Category: My Dementia Caregiver Story

Just because I’m having trouble with my short-term memory doesn’t make it OK to exclude me from discussions about me

I’m writing this post recognizing that I’m really kinda angry. I know I can get a little “righteous” but I’m seeing families work around their loved ones instead of with them.

I know often, it’s easier to to just do things for someone. Please imagine how you would feel if you suddenly found yourself on the outside when choices about your health and finances were made for you?

Maybe you had a discussion about the topic, but for someone with short-term memory loss they won’t remember that, so are there other ways to help include and remind them of the discussion and decisions made? A notebook, email or texts?

I’m working with a new client and she told me she went to the bank to get a copy of her last statement and her daughter and POA had changed her statements to paperless. She knows she can’t recall the amount of money in the bank and is having trouble managing the finances, but I could only imagine how awful it would make me feel if my loved ones were doing this around me. To be fair, they may have had the discussion and she didn’t remember. However, she was expressing how frustrating it was to be left out. She can still make good decisions and had managed to care for all these things for more than five decades. She wants her daughter to help her do it, not take it away from her and manage it for her. Short-term memory loss on it’s own doesn’t mean you can’t make good decisions or understand their consequences.

Don’t discount your loved ones ability. It is their life and if you love and respect them, assisting them when they need help navigating difficult choices is how you can show it.

I know I didn’t do this well when I started to help my parents. However, now that I have worked with so many families and individuals with varying stages of mild cognitive impairment and diagnosed dementia’s, I see a how devastating it can be to suddenly lose so much for the individual with a memory issue.

For those individuals just starting out, I always talk about us working in tandem. I will help with them organize and schedule, and they will review the bills and sign the checks. Usually, by the end of our first meeting they are breathing a sigh of relief. They see they are still involved and have control, and now have help to manage the components of paying their bills that was challenging.

You can apply this to the scheduling of medical appointments and follow ups as well.

Walk alongside, support and give your loved ones the opportunity to be involved. You might be surprised how much better things can progress when you do it together instead of “for them”. Advocated.

What I Wish I Knew When Dementia was Diagnosed: Find Joy in the Journey (#3)

journeyjoyThe last of the three things I wish I knew when my parents were simultaneously diagnosed with dementia was how important it was to find joy in the journey for everyone.

The care aspect for me, unfortunately, eclipsed my recognition that my time would have been better spent enjoying my parents. I spent a lot of time managing medical appointments and follow-ups, and I wish I would have instead used it to take Dad to a movie, or play cards with my Mom.

My parents thankfully had the means to pay for me to bring in an Aging Life Care Manager, but at the time I didn’t even know they existed. What I do know is that once I finally learned and recognized how they could help, I had already spent weeks of personal time trying to manage medical issues for my parents who could no longer be their own advocates.

After bringing in an Aging Life Care Manager, I saw how they could find a solution or resolve an issue that was taking me hours to troubleshoot. They are typically social workers and Nurses who are trained and certified experts in aging well.  You can search for one in your area here. 

I still remember the ache of missing my parents when they were sitting in front of me. The dementia had changed their personalities and behavior but often glimpses of the parent I knew would shine through.

There were hilarious and devastating moments.  I learned how to laugh and bring my parents in on the humor and worked very hard to shield them from the moments when my grief would bring me to tears.

You don’t know what you don’t know (and I certainly didn’t at the time). I hope my three wishes can help better serve you and your loved ones after a diagnosis of dementia. Refected.

What I Wish I Knew When Dementia Was Diagnosed: The role of Palliative & Hospice Care (#2)

Palliative-vs-HospiceMy parents and in particular my Mom often shared that QUALITY of life was her goal, not QUANTITY. After a diagnosis of dementia which can result in death, I had an ongoing struggle with what was important to do to honor my mother’s wishes.

The lines between “palliative care” and “hospice care” are confusing but they both focus on providing comfort. Palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. These lines are kinda blurry with dementia since there really is no “treatment” or “cure” (YET). 

I wanted to manage and strive for quality of life, keep Mom comfortable, but be mindful that we were not providing things that could extend her life.

When Mom started to refuse to take the anti-anxiety medication the care community was delivering, I realized that it was being delivered with a host of vitamins. Was it important to give my 80-year-old mother a multi-vitamin?

