I’m involved with many families who have a single adult parent with mild to moderate cognitive issues who wanted to stay at home. Now we are trying to manage care and minimize risk. What are you doing?
Tag: caring for parents with dementia
After the Alzheimer’s Diagnosis: A Simple Checklist
Kate Swaffer who was diagnosed with dementia over a decade ago, and before she was 50 sent me a link to a story she wrote Diagnosed with Dementia: What’s Next? wrote back in 2015. I hope that one sentence shares the many ways that even after a diagnosis, there are years, and even decades of productive life — she was diagnosed in 2008. See the bottom of this post for links to her books for purchase.
In the hopes of making this simple, I am going to summarize and layer in some thoughts from other readers, and the research, on things you can do to help drive your future. For several tasks, I hope you will collaborate with loved ones who will listen, support, and follow through on the plan you are working to create. Creating an action plan early can help you feel more control, and provide the tools to those around you to feel confident that they are doing what you want.
Ask your doctor(s) for and collect the following:
- Your diagnosis. You should get this information from the physician who made the diagnosis. What is it? What are some symptoms? What are effective symptom management techniques? What might you expect in 1 year, 5 years, 10 years? What changes might you expect and how might you address them?
- Clinical trial resources. Because so little is known and we don’t have a cure, would participation in a study offer benefits to you physically and emotionally?
- Referrals to local support groups, programs, and day-programs for engagement. Learn and ask your doctor(s) about staying engaged both physically and intellectually and it’s impact on brain health maintenance.
- Is there rehabilitation that would benefit you? From Occupational Therapy (OT), Physiotherapy, Speech pathology, Walking/mobility rehabilitation, Dietician, Psychologist, Social worker, Specialised fine motor skill rehabilitation, to counselling, including grief and loss as well as support groups.
Create your own care plan based on the recommendations and discuss with your loved ones:
- How to help. Make it clear to those around that it’s important they recognize you in meetings where your health, your assets, and your living choices are being discussed.
- What you like. Do you like walking? Playing games? Going to Yoga? What are some physical activities that you enjoy doing. If you stop driving, is there a way to help you maintain this activities?
- What do you want to be known about your diagnosis? If you are still working, how might you discuss and how do you continue in a job if you have noticed some of the symptoms of dementia are presenting in your personal and professional life?
- Who do you designate as your personal/financial and medical advocates. They may not be the same person. While many people designate a spouse, you need to have a plan B since the spouse could very-well predecease you. Sorry, I know that is a little grim. : <
- Would you be open to engaging in local classes, workshops, and programs knowing that exercise and engagement can help minimize your cognitive decline?
I found this site that can help you navigate a host of questions and issues related to Alzheimer’s, but it will help with other forms of dementia. I was surprised to find an action plan they offered that was for the caregiver … not the individual diagnosed. However, the toolkit may be a great way to have a conversation that is difficult to begin. You can do the General Assessment as a “guest” — just look in the bottom right corner of the page (see red arrow) for that option.
One of things Kate Swaffer has done is help advocate for the rights, and abilities, of those diagnosed with dementia. Now is a good time to understand what you can do to best advocate for your future. Encouraged.
What the Hell Happened to My Brain? by Kate Swaffer (Amazon)
What the Hell Happened to My Brain? by Kate Swaffer (Google)
Will the bank accept your Power of Attorney?
As the adult family caregiver named as power of attorney, I had an incredibly difficult time getting my Mom’s banks to recognize her power of attorney so I could officially support her. It was less than 2 years old, I provided the original, but since my Mom was alive, they wanted her to come with me to the bank and to sign their power of attorney documentation.
My Mom was so unsteady on her feet she needed a wheel chair. It was difficult and uncomfortable for her to go out. She never wanted to be in a wheel chair and half our journey’s out were battles over getting her to sit down. She was also incredibly frail and the task of just getting into the car would wear her out.
Wasn’t that the point of the Power of Attorney (POA)? I was very frustrated when the banks just failed to recognize my POA. In Virginia I could have pursued a legal suit … but I was already busy enough as my Mom’s family caregiver.
I am not alone as The New York Times story “Finding Out Your Power of Attorney is Worthless” confirms. Sadly, it is not just an issue of the Power of Attorney, but family members are still reporting difficulty getting banks to release funds after death. Here is a recent NBC News story about how difficult it was for Maggie Mulqueen when working with Citibank.
