Category: Managing Parent with Dementia

My Top Ten List of Dementia Don’ts

alzheimers-badgeI started this blog to help me deal with all of the changes I was seeing in my parent’s and feeling helpless. Over five years I learned quite a bit, and have poured it into Dealing with Dementia in hopes of making this journey a little easier on the next family.

I’m honored to  have been named one of the Best Blogs of the Year for 2016, 2017, and 2018. To celebrate, I’m recapping my Top Ten Dementia Don’ts.

I wrote these when my mom was living in an assisted living community dedicated to memory care. Some really only come into play in the later stages, but could really just be general life rules if you ask me!

10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

9. Don’t assume they can’t answer for themselves.

8. Don’t blame them for the changes in their behavior.

7. Don’t remind them of a death of a loved one or pet.

6. Don’t talk about someone with dementia in front of them like they don’t exist.

5. Don’t think they can’t communicate just because they don’t speak.

4. Don’t assume they can’t understand you because they are silent.

3. Don’t correct or challenge trivial things.

2. Don’t say “Remember when … “

1. Don’t tell someone diagnosed with dementia they are wrong.

What are some of yours?

Revisited. 

** I updated this post in 2018 when I was again awarded this distinction. 

 

 

 

 

 

 

 

Be Mindful of Remaining a Spouse/Daughter/Son

transportchairI was asked to participate in a panel discussion called “Help Mom & Dad Make All the Right Moves” with a doctor who serves the senior community, and a life care manager. In the closing segment, we were asked to share one piece of advice for a fellow son or daughter about our caregiving journey. The doctor, Steven Simmons shared that you need to remember to be the son or daughter. He went on to share how difficult it is for him to not be the doctor and how he just faced a crisis with his mom and worked really hard to be the son not the M.D. He said he worked quickly to bring in another doctor so he could be the son.

I was shaking my head in agreement as he spoke. I have shared this with the professionals that did come in to help me through pivotal moments. I have confessed to them that looking back, I wished I used them more. I wanted to help and so many of the things seemed simple, but one of my biggest regrets is not having a life care manager manage all of my mom’s medical needs.

The last year of my mom’s life she was in and out of hospice care … the palliative kind … which is now very common to help older adults live comfortably for issues that medical interventions can’t cure. So we had a hospice doctor that would visit her in the community. However, there was also a community doctor, and some minor issues, seemed to keep getting lost between the two doctors. Every month, I was spending several hours trying to chase down these minor health care issues which took away time from visiting my mom. I was at her community, but not even in the presence of my mom. Over the course of the year, maybe it would have cost a few thousand to have someone else take her out for the medical follow-ups, chase down and get answers to the minor issues that needed resolution. Mom had the means to pay for it, and I should have used it so I could have been the daughter.

Yes, a son or daughter should be counted on to do those things. However, I am still raising kids, running a business, and was trying to lead a life too. Now that mom is gone, I wish I had a do-over and instead spent the time with her, not on managing her care needs.

While an aging life care manager does have an hourly rate between $135 – $185, they can resolve issues quickly. There were so many things I learned on my journey, but, at the end of the day, I might have better served me and my mom if I brought in someone to handle certain aspects of her care.

At the time, I made the best decision I could with the information I had. Reviewed. 

 

 

Navigating the Early Stages of Dementia

redpurse
I wanted to get my mom a red purse thinking it would be easier to find. 

I feel that the early phases of dementia bring some of the hardest things to navigate. Things get lost, misplaced, or hidden really well, and it can be incredibly frustrating as well as humiliating to the person who is missing their phone, keys, purse, or wallet.

With no short-term memory, it’s hard to rely on what the person says about the last place they had the item. It’s also human nature to get a little defensive when someone is grilling you about where you left your wallet. It’s best to take a breath and tread lightly. The person that lost the item and can’t find it is already in distress, and I know from experience, looking for it over hours can be maddening.

