Tag: caring for someone with dementia

Navigating Anger and Righteousness

It’s been a while since I had to deal with anger from my Mom or a client diagnosed with dementia. My Dad never lost his cool even through moderate Alzheimer’s.

Angry & Righteous Today

There is no easy salve to navigate these situations. I support an individual who lives in a retirement community managed by seasoned professionals, work with a savvy agency that supports his health (Aging Life Care Managers), and have the complete support of his only living relative, but none of this helps when the client has decided he needs to buy a car.

Two years ago a letter of incapacity was written. His current doctor re-tested him and wrote another letter of incapacity within the past year.

However, none of this stops him from wanting and being able to manage to have the local car dealer come pick him up to purchase a new car. The fact that his license was rescinded more than two years ago and his credit frozen doesn’t seem to be slowing down the dealership from helping him purchase a car.

His community, his health care manager, and my team are working to redirect and move him away from walking out the door of the community and buying a car. All of us are feeling the sting of his anger.

How awful this must feel to him.

Sometimes there just is no solution but to meet him where he is and try to guide him away from the steps he is taking. Unfortunately, today’s venture is the third time we have gone through this dance and we fear it is most likely going to get him evicted from his community.

It why dementia feels so unfair. Everyone looses today. Bummed.

Assume Appreciation

For anyone who has stepped up to help a loved one, you know how hard it can be.

Your loved one is fighting for independence, purpose, and typically has no recognition of the help they need. It took me a year to really figure out how to better navigate the support my parents needed but didn’t recognize.

I learned that I had to be the one to adapt. For someone with a cognitive issue that they most likely don’t fully recognize, they are going to be unable to adapt.

Years ago when I was still working in Corporate America, we had a consultant come in to help the company function better. One of the things we learned was to always give your team mates the assumption they are working to help you. As you can imagine, we had some internal struggles and this idea did help us start to have dialogue around where we were trying to go and how to get there now assuming we were all going to the same place. It was a game-changer, at least for me, and I still carry on this philosophy in all I do.

One of the things I did learn on my caregiving journey was to sit with my parents, and mostly my Mom, and do things in tandem. While early on the first thought was to take away the checkbook, I changed to a system where I would come and sit with my Mom to help her with the bills. Eventually, she just handed over the checkbook and asked me to take care of the bills for her.

That first year was REALLY difficult and I don’t think I ever cried so much in my life. It was frustrating, heartbreaking, and thankless.

After I changed to approach my role differently, things went a lot smoother.

YES. The time I needed to spend with my parents to help them DOUBLED. It takes way less time to do things solo, but the reality was that my parents wanted to participate.

One day, I walked into my parents apartment, and found the note I have included in this post. “Dear Kay, So thoughtful and loving for you to take us on — as if you don’t already have enough to do.” My Mom was not a gushy lady. Reading this still brings tears of joy and grief to my eyes.

There were some things I could have done differently but I did the best I could. I operated on the assumption that it was an honor and duty to help my parents. In the end, I was surprised to find that my Mom recognized the love behind my support for them.

Even if they are unable to tell you, assume there is appreciation for the support you are offering.

I meet many older adults today who hire me and my agency to help them because they don’t have family to help. The stories I hear are often heart-breaking and they feel very alone.

I wanted to remind you that the people you are helping are lucky to have you. What you do might not always be the perfect option, but it’s okay because you are working on finding the best path forward together. Appreciated.

You Do Not Have to Navigate Alone

When a loved one needs your help, it’s easy to say “Yes” but then find yourself overwhelmed with choices or decisions you don’t know how to navigate.

I lived this journey and recognize how I could have made it easier for myself, and my parents if I had incorporated an Aging Life Care Professional earlier.

I seem families struggle with their situation, and they just don’t know what options there are to help. Unfortunately, your primary care doctor, nor any of the specialized medical professionals you visit, don’t have the time, or the practical knowledge to know how to navigate living choices and care options once a health condition is making life more difficult.

