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My Mom Hated the Hospital

Ihospital guess I should have realized this years ago. However, it didn’t really hit me until Mom was in the ER after she fell and broke her hip. She was frightened. At this point, she’d had another minor stroke and did not know who I was. Attempts to give her peanut M&Ms to soothe the misery resulted in me digging them back out of her mouth when she didn’t seem to know how to swallow the chewed up candy.

Today is my son’s 21st birthday, and it is dawning on me that I should have picked up on this years ago. On day 2 of my labor, my dad shows up at the hospital wondering what is taking me so long to deliver my son — my mom was no where in sight.  They usually always traveled as a pair.

A decade later when Dad fell playing racquetball and broke his hip and needed surgery, my Mom forbade me to visit him in the hospital. After she got him checked in, she called to have me pick her up and take her home. I thought it was bizarre that she wasn’t staying through the surgery and when she found out I went anyway, she made my sister call and yell at me.

I’d been to medical appointments with her and she was always aloof and dismissive of any medical issues I thought she should be sharing with her doctor. Looking back on all of her reports that she “passed” her physical, I have to laugh at my inability to recognize how much my Mom despised the hospital.

As I approach  what would have been her 87th birthday, I’m relieved she is free of this earth and the dementia that stole her away from us piece by piece. I’m also humbled by my total lack of insight and only hope what I learned will come in handy as I work to give back to others who are engulfed in their caregiving journey’s.

We are doing the best we can with the information we have. Your loved ones are lucky to have you working for their benefit. Keep up the good fight. Admitted. 

 

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What to do if my siblings won’t help?

barney-stinson-self-five

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. 

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I know I shouldn’t give to door-to-door solicitors

On a visit with a client whom I help manage the checkbook, we found a charge on the credit card we couldn’t identify.  When we called to find out what it was, it was for a political group that championed the environment. Knowing my client loves the environment, but is also a card-carrying Republican, I asked if she could tell me which party the group most affiliated with. She replied “we are Democrats.” I could see my client straighten his back as he adjusted uncomfortably in his seat.

I asked how they got his credit card information and she shared that they had canvassers in the neighborhood and my client gave his credit card and offered a monthly donation of $100.  We requested to remove him from the monthly donation program and all future solicitations. I asked my client if he wanted to contest the initial charge and ask for a refund, but he declined.

When we hung up, he stated “I know I shouldn’t give to door-to-door solicitors.”

We all know it. But it’s easy to get caught up in the exchange. My client lives on his own,  no longer drives, so having a passionate individual knock on his door and talk about how we can help the environment can be incredibly appealing. He also has cognitive impairment and too easily writes a check … as we have experienced with several service firms that overcharged him lately.

The reality is that there are many service companies that have predatory practices. I have seen lawn companies in our area charging thousands of dollars for lawn care, plumbers that charge $500 to unclog a toilet, and HVAC firms that scare clients into replacing equipment before it’s needed.  This isn’t just an issue for individuals living with cognitive impairment, but for all adults.

If you are concerned your loved ones are being taken advantage of, I hope you will step in to help.  For this individual, we have set up approved vendors who know that we require an estimate and joint approval from his daughter in advance of any work. I will stop by on those visits with new vendors or during the visit to estimate the costs.

If you know someone who has been victimized, you should report it to the police as well as contact Adult Protective Services. Advised. 

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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. 

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44 Million Unpaid American Caregivers

taskoverwhelmingYup, those of us doing it are often surprised to find out our friends and colleagues are in the same situation. Most of us step in and do it quietly. We may share the critical events as they occur, but often our feeling that this is a family duty usually means we don’t share the many ways that caregiving impacts us.

I was recently interviewed about the experience and am honored to be included in the stories that appeared in the NY Post, and Moneyish.

For those of us that have lived it, we know it’s overwhelming. My wish is that more employers will start to recognize and consider programs to help those stepping in to help their loved ones. Hoped.

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Herpes Vaccine Fighting Alzheimer’s?

herpes virusSo, not that anyone is going to opt for herpes, but several recent studies reported that taking herpes medication lowers your risk of Alzheimer’s. The study published in Medical New Today reported that Alzheimer’s risk is 10 times lower with herpes medication.

“In the herpes group, the risk of dementia was over 2.5 times higher
than in the control group.”

Two articles (Tsai et al., published in PLoS One in November 2017; Chen et al., published in the January/February 2018 issue of Journal of Clinical Psychiatry) demonstrate an increased risk of subsequent senile dementia (SD) development in patients with acute varicella zoster (herpes zoster) infection. 

I found this to be a fascinating read and who knows where the cure might originate? Here’s to a cure. Intrigued. 

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I’m Overwhelmed and my Siblings Are Not Helping

SanDeigoERH

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. 

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