Showing posts with label Dementia. Show all posts
Showing posts with label Dementia. Show all posts

Tuesday, July 5, 2022

The Longest Goodbye: Dementia’s Impact on Caregivers

 Note: This post is a part of a series detailing my family's fight with dementia and elder abuse.

Your loved one is finally safe. Whether they are with you at home, or they’re in a skilled memory care facility built to handle their needs, you have handled the most traumatic portions of their care, and you have a roadmap to ensure they are cared for until you have to say goodbye forever. Along the way, it is incredibly likely that you have neglected your own needs while seeing to those of your partner, parent, or trusting friend. This is an account of the curve balls dementia threw at us, and what I did to ensure dementia didn’t rob me of the pride and confidence I should have after handling such heartbreaking circumstances. And it’s a log of all the ways I get to say goodbye one last time.

I’ll start with self-doubt because it hits the hardest and earliest. There was suspicion that something wasn’t right almost with my grandfather five years before he entered memory care. The doubt started with me questioning who my grandfather was after my grandmother died. When he let transients destroy his house and fought their eviction, was it him under all the erratic behavior, or was he actually sick? This cut me, as a caregiver, to my core. How could I have been a good grandson when I let this happen? Was I too busy with my own life to see the signs? But the objective truth was that my brother and I did what we could as soon as we could, and our efforts were neither insufficient nor did they overstep boundaries.

When I look back, the diagnosis and financial control that finally got him the totality of services he needed was not some decisive lightning stroke but instead a culmination of almost twenty years of care and guidance. It started when Trust papers were drawn up by my grandfather before I’d even gone to college. It continued through evictions and wellness checks that didn’t go our way, and it is still running as my brother and I navigate his life in memory care amid his declining health and our own personal challenges.

I fought doubt by remembering that just being there for him was more than most people could handle. The anxious calls from neighbors and extended family were helpful, but we were the ones that had to file eviction paperwork and wait for the constable to arrive. We had to deal with lawyers and detectives, doctors and nurses, to make sure all his needs were taken care of. And he would not be where he is today without our help. The reward from this exercise was a quiet affirmation in your own memory of how you helped when they needed it most. Something that would outlast their forgetfulness.

The second challenge is exhaustion. You can only do so much for your loved-one. It is OK to pause your attention for a moment, an afternoon, a weekend, to ensure you are not overwhelmed. Dementia has no cure. It is a progressive disease. Abusers may attempt to weaponize your absence, dementia may drive your loved one to fall apart as soon as you step away, and every call from the staff at the home will put your heart back into your throat. The fight is long, and your loved one will not fare better if you end up at the end of your rope. Take some time for sleep, food, and general decompression after dealing with dementia issues for an extended period of time. Reading about dementia can be helpful, but put down the research and pick up a fun fiction book once in a while. Write poetry, sing in the car, or find affirmations to recite when you get down. We’re in a journal and set milestones on your path to help you measure how much you have contributed to improving their quality of life. Taking stock in a quiet time, even if you have to use ear plugs to make it, will keep you supplied with enough spoons for the bigger challenges.

 While I don’t have experience living with a loved one with dementia in my own home, memory care has presented its own unique set of challenges to my self-image as a caregiver. Separation made me feel neglectful for placing them in 24hr care. Worse, Covid hit less than a year after entering care, and they were in quarantine for much longer than anyone thought. I felt like I had to say goodbye without the assurance that I would ever see him again.  This idea that only inattentive people send relatives to care homes could not have been further from the truth. Getting them into care cause an immediate jump in their stability. Better still, it was a huge weight off the shoulders of our family. My grandfather was admitted to memory care over the Thanksgiving holiday, and he was acclimated and forgetting his abusers by Christmas. Animosity towards family members took longer to ebb, but the staff played a huge role in redirecting his attention.