Some ideas to help:

  1. Get the Tile (or TrackR or other GPS device) you can store in the wallet, purse, put on the keychain or attach to a phone.  You can put an app on your smart phone to find it.
  2. Make sure you have color copies of their identification so you have account or record numbers should you need an ID replacement.
    • Cancel the credit cards and checking account. A growing number of seniors are having fake checks drawn on their checking account after a purse or wallet has gone missing (even to show up later, they already have your routing and account number).
      • Only carry a check register with a little money in the account.
      • Do not use Debit Cards that immediately draw money from your checking account but use a prepaid credit card, or set up an account with a low credit line to minimize exposure.
    • In most states, you can log in to their DMV account and reorder a replacement drivers license.
    • Keep other forms of valid photo identification active. For instance, should you lose your driver’s license, having a valid Passport can act as a backup form of photo identification.
    • Contact the issuing agency. For those of you with a military ID, you may find the local base can help you navigate the loss of the ID.
  3. Get a safe with a digital keypad for safe keeping. For a family friend who has children that visit, I mentioned they might want to consider storing the important IDs in the safe and the siblings can easily get into it if they share the safe passcode should they need to help mom replace a lost ID again. They did have one with a key, but mom couldn’t find they key.

I don’t really understand the reason behind the behavior to hide things, but I know that I’ve seen it in too many clients.

What have you done that has been successful?

If you haven’t already, I hope you take the time to get the important documents, account details, and assets organized so you can minimize any further loss or misplacement. You can download a free copy covering what to save and what you should shred. The hiding habit usually includes a hoarding habit. Magazines and mail start to pile up … so I hope this will help you sort through the piles you might be also facing. Revisited. 

Here are a few of the stories from my journey:

Where is my Gold Necklace?

Where are you?

Where are my car keys?

 

Decisional Capacity and Short Term Memory Loss

simple choiceI’m working with two older adults who have seemingly lost their short term memory and are unable to manage their calendars. They haven’t been diagnosed with anything more than mild cognitive impairment but since their kids aren’t local, I have been hired to help pay bills and manage the cash flow. What I keenly recognize is that they have the ability to make reasonable choices that align with former saving and spending philosophies, but they have just lost the ability to do simple tasks like manage or recall who they have paid and balance the checkbook.

As an adult child, knowing my parents could not manage simple tasks had me and my siblings petrified that they would become victims of fraud and scams. We intervened at different times on their behalf to turn back on the water, cancel a second predatory contract for some home repairs, and even close down extra accounts they just weren’t using any longer. However, now that I’m stepping in as a Daily Money Manager to help older adults manage their bill payments, cash flow, and general finances, I also recognize how valuable keeping them involved in the process is to their self-esteem.

While it’s much faster to just take something away and do it yourself, going through the mail, prioritizing and making bill payments together, allows the individual to retain the sense of independence that is lost when the checkbook gets “taken away.” By the time my mom turned over the checkbook to me, paying bills just caused her panic since she had lost her ability to understand the value of money and didn’t recognize that they could afford for the escalating costs of her care.

I hope if you are in the early stages of cognitive issues with a loved one that you can recognize that being able to make a decision and be involved is vital to the sense of meaning and purpose to the person you are helping. Keep it simple, and keep them involved as long as you can. Appreciated. 

Caregiving or Enabling?

pushI’m intrigued to listen and learn from those of you who have a healthy parent and are helping them care for loved one. Several of you face many of the same frustrations my siblings and I faced:

  1. Refusal to make changes to status quo living.
  2. Dismissal of concerns regarding current situation.

We want to help, but get lured into thinking if we comply with the things wanted, we build trust to help them make the real changes they should be making.

In my experience, helping someone maintain a poor living decision doesn’t create a pool of good will, it just lengthens the time before the critical incident happens so you can make the needed change for better health and safety.

I vividly recall my mom calling me one evening to come over and help with dad, “it’s urgent!” I was so hungry to hear my parents ask for help, I would jump the moment they requested assistance. However, this was the third alarm this week and I happened to be on my way to take the kids for their flu shots. I had to decide if I was going to serve my parents over my kids. The fact that I kept responding to my parents alarms was wearing on my marriage. I needed to realign my priorities, and in effect, I was spending a lot of time keeping their status quo afloat.

