Category: Managing Parent with Dementia

Making Good Decisions When Managing Someone Else’s Money

Many of us who are caregivers, are also managing finances and bill payments. I was the child who lived the closest to Mommanagingsomeoneelsesmoney and Dad when their health started to fail, and although my siblings wanted to help, they were separated by too many miles to realistically play an active role in paying our parents’ bills, acting as their medical advocates or managing their household. Those responsibilities naturally fell to me, and the amount of information I needed to manage quickly became overwhelming when it was added to all that I was already doing for my family.

Desperation is the mother of invention, and I decided to create an organizational binder that would help me collect and catalog my parents’ information. I created a one-stop-shop reference resource that helped me save time finding information. Perhaps most important, it allowed me to easily hand over all of our parents’ information—in the form of one, easily transportable book—when a sibling came to town to provide some much-needed caregiving relief. The system launched MemoryBanc.

In addition to managing a lot of new information, I ran into several unexpected roadblocks along the way: During my parents estate planning process, I was given and held their Durable Power of Attorney (DPOA). However,  despite the validity of the DPOA,  it took many phone calls and in some cases several months for the DPOA to be acknowledged and processed.  When some financial services firms refused to accept it, my father and I set up online access to the accounts so I could help them by directly acting on my parents behalf online.

In talking with friends about my experiences, I also realized that planning for future, life-changing events is something all of us seem to recognize as being important, but it’s one of the first things we put on the back burner. There are a million excuses, and I’ve lived many of them. But we need to change our attitude that doing it “later” is okay:  According to the 2011 Disability Insurance Statistics Bank: JHA Disability Fact Book, “43 percent of all people age 40 will have a long-term disability event prior to age 65.”

For these reasons, I strongly urge every adult to work with a lawyer to create a Durable Power of Attorney. It should only cost a few hundred dollars.

If you are named as the fiduciary in a DPOA, you should download the free publication called “Managing Someone Else’s Money“. It includes great recommendations as well as good information on steps to take if your run into a roadblock using a valid DPOA. Recommended.  

 

Is my Mom in the right place?

retirementcommMy siblings and I have had a love/hate relationship with my parents retirement community.  I know that our journey would have been infinitely more difficult had our parents not made this choice. The fact that the community stepped in and forced them to move into Assisted Living saved us from having to petition the court for conservator/guardianship.

We’ve had a rocky road when it comes to our expectations of and the delivery of services. I have too many posts dedicated to this topic to detail, but currently, we are trying to determine if Assisted Living is the right place for my Mom who has dementia.

My Mom has been in Assisted Living for more than a year, and for quite some time, she was not very nice to the staff or even the other residents. My Dad helped manage this when he was alive, but after he died, it got even more difficult and we were told we had to bring in additional support and adjust medications or they would begin a 30-day discharge process. I’m simplifying the story here admittedly – there is a lot more that happened.

Assisted Living is not geared specifically toward someone with dementia. We started to notice that many of the staffers really don’t like my Mom and witnessed some situations that were disconcerting. We assumed the staff would be able to understand and accept her behavior and were trained to manage someone with dementia. However, even we recognize that sometimes things my Mom did felt very personal.

We have hired additional personal assistants daily from 1 to 9 PM for more than 3 months. My Mom has started to ask for a schedule and has episodes where she doesn’t recognize her apartment.

When we were told that my Mom might be discharged in 30-days, we started to look for other options. Because of my business, MemoryBanc, I meet many people in the senior community. I met two women a year ago that started a business to help families find the right living community. One of them has worked in management for retirement communities, the other is a registered nurse – both were caregivers to their parents and decided there was an unmet need to assist families in the search process and they launched Caring Considerations.  I hired them to help me find the right place for Mom – there are dozens in the metro-DC area. I also wanted some help to know what I should be looking for.  They helped me find several wonderful options and have helped me understand the disease process as well as what to look for in a community. .

