Category: Dementia and Family Dynamics

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.

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 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. 

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

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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. 

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

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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.

Dementia and it’s troublesome sidekick Anxiety

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The speed at which my Mom could bring me into her anxiety was one of the most alarming shifts in our familiar dynamic. Growing up, my mom was the calm, low-key fixer. In the military life in which I was raised with a dad that was often gone, mom ran the household and raised four kids. She was as adept with a hammer and nails as she was with a spatula and pie pan. So when I started to get panicked calls from her, I usually found myself jumping in a car and driving over to visit. I figured it was now my turn to be the fixer.

There were a lot of personality changes over the years, but the anxiety was one of the issues that troubled me most. I learned when she was anxious how to not join her where she was and redirect to a calmer option. I learned to not disagree or debate what she believed, but also not join in the alarm. In the beginning, I would just excuse myself for a few minutes so I could reset my demeanor. Later, I would suggest something we could do together that would change the setting and take her focus to something else.

Puzzles were a regular feature of mom’s room in Assisted Living. The simple act of setting it up, finding a piece or putting it away always brought calm. When it was nice, we would go for a walk in her community, and some days we just got in the car and would complete a simple errand.

The “therapeutic fibs” are often recommended for those that can’t break the cycle of anxiety they are in. I really struggled with this idea initially but found that the truth teller in me was not helpful in many situations. The most difficult were my mom’s calls about dad being in the hospital and needing a ride to visit him after he died. Neither of us needed to relieve his death over and over and I found the suggestion of a visit to dad calmed her down and let her focus on what to do before I would be coming over.

As a last resort they may prescribe medicine that can help. There were several times in the early days when the doctor encouraged us to use the Ativan she prescribed. When the Life Care Community my parents lived in forced their migration from Independent Living into Assisted Living, I dissolved the pill in a glass of Coke. I started out offering the medication to her, but she was suspicious and would refuse any medication. It’s kind of humorous to me now to tell you that she was so anxious, she wouldn’t take the pill that would help her anxiety, but that was our reality.

Dementia is hard on more than just the individual diagnosed with it, and because our loved ones are usually unable to adapt to the changes happening in their brain, it’s up to us to adapt to help them. Encouraged. 

When we can’t find the right words …

Cole&PoppopYesterday was my son’s college graduation. As I drove up, I struggled to shake the feeling of loss that swept over me as I faced another big event without my parents. Since they both battled different forms of dementia, it is a blessing they are no longer on this earth, but how I miss them being able to celebrate another engineer in the family bloodline. My Dad and Cole always ended up in giggles when the two of them got together and he would have reveled in the graduation. 

As I sat at the ceremony listening to the Valedictorian, it became clear that no matter what your age, education, or beliefs, we are all struggling to find the right words to enter into civil discourse. As she and her classmates are preparing to continue their quest to make our world a better place, the things she shared with her peers felt immediately valuable to me as I work with many who have lost the ability to handle the complications of balancing a checkbook, negotiating a contract, or even planning a meal. The added complexity in helping a loved one is that there are the familiar habits and patterns that may put your assistance out of the realm of ‘normal’ and cause discomfort. The best way for me to start a fight with my Mom was to ask if she wanted help with the bills and the checkbook. She didn’t sense any short coming in her abilities so my words felt like a betrayal when I reminded her of the missed water payment or the fact that she signed two contracts for the same home repair with two different vendors.

“Approach with humility and a desire to understand,” suggests Kate Hill. Give ‘space to silence’ and ‘don’t lock the doors’ — two ideas that I think can be applied simply to the role of caregiving.

I know the impatience I felt when I was working, raising two young kids, and also trying to help out my parents. I wanted to just take over and get things done. I needed to allow more time to cross the item off of the task list and include them in the process. So too must we apply this same approach to problems we are facing in our communities, states, and country. 

When our loved ones are already losing so much, the last thing we need to do is to add to the list of losses. I’m excited to see what this generation will do for all of us and appreciate the on words she used to suggest how to be better citizens, friends, colleagues, parents, children, and caregivers. Impressed.

What to do if my siblings won’t help?

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Do what you can to support yourself.

A reader made a fair point when I posted I’m Overwhelmed and my Siblings Are Not Helping (Thank you Monique).

My siblings helped … eventually. I felt very alone the first few years when they didn’t see the issues I was seeing regularly because I was the only one that lived near my parents. I start from the premise that if you try, you may find that your siblings may join you. So first, I hope you will give them the chance to step up by over-communicating and for asking for specific help.

I had given up before my siblings stepped in and bonked me on the head to reengage.

