“Both positive and negative emotions lingered for up to 20 minutes in both healthy adults and in participants with Alzheimer’s disease, whether they remembered listening to music or not, the team reported in November in the Journal of Alzheimer’s Disease.”
Caring for a loved one can be challenging as well as deeply rewarding. I am hoping this information provides you with another tool to serve you and your loved ones in the years ahead. Discovered.
I recall my Dad calling to ask me to come over and help Mom pay the bills. When I got there, she said she didn’t need any help as was just offended. When I turned to my Dad he acted like he had no idea why I had shown up.
It was at least a year later before my Dad was diagnosed with Alzheimer’s and my Mom was diagnosed with Vascular dementia.
I now realize my Dad probably had no recollection that he called me.
There were many instances when my parent’s were very clear that they didn’t need the help of their adult children, they were doing just fine on their own. But they really weren’t. I had helped turned back on utilities that never got paid, cancelled duplicate agreements with contractors, and showed up every time they did call to ask for help. When I would arrive 20 minutes later, they had no memory of the request and then just grew suspicious of me like I was making stuff up.
What I realized later was that my parents were trying very hard together. They wanted to protect and help their spouse and weren’t going to rat the other out to the kids. OK, OK, my mom actually ratted out my Dad, but she was the one failing to get the bills paid and he just forgot where he parked the car.
Nearly 9 years ago I started to share some of my caregiving stories on this blog. As the local family member who was watching her parents fail and behave in new and unusual ways, I was horrified and amused.
Some things were so odd that I couldn’t control my laughter when they happened. Thankfully, my parents would usually join in. We had a great relationship. As the baby of the family, I benefited from my older siblings being teens in teh 70’s and breaking in mom and dad. I was also the only one that stayed around after college. We shared many meals, they were around for two grand-kids, and I often tagged along on my mother’s trips to auctions for her antique’s business.
On this one day, my Dad seemed to finally acknowledge that something was wrong. He had been driving to my home for ten years and we lived a few miles away. Instead of arriving early, he showed up half an hour late and filled with anxiety — two things no one would have associated with my dad.
Driving with cognitive impairment is a risk. Now there is a huge variety to term “cognitive impairment” and in general, any noticeable loss of short-term memory could really put a driver, their passenger and others on the road at risk. Changes to the brain that result in memory loss can change thinking and behavoir.
This is usually one of the first big battles. Approach it softly, identify your concerns plainly, and listen openly to help walk this early road and maybe find a silver lining in how you resolve it. Experienced.
Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. Finding a good solution that works is harder than it might seem, but it is worth the effort.
For solo individuals with a cognitive issue the reality is that staying in their home can be more expensive than community options. It also creates a different form of stress on the family and care team as the risks of living alone create opportunities for major catastrophes. I’ve arrived and had to call 911, battled predatory vendors, and cleaned up identity theft. Had someone been in the home, the impact of these could have been minimized or even avoided.
An ideal solution seems to be having someone live in the home. Most of my clients have unused bedrooms/bath(s) that served the family when they were raising kids and enjoying early retirement. Early on, when intermittent help is needed, most do not like the assortment of personal care assistants that have come into their home to help them. However, if you don’t need more permanent home care, you often face a shifting stream of inexperienced caregivers. The experienced caregivers usually hold out and get assigned to regular and more permanent schedules. This makes it even harder to integrate care when it is needed.
I started wondering how to use the empty bedrooms effectively in the homes of client’s to benefit them. Could we find someone that could bring energy and socialization into the home, and create an intergenerational relationship that benefits both? Is there someone in your extended friends and family that could fill this role?
Most states have rules for domestic employees, which this agreement would fall under. Virginia laws encourage these arrangements. Key components of an agreement should include:
Creating key tasks and time needed to fulfill these duties
Setting an hourly rate for duties
Creating time off and plans for when the individual is not staying in the home
Finding a lawyer to put an agreement in place (most elder law attorneys can do this and you can find them here NAELA.org)
Rounding our insurance to cover your risks and employment law
We just implemented this solution at one of my clients and it has already been a huge relief to know that there is someone in the home on a daily basis. The ongoing engagement is also going to benefit the homeowner. The best part is that we will also have minimized the costs of care.
There are many times when it feels like it is imperative to make a change for safety or financial security. However, so often those transitions are so difficult to manage most often because the individual who is impacted doesn’t recognize the change needs to be made.
