traveler2021 wrote:

 I thought a care consultant could tell me what other options there are beyond Medicaid since he will expect me to pay for care outside his home if that doesn't go through but if that's not something they can do then there's no reason to call them. 

I'm jumping in.  The members here know a great deal about Medicaid and could probably answer a question if you have one.  Specific answers depend upon each state's laws.  

 The first thing I thought of while reading your post was, is there a question of co-mingling of funds that might impact the five year look-back?  There are a lot of threads about the necessity to avoid co-mingling.

Regarding "abuse" of the new wife.  PWDs (persons with dementia) lose their social filters and say or do things that polite people do not say or do.  Thus,  people who are new to them may feel that they are being "abused".  I have a relative who could not make allowances for her LO's behaviors, even though they were not directed at her.  Upset feelings ensued.

I have no suggestions to add.  I just wanted to provide another perspective.  

Iris L.

traveler2021

Iris L. - Thank you for your perspective and the information. I did not know about the co-mingling aspect of the funds and what effect it might have on the Medicaid application though perhaps my brother was aware through his sources. (I haven't been privy to how Mom's money has been handled beyond that they did share an account but I believe that particular account account was only for her money so hopefully that will make the review easier.) I also appreciate your experience with your relative's situation. It sounds very much like what's happened here. I feel for all involved. Thank you for your response.

M1

welcome to the forum. By care consultant, did you mean the Alzheimer's hotline? Certainly that's a reasonable thing to do if it will help you get your own thoughts straight.  A therapist might also not be a bad idea, if that would help you sort out some of the issues with your brother. But I agree that since they are the fulltime caregivers, it's their prerogative to say enough and start the placement process. Maybe you should just keep quiet for a while? Or let them suggest how you can help? Don't know if that's an option.

There are many threads here about placement, if you read around I'm sure you'll find information that's useful or  situations that resonate. Good luck, none of this is easy.

traveler2021

M1 - Thank you. Regarding placement, I've always made it clear that it is his call as the fulltime caregiver and when he said it was time a few weeks ago I fully supported him so no problems there. However, I do think you're right about being quiet now (since no matter what I say it seems to be taken the wrong way) so I'll be letting him lead the way and just wait patiently and quietly for any thing he might need me to do.

On the subject of therapy, I've gone through therapy for other things and it's helped so I'll definitely consider it again. Thank you for suggesting it. 

I appreciate your response and I've been looking around at others. There is a lot of info here that's been helpful.

King Boo

" Over the next few years things seemed fairly stable except for major issue of his divorce, but I credit him that care for Mom never wavered. "

It is good that you recognize the huge effort your brother has made on behalf of your mother.  7 years as primary caregiver can take someone down.   It clearly would be a contributing factor to his divorce, so I do think you need to recognize that his dedication probably cost him his first marriage.

Overall, I don't feel like I handled that period of time very well because I didn't want to push any issue and we'd agreed he was the primary caregiver so I respected his decisions and hoped he would reach out if there was something he needed. (Plus through his work he had access to a lot of folks with knowledge of dementia which I felt grateful for, so I thought he had a good support system there.)

I am glad that you recognize that you did not handle this well.   That's a very hands off approach, and looking back he probably feels he was abandoned with the very demanding care of a person with dementia.  And had to go through  the slow loss of his mother alone.    Out of touch Monday morning quarterbacking from afar is not helpful.

It would have been helpful to have taken on paying and reconciling Mom's medical bills, or organizing her records/costs for future Medicaid application.    Was a CELA found to do a legal caregiver's agreement?  This spells out the financial and procedural steps for care and relinquishing care.  It helps the family dynamic a lot.  

Professional care is professional care.  It's not exactly a support system.   The loss of his marriage should drive this one home.

Yeah, very ugly things can be said that are hard to repair, but time helps and it will help if you realize the mental and emotional distress he is under.  Let it go.

There is a large chance that some money was used to pay himself for care, entirely appropriate if it was done properly.  Or that money was 'borrowed' from Mom and lost in the divorce.

WWID?    Find one or two CELA's, call or e mail your brother, tell him you are willing to pay for several hours of consultation; that you realize things may have been complicated with Mom and her finances and that it is important to get professional help for her Medicaid application, or to find out when and how to 'fix' it so she will qualify.  Don't loose your mind if this is what happened; what is done is done.   Repeat to your brother: let's just see what we can do to get Mom Medicaid.  This lawyer can help us.