Should your siblings fail you, do the best you can and move on. We can only control what we do, and the job you have is difficult enough. If you are in this place, my suggestions are to:

  1. Find a local caregiver support group. Go online and search and you will be amazed to find support groups for children, spouses, and even by diagnosis.
    • Try the Alzheimer’s Association, they usually offer all types of support groups and you search by zip code.
    • Contact your county Area Agency on Aging. They should know of some local resources.
    • Contact the local retirement communities, assisted living, and memory care communities — they usually host the support groups and know what is offered locally. Usually someone in the sales department can help you.
  2. See if there is a local village that can help your loved ones and provide recommendations for local vetted resources.
  3. Contact an Aging Life Care Manager.  Nurses and social workers by training, these individuals can help navigate health issues and find quick solutions to care needs. While they do have an hourly rate from $150 to $200, they might be able to find a solution to something that might take you days and weeks to navigate. You don’t know what you don’t know and it’s nice to have an expert on aging in your back pocket.
  4. Meet with a Daily Money Manager. They typically specialize, and you will want to find one that serves seniors. I have been doing this service for other families after my caregiving journey ended. I focus on the financial issues like paying bills, reviewing invoices, and maintaining the home and reporting back to adult children who aren’t near mom and dad.  I find that within the first month I find a variety of ways to eliminate robo-calls, save hundreds of dollars on unused services, and even access unused benefits for care services. I can also make a direct introduction to the right solution, be it a personal care assistant, elder-law attorney, or auction house.
  5. Tell your siblings what you are doing and offer a summary of accounts … and oh, yeah, compensate yourself for your time if you are able to do so. The reality is that caregivers on average give up over $324,0044 in lost wages and retirement compensation. My husband and I added in compensation for those individuals who are supporting us a DPOA and trustee — and are working toward ensuring that we can afford to compensate our loved one for stepping up because we know it not only can result in lost wages and opportunities, and is a job that would be compensated if we hired someone to do it for us. Thanks for your comment DW, I can’t believe I forgot to include this!

Whether you are an only child, or your siblings have let down mom and dad and aren’t stepping up to help, find ways to support yourself in helping your loved ones.

I regret not bringing in more help when Mom was alive. Instead of spending time following up with the community nurse, I could have been out enjoying a meal or and event with my Mom.  Hindsight is 20-20. Reflected. 

Decisional Capacity and Dementia

NAELA version 3 16A diagnosis of cognitive impairment or even dementia does not mean that the individual has lost their ability to make or change estate plans. Start with the doctor who diagnosed them and ask if they can write a letter documenting their assessment.

We had an awesome geriatrician that got involved with my parents. He told me to get their plans updated immediately and wrote a letter stating that they still held decisional capacity. My parents did know and understand that we needed to update their plans.

Because we did not know how long we would need to care for them we insisted that all four of the adult children were named in the Durable Power of Attorney. The lawyer suggested against it stating that we should name one and have secondary, tertiary … However, we had that initially, and since my sister was listed as the primary, and me as the secondary, trying to get it recognized was headache inducing. I was the local adult child so needed to be the primary. I had to bring her resignation, then they often wanted to contact her. It just created more work when I was already overwhelmed.

We also had the benefit of caring for our parents in a unified capacity for nearly two years and have navigated a variety of bumps in the road. Should I move or die, I wanted to make sure one of my siblings could easily step in to help my parents.

Estate planning for incapacity is difficult and there are many landmines. I hope you find that you still have options even when dementia has been diagnosed. I also suggest you get a referral to a lawyer that specialized in Elder Law. You can do a search on NAELA.  It’s complicated and should your loved one lose the capacity to make decisions, the last thing you want are plans that fail. Recommended. 

I’m Overwhelmed and my Siblings Are Not Helping

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With my siblings and parents.

The local adult children will generally carry the larger load. They probably have spent more time with a parent and also see changes in their behavior that won’t be noticed on a phone call.  Often, the real test is spending time with the person.

Early cognitive issues just don’t get diagnosed very often. Of the those I know that were diagnosed early, the individual noticed and often had loving friends and family mention changes, and they pursued it. I will say when I went to the doctors with my parents and I asked about changes, the doctors all shut me down. It wasn’t until my parents showed up in two Emergency Rooms in two days and ended up seeing the same doctor that a doctor finally addressed what to me where very obvious cognitive issues in my parents.

