Month: November 2019

As people conduct their holiday travel this year, planning and completing a long-distance trip can be very stressful for the more than 230,000 Illinois residents currently living with Alzheimer’s and their families. While the symptoms of this progressive brain disease can sometimes make travel more difficult, it doesn’t mean families can’t travel with a loved one with dementia and participate in holiday festivities.

The Alzheimer’s Association Illinois Chapter offers a number of easy tips to help ensure a safe and smooth trip when traveling with a person living with dementia.

General travel considerations

• Stick with the familiar: Travel to known destinations. Try to visit places that are familiar.
• Be prepared: Create an itinerary that includes details. Give copies to family members or friends. Keep a copy with you.
• Pick the right time: Travel during the time of day that is best for the person with Alzheimer’s.
• Avoid layovers: If unavoidable, ask about airport escort services.
• Ask for help: For example, request airline personnel to help you navigate through the airport.
• Find local support: Before you go, contact the Alzheimer’s Association chapter at your destination.

Documents to take with you when traveling

• Doctors’ names and contact information
• A list of current medications and dosages
• Phone numbers and addresses of the local police and fire departments, hospitals and poison control
• A list of food or drug allergies
• Copies of legal papers (living will, advanced directives, power of attorney, etc.)
• Names and contact information of friends and family members to call in case of an emergency
• Insurance information (policy number, member name)

Traveling alone with dementia

Some individuals in the early stage of Alzheimer’s who remain independent may be able to travel alone, but planning ahead is necessary. Consider the following:

• When booking flights, inquire if the airline offers a “meet-and-greet” service to escort passengers through security and to their gate terminal. This service may also be used to help passengers transfer between connecting flights.
• Inquire about any other services that would offer companion support to meet the safety needs of the passenger.
• Include all emergency contacts on the airline reservation.
• Contact TSA to determine if a pass can be issued to family members or friends to escort the passenger through security to their gate terminal.
• Make sure that all travel documents and identification are readily accessible. It may be helpful for the person to wear a document holder.

By Sabina A. Sewillo CFP®

We know the numbers all too well – 5.8 million Americans living with Alzheimer’s, a figure that is expected to reach 14 million by the year 2050[i]. Furthermore, 16.2 million family members and other unpaid caregivers across the country provided an estimated $233.9 billion in care to those afflicted with Alzheimer’s in 2018[ii].

While a diagnosis often brings a myriad of complex challenges for the entire family, money management is one area that can be easily overlooked. As a certified financial planner, it is part of my job to ensure patients and caregivers alike know how to handle difficult circumstances. Here are a few tips:

Have a conversation: Many families struggle to discuss Alzheimer’s and dementia, even after a diagnosis. Once some of the initial shock wears off, consider having an open and honest family conversation[iii]. Start by discussing short, medium and long-term goals and financial objectives over the next several years. The dialogue should also encompass everything from debt and investment plans to future charitable intentions. Although it is difficult, having a proactive conversation enables the afflicted party to have a more tangible say in their financial future before cognitive decline advances.

Organize and review important documents: Soon after a diagnosis, it is essential that all important legal and financial documents are organized and compiled into one easily accessible location[iv]. Make sure to include usernames, password/pin information as well. Ensure estate plans, beneficiary designations, insurance policies and end-of-life documents are updated and reflective of the current health situation. Tackling these administrative tasks early will help to alleviate some of the financial burden moving forward, while also providing a critical roadmap for caregivers.

Implement safeguards: Alzheimer’s patients are generally more vulnerable to both financial mistakes and fraud. Therefore, it is important to proactively implement some easy safeguards in the early phases. For example, an adult child may be able to help with paying bills or balancing the checkbook. Other common tactics include replacing credit cards with cash and reviewing bank statements and credit reports more often than usual. I generally recommend a measured approach with assistance. That way the afflicted party does not feel as if he or she is losing their independence and dignity all at once.

Establish a takeover plan: Symptoms will eventually progress to a point where once simple financial decisions become impossible and a caregiver will have to assume full control. This is often carried out legally through a durable Power of Attorney (POA), where a person authorizes a third-party (agent or proxy) to make decisions on his or her behalf[v]. For example, a durable POA would enable an adult child to continue investing, handling transactions and paying taxes on behalf of someone who is either incapacitated or no longer of sound mind. It is critical that a “takeover plan” is well thought out and agreed upon ahead of time, as the person who will eventually assume decision-making authority should begin playing an active role well before a POA would kick in. Other documents to consider with legal advice are Wills and a Living Trust.

Though only one facet of an Alzheimer’s diagnosis, a proactive approach to money management can truly help to make an already challenging situation just a little more manageable. 

Sabina Sewillo is a Family Wealth Advisor, Vice President and Financial Advisor with the Wealth Management Division of Morgan Stanley in Chicago. The information contained in this column is not a solicitation to purchase or sell investments. Any information presented is general in nature and not intended to provide individually tailored investment advice. The strategies and/or investments referenced may not be suitable for all investors as the appropriateness of a particular investment or strategy will depend on an investor’s individual circumstances and objectives.  Investing involves risks and there is always the potential of losing money when you invest. The views expressed herein are those of the author and may not necessarily reflect the views of Morgan Stanley Wealth Management, or its affiliates. Morgan Stanley Smith Barney, LLC, member SIPC.

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[i] https://www.alz.org/alzheimers-dementia/facts-figures
[ii] https://www.alz.org/media/documents/alzheimers-facts-and-figures-2019-r.pdf
iii] https://www.alz.org/national/documents/brochure_moneymatters.pdf
[iv] https://www.alz.org/national/documents/brochure_moneymatters.pdf
[v] https://www.nia.nih.gov/health/legal-and-financial-planning-people-alzheimers

By: Amy Nimmer

My mom started showing signs of dementia when she was in her 70s. She lived alone as my father had passed away from cancer years before. She was incredibly independent and strong, so when she started getting confused with the simplest everyday task, we knew something was wrong. We took her to a neurologist who tested her by asking some questions, which she could not answer and confirmed that she was showing signs of dementia. The most frustrating part when I heard the diagnosis was that there was nothing they could prescribe or suggest to improve the situation. It made us feel so hopeless as we saw the disease progress.  