My Mom didn’t really like taking pills, so delivering 4, of which one was really important to minimize her stress became the only one I asked them to deliver. I followed up with the doctor who agreed that the other pills were not really necessary and her medication regimen was updated.

When Ensure was recommended as an addition to her meals, I asked more questions to make sure it wasn’t been forced or delivered as a meal replacement over providing her with food options she would still eat.

Apparently dementia and age can impact your taste and there seemed to be a strong preference for salty and sweet foods. She was never much of a salad or veggie person and it seemed odd to start worrying about nutrition when she often couldn’t remember names or faces. I didn’t want her to be hungry, but I also wanted to let her have some control even through her diagnosis over day-to-day choices.

My toughest challenge was when her hip broke and the doctor insisted we lift the DNR (Do Not Resuscitate) order for her so they could repair her broken joint. At 83 and very frail, there was no way she would have survived the surgery and they agreed to move her into Hospice Care. Over the previous year, she had been in and out of Hospice Care as she continued to weaken. However, with the addition of the broken hip, we now had the option to keep her comfortable with morphine that would eventually end her life.

These were difficult and guilt-inducing decisions, but I always worked to meet what I believed to be my mother’s wishes. Knowing these options may not just better serve the comfort, but also allow you to focus more on enjoying time with your loved one than managing medical matters.

Would the vitamins and Ensure prevented the eventual hip break? I will never really know but after caring for two parents now realize how important it is to let the will of the individual influence their daily choices, even after a diagnosis of dementia.

You will have a lot of options and choices to make over the course of your journey. Just know you will make the best decision you can with the information you have at the time you need to make choices for your loved one. Hospice can be a valuable option during your care journey. Reminded. 

 

What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1)

I was recently asked this question at a Caregiver Advisory Panel and there are 3 things I wish I had known when dementia was FINALLLLLYYYY diagnosed.  The reality is that many things can cause memory issues and it’s important to seek out a doctor to help determine if there is something that could easily resolve cognitive issues. There are many times when a medication conflict or a vitamin deficiency can be a root factor.

I had two parents who were simultaneously diagnosed with different types of dementia (Mom was Vascular/then Multi-Infarct; Dad was Alzheimer’s). While my Dad seemed to understand something was wrong, and a few times over the course of being his adult family caregiver he asked me about Alzheimer’s, my Mom patently denied having a stroke which led to her initial vascular dementia diagnosis.

anosognosia-1

I thought she was just being stubborn which made things pretty difficult for all of us. When I learned about anosognosia, a word of Greek origin that roughly translates to “without knowledge of disease,” things made a lot more sense to me. I had learned to adapt because my Mom would not, but then once I learned of this, I understood that she really COULD NOT adapt.  In general, the person is unaware of their condition and unable to accept it.

My Mom was not simply in denial or being stubborn, her brain could not process the fact that her thoughts didn’t reflect reality. I did recognize that she would often confabulate information. Sometimes it was hilarious and other times it was tragically sad.

Knowing this can provide some insight into how you can best help someone diagnosed with dementia. I hope it can help make your journey with your loved one a little easier. Reflected. 

There is a Statute of Limitations on IRS Refunds

timemoneyIt physically pains me to find someone, through oversight or because of overwhelming life events, failed to do what was needed to get the refund to which they were entitled to receive from the IRS.

I just learned this when a client was told by the IRS that the 2014 and 2015 returns she eventually filed were submitted too late to allow her to receive the nearly $12,000 she was entitled to receive. She thought her life partner had filed these when we started working together. Unfortunately, he never did file them or ask for an extension.

According to I.R.C. Section 6511(a) “Claim must be filed within 3 years from the time the return was filed or 2 years from the time the tax was paid, whichever of such periods expires the later, or if no return was filed by the taxpayer, within 2 years from the time the tax was paid.”  There are things like extension requests that help your timing. Check with an accountant to learn more about this if you might be in this boat.

At least half of the families I have worked with find out that taxes didn’t get filed. The early signs of dementia are subtle and the individual may believe they are doing all the right things. It usually takes a couple big financial mistakes before people realize their loved one is unable to really manage their financial affairs.