What happened with my siblings was totally separate. I had noticed the issues and told my siblings. They didn’t see it. I visited often and tried to put my finger in all the dyke holes to help and was driving myself mad. I tried to illustrate to my parents the ways they were failing. While my Dad seemed to listen and even offered to go get cognitive testing, my Mom refused and debated every point. More often than not, I would leave my parents with both of us sad and angry. I eventually gave up.

As I was giving up, my siblings started to see and understand that our parents were failing. They came to town and we staged our first intervention. They had to talk me back into helping. Thankfully, we all got along but we still had many issues to address.

Set up Conference Calls on a regular schedule. 

I started this blog in part for my mental health, but also to document what was going on and not have to tell 3 siblings and extended friends and family what was going on. However, my siblings and I really needed to have a dialogue about what was happening and how we might help our parents. I set up the calls using a free service called TalkShoe. One of my brothers would set the agenda. We started to talk through ways they could help.

Give each Sibling a Job

We didn’t do this right away, but having the conference calls helped me share key issues and allowed my siblings to ask questions and be involved. As we had issues, we started to figure out who could step in to help on key tasks. We needed to sell their townhouse, review the contract at their retirement community, arrange to clean out/auction off the furniture they no longer needed … among managing the day-to-day.  They also started to rotate on regular visits since living with them helped understand what was really occurring since they could no longer accurately share news on their day.

Take on the Onerous Tasks

When my parents kept driving after their licenses were revoked. I tried to hide the cars. They found them. It was one of the many times their resourcefulness and ability to do things astounded me and my siblings. My brothers came to town and took the car keys away. They told them why they were doing it and drove the cars away. They stepped up and for once, I wasn’t the rotten kid.

Over time, my siblings saw how much I was doing to help my parents. They knew I left my corporate job because the strain of raising kids, caring for them, and being a full-time employee was wiping me out. At some point, they suggested that I get paid for my time. It wasn’t going to replace a salary, but it was welcomed as I transitioned and started working on building MemoryBanc to help other families be better prepared for the rest of their lives. What I know now is that many estate plans now include provisions to compensate family members who step up to help. We were sure to include it in our updated plans.

I do know that not talking is a great way to foster frustration and hurt feelings. What we did recognize is that we were losing our parents, the last thing we wanted to do was lose our sibling relationships too. I hope that you and your family will start by scheduling regular calls to talk about how to help your loved ones as well as each other. Suggested. 

You are still their child, even at 60!

babytrapI have the chance to meet and talk to a lot of adult children who are caring for loved ones with dementia. At a recent “Caregiver Academy” talk, I shared some of the major roadblocks I faced when trying to help my parents. I usually get a few open guffaws from other adult children facing the same issues.

I learned that reason doesn’t work when our parents still see us as their children. I imagine it’s kinda like how I still think I’m younger than my image in the mirror conveys (ouch, still hurts to admit that.)

When my dad was initially diagnosed by the psychiatrist in their Life Care Community, the doctor called and told me I needed to be with my parents for the diagnosis. He recognized that my parents weren’t accepting help and that they were both in a place where they were unable to make good decisions and at risk for fraud. After we had made plans to go to the appointment together, my dad calls me back and says “You don’t need to come. I’ve got a wife, damn it!”  I knew that my mom made my dad make that call. It didn’t matter. I still needed to find a way to make sure he went to the appointment and to be there.

When my parents finally started to ask for help, I jumped at EVERY request. Then I realized that I might be enabling them more than I was helping.

It’s easy to understand now that I’m on the other side and working with other families who are facing the same issues. However, I will always advocate to find ways to allow a family to maintain their parent/child role, while keeping mom/dad safe. I wish I could have been more of a daughter and realize how many hours I spent at the nurses station, coordinating help, and following up on invoices and managing the finances.

One adult caregiver who attended the talk was at the breaking point and came up to chat. I suggested she have a Life Care Manager meet with her mom. She wrote me a week later to tell me it has made a huge difference. While mom was resistant to help from the family, and dismissed the family doctor recommendation, she agreed to meet with a local life care manager who helped her (mom) take control of her medication and invited her back.

What is important is to recognize that it’s important to feel control over your own life. Even when things are failing, you still want to have a say. In many cases, the person failing won’t recognize it.

While I hope I won’t be as stubborn as I felt my parents were being, I’m pretty sure I will most likely be. I continue to openly discuss it with my kids hoping that should/when the time comes, they know how to use what I have learned to make it easier on them.

Every family has a different set of circumstances. Some kids show up to help, some withdraw, and some seem to only create more problems than help. I am very lucky to have four siblings (and supportive and helpful spouses) that showed up when it was needed most — for me and my parents. Blessed.