What were your mother's finances at the time of your dad's death?

Was he Durable Power of Attorney, or were you?

Cynbar

The most important thing here is that your mother continues to get good care. Perhaps your brother and his new wife will have to provide that for awhile longer, despite her resentment. As long as she is being cared for, I would tread lightly on diving into the issues with her Medicaid. Pushing too hard, calling lawyers on your own will exponentially increase the problems between you. Has he asked you to get involved with any of this? If not, I would monitor from the outside. But, if you have any reason to think your mother is not well cared for, that is another issue entirely. In that case, push him harder or, if necessary, Adult Protective Services should be called in to sort this out. Sometimes relatives mean well, but grievances develop when they dive in at all the wrong times.

dayn2nite2

Agree with Cynbar.  And thank you for being open to sitting on the sidelines during this time unless requested for input because it is extremely difficult to be providing the care daily AND trying to gather documentation for Medicaid, answering questions for the application, looking at facilities and weighing all the options/financial matters at once.

I will say that I had a similar dynamic while I was caring for my mother with my brother (who was in your position) and after her death we were able to re-establish a friendly family relationship after some months passed.  So the relationship isn't done, that remains to be seen.

Quilting brings calm

First… the Medicaid part … not all facilities accept Medicaid, not all facilities are eligible for Medicaid.  Many states exclude assisted  living and  memory care facilities That is probably the level of care involved for your Mom. So don’t jump to nefarious conclusions. 

Second- if you read lots of the threads here, you will find that most caregivers try to do it until they hit a brick wall, or fall off a cliff.  They don’t just gradually decide it’s time.  That’s why your brothers decision seems so out of the blue.  He’s been gritting his teeth and soldiering through until he has hit a wall. 

Third - your brother gave up one marriage for your mom.  He gave up friends, hobbies, a social life, even the chance to eat normal peaceful meals. No one who hasn’t lived being the primary caregiver for a long time can possibly fathom what it does to you. A large percentage of caregivers neglect their health to the point that they die before the person they are caring for. 

Fourth- your Mom isn’t your sister in laws mom.  There is not the same level of commitment for a new daughter in law that a lifelong  relative has.  Do not ask your brother to give up a second marriage.

While your brother has been giving up his life for years, you’ve gone about your daily life with minimal interruptions.  Sure, some vacation time and some cash has changed hands. Some advice given by someone who hadn’t spent 24/7/365.  You will read plenty of resentment on threads here toward far off relatives. I know I carry quite a bit towards my siblings that live in other states and then complain that I talk about my parents too much.

This wasn’t meant to sound harsh( although it most likely does).  I’m a very direct person and I tend to say the hard things in the shortest and most bleak ways  because I can’t think of softer words and flowery phrases.  Support your brother in his choice of facility and care until you can move to that locale and take over most of the daily realities. 

traveler2021

I appreciated all who gave their perspectives and information. 

@King Boo - Thank you. It remains to be see whether there is no CELA involved. My brother doesn't talk about legal or financial planning but that doesn't mean he hasn't done any. He works for company that owns LTC facilities so he does have access to lots of resources and information (at least that's what he tells me and it makes sense that he would.) That said, transparency from the beginning and both of us meeting with a CELA for planning would have been a better start. Finances at the start were minimal. After Dad died, I was the one who went through all their debts (which ended up being substantial and used most of their savings) and medical bills, resolved them, closed up the house, etc. The house, car, etc. were sold eventually all the money went to Mom (under his guidance) and I expected he'd use it for her care but I don't know the details. At the time we both had durable POA, but he's recently told me he had that changed to just him (though I'm not sure how that happened with me being informed but I am not wise in the ways of legal.) I appreciate your advice.

@Quilting means calm - Thank you for your straight talk (perhaps some would see it as harsh, but I have an open mind and take all comments for consideration.) I certainly do hope the best for him and his wife and I know it is easy for me to see things differently when I don't have the stress level he does. I don't see many easy paths here but as they says some things you cannot go around, under, or over...you got to go through them. I hope that as you and others have suggested that just standing by, giving it time, and helping when asked that will ultimately help everyone find some peace.