I realized after the first tour, that a facility geared toward someone with dementia has many resources to better serve my Mom’s needs. Discovered.

This will be an ongoing topic as we move through this process …. more to come. 

When will I stop believing what my demented Mom tells me?

carlyhostMy sister came to visit to help chase down my Mom’s medical issues giving me a break and allowing me to focus on my daughter’s foot surgery. The true sandwich generation dilemma — both Mom and daughter need medical attention and care right now.

My daughter is only 11, but had chronic foot pain due to an extra (accessory) bone that outlasted all the non-surgical options we pursued. She stopped dancing and gutted out soccer as the goalie to help her team who lost two players due to broken bones. Surgery was a few days ago. Thankfully, it went well and I just finished spending the last two days as foot-maid (pun fully intended).

My sister just returned home yesterday and my Mom just called telling me her “cupboard is bare.” Not only does logic tell me she still has plenty of crackers and chips, she is in a community that serves every meal and that also has a “store” where she can pick up bread and peanut butter and jelly if she really is out of supplies.

However, I immediately feel guilty and assume my Mom is reporting facts. I can’t stop the urge to believe my Mom. I’m not sure if I ever want to lose that ability because it will mean I know my Mom is lost to me for good. Reflected.

 

Dementia and the Importance of Medical Advocacy

sheildMy Mom lives in an Assisted Living facility. She has moderate multi-infarct dementia. Last week I noticed a pretty major change in my Mom and requested that they test for a UTI.  They set her up with a visit with the doctor. They report they tested her and would start antibiotics giving me the impression she tested positive. There was no change in her behavior two-days into the course of medicine and by the end of the day a nurse called me to say the culture came back negative and they were stopping the antibiotics.

While I was there, I found that my Mom’s feet were very swollen. My Mom was complaining that her little toe hurt and would not stop pacing. When we get off her shoe, I find that both feet and calves are twice their normal size. I had the on-duty nurse visit and my Mom is not really complaining about her feet hurting – she is almost defensive that we all think her legs would hurt. Apparently, the personal aide we hired reported this to the nurses a few days earlier (before the antibiotics).

However, no one told me or seems to be following up on her swollen feet and legs. I request that a doctor visit my Mom and they initially decide to do a test to see if she has deep vein thrombosis. They call to tell me the test came back negative.After two visits from the doctor, it seems they are done investigating.

I was complaining about the lack of follow-up care for my Mom to my mother-in-law. As we were talking I tell her that I noticed my Mom was 15 pounds heavier on the scale, but doesn’t look like she’s gained any weight. My mother-in-law suggests I tell the medical staff since it could lead them to something else going on with my Mom. Maybe she’s retaining fluid which is causing the foot and leg swelling? When I call back to Assisted Living and ask if they have been tracking my Mom’s weight, she confirms that indeed, my Mom has gained almost 15 pounds in two months and tells me she will have the doctor follow-up. Did the doctor not notice this on his first or second visit? Arrgg!

I’m getting more and more signals that Assisted Living is the WRONG place to be for any patient with dementia. The programming is not geared toward her needs and the fact that she is presented with a menu at meal time makes me realize why she might not want to eat in the dining hall. My Mom gets overwhelmed when presented with choices.

Recent research confirms that a person with dementia poses additionally challenges to the medical community since they can’t report their history or pain reliably. It turns out, the un-diagnosed issue could be leading to the anxiety and other troubling behaviors.

I understand it’s difficult to help someone who can’t help themselves, but I would think the medical staff would be more prepared to address this. Could my Mom’s “unbecoming behavior” stem from an un-diagnosed medical issue? I’m more certain than ever that someone needs to be the voice for those individuals with dementia who can’t advocate for their own needs and that our current medical system seems too busy or overwhelmed to serve. Angered. 