If you are not sure if the taxes have been addressed, you can request transcripts from the IRS here.

Caring for a loved one can be overwhelming. If you need some help looking into this and no one is able to help, you could find a local Daily Money Manager who can help out. If you have a lot of medical expenses, the few hundred dollars it might take to hire them to help will more than be repaid when you receive your refund. If you can’t find one in your area, let me know. There are several members of my team that can assist with this remotely.  Recommended. 

 

 

Document your Medical History and Extended Family Histories – Healthy Aging Habit 29

familyhealthhistory

Have you ever been asked to recite your medical history and been a little fuzzy on a few of the dates?  The longer I live, I feel like the harder it is getting to know exactly when I had specific surgeries. Thankfully I have kids so it has been easier to track based on their birth since two of them coincided with their births. However, I know this is going to get harder the longer I live.

I know when I had to help my parents, knowing the familiar history of their families was important. Thankfully, my cousins could help out when we were faced with Dad’s cancer.

In general, having this done in advance will benefit you. So often these questions are asked of us, and most often, we don’t really know of our extended families history.

As we move into the holidays you can find ways to learn more about your extended family. WebMD offers this family health checklist, but I sure hope you can figure out how to better ask these questions. I’ve always gone in a little soft to ask about their lives and their passions and in that, if there were a health issue, it usually gets mentioned and from there you can go a little deeper.

Just having this written down about yourself will help you and may assist a loved one. Seventy percent of us will need someone to be their health advocate — and I want to make sure my loved ones have what they need to help me. Prepared. 

Get an Annual Flu Shot and Consider the Recommended Vaccinations – Healthy Aging Habit #23

flu shot

As a caregiver, I started to think about how my health (or poor health) would impact my parents. I didn’t want to be the one to bring the flu to them, so made sure I got annual flu shots. I avoided the shots for years thinking that having a dead virus shot into my arm sounded kinda gross … it still does, but know I know the value of avoiding the flu for myself and others.

In my role as a Daily Money Manager, I research varied ways to save my clients money—from simple things like reviewing phone and cable plans to bigger issues like refinancing and downsizing options.

At a training workshop, I learned that the lack of vaccinations is estimated to cost the American people $15.3 billion. It never dawned on me how much money NOT getting a flu shot costs me either directly on medication and doctor visits, or indirectly through lost wages and discomfort.

In addition to the flu vaccine, three other vaccinations. Some are recommended for adults over 60, but for many it may be a good idea to get it early.

Ask your doctor about these vaccines for those you are caring for, but they might also benefit you and I hope you will discuss them with your doctor.

  • Shingles or herpes zoster vaccine — if you know anyone who has developed shingles, you know how debilitating it can be. The healthcare cost of treating shingles is estimated at $1 billion a year. There are more than one on the market now and they are hard to get. Get on a waitlist if they are out at either your doctors or a local drug store.
  • Tdap — while many of us with kids still in the household are familiar with this vaccination, only 16% of adults over 65 have gotten it. My son received the vaccination that includes vaccines for tetanus, diphtheria, and pertussis but did contract whooping cough. It was awful in a 13-year-old, but apparently, it’s even more devastating for adults. Next time you need a tetanus shot, ask if you can get Tdap instead.
  • Prevnar 13 and Pneumovax 23 for the prevention of pneumonia, which kills more annually than any of the others mentioned.

The annual flu shot is now a household habit and the I’ve already discussed the other vaccinations with my primary care physician. Completed.

Talk to your Children about your Healthy Aging Choices and Listen to What They Say – Habit #22

funnyquotesagingparent

As an adult child that lived through caregiving for two parents over 5 years, and as a parent of two children, I have been very open about how I believe families should function in terms of support and care.

My parents planned well thinking that they would never “be a burden” to their children. However, when they both ended up with dementia, a family member needed to be intimately involved in their care and well-being. The hard part for me was that my parents firmly believed they never needed any help and half of my caregiving battle was managing around their inability to see how they were failing.

As my children grow and one now has flown the coop, I plan to be open with them when it comes to discussions about our care and well-being. If and when they are managing their own careers and raising their own children, I will make sure to regularly check in to listen to them on how and if they could help. I want them to have their lives, but I do also hope that I can rely on them to at least have general oversight if my husband and I should we need it. There are options for us if they can’t help.