For years, I just used the online banking access to manage my parent’s finances. When I ran into issues, I would either have my Mom sign checks to move the money or just shut down the accounts. When USAA wouldn’t recognize the POA, I didn’t pay to renew my parent’s insurance and moved the account to a new insurance provider. There are some ways to end-around the roadblocks, but it seems ridiculous to have to out- maneuver the bank.
This past week, I walked into two banks to establish myself as Power of Attorney for a client. I need to get her past banking history since no taxes were filed since 2017, and need to be able to sign checks on the days when she is too weak to help. Remarkably, both banks (SunTrust and Wells Fargo) were extremely accommodating. I even had a note from the doctor stating she was unable to manage her own affairs, but did not have to provide it.
I learned two things:
- You can’t have an active credit freeze. As Power of Attorney, they will create a new bank profile (requires a credit check) for you that is attached to the individuals bank account(s).
- They view adult children differently than professionals that act as Powers of Attorney.
My logical brain understands this, but my journey as the adult child who was trying to help my parents DETESTS this varied treatment.
Maybe things are changing? Adult family caregivers … what are you finding? Curious.
THANKS to Ashley — Good food for thought and was a tactic I used when I was caring for my parents. Her lawyer suggested she not disclose the information to the bank. Thankfully, her parents added her to their bank account. After I hit a few roadblocks, I just set up online access to most of my parents accounts and did as much as I could digitally and in the spirit of their Power of Attorney. When I hit roadblocks and went to the bank with my POA was when I learned how difficult it was to get them to honor it.
Simple Ways to Protect Finances.
While likely under-reported, the National Council on Aging estimates elder financial abuse and fraud costs to older Americans range from $2.9 billion to $36.5 billion annually. Older American’s that have been abused have a 300% higher risk of death when compared to those who have not been mistreated.
After caring for two parents with dementia, I remind myself how much the checkbook meant to my mother. She had always managed the household finances and pointing out to her that she was failing to manage the finances was something that needed to be left unsaid. If you are concerned, first work with the person to support their efforts before suggesting they hand over the checkbook and finances. Some easy ways to help may be:
- Create a monthly schedule of bills and maintenance due dates
- Log in to the banking websites and credit card sites to monitor spending and confirm no fraudulent or suspicious transactions and fill in the bill pay gaps
- Set up a checking account they can use that has a minimal balance to keep in their purse or wallet for writing checks and use a different account for bill pay needs
My mother kept losing her purse that included her checkbook. So dealing with that was very time consuming. My Dad recognized this and took me to the bank to set up a new checking account for my Mom. We funded it as she needed money but no longer had to worry that the account that received their retirement funds and paid for the mortgage was at risk. We automated many of the home bills (mortgage, utilities) and I would monitor the spending behind the scenes.
Utimately, I wanted to help but not be invasive or diminish my parent’s ability to manage their finances.
Some other tools to consider include:
- Get a tile and insert it into the wallet so you can easily find it if it get’s misplaced. You can use their online portal to track it’s location.
- Set up a TrueLink card. It is basically a pre-funded credit card where you can set up limits on how much can be charged as well as products and services that it won’t fund. There is a fee for it, but the small expense is worth the money it will most likely save in potential losses.
If you have a variety of personal care assistants coming into the home, or your loved one is in a community, I hope you will consider some of these options.
I have worked with families both at home and living in communities that have been a victim of caregiver exploitation. One got my client to write her a small check, one purchased some face cream for my client and asked her for repayment of $85, and another apparently kept asking for gas money. Most agencies and communities require their caregivers agree to never accept money or gifts from clients. Should a client give them money, it needs to be reported to the community or agency. In one month, I had to report three caregivers for violating this condition of employment. Sadly, I know they will just turn up at another agency.
Managing the finances for many may be one of the few remaining freedoms that offer a sense of control. Some are giving up car keys, volunteer activities they love, hobbies they can no longer maintain and the checkbook can offer an empowered sense of self.
If you have been diagnosed, or are a family member and unable to do this for your loved one, you can contact a Daily Money Manager who can fill this roll.