 

Related medical research on this topic:

Pain, Anxiety, and Dementia: A Catastrophic Outcome

Dementia + UTI = Delirium … or Something Else?

hoppeduptortoiseAfter visiting my Mom and noticing a difference in her demeanor and confusion, I contact the nursing station to ask that they check my Mom for a Urinary Tract Infection (UTI). Often, it can present as confusion or delirium. They call me back confirming they have taken a culture and are starting her on a 7-day course of antibiotics. When I visit my Mom a few days later, she seems the same but she is walking in smaller steps today.

When we return to her apartment after lunch, she turns to me and asks if it’s her apartment. I sit down to chat like we normally do, but she won’t sit for more than a few moments. She tells me she is going to take a quick walk down the hallway. She leaves me sitting in her living room. She does this twice more. I sit quietly and just observe my Mom today. She moves slow, but has an edge to her — like a tortoise that drank a pot of coffee. She then pulls off her shoe and complains about her foot.

I suggest we find the corn pads (yes, the glamorous life of a care giver) assuming it’s just her toe bothering her. I ask her to sit on the bed while I find the pads. She pulls off her shoe and her foot is very swollen. I ask her to show me her other foot and it’s also very swollen. I ask the nurse to visit and my mom’s typically very thin calves and ankles are hot to the touch. She says they don’t hurt but tells the nurse to stop poking her foot. I recall that my mom couldn’t really feel the neurologist touching her feet a few years ago and they told me it’s quite common in older people with vitamin B deficiencies.

The put her on the doctors schedule for the day and don’t feel like an ER room visit is necessary. When they call, they tell me that the doctor is taking her off antibiotics, she apparently didn’t have a UTI. They just assumed she did and were going to have her take the medication until the culture came back — it came back today and was negative. Now they are waiting for ultrasound order and will let me know what they find.

I was hoping the sudden decline was in fact because of a UTI. After my post, a fellow blogger and book author shared a link — it is not out of the ordinary to have such a marked decline. Now we have swollen feet. The fact that in the course of a few days, I’ve had to call the nursing station and request help for my mom demands that I recognize we may be at the top of a steep decline. Buckled In. 

Recognizing the emotional memories that last

melvinanddorisA CBS News story As man’s mind fades, heart comes to the rescue that was shared with me illustrates one of the wild cards in caring for some with dementia or Alzheimer’s. It took me a while to recognize how emotions layered in surprising memories as well as frustrating encounters along my care giving journey.

It’s wonderful story about Melvin who leaves home on foot to get flowers for his wife for Mother’s Day. The local police find him and he is adamant about bringing home flowers for his wife — but can’t even tell the police where he lives to return home. The police help him get the flowers and they return Melvin home to his wife Doris.

As the adult child caregiver, my Dad once told me I don’t understand why you are so upset. He just felt like he was exercising his right to live his life and didn’t know that their retirement community would call me when they left since they were concerned for their safety. I recognized that he would never understand, and had to adapt my own emotions to manage through the events as they happened.

With my parents, the comfort and fun we have shared have benefited me more than having to manage through parents being “parented” by their children. During a rough patch, after I got my emotions in check, I was able to spend time with my parents and find an activity we could do together that restored some of the parent-child interactions and gave them an activity they enjoyed. In one particular instance, my Mom called me twice to tell me they really had a nice time today.

The emotional memories that last may lurk in the background and I hope you will find they surprise you in a positive way along your journey. Reminded. 

Finding $2,500 of my Dad’s in Kansas

treasurechestStepping in to assist a parent is an overwhelming task. Trying to organize my parents medical, financial, personal and household papers was a job requirement. I needed an easy way to collect and document the information so I could easily find it as well as hand it off to a sibling who came to town to give me a break from caregiving. The experience fueled me to launch MemoryBanc

Many people are unaware that $58 billion is sitting in state and federal treasuries — it’s money that got lost in the shuffle of a move, crisis and even death. As a caregiver, you should know about the MissingMoney.org website. You can do one search and see if any of your loved ones money ended up in a state treasury. Every year, I do a quick search to see if anything slipped through the cracks. Last year, we found several accounts – one was in the name of my Grandfather, and the second was in the name of my Dad.