In general, rely on the staff and their assessment of the needs of your loved one. You might visit or call periodically, but they’re there every day, all day. And there are plenty of opportunities to see to the needs of your charge. Each facility is different, but you may need to arrange hair cuts, outside doctor visits, and prescription refills. You may be able to pick up your loved one for lunch. Trust the judgement of the staff, and take the time they give you to regain the energy you need to work for yourself. Despite the tragic accounts you hear on the news of abusive caregivers, most care facilities are not bad places. Trust the research you did before admission. Trust the doctors and nurses on staff, and trust your own instincts when talking or visiting. While your care and attentiveness are just as vital now as before, being on guard every moment is not helpful. Relying on other providers to be there in the case of a fall, a bout of dementia-caused depression or confusion, or an afternoon meal means you get to choose to help without becoming resentful.

I have a family and career that means I cannot devote all my time to handling the needs of my grandfather.  Even if I did have the time, it is not healthy to spend it all in their service. If you are not able to find or afford a care home, be sure to spread out your obligations to your loved one through adult day care, other family members, or even their old friends and family of similar age. It takes a village to handle the needs of your loved one. Don’t close yourself off to help out of stigma or a sense of martyrdom.

The cynic in me wants to be melancholic about how we treat people with dementia. At worst, I am confronted with a feeling that we are warehousing our loved ones. At prohibitive cost, we may be draining generational wealth to, at-best, ensure a minimal quality of life or stave off a progressive disease in a single person. The broader existential questions raised by dementia healthcare and similar chronic and debilitating conditions should never overshadow the real care you provide for your loved one day after day. You are moving mountains. You are providing loving care. And they can feel your love even if they can no longer express it in words.

Having a loved one with dementia means that you get to say the longest goodbye. They may have lost the ability to express their feelings in the same way, but they can feel your calm and care every time you visit with them for just a bit longer.

This is not a comprehensive log of all struggles you may face by any means. But I hope these personal accounts can help you overcome what dementia throws at you. And I hope it can give you the strength to withstand those challenges to see a better day when we know more and can do more to help the ones we love.

Wednesday, July 28, 2021

PAYEE! at the Disco

Note: This post is a part of a series detailing my family's fight with dementia and elder abuse.

Navigating the patchwork of pensions and benefits systems available to my grandfather is a challenge, but it’s necessary to help him live comfortably now that he’s safe. If a relation or friend of yours needs help managing their finances, you may be able to help them with most financial transactions through a Power of Attorney, but the US Social Security Administration does not recognize such documents.  Instead, SSA has a separate process for helping someone administer their benefits by being named as a representative payee. It is fairly straightforward for something that feels like it was designed in 1940, but it can take time and be hard to navigate.  Your experience may be more or less complicated depending on the nature of your relationship and who the payee is, but the process to get started should be the same.

When someone you care for needs help with their benefits, you need to be named by SSA as their representative payee.  You can become a payee for a partner, spouse, child, parent, or close friend, and the only power you have is to help this person administer their Social Security Benefits. This means the money is sent to you, but you are merely an administrator for it. You spend it on behalf of the recipient, and it must be used for their care and upkeep. Everyone with a Social Security Number can pick a designated representative payee by logging on to their Social Security Account at and naming them. This might ease the process should something go wrong that prevents you from administrating your own benefits, but the person you name will still have to go through the verification steps that follow.

The payee appointment process starts with an interview (in-person or over the phone, depending on the current pandemic threat level) with the SSA itself.  Your local office should be able to help you directly. At the appointment, they ask you questions about your eligibility, relationship with the beneficiary, and try to tease out if you are taking advantage of the person you want to represent.  Be honest, and if it comes out during the interview that you may not be the best person to take care of them, you and the SSA rep will know. The SSA rep will ask for documentation (sent via fax or mail, blech) of why this person needs a payee due to their disability or incapacitation.  Afterwards, the rep may solicit more documentation from doctors or care facility staff about your relationship with the person receiving benefits.  They will ensure this person is being taken care of now, and that you, as the payee, are working with skilled providers in the patient’s best interest.  The collection/submittal period for this documentation has a strict deadline of 30 days.  You will need to start all over again with another interview if something goes awry.  In my case, the payee appointment coincided with the beginning of the pandemic. Doctors were slow to respond, and the first attempt expired with no decision, so stay on top of it!  If you have any doubts, reach out to the SSA rep that interviewed you.