I used Aging Life Care Professionals to help me narrow down the choices for a memory care community for my Mom. She was living in a Continuing Care Retirement Community, but the care options for her didn’t fit her memory care needs. In our area we had over 30 memory care communities. The Aging Life Care Professionals I hired understood that my Mom loved to walk. They gave me and my siblings 3 places to visit so we could make the final choice and also gave us the pros and cons for each. We were very happy with the choice and the advice on how best to help make the move for my Mom. We paid them for a few hours of their time, which helped me save dozens of hours researching options and eliminated hours worrying about making the right choice.

I work with many families who are floundering to help find the right care and understand the care options in their area. I will always recommend they contact a local Aging Life Care Professional to help navigate these early choices. They can help understand:

  • The type of care that would be most useful
  • The terms and conditions in a care agreement with a home care agency
  • The amount of time you might consider having care support in the home
  • How to adapt your home to make it easier for them to stay there
  • When you need to consider a care community over caring for a loved one at home
  • Who are the best doctors to help address the health issues being faced
  • How to navigate what you believe to be your loved ones wishes with their health condition

Those are just the basics and I encourage you to consider contacting a professional in your area and letting them help you understand how they might be able to help you.

What I do know is that so often the caregiver fails because they are overwhelmed. I hope you will take the time to contact a local professional to see how they might be able to help you and your loved ones. Encouraged.

Yes, And …

It took me a while to adapt to how best work with my parents and support them through Vascular Dementia (Mom) and Alzheimer’s (Dad).

My Dad got quieter, and my Mom grew suspicious.

I participated in a program recently and our trainer discussed how using the simple sentence starter of “Yes, and …” can help validate the person you are speaking with and help create a collaborative solution to what that person just told you. It was a general business training … not one for caregiving, but I immediately saw the value in how it might help me work better with my clients and loved ones.

I’ve already used it with a client diagnosed with dementia and it has been a helpful tool to manage through some conversations that could create fear, suspicion, or worry.

As an example, here is the conversation I had with a client who has a broken front door that we are in the midst of getting repaired. While it is still minimally functional, we want to keep it closed, locked and use it as little as possible. It is possible that the handle breaks and we won’t be able to keep the door closed … or lock it. The homeowner is ignoring the note that is posted on the door and using it to let in cats and visitors.

When I mentioned the next step for the repair, he commented that “The door has always been this way. It’s alright if I keep using it.” So I responded “Yes, it has been tricky to use for several years, and the last time we got it fixed, the locksmith said if it fails again, we will need to get replacement parts. Until they arrive, we need to keep it locked and use it as little as possible. Can you help me make sure that happens?” He answered “Yes” in response and we talked through how to best do that (update signs on the door and a note to the next few days of visitors). I let him know I would help communicate the door issue to the rest of his care team visitors.

Together, we came up with a solution on how best to move forward that we both believed would work. Solved.

Helping Celebrate the Important Life Dates

My parent’s got married 67 years ago today. When I was the adult family caregiver, I worked to find unique and fun ways to celebrate with my parent’s when they could no longer plan or manage these life events.

I went back to read my post from 7 years ago, I openly admitted that slight effort felt overwhelming to me at the time. What I recognize now is that I didn’t have to manage everything. I could have asked a sibling to help, but none of them were local which brings some extra hurdles to both financial and medical task management. (I recognize I’m still making excuses for not giving up CONTROL ; > )

Celebrating 60 Years of Marriage

What I learned on the journey was that there are resources that I could have hired to help manage the medical needs of my parents (Aging Life Care Managers), and handle the day-to-day finances (Daily Money Managers).

What I regret now that both of my parent’s are gone was that I didn’t focus on being the daughter and find the joy in planning and celebrating these events with my parents. I got mired in the management and coordination of their care and finances. If I could do it again, I would manage things differently.

On their 60th anniversary, I did enjoy a nice visit. At this point they were in a two room apartment in Assisted Living. We had all dreaded moving our parents from their 3-bedroom apartment in Independent Living just a few months prior, but the community said we either moved them into Assisted Living or they would be moving them out of the community.