I know that I can hire specialists to help with the day to day needs. I don’t expect my kids to do it for me. But I also know that family knows best and would prefer if one or both of my children would be a POA or Trustee for us when they are ready to step into that role.

What I find most interesting is how many adults with children over 30 are reporting that their kids won’t listen to them when they try to share their plans or discuss their finances. Maybe for many it feels like a weaponized conversation about inheritance or their adult children just aren’t ready to have it.  What I do know is that you better have had this conversation with the people you are counting on to help you before the help is needed. Experienced.

Brush, Floss, and Visit the Dentist Regularly – Friday the 13th Healthy Habit

lifeisbetterwithteeth

If you don’t know, oral health has a link to your general health. You can get a deeper dive on the topic and the related health conditions from Mayo Clinic.

There are many reasons why brushing and flossing are healthy habits, but it’s also important to see your dentist regularly.  They may catch oral cancers early when they can be more easily treated. While my father had Alzheimer’s, a tumor at the base of his tongue is what ultimately took his life. I had tried many times to get him to the dentist before we knew about the tumor,  but he just refused. In reflection, I wonder if somehow he knew. He had always been a good dental patient before the diagnosis.

If you are caring for someone with cognitive issues, be kind to yourself if they just refuse. In some ways it maybe the one way they feel control over their lives.

As difficult as it was to see my Dad’s physical pain and suffering the last month of his life, I also feel he was blessed to get to take a celestial departure before he lost more of himself.

The habits we develop and maintain can carry us and help us maintain good health. I often have to remind myself of that when I’m waiting for my tooth brush timer to end. Brushed.

Make copies of everything in your Wallet: Healthy Habit 10

wallet

Should your wallet ever get lost or stolen, having copies of everything that was in it will minimize your stress. It will save you a lot of time when you need to call to cancel credit cards and follow up to request replacements of medical or insurance cards.

It will help if you make notes on the credit cards in your wallet that are set up for auto-payments for other services. A few things you should know about this:

  • Some credit card companies will ask that you pay for charges made on a lost card if you never called to report it missing. When they added the chip to our credit cards, they now have the ability to know if the credit card was physically used. If your card is not in your possession, but you did not report it missing, the credit card company fairly has the right to hold you liable for those charges.
  • Many larger vendors have dozen’s of 800 numbers linked to the specific credit card account. If you have a copy your card you have quick access to the direct number to report the card lost/stolen as well as the identifying information they may request from you about your card.

If you are incapacitated when your wallet is missing, this gives your loved ones an easy way to step in and help you.

Recently, I had a client whose wallet was stolen while he was in the hospital. Unfortunately, I had not made a copy of everything in his wallet and had to wait until he was well enough to talk through and figure out what he was carrying in his wallet.

It’s now one of the first things I do when I work with a new client now. Warned.

Break a Habit of Drinking Alcohol #6

drinkinganddementiaOne of my big fears after caring for my parents is that should I lose my short-term memory, I will also lose the ability to know that I have had more than one, or even two drinks.

I have yet to see alcohol on any healthy diet without an asterisk next to it. I’m always intrigued to read interviews with octogenarians (and older) to learn what they chalk up to their healthy aging habits. I swear that a snifter of whiskey or brandy has been in the largest majority of those I have read.

What I do know is that the habit of “quiet hour” honed over 5 decades of marriage became a problem for my parents when they lost their short-term memory. Instead of stopping at one or two drinks, they started to drink more. It was one of the most obvious signs to their adult children that something was different with our parents.

During this period we learned that there is a form of dementia that is a result of alcohol abuse. Drinking and drug use is proven to kill brain cells faster than aging alone. You can learn more about these impacts on this page at the American Addiction Center.

At first we thought my Dad’s quietness and forgetfulness were because of the increased drinking. We later learned that he had Alzheimer’s. Had there been no habit of drinking, we may have gotten to an answer sooner.

During this time, I was able to encourage my parents to purchase Umbrella insurance. I was terrified that their actions could hurt someone and they could lose all of their savings.

If you have a study that shows that alcohol does lead to healthy aging … please share! My belief is that like many things, moderation is the key. My goal is to age without a habit of drinking alcohol. Aspired.