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Strokes and Dementia

strokeI recall the many visits to the neurologist with my mom after her stroke. We learned this was her second stroke. The doctor guessed the first one happened over a decade before but went un-reported or un-diagnosed. The second stroke began with dizziness and after watching my mom try to walk, my dad drove her right to the emergency room. The second stroke left no physical reminders, but there was a noticeable difference to my mom’s memory and how she processed information. They told me she had an ischemic stroke.

Over the six-months of visits, we really focused on understanding the cause and how to prevent a future stroke. The doctor never explained how the stroke might impact her ability to drive, manage her finances, or retain information. She also never mentioned that based on my mom’s behavior, that she probably had Vascular Dementia.

When I was talking with a client last week, he stopped me to ask why I used the term “vascular dementia” to describe his partner. She had a stroke and when I spoke with her, she had trouble getting out her words and he admitted that she had had trouble with her short-term memory. I’m not a doctor, but I shared that she seemed to present like my mom did after her stroke.

The interaction reminded me just how difficult it was to get my mom and dad diagnosed. The first neurologist for both of them never even used the term “mild cognitive impairment”, although to me and my siblings, we all recognized something was different in their behavior and thinking. Had we had an earlier diagnosis, maybe we could have developed a better plan of care to have them live with purpose and meaning for the rest of their lives.

I hope if your loved one has had a stroke, you might have more information to understand the impact and how it might shape the coming years. Every one is different, but I worry that the move to shorter medical appointments will make it even harder for the next wave of caregivers to come. Wondered.

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My Ten Big Dementia Don’ts

BestBlogs2017I 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 again be name one of the Best Blogs of the Year. 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. 

 

 

 

 

 

 

 

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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. 

 

 

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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?

 

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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. 

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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.

 

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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. 

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