When is caring for your spouse at home the wrong choice?

oldehandsholdigI am invited to provide “Caregiver Academy” workshops around the metro-DC area and get to meet a lot of spouses, as well as adult children who are caring for a loved one. At a recent talk, a gentleman came up to me after everyone left and wanted to talk about how he might be able to better care for his wife at home.

“What kinds of things can I do beside sit her in front of the TV?”; “Why does she insist that she’s showered when she hasn’t for days?”; “When should I start thinking about finding a memory care community?”

I could hear the pain in his voice as he was battling with frustration, fatigue, and the marriage vows he made. I shared with him that I had recently heard and also seen statistics that show how often the caregiver predeceases the person they are caring for. He needs to put the oxygen mask on himself so he can be a good advocate for his wife.

He also started talking about how they are continuing to lead the life they have always lived. They are going out to dinner with friends but she won’t talk and is now eating with her hands. As much as it pained me to lose my parents bit-by-bit, I truly can’t imagine going through this with a spouse. That promise of a retirement together unravels as you try to maintain a sense of normal.

I don’t think there is a right answer that fits everyone. However, what I do know is that you need help be it spouse, partner, sibling, or adult child.

Because it’s easier to see the choices that I made in the rear view mirror, I will always suggest to people that they bring in more help if they can so they can enjoy their original role (spouse, sibling, adult child). The caregiver role can eclipse all others and I regret that a lot of my time was spent as a caregiver, and not her daughter.

  • Are you able to bring in some care for a few hours a day so you can run errands or get to your own doctor visits? There are probably a host of local home care agencies in your area and many have caregivers specifically trained to care for individuals with cognitive impairment and dementia. They typically run from $20 – $28/hour. There are also means-based options for those that can’t afford to privately pay and your local Area Agency for the Aging will be able to tell you more–you can find one near you here.
  • Are there local adult centers that offer classes or activities that your loved one could enjoy? We have senior centers run by the county and day programs run by several non-profits. Don’t dismiss them until you have tried them. They have music programs and run activities that will engage your loved one where they are. I know how much my mom wanted to continue playing bridge, but could no longer.  She quickly engaged in the arts and crafty activities when she joined them.
  • Have you found a caregiver support group to connect with other caregivers? Some even offer respite when you meet. Being able to talk to others who are facing the same issues can provide you with some ideas as well as companionship.

There might be medical factors that make living in a community the right option for you and your spouse, or just your spouse. You just need to find the option that is right for you. They need you to be a good advocate, not necessarily help them with all of their activities of daily living.

What do you think your spouse would want if you had this discussion a decade before it was personal? Wondered. 

 

The Sneaky Mind of a Scammer

phonescamWhile there is a lot of coverage for the inbound phone scams, I almost got sucked into one that I had called.

When my mom passed away, I dialed the contact number to reach her personal insurance agent. While the number is ringing, I decide to also check my email but am surprised when I’m prompted to press “1” if I am over 50. I wait for the next option which turns out to be a request for discounted insurance. I’m starting to think I dialed the wrong number and hang up. I dial the number again and pay close attention. I am not greeted with “Welcome to New York Life” but hear a general greeting, then am again asked to press “1” if I’m over 50.

Apparently, someone bought the direct number for my mom’s insurance agent. I didn’t stay on long enough to find out who it was, but thought what they did was both brilliant and sneaky.

It was a simple reminder about how easy it is to get fooled. I’m thinking I’m calling my mother’s insurance agent, and had I not paid close attention, I could have provided a host of information about her that could lead to an unscrupulous person being able to steal her identity.

In general, most of us are overwhelmed by the calls coming to us. There are several ways to help protect yourselves.

It’s discouraging to find out that they agency managing the National Do Not Call Registry admits it has failed consumers. The scammers don’t play by the rules, and now technology helps them spoof the caller ID leaving me to ignore any call I don’t recognize.

Some options to help block the INCOMING calls include:

  1. Sign up for a automated service for your landline to block calls. Nomorobo is free service I can get from my local carrier, Verizon. The Nomorobo website can help you find out if you can get their free service in your area. I implemented it at home and it has made a big difference. When we moved in nearly two decades ago, we opted for the unlisted number–that USED to work at keeping callers at bay.
  2. If you can’t get a service like Nomorobo, you can purchase a call blocking device like Sentry 2 that lets you blacklist numbers. It does require that you tag calls to the “blacklist” to block, and you can also add numbers and only get calls from those on your “whitelist”. It can fill the need but does require assistance to be effective.
  3. Don’t answer the phone if you don’t recognize the number. When you answer, they know they have a valid number. Asking to be removed, or selecting the dial option they offer typically won’t yield a positive results.
  4. Sign up for “Anonymous Call Rejection” with your local carrier. It will reject calls from anyone that has blocked their caller ID information. It is usually something you can enable using *77 but varies by provider.