My sister started digging and learned that we could just go right to the state where the money was lost to claim our money. If you use the service on MissingMoney, they will take a cut or “finder’s fee” of your money. See additional information on this topic below. 

We find that my Granddad’s money is less than $100 and requesting the forms we’d need to claim would cost more than we would recoup, so we leave that money alone. However, when we learn that my Dad had money that was left in Kansas — and we have all the forms with the exception of the a proof of residency for their home in 1968 — my sister finds out how to get the old title to prove his residency.

Within weeks, we get a check for $2,500. We moved from Kansas in 1969 and grew up hearing stories about how my parents had to borrow the down payment to buy our home. The idea that there were assets that got left in Kansas more than 40 years ago that ended up being worth $2,500 is a little mind-blowing.

Given the amount of accounts you accumulate today, it’s easy to understand how easy it might be to forget about a stock certificate, utility deposit, or even a small retirement account. Enriched. 

HOW TO SEARCH FOR MISSING MONEY

To do a quick search to see if you are entitled to missing funds, visit MissingMoney.org. Enter your name and state and you will get back a list of possible matches. You can use their services to collect your money, or:

1) Go to the state web site where you believe you may have missing money

2) Search the state web site for “missing” or “unclaimed money”

3) Make a direct claim following the web site instructions.

icon-warning
MissingMoney does not include all states and not all the information — in particular some very old records. To learn more about this topic, check out Mary Pitman who wrote a book on the topic https://www.facebook.com/TheMissingMoneyLady

Mom and the PJ Puzzler

fuzzyFor several months, I’ve been trying to get a second pair of PJs for my Mom. It’s been quite a challenge. The first roadblock was my Mom’s belief that she had more than one pair. I would ask her to show me and she couldn’t find them, so she would agree she needed a pair. By the time we got to the store, she adamantly insisted she had more than one pair.  There is no winning that argument.

My second attempt to accomplish this mission was to get my Mom to write “Pajamas” on her shopping list before we left her apartment. This is no short matter — first you will have to sit through the search for the second pair, then the acknowledgement that a second pair would be useful. I did this several times and for a while she insisted that she only needed one pair. Her lone pair is fuzzy winter pajama’s and as Spring arrived, she finally decided she needed some lighter-weight pajamas. However, we spent several trips where she was unable to find a pair that she liked. If they were the style she liked, the color was wrong. I kept trying. In the hopes of saving time on the search and list making — I kept a copy. However, my Mom would not accept the list “That’s old – of course I have more than one pair of PJs” and we would just start over each time.

I was very pleased with myself when she finally purchased a pair two months ago. When they didn’t show up in the laundry, I learned from the personal assistant that my Mom told her they were not her PJs. I was never able to find them.I had suggested she put her name inside because I knew this might be a problem. However, she had refused and wryly asked “I’m not going to camp am I?”

The new medications are helping and choices don’t seem so difficult these days. My Mom recently purchased a pair of PJs three weeks ago. I was curious if she was wearing them — or even had them. Today when I collected the laundry, she asked if I want the pajama’s. She thinks they are “too heavy.”

In reality, it would be ideal for her to have at two of the same PJs. Sometimes she will go two weeks before she will allow me to launder her clothes. If she has an accident, she’s still trying to hand-wash, but given her inability to remember, I would feel better if we could just provide her with an endless pile of clean PJs to pull from each night.

I’m going to just order a pair and see if I can find ones that she will accept and use. I have a feeling that I’m going to have a whole new pajama wardrobe of my own before summer ends. Perplexed.

