New here, introducing myself

JMack88

Hi, I'm new to ALZconnected.  I'm an adult child helping my sister care for our mother.  A lot has happened relatively quickly for us.

Our father passed away in 2018 from complications of a disease called Multiple System Atrophy.  It's a rare disease related to Parkinson's.  Some would call it Parkinson's on crack.  It was horrible seeing our dad go down hill so fast, becoming a prisoner in a body that no longer followed his directions.  Mom cared for him up to a point, but my sister and I ended up bringing both of our parents from their home where they retired to, back to the house we grew up in where my sister currently lives.  All three of us (Mom, sister, me) cared for him until he went into hospice care and passed away.

Due to Dad's illness, my sister and I probably missed cues about mom's mental health.  But after the funeral and as we dealt with his estate, we realized mom was having memory problems in addition to profound depression about losing her husband of 50+ years.  Upon exam, her physician said she has mild cognitive impairment and prescribed donepizil.  The diagnosis occured about a year before the COVID pandemic struck.  Her doctor said she should have someone with her to remind her to do things like to take her meds, and to eat at regular intervals.  So initially mom went back to the place she and Dad had.  My aunt lives just down the street and would help remind mom to do things.  However, my aunt was diagnosed with melanoma and had to undergo surgery and treatment, and my uncle's health has also declined tremendously.  Both my aunt and uncle have diabetes also.  Now my aunt has too much to do caring for herself and my uncle.  My sister teaches school so she has summers off and so far we've been able to convince Mom that she should stay with my sister in the winter because the winters where her house is are too harsh to face alone.  My sister then spends the summers with mom at Mom's place.  It's not an ideal situation.

During the pandemic mom has declined mentally although her physical health is great.  She could easily live into her 100s like my great grandmother and great uncle, or into her 90s like several of my other grandparents.  This is scary for my sister and I, because we aren't sure how long she might end up needing care.

My sister and I are also unfamiliar with how to decide what types of care would be best and what mom's insurance/medicare would cover.  We don't even know where to begin.

My sister and I are both single, she never married and I'm divorced.  We both work full time jobs.  During the pandemic we were working from home.  My sister got called back to teach this school year, but I'm still working from home.  

At this point we don't believe mom should be left alone at home, and we aren't sure what we'll do when I get called back to the physical workplace.

M1

Welcome to the forum JMack.  One of your first orders of business needs to be to get your legal ducks in a row.  A certified elder law attorney (CELA) can help draft powers of attorney and living wills, as well as help you assess her holdings and figure out whether you need to apply for Medicaid if she should need placement:  Medicare does not cover long-term care.   And the requirements in each state are different, so it is usually very worthwhile to do this early.  And it may help to check around:  legal rates differ, but most will provide an initial consultation free of charge.  It may help to interview several.

Good luck, there are many wise and experienced people on this site.  It will help, for sure.

harshedbuzz

You and your sister need to sit down with a CELA (National Elder Law Foundation (nelf.org)) and get your ducks in a row. Mom needs a POA and you need to understand Medicaid planning in your state. 

It would also make sense for your mom to be re-evaluated to see if her MCI has transitioned to Alzheimer's or another form of dementia. Dementia is a terminal diagnosis which means family longevity may not be in the cards for her.

The time will come, and may already have, when mom can not be left alone and will need a level of care beyond what you and your sister can provide. Options might include a day program that functions much like a day care, having aides come to the house (these generally run close to $30/hr through an agency and a bit less if you find someone through Care.com or word-of-mouth. Placement in a MCF might also be a solution to provide a safe place while you both work. 

HB

JMack88

Thank you for your kind response.  My sister has mom's POA and most of mom's legal things are in order.  We are working on the last few items, but the pandemic caused some to get postponed.  Mom lives in Maryland with my sister, but owns property in Pennsylvania.

MN Chickadee

A CELA or attorney who practices mostly in elder law can help with financial planning for care.  This is a spend down process, and will advise if and when to apply for Medicaid to pay for long term care. They can look at her insurance and all benefits she may be entitled to and advise you in making these decisions. Make sure it is an attorney in the state she will reside since each state has different rules. Then you start a search for facilities, perhaps that accept medicaid if needed, and get on wait lists. Even if you don't need the place right now it is extremely important to have a back up plan. A memory care enhanced assisted living or regular MC may be the place for her in the early stages. A place where she will received medication mangement, meals, medical oversight and activities. Some places are better than others at allowing people to age in place. Sometimes a move is needed if they decline. Read other threads here, we often have to use therapeutic fibs and call the move temporary. 

Hiring an aide come to your house during work hours may help bridge the gap for a while. Call them a "cleaning lady" or whatever will fly. This may allow you to work and wait until it's clear mom needs more care than you can offer. We used adult daycare for a couple years. It was perfect, to get through the time where my LO couldn't be alone but wasn't quite ready to be moved to care. 

Just because she is healthy now doesn't necessarily mean she will live to be 100. If it turns out to be Alzheimers or something, which MCI often does turn into full blown dementia, it will start to affect the whole body not just the brain. My mother was the absolute epitome of perfect health going into this. Healthy as a person can possibly be but she is nearly wheelchair bound now. The brain starts to forget how to walk, swallow, all the various bodily systems become affected. Even though she can walk her balance is crap and has had numerous falls, and you never know when a fall will become a catalyst to all kinds of issues. So basically there is no way to know, no path everyone follows, all you can do is careful planning for all stages and be pleasantly surprised if you don't need plan Bs and Cs or she has plenty of time in the early stages. I found the book "The 36 Hour Day" to be a very useful guide in the early stages to know what to plan for. 