THE NEXT SCAM COMING

There is a new model of scams coming in as voicemail. Your phone will not ring, but a message will be left in your message center. Because there is some consideration to mandate technology to block the spoofed calls, the “no ring voicemail” is the next tool in the fraudster toolkit.

It’s discouraging that we have to be so protective of our personal information. Unfortunately, the consequences of not being our own best advocate can be financially and emotionally devastating. Scammers stink.

I forgot visit or call Dad?

boxofrussellI woke up queasy and guilt-ridden. I was dreaming, or should I say having a nightmare. I dreamt I had forgotten to call or visit my dad in his care community for two weeks. I am not going to try to explain my dream because pieces of it still don’t make sense.

However, as I try to untangle my thoughts, I rationalize that Dad had been dead before Mom and in my dream, I had just lost my Mom. So how was I dealing with my grief over the loss of Mom so much so that I failed to contact and check in on my Dad? How did I exclude him from mom’s funeral?

I said I wasn’t going to try and explain, but then I just tried to explain …. sorry for the “mansplain”.

The aftereffects of caregiving and loss subside over time, but I’m still surprised by the depth and ferocity of the emotions that overwhelm me. I wonder if it’s seeing all the chocolate boxes for Valentines Day that has my parent’s on my mind. Mom used to love Russell Stover’s chocolates. Over time, she lost her love for them and moved onto See’s Peanut Brittle. She would eat it 24/7 and just the smell of it now makes me nauseous. Mom was always a picky eater and was losing weight she couldn’t afford. I was resigned to see her at least eat something she loved.

As I ignore Valentine’s Day believing telling your loved ones you love them should not happen one day a year … I will take some time today reflecting on how lucky I was to have my parents around until their 80’s. Calmed.

Advance wish planning for dementia can be a godsend to your loved ones

endoflifeFor those of us who are caring or who have cared, we know how many choices we are faced with and many are things never discussed.

I felt like the 20 years of my mom telling me she would never want to live with one of her adult children, meant I should never move her into my home. Even after Dad died and she was struggling. I emotionally bounced all over in considering what was the right next move for mom.

While this isn’t legally binding apparently outside of the state of Washington, at least it is something we can do to help offer more guidance for someone who might need to advocate for us. I did Five Wishes and wrote out a letter in addition to my Medical Power of Attorney, but this document has even more specific choices. The Medical Power of Attorney is legally binding, but I felt like the questions in Five Wishes and my letter would offer some insight if the choices got hairy.

When my dad in a moderate stage of Alzheimer’s is diagnosed with cancer … we believed we made the right choice to move him into hospice care. When mom broke her hip, suffered another stroke and we were asked to lift her “Do Not Resuscitate” order, I felt confident that letting nature it’s course and moving her into hospice care was also the right choice.

However, I know there are a lot of families who are never sure they made the right choice. In hopes of making sure your wishes are met, and to minimize the doubt that your loved ones might have in making a decision for you, I hope you will consider filling this out now.

Dementia Advance Care Directive

It’s easier to make the choices now when there is no diagnosis or decision in front of you. You can ALWAYS revisit, but it’s good to do this years before it may ever be needed. And it will benefit everyone. Recommended.

 

Umbrella Insurance & Caregiving

pexels-photo-100671.jpegAny family helping or caring for someone with mild cognitive impairment or dementia should consider the addition of an “Umbrella” policy.

In a Kiplinger article titled Why You Need an Umbrella Policy, they share that “adding extra liability coverage to your auto- and homeowners-insurance policies can protect your finances from expensive lawsuits.”  Umbrella policies are designed “to help protect you from major claims and lawsuits and as a result it helps protect your assets and your future. It does this in two ways: Provides additional liability coverage above the limits of your homeowners, auto, and boat insurance policies.”

In the early stages of my parent’s dementia, when they didn’t quite recognize they were having trouble, I helped my dad add an Umbrella policy to their coverage.  They had auto- and homeowners insurance, but I was concerned that the might be responsible for something that would jeopardize their retirement savings. I figured they would need every penny of their money to pay for their care.