After a nerve-wracking 30 days, you should receive paperwork in the mail from the SSA that you have been appointed as as representative payee.  It should also explain how much the benefits are, how they will be paid, and where they will be sent. The booklet that comes with this details your responsibilities, so read it, memorize it, and prepare to follow its guidance. It is also possible that you will receive a letter after appointment but before the payment has been sorted out.  It may say something panic-inducing like, "We have chosen you to be NNN's representative payee. However, we cannot pay you benefits at this time." After calling around and finding some threads after the fact, this letter is nothing to panic about.  It is automatically generated by the system, and it indicates that you, personally, are not receiving benefits, even if your payee will be.  This thread helped a lot to assuage my fears. The benefit information pertaining to the person for which you are responsible will be in the letter about your appointment as a payee.

If your are the payee for a relative or friend (not a spouse, child, or institutional relation), the next step is to create a separate bank account for the payee.  This will make managing the flow of money as easy as possible without mingling your funds with theirs. It also gives you is an account for direct deposit so you don’t need to handle paper checks..  Talk to your bank or credit union. Most will understand what you mean when you say you want to open up a "payee account", and the guidebook on payees includes specific language for titling the account.  Talk with your banker to ensure you have chosen an account type with no fees. Having direct deposit means you can usually get one for free, so shop around, and don’t be afraid to take your business elsewhere if the big banks want to charge you a monthly fee. I was able to set up an account and direct deposit the same day. You will need to call the SSA National Line at (800)772-1213 once you have the routing and account numbers. Once this is set up, another letter with a panic-inducing first sentence may arrive.  It may say, "We cannot pay you NNN's regular monthly benefit at this time..." followed by the fact that they are instead sending them to a financial institution.  This is just to warn you that you will no longer be getting paper checks. At this point, the benefits should be flowing securely and with minimal overhead for you.

Your main paperwork duty is the annual Representative Payee Report detailing that funds were spent in the interests of the person receiving the benefits.  Start keeping receipts in a central place, write expenses down in a log book, make copies, and familiarize yourself with the forms ahead of time.  You don't want to panic at the last minute and have to assemble documentation from scraps or jeopardize your appointment as payee. While I haven't had to do the yearly accounting just yet, I have had to do similar steps for trustee paperwork. I'll be sure to update this once I have gone through the process.

Having the payee designation allows me a lot more peace of mind when interacting with SSA on my grandfather's behalf. It's parallel to a Power of Attorney process, and its procedures are a little arcane. I hope this brought you some clarity when doing it for your own loved ones.

Wednesday, March 24, 2021

Preparing Legally and Medically for Dementia

 Note: This post is a part of a series detailing my family's fight with dementia and elder abuse.

Patterned marble floor at a bank

Most people know about Do Not Resuscitate orders and similar preparations for care should the worst happen, but they may not include in their plans a long goodbye.  As a part of estate and healthcare planning, it is important to prepare for end-of-life scenarios that include dementia.  This includes consultation with a lawyer and those that will have power after you become incapacitated so the path during a crisis is clear.  It also includes keeping family involved in your health planning and interactions.  Options and decisions should also be publicized to your broader family and cleared with the people you plan to rely on for care to reduce their stress and yours.  This preparation is an act of love for your family just as much as it helps you protect yourself.

My grandfather appeared to have done everything right.  He had an estate lawyer with whom he set up a trust; we knew he had a DNR as he would often talk about not wanting to linger should he become a "vegetable"; he had a talk with my father, brother, and I about how we would all split his assets after he was gone.  This preparation assisted him and us when my grandmother passed, and he was able to collect her death benefits and notify pension organizations in fairly short order.  But there was a donut hole in his preparation, and none of us saw it until after he started showing signs of dementia. Alongside a provision that covered his passing included a separate line about incapacity that kicked in once he was declared as such by two doctors.  All of the provisions for taking over his trust were triggered by this provision.  His appointed the successors, my brother and I, could only take over and have the power to manage his assets in his stead if he was so far gone as to be considered incapacitated.  And this line, one that seemed straightforward at first glance, turned out to be an incredibly high bar in the middle of a crisis.