My parent’s were so happy with their new, smaller apartment. Neither myself or any of my siblings would have believed this to be true until we witnessed it.

I noted on this day we talked about how few couples make it to their 60th wedding anniversary. My Mom shared how lucky she felt they made it this far and was with their current life. At this point, both of my parents were living with dementia that was progressed enough that they could no longer manage their daily activities without assistance and cueing.

I’m honored I was able to celebrate this day with my parent’s. I hope you are able to find the joy when they are still on this earth here with you. Reflected.

Two things you can do today if no power of attorney is in place.

Please know that I am not a lawyer, but was a caregiver to my parents for over five years and offer this advice as a practical end-around to frustrations I faced trying to use the legal tools to help them.

While my parents listed me on their power of attorney, I had a devil of a time getting banks, insurance companies, and financial services firms to recognize it. It was less than 2 years old and Virginia has a statute in place that frees them of liability if they do recognize it (my simple non-lawyer explanation).

There are simple ways to set up a safety net
for loved ones.

Instead of spending more hours fighting them (they received it but then didn’t do anything and then I would languish in their phone trees on hold), I worked with my parents to set up online access. In most cases I could do most things for them online.

As we enter this next phase of novel coronovirus and state and federal mandates, I am worried for the large numbers of older adults who don’t have someone who can step in and pay bills should they become sick.

Some things you can do today to prepare include:

  1. Go to the bank with your loved one, and sign their power of attorney. It will put you on the account immediately. They may also offer to add you to the account, but this could be an issue since then you become a “joint account holder” that brings other possible complications and risks.
  2. Set up online access to the account. You can do many things with online access and at minimum it will allow you to monitor the account or step in and help pay bills if your loved ones needs help.

It’s a shame that so many American’s do not have powers of attorney (POA) in place. I believe it should be a right of passage upon turning 18 to set up your first POAs. I did pay for my son to set up a Durable Power of Attorney, and a Medical Power of Attorney for his 18th birthday. I do hope I never have the cause to use them.

We are in strange times. I hope this gives you some ideas of how you can help should you need to step in and help a loved one who doesn’t have their estate plans in place.

If you have the time, now is a GREAT TIME to create POAs, and get a Will in place and have a discussion about the finances. To find a local elder care attorney, you can visit the National Academy of Elder Law Attorneys. Recommended.

How are you dealing with “social distancing” and caregiving support?

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?

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?
Try out the Alzheimer’s Navigator (See Red Arrow).

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.

End-of-Life Directives and Dementia

I lived the reality of managing end-of-life wishes for individuals with dementia. It is hard to navigate a medical system that is trained and geared to sustain life.

If you are in a position to care for loved ones with dementia, this article in The Washington Post is a good overview of how complicating things can get even when advanced medical directives are in place.

After witnessing many family, friends, and clients live through dementia, I am always hopeful that things will change in the coming years. The idea of assisted suicide doesn’t include individuals without capacity. For inviduals with dementia their gradual loss of capacity impacts their ability to advocate for their medical wishes.

There are now “advanced directives for dementia” but for a variety of reasons, many legal, they may not be followed.

The reality is that just having the legal documents in place and all the planning in the world is just not enough in many cases — and especially when there are cognitive issues. There is the need to have someone advocate for your needs and manage your affairs that goes beyond living in a continuing care community that provides a play to stay and food — but does not help protect and manage your finances or manage your healthcare to your personal wishes or advance directive document.

The woman in the story requested VSED – voluntary stoping eating and drinking – to end her life. She has been diagnosed with frontotemporal dementia and the continuing care community she bought into to manage her care needs has now told her they will not be able to follow her directives. Apparently, many states have ruled that food and water are basic care and can’t be withdrawn.

There are ways to find trusted resources to help manage these needs for you. I became a Daily Money Manager or basically “a professional daughter” after losing both of my parents to dementia. I work with Aging Life Care Managers that can help navigate the health issues and advocate for your health care wishes.

There are options and as these issues come to light, many more options will be forthcoming. Hopeful.

Please tell me what you have done or are doing to address these concerns (and if you have seen the in action.)