One issue we faced early was that my dad was driving without a valid license. Their doctor had submitted the paperwork to have both of my parents licenses revoked. For some reason, they only thought my dad had his license revoked, even though they both received a letter. They practiced what they would tell the police if they were pulled over.   I was pretty sure the auto-insurance wouldn’t cover them since their licenses were revoked, so I prayed that nothing would happen. If it did, I hoped the umbrella insurance would help protect their assets to pay for the years of care they would be needing.

Later, at a happy hour at my parent’s retirement community, my dad fell over onto a woman and sent her to the ER. Thankfully, she knew my dad and she nor her family pursued a lawsuit. However, I could only imagine how quickly all of their assets could disappear in legal fees and an award.

If you are are caregiver, two things to do to protect your loved one and their assets:

  1. Contact your insurance agent and have an open discussion about your concerns to find the type of policy that could best protect you and your loved ones.
  2. Contact your estate lawyer. A Trust might be a solution to help protect your assets …. but I’m NOT a lawyer …. so please find a local elder care attorney who can help you navigate the coming years.

Dementia is a cruel beast and it steals so much from the individuals it preys upon, and the loved ones caring for them. I hope the suggestion on how to deal with practical issues to protect your loved ones will help you and your family.

If you are caring for a loved one with dementia, you can visit the my other blog DealingWithDementia.org. 

It’s a “Nothingburger”

NothingburgerIn the early phase of my parents slide into dementia, my dad would use this term a lot. As I flipped through The Washington Post this morning and saw the word in a headline, I smiled as my stomach clenched. I grew to hate this word. It felt so dismissive of my concerns.

While the entire caregiving journey is a tough road, I found the early phase the most difficult. Everyone is uncomfortable as you figure out how the dance will flow. In some families, I see as they freely ask for and accept help. In others, especially when the couple is still together, the adult children are usually shut out.

My parents knew something was wrong with the memory of their spouse, but neither recognized that they too had problems. My dad would usually listen, but my mom would take each statement and debate each point–in most cases I was told to stop lying or making up these horrible stories.

To keep the peace, my dad started to just truncate anything I said by stating “It’s a nothingburger.”

I had to wait for the failures to be called in to help. There were several times they would call me to come help and when I showed up my mom didn’t remember calling and thought it presumptuous of me to think she needed help.

When my mom started repeatedly calling to help get dad off the floor, I would run over. Until the day my husband asked me if I realized that I was prioritizing my parents over my own kids quite often. I was taking my kids to get flu shots and decided that could wait. With that one question, I realized I was enabling my parents by showing up and the next time mom called, I told her to call 911. That trip to the hospital made it clear to all of us that our parents were really unable to navigate through their day. The hospital recognized that both parents had cognitive issues.

Everything did not by any means become easier, however, that incident helped my siblings and I to navigate the next few months. It was at least two more years before my parents were in Assisted Living, but sometimes you have to hit bottom before you can start figuring out how to move forward. Revisited.

Do your loved ones have an Umbrella Insurance policy?

pexels-photo-100671.jpegThanks to Barbara who asked about concerns she had with wording in a renewed insurance policy. I suggest that all families who are helping or caring for someone with mild cognitive impairment or dementia consider the addition of an “Umbrella” policy.

In a Kiplinger article titled Why You Need an Umbrella Policy, they share that “adding extra liability coverage to your auto- and homeowners-insurance policies can protect your finances from expensive lawsuits.”  Umbrella policies are designed “to help protect you from major claims and lawsuits and as a result it helps protect your assets and your future. It does this in two ways: Provides additional liability coverage above the limits of your homeowners, auto, and boat insurance policies.”

One of my super-powers that I used to my advantage during my parents journey into dementia, was a sense of possible future landmines. My parent’s had auto- and homeowners insurance, but I had a major concern that the might do something that would jeopardize their retirement savings because of their cognitive status. Thankfully, I suggested to my dad that he add an Umbrella policy to their insurance and he agreed that it would be a smart protection given how litigious the world had become.

There was a period of about 3 months when my dad was driving without a valid license. Their doctor had submitted the paperwork to have both of their driving licenses revoked. However, they let me read, then ripped up the notice from the Division of Motor Vehicle that notified them of the license revocation and acted like it never existed. For some reason, they thought only my dad had his licenses revoked, even though they both received the letter (just a week apart). My mom would tell me that if the police pulled them over she would tell them “I was driving but got a cramp in my foot, so my husband took over so he could get me home to take my medication.” Yeah, my parents got really crafty in trying to maintain their status quo.