With billions at risk, take some time to ensure someone is minding the finances. I hope these options help you and your loved ones. Suggested.
You have been diagnosed with Dementia. Now What?
I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.
I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.
As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?
I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.
When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.
When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.
Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.
The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.
Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.
There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.
Gaining Mom’s trust.
Many of us have been seeing a parent struggle with their memory and ability to manage their own affairs long before there is ever a diagnosis.
It took time for my Mom to adapt to having me pay the bills and help her. She felt that she was managing just fine. My Dad recognized she was having trouble and asked me to help. When I started I had trouble learning how to assist without offending my Mom. My Mom never recognized that the stroke she had impacted her memory or her ability to manage. She would tell me her “brain is bad today” but that wasn’t impacting her ability to manage her life (in her own mind). When I reminded her that she did have a stroke, she would accuse me of making it up.
I slowly worked to gain her trust by doing things in tandem that she asked for help on. I found the less I pushed, the more opportunity to help I was given.
When it came to the mail and the bills, I would take the piles of mail that were lying around and triage issues as I uncovered them. Thankfully, my parents added me to the bank account so I could reverse engineer many of their household finances. I visited with a large purse that allowed me to easily drop in piles that were dispersed around their home.
One day I walked in to visit, and my Mom had created a mail pile for me that included a bill and a check. She even put a label on the pile for me. Earned.
Moving Choices: Aging in Place – Part 2 of 3
The first in the series The Angsty Discussion About Moving: Life Care Communities is a general overview of of how they are structured, the reality of the choice, and some things to know and consider if you are looking into this option.
Now it is time to share some of the common issues and themes I see when a spouse is working to stay in the home with their loved one who needs more care as well as when adult children are helping a parent live at home alone.
In the beginning, it can be less expensive to layer in the care to support staying in their home. However, especially for a spousal caregiver, the care needs and isolation can become overwhelming in addition to the drain it takes on the health of the caregiver. According to the Family Caregiving Alliance, spousal caregivers ages 69 to 96 have a 63 percent higher mortality rate than noncaregivers in the same age group.
Often, the individual living with dementia doesn’t understand why their spouse is hiring outside help. Many living with dementia cannot recognize the necessity that someone help them through their day or the need for their spouse to be off the clock. The caregiving spouse starts to lose their outside connections and support in addition to skipping their own medical appointments and care needs.
Even though the couple is together, I am seeing that they both begin to feel isolated. The loss of a partner can also be more devestating since their partner might be their only engaging social connection. I saw this with my parents.
For those that choose to stay in their homes either with or without a spouse, there are engaging adult day programs for the individual with dementia. Isolation can actually lead to a faster cognitive decline and studies have likened the health risk to smoking a pack of cigarettes a day.
Generally, I see many couples and individuals supported by an adult child living at home alone resist outside support. Unfortunately, about half the time a critical incident occurs and blows up this option and a scramble to employ support occurs. If no prior plans are made, the available options are usually not the best fit. A little support layered in early can be an ounce of prevention and provide more options should care suddenly be needed after an event.
Living at home can also end if an individual living with dementia starts to wander or becomes combative.
The successful couples and families managing a loved one living at home have been able to integrate supports for daily engagement through personal care assistants or the use of an adult day program for the individual with dementia. I know how challenging it can be to start so just ask them to try it out for a few hours and days. Forced changes usually are met with solid resistance.
As a security measure, individuals and families that plan ahead have also selected at least one community that might be a fit if they need to make a change and gotten on the wait list. You can always decline the space when it becomes available but remain in the queue.
PROS:
– Familiarity in the home environment can help someone living with dementia stay independent longer since they have long-term patterns established.
– Expense. If you only need some part-time support or help, or even sign up for an adult day program, the total cost of living is less expensive.
– The individual with dementia wants to stay in their home.
CONS:
– Isolation impacts health and cognitive function in negatives ways. Even introverts (like me) will benefit from social engagement.
– Spousal caregivers have an increased risk of death.
– When something happens, there is no quick solution to provide support (unless you have already planned ahead or gotten on a wait list at a local community).
– Moving after dementia has been diagnosed usually means that learning new things will be more difficult. It can be tougher to make friends and engage within a new community.
– Expense. There is a tipping point when bringing all the services to you can be more expensive.