Understandably, doctors are loathe to declare someone as incapacitated based on the word of panicked relatives alone. My grandfather was gregarious, if forgetful, and he seemed collected at times of low stress like after a hospital stay.  Through a steady five year decline, he appeared lucid enough to sow doubt that anything was actually wrong at all!  His dementia made him unable to make and keep regular doctor appointments, so it was impossible to obtain the opinion of a primary care physician capable of a longitudinal assessment of his mental state.

This gradual breakdown of personal interaction also extended to family relationships.  His personal choices to bring in strangers to the house had also alienated his family from his day-to-day health.   He became combative when we tried to intervene in his healthcare or suggest he was being adversely impacted by the people living with him.  He would argue that he was well enough to live independently and that he would rather die than go to a home.  Truthfully, his moments of lucidity caused me to wonder if he was fine, he didn't see anything wrong with the people taking advantage of him, and that maybe I had misjudged his character my entire life. I even had the heartbreaking thing that maybe he was just an asshole in disguise this entire time.  This all brought out one of the most pernicious symptoms of dementia: it can make victims actively antagonistic to caretakers like doctors and family.

Without two statements of incapacity, we could not administer any part of grandfather's estate even if it was obvious to us that he was no longer capable of doing so.  Banks turned us away even while they acknowledged my grandfather was being shadowed by his abusers in and out of the branch.  Without the trust paperwork in order, the bankers could barely acknowledge that he was a customer. Repeated hospitalizations for failing to take his medications properly were met with stonewalling by recovery centers when we set about trying to obtain a psychiatric evaluation.  The doctors had only seen him for a few weeks, and most were used to judging physical, and not mental, fitness.

To counter this wall of professionalism, we built strong ties to his in-home care nurses that began to visit once or twice a week after a particularly egregious health scare.  Luckily, the attending physician at the home health company was also doing rounds at a facility connected with the hospital my grandfather would go to in an emergency.  This created a chain of custody for his medical history that eventually lead to him being declared incapacitated.  After that piece fell into place, the planning of the trust finally worked to his benefit.  And my brother and I were able to manage his healthcare, his finances, and his safety with the full force of the law backing us up.

Preparing early to allow affirmative control of an estate by trustees rather than aging relatives can save time and heartache for both.  Those given control can dispute fraudulent transactions, process evictions for abusive house guests, or allow trustees to deal with police while enjoying the legal backing of the estate's property rights if situations escalate.  Setting up your aging relative to retirees CEO to become Chairperson of the Family allows a family Board of Directors to take on the burden of management, but it also invests capable individuals with the power to react with their full facilities.

If I have advice, it is to protect your assets within a trust or similar legal framework, but make the bar for taking control in the case of your partial mental incapacity be lower than the one for your total incapacity. My grandfather chose to protect his assets with a trust having multiple co-trustees once either he or my grandmother passed. The trust held all assets and property, and appointing multiple co-trustees meant everyone with a stake in my surviving grandfather’s health and well-being had a say. My brother and I, even while living in different states, had to stay informed and consent to any material changes in assets or income. The same attorney that helped draw up the trust also helped with DNR and Medical Power of Attorney documents that were vital in ensuring my grandfather received care even as he stopped being able to advocate for himself. The one part of the trust that made it difficult for us in the case of dementia was the requirement for an assessment of capacity before co-trustees would assume control. The fact that we could not act on his behalf in terms of his property or financial health, meant he lost almost $100,000 through theft, fraud, and property damage.  I am still unsure if estate law has been able to provide a middle ground in this area. Please talk with your estate planner, especially if you have a history of dementia in your family, to find out what your options are in the current legal system for your jurisdiction. Being prepared for dementia can be just as important as prepping for incapacitation from a stroke or an accident.