After this incident, I decided to step back and let them fail.The next time my mom called with an emergency, I told my mom to call 911. This event helped illustrate the depth of the problems my parents had functioning and it turned into a 3-day stay at the hospital for my dad. Until this incident, most of my concerns about my parents were dismissed by my siblings. To be fair, my parent’s were good at putting on a good show when my siblings came to visit. I realized that my constant involvement was allowing my parents to continue with their status quo lifestyle.

Once I had made the decision to give up, I mentally detached myself just as my siblings were starting to engage. I was so weary at the this point, I told my siblings they needed to deal with it. The resulting conversations with my siblings resulted in me re-engaging, but now, my siblings were part of the support system for me. We set up regular phone calls, scheduled interventions, and moved toward solutions to keep our parents cared for and safe.

What I learned was that there is a fine line between enabling and being an involved adult family caregiver. Is now a good time to figure out where you might be? Asked.

 

How to Fight Elder Fraud

cost-of-fraud

Every year, at least $36 Billion is reportedly taken from older Americans, according to the National Council on Aging. The largest segment is “Exploitation” — when businesses, individuals, or charities use pressure tactics or misleading language to lead seniors into financial mistakes. My parents were prayed upon, and the source of the fraud was surprising.

When my parents still lived in their home, they signed two agreements for the same work — one was for a few hundred, and the second was for $5,200. Thankfully, my mom sensed something was wrong and called my sister. I lived near mom and dad so could stop by and found the two contracts for the same work — one that was horrifically over-priced. We were able to cancel the outrageous contract, but I should have also called the police, Adult Protective Services, and the Better Business Bureau. We were so stunned at the time that 1) they could victims of horrible people; 2) thankful we caught it in time that I never circled back to work with the systems in place that could help protect others from this same crime.

The Washington Post carried a story today that detailed the depth of the crimes against three local seniors. They were robbed of more than $100,000 by what our local police call “woodchucks”.  They start by offering to trim trees, and if they do return after you have given them a deposit, they usually find a host of other issues to repair. Most of the work is either not needed (roof tile or chimney repair that you can’t see), is done poorly, or never completed.

Holding that checkbook is for many, the last item in helping them feel control over their world. It was at least another year before my mom would let me help her with the checkbook and bill payments. When I started to notice that my parents were writing weekly checks to a variety of charities I had never heard of, my antennae went up. If you read the letters, they are written to make the recipient believe they have already promised a donation.It can be hard to get a handle on this since it feels good to give. However, sometimes it can get out of control.

As a daily money manager, I helped one client who was giving over $2,000 a month to a host of charities she doesn’t even believe in because of the letters and calls coming into her home. He son asked her to keep the donations to under $30, which she did. However, she was writing checks and giving her credit card out nearly 100 times every month.

When we started working on bill pay together, I was able to show her how much money she was giving away and it surprised her. When we started to go through the mail and discussed the charities, she realized she didn’t know what they did or even believe in the mission. After taking these steps, it was easy for her to realize that she needed to reconsider her giving and we came up with a good solution for her.

If you are worried about this with your loved one, start slow. Work in tandem to get a handle on the charitable giving — tax season is a great time to do this. Create a list of the key charities of interest and suggest that you review all of the others at the end of the year.

Money is always a difficult topic in families. If you are approaching your role as care partner, you may find it easier to tackle these issues if you do them together. If you don’t live near your loved one, and you think they need some help, I suggest you consider finding a local daily money manager to help you navigate the road ahead. Recommended. 

Five Reasons To Get Financial Support

checkbookI realized how much control of the checkbook meant to my mom. While I was terrified she was going to be taken advantage of … she was totally unconcerned over the idea that she might lose her wallet. The reality was that she didn’t remember ever misplacing her wallet or purse.