I was pretty sure the auto-insurance wouldn’t cover them since their licenses were revoked, so I prayed that nothing would happen. If it did, I hoped the umbrella insurance would help protect their assets to pay for the years of care they would be needing.

Later, at a happy hour at my parent’s retirement community, my dad fell over onto a woman and sent her to the ER. Thankfully, she knew my dad and she nor her family pursued a lawsuit. However, I could only imagine how quickly all of their assets could disappear in legal fees and an award.

Two things to do to protect your loved one and their assets:

  1. Contact your insurance agent and have an open discussion about your concerns to find the type of policy that could best protect you and your loved ones.
  2. Contact your estate lawyer. A Trust might be a solution to help protect your assets …. but I’m NOT a lawyer …. so please find a local elder care attorney who can help you navigate the coming years.

Dementia is a cruel beast and it steals so much from the individuals it preys upon, and the loved ones caring for them. I hope the suggestion on how to deal with practical issues to protect your loved ones will help you and your family. Experienced. 

I’m waking up at night in a state of panic

old-people-couple-together-connected.jpgI visited a couple that has lived in their home for 40 years. It’s obvious they are happy together. The wife called to ask me to come help her understand what she might do if her husband gets ill and can’t manage the finances. “I wake up in the middle of the night in a state of panic”, she shared.

We started talking through the basics. It’s easy to figure out where the gaps in plans are when you throw out a for instance. When I asked “Who would manage the bill payments and mind the Retirement Account if you had a car accident and needed a few weeks of rehab?” The husband didn’t have an answer. They have estate plans with powers of attorney set up, but they are over ten years old and his wife is telling him she doesn’t know where to begin if she had to pick up the reigns of the finances. He has a roster of their accounts and created a file for his burial, but no one has the practical knowledge to step in and manage while he recuperates.

We all need to create a practical back up plan. Just having a durable power of attorney (POA) for finances and a medical power of attorney for health care won’t cut it unless you have spent the time to educate the individuals you have named. Do they have a copy and do they know what to do to help you? If a Trust has been established and assets are named to the Trust that adds another level of complication — your Trustee, not your named POA is the only one with rights to control those documents.

For most adults, the two most important documents for everyone over 18 to have in place are financial and medical powers of attorney. Those powers impact you while you are living. Sadly, the stats from the Dept. of Health & Human services tell us that at minimum, 70 percent us over 65 will need someone to speak on our behalf while we are living.

For a cheap way to get this started, you can:

  1. Download a free copy of “Save or Shred” that includes a checklist of the important documents and details you need to gather, or
  2. Order a copy of MemoryBanc: Your Workbook for Organizing Life that will walk you through the process.  This book was named book of the year by Today’s Caregiver and includes the information your loved ones would need to help you.

It won’t take long to get this together, but you need to start. Encouraged. 

The Cascading Impact of Missing Tax Filings

tax seasonAs Ben Franklin penned in 1789, “…in this world nothing can be said to be certain, except death and taxes.”

As caregivers, those two events are challenging to navigate for very different reasons. I don’t think I need to say more about death, but the annual taxes is a sleeper issue for many families. If you are not living near mom and dad, you may not know that they have failed to file their taxes. The organization and project management can be overwhelming to those battling fatigue as well as mild cognitive impairment.

I have one case where the person who is trustee can’t recall her dad’s social security number, and has no idea where the prior taxes are located. She has never gone through the process to become the Representative Payee with Social Security (SSA) or the Office of Personnel Management (OPM) so they won’t talk with her until she follows their approval process.  They do not recognize Durable Powers of Attorney. We at least know the name of the accountant to we can request a copy of the last tax filing they prepared.  Before we can even begin, we have two major milestones to overcome with SSA and OPM.

In another case, medical expenses escalated and consumed all of the couples liquid assets. While my client owns a business interest, home and commercial property, they have limited cash flow that can’t cover their current monthly expenses. Without last years taxes, we can’t apply for a loan to bridge them through the next few months until one of the properties can be sold.

This is on top of all the emotions and energy around dealing with failing health. While skipping the taxes might seem like a simple solution to catch your breath, it just might knock you down a year later.

Just sharing a reminder NOW, so you have time to get in the 2017 taxes. Encouraged.  