In the end, everything you do with and for your family will ease the burden of dementia on them.  Talk to an estate planning professional about your options, as a family, to prepare for long-term illnesses that may cause diminished capacity.  Keep in regular contact with your loved-one's doctors or assist your loved ones in obtaining such care.  Discuss options before symptoms start to appear instead of after the difficulties mount.  The interaction of legal and medical preparations will protect both your loved one and you should they decline.

Saturday, June 27, 2020

DIY Evictions in Nevada

Note: This post is a part of a series detailing my family's fight with dementia and elder abuse.

Disclaimer: I am not a lawyer. I do not even claim that anything in this story is accurate, legal or illegal. If you are attempting a DIY eviction, start with the legal self-help office. Most courts in larger systems have them. They can help you double-check your forms and make sure you're talking to the right people. If you have the means, consider hiring a company to do the eviction for you. The time spent waiting in line alone can be worth it, and any missteps are covered by the agreement.

If your grandfather has elected, in his dementia, to allow people of questionable character to live at his house, and, through a process of cajoling, begging, and pleading, they have refused to leave, it may be possible to avail yourself of the tortuous eviction process in your locale to unseat them from the house provided a) your grandfather agrees to sign the paperwork if you do not have Power of Attorney or b) you are able to obtain Power of Attorney and sign it yourself, but you would certainly be advised to avoid sparring with the legal eagle sovereign citizen types inhabiting the house and asking a third party professional to do it because they won't miss some minutia that cause months of delay, and, if you attempt the eviction on your own anyway, doing all the paperwork yourself, then it is possible to evict someone with the help of your local constable, nor should you be surprised, should your grandfather let them back onto the property in his dementia because he is being both stubborn and suggestable, to have to do the exact same process all over again (maybe twice if you screw up the paperwork in some small but easy to miss way again) to unseat them finally once you've been able to get him extricated from their influence and off the property.

By the summer of 2017, my brother and I had trespassed people from our family home only to have it reoccupied by those same strangers.  The triumph in 2015 was turned around only a few months afterwards as they were invited back in and established themselves even more firmly.  My grandfather provided various explanations (short-term charity, a favor to an old coworker, or a companion to help him from getting bored), but we could not influence him to send them away again.  None of it made sense to us, and we were left to wonder if he was sick, in debt, being blackmailed, involved in prostitution, a drug addict, etc.  His memory and recall were growing worse, but we didn't have any inkling of what dementia was nor who we should turn to.  Our arguments about his safety grew more frequent, and on occasion he was able to be reasoned with.  

The thing that shook him loose were discoveries that he had been the victim of check fraud multiple times, and he had finally become financially unstable.  Some names that appeared on fraud notices, forged checks not in his handwriting, and ETFs on his bank account for utilities at other addresses include Quasheen Laster, Zakeyaha Amacker, S Jones, Zanay Pruitt, Tangela Reliford, Zaysia Chess, and others.  We prevailed upon him to start eviction proceedings early in the summer of 2017.

Evictions are a touchy subject.  Tenants say Landlords use them to terrorize tenants with short notice and for facile reasons. Tenants fear the black mark on their credit or being tossed out into the summer heat, and the process evokes images of your belongings piled on the side of the road.  Stories about squatters in Vegas that abuse hearings and appeals, dragging their occupancy for months, circulate in media and parlor conversation.  But what do you do if your grandfather casually invites people to stay with him in his dementia?  What recourse do you have to make a suggestable man carry through with a month-long process that is a struggle at the best of times?  Who are these people that won't leave your family home anyway?  Can you trust the law to act, and how will these people respond to having a case brought against them?  This uncertainty weighed on us as we started researching the process.

We chose an eviction as opposed to another trespass because we wanted to be sure the people taking advantage of my grandfather could be removed from the property without recourse.  They were living at the house for months.  They had taken control of the upstairs, the closets, the kitchen, and every other surface of the house.  Any question that they had been living there for an extended period of time would be met with the law stonewalling us.  A trespass could become he said/she said, and there was no guarantee that officers could be prevailed upon to enforce it again.  Even though they were not ejected immediately, the eviction could be weilded by us should they return.