 

The Ultimate Mother’s Day Gift

redpresentI recently finished teaching a course for adults over 50 to help them gather their important papers and document their personal wishes. An important statistic I shared with them came from The National Clearinghouse for Long-Term Care Information, which reports that by the age of 65, 70 percent of Americans will need long-term care—and the average term is a little more than three years!

Several of my students were widows with grown children, and during the class, they approached me to ask about services that could help them manage if they needed support. They didn’t want to burden their children, and the isolation felt behind that simple question hurt. I know my Mom felt the same way, yet I believe most children would prefer to have this discussion with their parent rather than struggle through the issues my family faced (visit the first post on this blog if you are unfamiliar with our challenges in caring for two parents with dementia). I can imagine the hurt I would have felt had my Mom hired someone and not discussed her choice with me or one of my siblings.

While we have just celebrated Mother’s Day, I hope those of you in great health with vibrate families will consider celebrating your mom with the ultimate gift — your time. When you need this information is always a bad time to start the discussion. Every day is a good opportunity to let your mom or dad know that you are there and would like to help SHOULD they ever need it.

Good times to raise your offer include:

  • When they ask you to be their executor or share their estate planning documents with you.  Let them know you are honored to be asked and request that they schedule some time to sit with you to share the information you would need to fulfill this role.
  • When something has happened to a family friend. These are the best times to warmly ask how your parent might want you to help if your family was faced with a similar situation.
  • At family gatherings when you are all sitting around a table. You can ask open questions like “Have you noticed any changes or had to give up things you love since you have gotten older?” Once you find an opening to the discussion in a positive light, you should be able to build on that discussion.
  • If a parent has cognitive impairment, there may never be a good time. It could be that they don’t remember much of the information and are afraid to share it with you. In this case, you will have to work on finding mailings and checking files to collect the information. A cell phone with a camera can be an easy way to gather information without mom or dad feeling like you are sneaking around and taking their papers.
  • In general, you will need to be patient, take it slow and look for windows of opportunity to raise these issues.

When you are ready to sit down with Mom or Dad to gather this information, please use this list to identify the information you need. If you are interested in using the MemoryBanc Register which prompts you through the collection of all the needed information, any order placed in the month of May will receive a 20 percent discount when you add in the coupon code of “Mother”. Gifted. 

 

The Truth Lies Between What I’m Told and What I See

eyeglassesOne of the most frustrating factors of being a family care giver to someone with dementia who lives in a community is the amount of information you just don’t have. You want so badly to ask your family member how they are doing and what’s been going on, but they don’t remember. It took me at least a full year before I stopped asking and wanting to believe my Mom’s reports on her day. It finally sunk in that my Mom probably wasn’t eating breakfast after she was moved into Assisted Living. Some days she still tries to tell me she cooked herself something on the stove. For those of you familiar with Assisted Living, they typically don’t include cooking appliances.

Just last month I shared that I drove to my Mom’s apartment at 10:30 PM one night because she had me convinced something happened and she was being moved out of her apartment. Such a rookie mistake … that happened to someone who’s been dealing with this for several years now.  I still laugh at myself over that one.

The personal assistants that have been added share small tidbits with me when I stop by and ask, but I know most of their days are spent sitting in the hallway waiting for my Mom to emerge from the apartment. I would love to have a GPS device on my Mom to see what her day looks like and where she goes. I know she’s sleeping a lot more and when there are events with music, the personal assistants say they can usually get my Mom to join them.

We are worried that one day we are going to get a notice telling us that we have to find a new home for my Mom. I was called in to discuss my mom’s “unbecoming behavior” and told if we can’t get things working better, we will need to look for a new home that can better care for my Mom given her mobility and dementia. So far we have worked with the community to make the following changes:

  1. Adjust the medication. We are told she is now getting the highest doses they can administer to a resident in Assisted Living. It can take several weeks to see if the medication helps manage my Mom’s behavior. I appreciate how the community phrases the concerns as a “dignity issue.” My Mom seems to be mellowing and I haven’t gotten any reports in over a month about any “unbecoming behavior”.
  2. Hire personal assistants. As I have shared, my Mom really doesn’t like and resists the idea that she would need help. However, we are paying for personal assistants from 1 – 9 PM daily. We had to make changes to the individuals assigned and I’m glad I’m able to stop by, meet them and speak with them. Right now it’s the closest I can get to having some insight into my Mom’s days.