Finding a Roommate for Mom or Dad

pexels-photo-339620.jpegI have several clients living alone and would love to have a local option to match them with a roommate. We have many colleges in the area and know there must be some students who might want more economic options for room and board.

We did it several years ago when we hired a college student to help with our kids. She helped with rides and basic meal preparation. I would love to start a resource bank to do the same thing in our area for seniors who want to stay at home, but need a little help to make it comfortable. Students interested in degrees in Speech & Hearing, Medical, or Social Work would likely be good matches.

Most of my clients just need help getting groceries, with basic home maintenance, and food preparation. Having someone young in the home would offer socialization for the home owner, and be a positive connection for the college student.

While there are now some online matching services, most of my clients would never go online to look for a roommate. Several of my clients are also in early stages of cognitive impairment. In talking to my clients and their families, they want and need a personalized experience to match them with students. I also believe it’s important to have someone involved to provide monthly over-site and mediation should there be any concerns.

For the spouses, would having an extra pair of hands be a welcomed help in your home?

I’d love to get your feedback. What would be important? What is fair in terms of compensation? Do you have anything like it in your area?

Some current providers I’m aware of include:

  • SilverNest
  • Golden Girls

Do any of you have a loved one with dementia who has a roommate? I would love to talk to you to find out what worked and hope to make this work for others. Interested. 

To read about some others who have found success with this model (but don’t have an cognitive issues): Check out the recent article from The New York Times: Getting a Roommate in Your Golden Years

 

Is Mom or Dad Safe at Home?

safetymemeI had two parents that were living at home, but my siblings and I worried for their safety. We weren’t as worried about falls in the home, but were more concerned over fraud after a predatory home repair company got them to sign an agreement for a gutter repair to the tune of $5,200. We also didn’t think they were safe on the road anymore given the amount of dents and dings that were appearing on their cars.

What I recognize now is that kids think “safety” and our parents think more in terms of quality of life. As their health might be failing, the last thing they want to give up are those things they can control.

Some of the key indicators to be watchful for include:

  • Weight gain or weight loss because they forget to eat, or can’t make healthy meals and maybe eating out more.
  • A change in their hygiene or dressing habits. My parents started wearing the same clothes day after day which was a change in their usual habits.
  • Withdrawing from their regular activities and connections with friends and family.

  • Frequent falls.

  • Missed appointments.
  • Unpaid bills and services being cut-off.
  • Mess and clutter in a home that used to be spotless.

Several of the issues might come down to your parent having trouble managing their medications. Are they taking them properly, if at all? In our area, there is a pharmacy that packages medication in packets that come on a roll and include the date and time they should be taken. It’s easy to identify when a packet is skipped.

Will they accept help in the home? Some home care assistance companies have individuals that can help with cooking, light housekeeping, and even laundry. When my parents refused, I tried to step in and fill all these gaps. Looking back, while I did it out of love and respect, I also in some ways enabled them to live very unsafely longer.

Life Care Managers are also helpful when it comes to getting on top of a medical concern and finding good resources to address failing health issues.

Have they given up the car keys and don’t want to ask for help getting rides? Several home care agencies have driving employees that can help get mom or dad to the grocery, visit a museum, or even just get a ride to their bridge group if no one is able to give them a ride.

When it comes to concerns with managing money, Daily Money Managers can help protect against fraud and scams, and make sure bills are getting paid on time.

For many, there is a negative reaction to moving into a life care community. Have you scheduled appointments and gone to visit ones near their home so they can see that there are many independent and vibrant options? The first step can be to select an option of their choosing. For several clients, I let them know that if they should ever need rehabilitation or skilled nursing, these communities have better options than the open bed you will find after an emergency visit to the hospital. It’s better to get on the wait list at a community you like, but NEVER need to use. You can get your deposit back if you never permanently move in.

For those that are living alone, you can also find services for wearable devices that either call for help if the wearer falls (it can sense a fall and call the user from the pendant to ask how they are doing), or that has a “push-button” option to call for help.

There are MANY single older adults living at home well. I watch as my neighbor continues to shovel her snow, cut her grass, and leave for the gym every morning around 7 AM.

At the end of the day, I hope you will consider that meaning and purpose are very important to the livelihood of your loved ones. If they want to stay at home, how might they get the help they need to be able to enjoy it?

My parents would NEVER accept outside help which unfortunately limited their options. However, that was the choice they made and we did our best to fulfill their wishes. You will find pages and pages in this blog of examples of how poorly that went for us. I wish your family a better fate. Reflected.