RECOMMENDATION:
– Make a plan for social engagement and find ways to make it happen. Call your county Area Agency on Aging to find out what resources in your community are availble to help.
There is no right or wrong choice when it comes to choosing the best option for your loved one and their primary caregiver — Just the best option for them and the caregivers when you need to make a choice. Advised.
Up Next, Moving As Needed …
The Angsty Discussion About Moving: Life Care Communities
The discussion about if to move, when to move and where to move is an inevitable topic if you are caring for loved ones with dementia. Most people want to “age in place” and view a move as a huge negative … initially. However, there are many times when moving is better for the individual living with dementia as well as their caregiver — especially for a spousal caregiver.
What I have seen playing out with my family, friends and their families, and clients is that the “move” that created so much angst and difficulty is generally not the last move.
My hope is that knowing that may help you discuss what is really just the best move to make for now.
I’m going to walk through some scenarios in hopes that it will help you and your family make better informed decisions about caring for a loved one. There are no wrong or right choices … just the best choice for your loved ones RIGHT NOW.
Buying Into a Life Care Community
My parents bought into a “Life Care Community” and handed over nearly a half a million so they would “never be a burden to their children.” The Life Care Community model typically offers Independent Living, Assisted Living, Memory Care, and Skilled Nursing options all on the same campus. The idea is that you moved through the system as needed.
The community helps with the activities of daily living (eating, bathing, walking, dressing …) but they do not help pay bills, manage lifestyle desires, cater to medical choices and preferences, or act as personal advocates. Because my parent’s had the belief that moving in meant their adult children would never need to be involved, caring for them was actually harder than it should have been.
At one point the community asked us to petition for guardianship because my parent’s were a danger to themselves and others. We refused and worked hard to manage through their needs while allowing them to retain their personal dignity.
My parent’s were eventually forced out of Independent Living and had to either move into Assisted Living or move out of the community. The smaller apartment and proximity in the community to the action was a big bonus and my parent’s were actually happier than I had seen them in years.
After Dad died my Mom struggled. In this community, the section for Memory Care only had people in very late stages of dementia. My Mom was always moving and needed a community that would give her space indoors and out to move. We moved Mom out of the community they bought into and oddly enough actually paid less monthly for a better care model for her needs.
The good news is that the “buy in” model is fading away. However, before you plop down a stack of money know that the community may not be the right fit for your loved one as their care needs change. In many communities, Assisted Living is filled with many individuals who have mild to moderate dementia. I watched as those that just needed help with dressing and bathing avoided my Mom who couldn’t remember their names or hold a meaningful conversation any longer. For a variety of reasons, the next level of care needs for your loved one may just not be a strength of the community care offered in a Life Care Community.
There are a lot of positives for these communities. Make sure you met with your Financial Advisor or run through the numbers if you can choose to either “buy in” or just pay a monthly rent. The unknown is if an when you may need to leave the community you are moving into. I know it’s a horrible wrench to throw into this difficult decision… but it is a very likely scenario that should be considered before a large financial investment is made.
PROS:
– Integrate and build friendships in Independent Living and have a place and connection for the rest of your life
– Some communities are now letting you move into your apartment and bring the varied level of care to you versus having to move through the different communities.
CONS:
– Have to move when your care needs change and the community doesn’t have the best fit for your needs.
– Expensive. Many now don’t require a lump sum payment. In our area we have a lot more choice and now they have different models for payment.
– It’s often hard to make new friends when you move into an established community.
RECOMENDATION: Ask if the community has a trial period so you can move in and see if it is truly the right fit for you now and can serve needs into the future.
I hope this helps you and your family as you are starting to have these discussions. Witnessed.
Up next, Aging in Place …
Making the Best Choice Medically for Mom & Dad
One of the toughest challenges I faced when caring for loved ones with dementia were the medical choices for non-dementia care issues that erupted and threatened my parent’s well-being.
A recent opinion piece in The Washington Post by an Emergency Room physician titled Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary illuminates the reality of the choices families face when caring for aging parents.
My family faced these difficult choices twice.
My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.
When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.
I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.
What I Wish I Knew When Dementia was Diagnosed: Find Joy in the Journey (#3)
The 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)
My 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.