Right now, things seems to be improving. However, if they start to digress, we may have to look into checking my Mom into a psychiatric hospital. While not something that happens in every case, many have had to seek this solution to find better medications manage through this stage of the disease. I do believe that if we go that route, the only option for my Mom will be to return and be moved into the secure memory unit. There is some issue with the doses of certain medications and Assisted Living,

We are doing our best. Dementia is just a cruel disease.Endured. 

Better Conversations with a Parent who has Dementia / Alzheimer’s

conversationdemWhen people first meet me, they would describe me somewhere between quiet and aloof. I’m not sure if this is just part of my personality profile or became part of me because we moved around so much when I was younger that I learned my best friends developed with time. I have found in the work setting, listening to the discussion and saving up my voice until the end served me well.I share this because this blog and the ease at with which I share what’s happening in my life is very different from the woman you would meet in person.

However, I’m realizing that in general, I am very talkative and approachable on the subject of caring for a parent with dementia. More people know this about me than even the names of my husband and children. It is never I topic I start but I’ve found I’ve been in so many casual conversations that some aspect of caregiving or dementia is mentioned that I quickly find a common bond that seems to be broader than personal interest, husband or child topics.

Recently, I found this bond with a woman at Church. Her experience in caring for her mother-in-law sparked a fire and she recently jumped career tracks and is now going to be working in a local community to improve their services for their residents.The experience of caring for a parent is changing many of us in positive ways.

She sent me this article and I thought it included some great general tips on how to be a better communicator. I included the list as well as added some of the things I have learned in the past year. They include:

#1: Make it a priority to engage in “time-limit-free” conversations.  I found arriving with an agenda can turn your visit sideways. It’s more important to visit in the moment. Your calm translates to their calm, your angst translates to their angst.

#2: Use shorter sentences, and don’t ask more than one question at a time. Avoid asking questions about what they just ate or did. Since short-term memory goes first, this can create some discomfort when they are unable to recall the information. My mom would come up with logical answers, but had no relationship to factual information. 

#3: Talking is overrated. I like to bring pictures and share my memory behind the photograph. My parents were never huggers or hand-holders, but as often as I can I work in a hug, a kiss or a hand-hold. One of the most memorable moments I spent with my Dad was holding his hand last September, two weeks before he died.

#4: Try alternative means of communicating. I write my Mom notes as well as spend time just sitting with her around a puzzle. Doing puzzles are a great way to connect over a shared purpose and exchange smiles and winks when we find the right piece.

#5: Make as many connections as possible, both with your words and your body language. In general, I will avoid looking at my phone or email and just will sit quietly if my Mom and I are not doing something together. My goal is to give her my undivided attention when I visit.

#6: Be calm, and remember the past. I learned early on that my Mom would mimic my emotions. I work to redirect the conversation if we are moving into a direction that gets her angry. Quickly shake it off and consider bringing up a fun memory from your past to share.

#7: Don’t take it personally. So easy to understand, but so difficult to do.

This one poem always gives me some perspective when I’m overwhelmed, frustrated, angry and sad. It’s a reminder to be kinder and gentler.

I hope some of these tips help you on your journey. Experienced.

Some additional stories related to this topic include:

Manage a Visit with Someone Who Has Dementia
I provided a list of “Do’s” and “Don’ts” to help those just getting exposed to someone with moderate dementia. Some of these take time. Trying to connect and being present is more important than executing these perfectly. 

Three Go-to Tactics for Dementia Caregivers
These have served me well over the years.