Waiting is the hardest part.
I have learned that patience and perseverance win the day. After living through forced transitions and the aftermath of emotions and anger when I was living through this with my parents, I found my shift to softer and supportive worked best.
Yes, working in tandem and going at a slower pace take more time. However, imagine if you were on the other side of the equation, isn’t that what you would want?
We arrive as caregivers with a variety of different baggage. The person that is living with cognitive impairment and dementia will have a harder time changing, so the reality is that this falls to the loved ones and support around the individual.
I am working with a client now who knows she has memory issues and a dementia diagnosis, but believes that she can manage the finances just fine on her own. To help, I’m building a monthly schedule to help her and asking the friendly visitor to put due dates on the calendar to remind her to get the bills paid. We will confirm in the background that the bills she needs to pay did indeed get paid.
I work with father/daughter team and over the holidays, the dad finally resigned as Trustee. We have had to fight predatory home service companies and this summer walked in to find a hacker had control of his computer and was starting to transfer money out of his bank account. Thankfully we stopped it in time, but then we spent nearly six months cleaning up the aftermath of the account and credit freezes we put into place. However, his daughter respected how much this meant to him and never pushed him. Over the course of the past two years, she has gently and kindly reminded him of the issues and on this visit, he finally agreed it was time to make the transition.
I know everyone doesn’t have the support and resources that some of my clients have, but I believe there are still ways to reconsider the threat and find ways to support your loved. Got an issue? I’m happy to help. Sending an email to me at Info@MemoryBanc.com. Supported.
In working with individuals who have Long Term Care (LTC) Insurance, I have one of our many who used it all up. Sadly, I have walked into situations where the individual has passed away before they used half of the benefits.
I am still waiting to figure out why you wouldn’t start your claim as soon as you possibly can. What you should know is that:
Once your claim is approved, you NO LONGER PAY your LTC premiums.
While many state they are for two years, that is how they calculated the full benefits, but they continue to pay as long as your policy still has money left to cover your LTC qualifying expenses.
If it were me, I would rather use up all of the LTC insurance money before I paid for the services needed out of pocket.
Many of the policies have a distinct mention of cognitive impairment which is separate and distinct from qualification by needed help with the Activities of Daily Living (ADLs) to include bathing, walking, toileting, dressing, and eating.
I hope this might spur a few people to look into this and get the benefits flowing as soon as you or a loved one qualify. Hoped.
The number of COVID scams continues to grow. I got this email yesterday and wonder how many people immediately jump to volunteer — we have more time (seemingly) and we all want to help kick COVID to the curb.
What bothers me about these types of messages, besides just being poorly executed (not my email address; the “From” email address that is goobly-gook behind the name of “Clinical Research”, what is it a “Verification” of?) is that I know many people are interested in helping. The fact that a good deed gets punished by a scammer bums me out.
For those of us with loved ones that we know are feeling more isolated, the phone and computer can be a source of entertainment … and danger. I have had several clients fall for pop-ups and they called and gave out login and banking information to the bad people. Thankfully, we could shut down and recover quickly and no money has been lost — but to have it happen so frequently now tells me it’s important to be more vigilant.
For several clients, we have created a “white list” so they get their messages from the people they know, but all the others get either blocked or filtered. When we visit (or when family visits) they can go through the other messages together. Some family members do a daily check-in and filter out the bad messages. A little more vigilance can go a long way. Protected.
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.
I am working for a gentleman who had a stroke. He is challenging every tool I have as well as frustrating his family who is very concerned for his safety and fiscal well-being. It’s hard to help someone that can’t recognize they need the help. While he saves up the mail and is happy to have us manage his bills and medical claims, he is taking cash out of his ATM regularly and has no recollection of where his cash went.
He left the rehab facility after his stroke and returned home where all daily living rules have changed. His habit of eating out could no longer be met. The doctor told him he should not drive, yet he is driving all over. His friend is bringing in meals for the two of them and now he is spending way beyond his means but has no awareness of money management.
I walked into this account while he was in rehab to find he was already $70,000 in debt and no longer had any credit on either of his cards.
The family members are beyond frustrated. I fully understand. You try to help and then your loved ones undo all the help you layered in not recognizing or appreciated the help. Then they usually get mad at you for butting into their lives.