What I came to learn was that the biggest threat to her financial security was not what most expect. It was the number of non-profits that wanted to get a few dollars to fund their mission. It felt good to my mother to be able to send off $25 to a charity.

A recent family asked me to step in and help their mom. We were all shocked to find that she was giving away over $2,000 every month in $25 and $30 increments. While mom was resistant to help, she was surprised to learn how much she was giving away every month and had not realized how quickly those small amounts accumulated. She now holds the bills and we work together once a week to pay bills and balance the checkbook.

If you have concerns over these issues, bring in a daily money manager can help. Not only can having a third-party mitigate any sibling/family concerns, but it also offers five other benefits:

  1. You can be the daughter/son. I realized that I was spending hours every week dealing with bills, medical details, and following up on a host of random items that I would have rather not been doing. I would have preferred to be able to just hang out with mom.
  2. You can empower your loved ones longer. Taking out the personal family history can help in finding simple solutions to manageing the money. You can just suggest they try it for a month and see if it helps to have a second set of eyes if you are noticing bills going un-paid or being over-paid. As tax season approaches, it might be a good time to try out some extra help.
  3. You have info you need if a community is considered. If you consider moving a loved one into a life care or retirement community, they will require a summary of personal assets. How quickly would you be able to pull that information together, and might it make mom or dad anxious if you were going through their papers?
  4. Real numbers to compare costs. Most people assume a retirement or assisted living community is instantly more expensive. In several cases, I have found it was less costly than keeping a loved in their home and bringing all of the care and services to them. Find out how and when you might consider a community option.
  5. Fraud and scam avoidance. One of the things a daily money manager will do is reconcile the checking account and monitor the credit card for extraneous charges. For one client, we found that the bank had deducted $1,000 more than the actual checks value. While the adult child was monitoring the account from across the country, they couldn’t know the actual amount of the invoice to know that $1,000 too much was debited from dad’s account.

After serving in this role for mom and dad for five years, I realized that I would exchange some of the money I inherited at mom’s death for free time and mother-daughter time had I known what I now know. Recognized. 

If you want to find a daily money manager in your area, check out American Association of Daily Money Managers (AADMM).

 

 

 

My Journey As a Caregiver … in 3 Parts

KaywParents2013I was asked to share my caregiving journey on Healthline. It turned into a three-part series, and might have some information that you find beneficial.

1) The Fight to Become My Parents’ Caregiver

2) What It Means to Be a Caregiver

3) The Painful Choices End-of-Life Brings for the Caregiver

I’m happy to be on the other side of the journey, and can now treasure all the skills I learned, and the moments I shared with mom and dad. Traveled.

3, 2, 1, … Enjoy Your Loved Ones When You Can

momxmas2014CHRISTMAS 2013: Just three years ago, mom was opening up a basket of breakfast treats. I remember feeling a bit lost about how to manage through the holidays. It was only a few months after Dad died. With no short-term memory, Mom, with Vascular Dementia, was having a hard time remembering, absorbing, and even grieving her partner of 60+ years. I wanted her to have a nice Christmas and worked to find a cute little Christmas tree (shown behind her) in hopes she wouldn’t feel so alone in this world.

I remember at this time working with the staff in her Assisted Living community to help her manage. She was calling me repeatedly asking about Dad. She was also getting into physical disagreements with other residents and the community was having a hard time helping mom through this period. This was about the time I started to recognize that the community she was in really wasn’t the right fit for her needs. Mom needed a memory care community — not Assisted Living which addresses physical healthcare needs. She was always on the go and craved activities with meaning and purpose.

Thankfully, my sister came and spent several days with her and I had a nice reprieve from caregiving over the holidays.

kayandkittyxmas2014Christmas 2014:  I had found mom a new community, but one week before the move date, she had a terrible reaction to a pain medication that resulted in her being bed-bound for nearly a month. After being in bed for so long, she was weak and didn’t trust her own two feet. It was several months before mom was back on her feet and moving around. On this Christmas she was still using a wheelchair to get around.