We moved my mom to a wonderful care facility where she was able to live independently for a couple of years before she moved to assisted living and then to the healthcare/memory care unit. It was incredibly difficult for my mom to leave the home she had raised her family in, however, with our support and the full support of her family, her transition went smoothly. She ended up knowing some friends in the facility and created new relationships, too.

When she moved to the healthcare/memory care area, I was certain it would be a short stay, however, I was very wrong. This is the place where she thrived. The ratio of healthcare professionals to patients increased. They provide music therapy and other activities she enjoys. She had progressed far enough with the disease that she no longer had anxiety about what was happening. She settled into a very stable environment where she found happiness, comfort and love.    

The healthcare facility has become her home and in some ways her family. They got to know my mom before the disease took over. And they take great care in acknowledging and understanding her past life in how they treat her for the future. They genuinely provide loving care for her.

The hardest part of Alzheimer’s disease is the feeling of hopelessness as you watch it progress with someone you love so deeply. The hardest moments for my mom were when she knew her memory was failing, and she felt tremendous anxiety in trying to do the simplest things. I took comfort in being there for her, like holding her hand and having conversations with her that she could understand without feeling ashamed of her memory loss. I worked proactively with my three other siblings to help them understand her struggles with everyday tasks and find the right care for her. 

Caregivers need to know when they need help.  The facility where my mom lives helps her stay healthy and safe. They allow me to have a better relationship with mom because I don’t have to worry about her anymore or deal with the stresses of what everyday care can bring. I can visit her and just focus on creating special moments with her.  

My mom greets everyone in the memory care unit with a hug, and some days she can find the words to say “beautiful,” meaning, “you are beautiful.” She used to say that all the time to me and other people she knew. Residents and workers seek her out when they are having a bad day for that special hug. We are blessed that she is happy and content despite the disease.  

Alzheimer’s is truly an insidious and dreadful disease. It strips away the very essence of life and leaves behind a shell of a person, who must find their way through the darkness. For my mom, life comes down to special moments: times when she laughs, hugs, and constantly chatters in her own language. Occasionally, there is a coherent flow of words, which I cherish. She has taught all of us that happiness comes from within. What makes her happy is very simple—being surrounded by people who love her and by living in a safe, comfortable environment. It’s the simple things in life that truly matter.

I never really considered myself a caregiver. Mom had lived alone since I moved out many years ago. She handled herself well, as she had her entire life. As I saw the signs of dementia, I started paying more visits, more frequently. Not that I needed a reason to pop in, but this made me feel better. She was still taking care of herself, but I noticed she wasn’t eating as well. I did most of her shopping for her, so I could tell. This was a sign that she wasn’t “just getting old.” At that point, it was obvious that Mom shouldn’t be driving, so I’d take her to her appointments. Although this was a bit of a change of lifestyle and routine for me, I really didn’t give it a second thought. I never really considered myself as a caregiver, just helping Mom. 

Things went bad fast, though. Mom fell at home and had to be taken to the hospital. She had surgery to repair an injured shoulder. This was the turning point. It was as if the injury accelerated all of the symptoms. She was confused, scared, and unsure what was going on. This is when the doctor said she couldn’t go home. I had about 24 hours to figure out what to do. I needed to find a facility that could take her right away because I simply didn’t have the resources to take her into our home. I was fortunate to find a place a few minutes from my home, and they could take her upon her release. I was relieved and scared. This was probably the most heart-wrenching thing I’ve ever had to do. I was putting Mom in a nursing home?! I remember like it was yesterday. I was trying to be so strong. We took her in and got her all settled. It was a good place, for her and for me. When one of the staff took her for a walk, I broke down and cried for the first of many times. I don’t remember ever crying so hard. The staff was great. They reassured me that this was best place and she’d be well cared for. This is when I turned from caregiver (which I don’t believe I really was) to a love giver.

There were so many tough times. I think because I was the most frequent visitor, she remembered me the most, the longest. The day came when I knew she wasn’t sure who I was, at least that I could see. I still believe deep inside she knew. Don’t ever think your loved one has “forgotten you.” You need to hold onto that. You may have to pull your hand from theirs when you go to leave. It hurts so badly. They may yell at you. You have to fake a smile. You just have to remember, they are your mother or father or brother or sister. Someone you love. And they love you as they always have, unconditionally. And they deserve the same thing in return. They are the same person, but a disease is holding them hostage. Tragically, but realistically, someday this disease will take them from you. There just isn’t a cure yet. But give them all you have to give. Haven’t they done the same for you?

In October I was lucky enough to be a part of the ALZ Stars team running in the Chicago marathon. I am fortunate enough to have friends (and strangers!) contribute to the cause. The Illinois group raised over a half a million dollars. As great as that sounds, I’m afraid it’s only a small amount of what is needed to find a cure. I am already starting to plan a few fundraisers in hopes of doing much more next year. 

As you look out for and help your loved one, you’ll feel stresses and emotions that may be unfamiliar. Please don’t be afraid to ask for help. A lot of people say this disease is harder on the loved ones that the victim. That’s not my place to say, but you will be tested. Don’t be afraid to ask for help. And you still need to take care of yourself, physically and mentally. Reach out. There are so many of us with shoulders you can cry on.

And don’t be afraid to smile and laugh. You’ll get one back. It’s damn good medicine for everyone.