A caregiver is coming in daily to help, but “Mike” keeps getting in his car and driving around. He doesn’t understand the need for social/physical distancing. He also doesn’t believe that he needs to stop driving. The doctor told him he had to go to the DMV to get assessed and put in a request to suspend his license. He still has a license with a valid date in his wallet and is continuing to drive. That is the biggest challenge – what are some options to stop the unlicensed driving?
When my parents were driving on suspended licenses, I quickly ensured that we first followed the need that caused the driving. Do they need groceries? Do they need to get to a medical appointment and aren’t used to calling cabs?
Once we knew those basic needs were met and this was more about control and freedom than need:
I made sure they had umbrella insurance. If they were in an accident, my guess is that their auto insurance would not cover them since they were driving on suspended licenses.
I calmly conveyed the possible consequences that they could harm themselves or others (they poo-pooed this idea); that their insurance didn’t cover uninsured drivers and an accident could consume their savings (they pulled out a valid license … they had torn up the notes from DMV suspending their licenses and requiring they turn in the driver’s licenses); that they could be taken to jail.
We unplugged the starter (a neighbor helped to reconnect it after they told them what their horrible children were doing to them).
My brothers came into town to help once things got REALLY bad and hid their cars. This is the one that finally worked.
Some other suggestions from other care managers include:
Offer to schedule defensive driving lessons. There are specialists that work with individuals who have lost their license and help coach positive skills behind the wheel.
Call the local police and see if they will visit the driver and offer a friendly warning. One family that did this put a boot on the car following the visit from the police.
The balance of free will and safety with love and family dynamics can make all of this so frustrating. I hope some of those suggested might help you. Experienced.
Caregiving was already hard, but I feel like Covid and the isolation has made things twice as difficult. I hope you are all managing to adapt and have resources and options to help best serve those you are caring for now.
So many things seem to go wrong and fall through the cracks. I have two clients that are alone in their homes and the effort and care of the team is the only way they can safely stay in their homes. These clients are lucky to have the money to afford these resources. I don’t think most people really understand that aging in place brings with it different costs that can be as much (and even more) than a care community.
I’m lucky to have passionate individuals on these care teams that contribute insight and truly care about how we can best serve their needs.
My Aging in Place Dream Team includes:
Aging Life Care Manager: Someone needs to be the lead on medical appointments, follow-ups and health care needs. I tried to manage all of this for my parents and wish I had brought them in sooner than her last year to help. I regret the lost time managing her health care needs when I visited her memory care community versus just being able to sit and spend time with her as a daughter.
Friendly Visitor: There are a variety of individuals who are able to engage, help, and guide through hobbies, shopping, and setting up and helping with Zoom calls to socially distant friends and family.
Home Care Team: Whether it is an individual or an agency with a deep bench, having someone that can help with the activities of daily living as well as ensure they are safe in their home 24/7 has been a necessity.
Daily Money Manager: Someone to pay the bills and manage the home maintenance.
In the past two months, we have experienced an Identity Theft (he gave his banking information to someone that he thought was Apple Support even through he has a Dell); a flooded apartment; phone service outage; a failed car inspection (he has a car that family can use when visiting that was his wife’s and is important to him); yard care needs (this rain has really helped the kudzu grow).
There are many handoffs and follow ups needed to keep the team in synch. We share a digital calendar for one client and the other one has 24/7 in-home care that updates the schedule of visitors.
For both clients we have talked about having them live in a care community. Right now it’s a hard transition with required 14-day isolation and difficult to decide to move someone into a care community where we know Covid wreaked havoc. We recognize that we are the ones helping them lead their lives in spite of all the Covid barriers.
The reality is that you will make the best choice with the information you have. I just realized how much I valued the team of individuals helping support these individuals in their homes lead the lives they had planned. While we are all feeling so isolated lately, I am happy to be part of these thoughtful care teams. Appreciated.
For those podcast fans, please check out Rodger That a weekly podcast focused on the caregiver. Here, skilled caregivers, Bobbi and Mike Carducci offer their personal and practical insights on caring for a loved one with dementia, as well as tips to help caregivers prioritize their own emotional and mental well-being.
Bobbi & Mike interviewed me on how caregiving can be emotionally & physically challenging, but also a rewarding, selfless act. However, it shouldn’t come at the expense of your financial health & well-being.
We discussed a few things I learned as the adult family caregiver for two parents for 5 years, as well as have used to help dozens of families as a Daily Money Manager in the metro-DC area. #Honored.