I went to visit her on Christmas Day and after opening up presents and eating a little, she asks to lie back down in bed. I arrived with my ugly Christmas sweater in hopes of bringing some silly humor to the holiday. She was in good spirits and we had a nice afternoon together. Before I left, she thanked me for “making her feel human again.”

Christmas 2015: Ten days before Christmas I was in the Emergency Room with mom who was diagnosed with a broken hip. She had a mini-stroke somewhere in the midst of all the commotion. We learn she is too weak for surgery. Mom no longer recognizes me and is moved into the care of hospice. I visit mom daily and spent most days crying as she sleeps. On Christmas Day, her breathing is a little more jagged, and by early evening I get the call that mom died. As bitter as that moment felt, I also recognize that we just received a blessing. Mom no longer has to live with dementia and can now rest with Dad.

As I approach my first Christmas without having to balance life as a caregiver, or worry about how mom will spend her holiday, I recognize how quickly the journey can end. This year I will focus on the wonderful holidays I did get to spend with my parents. Reflected.

Three Reasons to Hire An Aging Life Care Manager

logoI was the primary adult family caregiver for my parents for five years. My journey ended last Christmas when my mom passed away. I know I will be moving through a grieving process for many years to come, but was happy that her life with dementia ended. It’s a nasty disease that steals away our loved ones bit-by-bit.

I learn by doing and used this blog to chronicle many of my lessons in hopes that it may help others. One of the valuable resources you should be able to find in your community is a Life Care Manager (formerly referred to as a Geriatric Care Manager). They are usually nurses or social workers by training and have layers of additional education and practical experience required to earn this designation. Aging Life Care™ is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges. To find one in your area, you can visit the Aging Life Care Association.

Looking back, I could have called them in to help more and should have. There wee blocks of time when every visit to see mom was filled with medical follow-ups. I would have preferred to just visit mom and be her daughter than try to run down a host of issues from getting her toe-nails trimmed to a concerns about some intermittent dizziness she was experiencing.

The three times I recommend  you consider hiring an Aging Life Care Manager include:

  1. When you are looking for a community. My parent’s had bought into a Continuing Care Retirement Community (CCRC) but there was a point when Assisted Living wasn’t the right fit for my very mobile mom with dementia, and Memory Care  only cared for individuals in the final stages. I hired a local firm to help me whittle down the choices and understand how to measure each community.
  2. When your loved one ends up in the hospital. There were a few visits to the ER for mom in the last year of her life. I called in help when mom broke her hip and to operate, the doctor was demanding I lift the DNR. It was complicated, and the Aging Life Care Manager helped me navigate my choices and fulfill my mother’s wishes.
  3. When you just want to be the daughter, son, or spouse. As you have already learned, there is so much you don’t know about a medical condition they may have or the way nurses, doctors, and community health services work, that I recommend bringing them in to just manage the medical needs.

If you are in the DC-metro area, I am happy to provide a referral to some wonderful Aging Life Care managers. Recommended.

VR Allowing Those with Dementia to Escape It’s Grip … If even only temporarily.

Recently friends shared two stories about the use of Virtual Reality (VR) for those diagnosed with dementia. The first video will bring a smile to everyone’s face (sorry about the 5 second ad intro), especially for those of us who cared fovrdementiar or are caring from someone with dementia. There were days when I could see the sadness on my mom’s face. When she started losing the ability to freely walk around safely, she lost one of her favorite coping mechanisms. It would have been fun to see if and what mom might like with this technology that she could have done safely from a comfortable chair.

The Washington Post also shared the story of a doctor using VR with her patients with very positive results. You have to visit the story to watch the video, but it’s interesting to learn how it’s helping some individuals that are exhibiting combative behavoir become more peaceful.

Maybe for the holidays you can try out Google Cardboard to see if someone in your life might find a little escape. If it works you could then invest in some of the more robust solutions that will work with iPhone and Samsung for sure. Intrigued.