JMack88

@MN Chicadee, I did buy that book 36 hour day and have been meaning to read it.  I just can't seem to find enough time in my day to do so.  I'm sure that's something all of us deal with.  I'm considering going to counseling myself for various reasons including grief about my father's death and learning the best ways to work with my sister to care for mom instead of trying to do things independently since we need to share the load.

RanchersWife

Hi JMack,

You have an opportunity to plan now. You and your sister can set goals, discuss each other’s needs and determine who has the final say in matters. In some ways it is like a marriage. You will have to rely on each other. When one is weak the other has to be strong. I care for my mil. I do it for my husband. He does his share too! If one of your goals is to have a strong relationship with your sister when this is over you might need to say that to her. If you can appreciate the work each of you do in this, not become resentful and do it for each other you can achieve more. Sibling relationships are hard. I can push my sister’s buttons with out even trying. I can do it with a text. Probably and emoji. I can also slip into bossy big sister mode without even realizing it. If you both commit to giving your mom the best care, work together, appreciate each other and communicate you can do this. I say this and am actually looking at trying to support my sister, in the future, with my own mother’s dementia. I hope I can follow my own advice. 

jojobaggins42

JMack88 wrote:

@MN Chicadee, I did buy that book 36 hour day and have been meaning to read it.  I just can't seem to find enough time in my day to do so.  I'm sure that's something all of us deal with.  I'm considering going to counseling myself for various reasons including grief about my father's death and learning the best ways to work with my sister to care for mom instead of trying to do things independently since we need to share the load.

JMack88, welcome to the forum. I think you have already gotten some really good tips from other posters, so I won't duplicate. But if you can do therapy, please do. I also lost my dad recently, and therapy has helped me a lot. Grief is hard. And you're going through anticipatory grief now with your mom. The mom you've known is slowly disappearing. I found a therapist who does grief as her specialty and that is what I recommend if you can find someone. She has also worked in hospice, so she's been able to give me lots of advice about taking care of my mom. (My mom also has terminal cancer, so she's on home hospice already). 

I found reading the book The Orphaned Adult really validating after my dad died last year. It was not triggering or difficult to read. It just felt like a conversation with a friend who was naming so many of the things I felt. 

The 36 Hour Day book, while very comprehensive and thorough, can be overwhelming. If you want to start with something shorter but still very helpful, this is a free paper or PDF publication from the NIH about Alzheimer's. 

https://order.nia.nih.gov/publication/caring-for-a-person-with-alzheimers-disease-your-easy-to-use-guide

And it may be good for you to be a POA also. That is more convenient. You and your sister can both be primary POAs and able to make decisions alone without needing consensus. (Although if you have trouble agreeing or getting along, this can be tough.) Or another option is that you could be listed as the backup POA if your sister isn't available but she would otherwise be the main decision maker. 

One of my brothers and I are both the main POAs for my mom (able to make decisions independently on her behalf) with my sister as the backup if we aren't available and then my other brother if the three of us are unavailable. 

Good luck to you, and reach out here anytime you need to. 

Cynbar

There may well come a time when you and your sister, even working well together, can't keep your mom at home. If you are both working at some point outside of the home, you will have to get care in, which can be very expensive and difficult to arrange/maintain. In this caregiver journey, we all need to be ahead of the game and ready with a Plan B, as things can change in an instant. Consult with an attorney, but it's likely that the property in Pennsylvania will need to be sold (states differ but generally you can be on Medicaid and own the house you are living in but not other property.) I would confirm that with the attorney and then start work on it, because this situation doesn't sound sustainable long term for any of you.

JMack88

@RanchersWife yes, my sister and I need some time to sit down and have a long talk without mom hanging over our shoulders listening to every word.  It's difficult to get away and when we do, we just want to relax, not discuss even more difficult stuff.  My family also has always avoided discussing these sorts of issues, the whole "keep a stiff upper lip" mentality if you know what I mean.  So starting a discussion can be difficult.  But I am a big sister and I do need to remember not to do things to trigger my sister, which can be difficult.  

@jojobaggins42 thanks for the welcome.  I will look into the Orphaned Adult.  I work at the NIH so I've already done significant reading from the NIA's website and publications.  Good points about the POA situation.  I believe I am listed as the backup POA.  My sister just happened to be driving my parents the day they revised their wills and other paperwork for medical and EOL situations.  That was just days after Dad received his original diagnosis of Parkinson's which turned out to be incorrect.  He had Multiple System Atrophy.  Anyway since my sister was with them and they needed a signature for the POA paperwork they called me and everyone agreed to put her as POA.  I need to follow up on that and find out if I'm a backup or what.  Thanks for the reminder.

@Cynbar I really appreciate the information.  We will have to determine what needs to be done quickly.  The current prediction is that I might be called back to the physical workplace sometime in November.  At that point my sister and I will have to determine what to do so someone can be with mom during the day.  Question- if Mom were to sign the property over to my sister or I or both of us in PA would that resolve the problem with the out of state property?  Also one of her two properties is owned by her and her last two living siblings with rights of survivorship.  I am not sure what the legalities of trying to sign that one over to anyone else would be.  We definitely need to speak to a lawyer but one in MD or one in PA?