I remember the moments of joy when things felt normal. Whether it was taking a walk on a nature trail or having a conversation in which my mom shined through.
I also remember the moments when the loss was so noticeable I had to leave the room to avoid puddling into tears.
I was the daughter. I can only imagine the intensity of loss with a spouse. Finding a way to manage the journey for everyone is the most difficult challenge for both those diagnosed and those acting as care partners.
It’s easy to get distracted by trying to reach for a destination, but as I learned, I needed to be in the moment, not charting out what’s next. That can be difficult in our world that has evolved to an “always on” mentality. I still have to remind myself of this with my friends and family.
This is just a note to be kind to yourself. I made many mistakes, and most likely, you will too. However, there are many individuals that have no one by their side helping them. It’s not an easy road and your loved one is lucky to have you on this journey with them. Be kind to yourself. Reminded.
It’s nice to get recognition. For a fourth year, Healthline has selected Dealing With Dementia one of the Best Alzheimer’s Blogs. I started this blog for many reasons. One was to provide my siblings with insight into the issues I was facing as the only adult child living near my parents. But then it became a way for me to digest what was happening and dissect how I was dealing with it. I have lots of “mea culpa” blog posts. Turns out I finally figured out I learn by doing and I made a lot of mistakes.
Since I’m not one to miss a golden opportunity, I will use this to remind the readers that Alzheimer’s is just one of the five primary types of dementia’s — as shown in the image. It is the most common based on the number of diagnosed cases, but I also know that many individuals are never diagnosed.
The topic of when to move and why is a common discussion as our parents are aging and our friends are starting to discuss downsizing. In general, most people want to stay at home. However, there are quite a few issues to address from predatory service providers, socialization, and fall issues.
The issue that concerns me most are the single individuals living at home who don’t consider how long they might go without someone knowing to call for help. I have heard too many personal stories of loved ones being on the floor for so long it creates an open wound (this can be in just hours in an older adult) or another complication develops that radically changes their health. A wearable pendant with a push button won’t help someone who has a head injury so I also ask those individuals to consider the ones that will call you if a fall is detected. Unfortunately, you may find you are getting called more than you would like, but too many calls is better than zero should you need assistance.
However, I also have a dear client who moved into a community and I see how hard it is for her to make new friends. It’s clear to me that she has lost some short-term memory which can make it difficult to form new friendships. A recent news I read cited that “70 percent of residents have some degree of cognitive impairment” in Assisted Living communities.
With the average age of most Assisted Living communities in the 80s, it’s no wonder that the transition can be more difficult if the majority of the residents are unable to make new friends.
My mother who was the ultimate hostess and always taught me how important it is to make the new person feel welcomed had a very tough time connecting with the residents in her community. As her dementia progressed, she was unable to make connections. The hardest thing to witness was how much the other residents in Assisted Living avoided those with cognitive issues. I get it, but still don’t like it. I think because I have cared for two parents with dementia, I will always be sensitive to the isolation that they must feel and will make an effort to connect. What I don’t know is if my own cognitive changes might make me less compassionate when I’m in my 70s.
So now I’m wondering if moving earlier is better for the individual so they can develop new friendships and be more familiar with the community before they reach the critical time when living at home is just no longer an option due to safely issues or the costs of bringing the care needed to you. I wish there was a better way to determine what is the best option. For now, I think we all work to find the best options for our individual needs Wondered.
I’d love to hear what your family did or how you are making these choices. There is no right or wrong answer I don’t believe.
I didn’t handle the diagnosis of my parent’s well. I thought that hearing a doctor tell them they had dementia would suddenly make helping them easier for me. I finally realized that it was equally devastating to my Mom every time she was told.
For a large majority of individuals with vascular dementia – the type that comes after a stroke – they are unable to recognize their loss. My Mom had no physical changes, and for the first few months thought I was making up the fact that she had a stroke. The medical term is Anosognosia and I wish I knew and understood this when my Mom was diagnosed. She was medically unable to perceive that she had difficulty with her thinking and memory.
In the years since I lived through caring for two parents with dementia, I have found many individuals that don’t understand why a diagnosis mattered at all.
I have had a long-standing discomfort with the share of voice Alzheimer’s has taken. First and foremost is because most people don’t even know it is the most common form of dementia. I didn’t realize it until my Mom was diagnosed with Vascular Dementia, while my Dad was diagnosed with Alzheimer’s.
What I have learned is that the primary types of dementia all come with varied behaviors, risks, possible treatments and care plans. One form of dementia comes with symptoms that present more as a personality change than symptoms of dementia. In general, changes in behavior, mood, and memory should all be discussed with your primary care physician. Knowing more can help everyone and I hope you will help learn more should you be concerned about your own health changes or those in a loved one. Encouraged.
I was really frustrated when I knew that my parents were having trouble managing their household but refused to accept any help. They did not recognize they needed help which is very common for people diagnosed with dementia. And I also recognize I probably came in too strong.
As the disease progressed, my parents started asking me to help. I had backed of and started visiting without an agenda. When asked, I would work in tandem with them or would accept the assignment and transition to a new topic depending on how they presented the task. If we started to work on a task and they grew fatigued or anxious, I would usually ask if we could take a break and go get a cup of tea or take a walk. I had to change so I adapted.
You have probably heard the expression “meet them where they are” but while it seems so simple a concept, it’s often hard to adapt a familiar pattern. As I adapted to be a better family care partner, I started to recognize all the things I was losing. That helped me recognize how difficult it was for my mom and dad as they were also loosing to the disease.
As I work with others diagnosed with varied forms of dementia, it’s much easier for me to meet them where they are. I now see how easy it is to work with them to pay a bill, organize tax papers, and even help them plan for an upcoming luncheon they have attended for years.
My hope is that they can enjoy where they are a little longer. Learned.
Living in the DC metro area has made me numb to politics. However, stories like the recent one FCC threatens carriers with ‘regulatory intervention’ over robocalls are hopeful. However, that means there is still a lot of scammers out there making calls and reaching our loved ones. And too often they are very successful — which is why they keep calling.
The tools I implemented in my own home as well as for my clients no longer work. Many of the calls are sneaking through the protections that used to be so effective.
The reality is that now the ONLY defense is to NOT ANSWER THE PHONE. If you don’t recognize a call, let it go to voicemail. When you listen to voicemail, be careful to discern who is legitimate. That part is tough.
What I see in the homes of my clients that are isolated is how excited they are to hear a ringing phone. Regardless of my recommendations, they generally just answer. The insult to injury is how difficult it is to contest and win the credit card charges when we later find out which ones were successful.
If your loved one is still at home and you can, you might consider posting a note on or near the phone:
The phone scammers are smart and crafty.
Don’t answer unless you know the caller.
Never give out ANY of your personal information.
Don’t give anyone your Credit Card numbers over the phone.
Call me if you need some help following up on: _______________________
Sometimes, all you can do is work to help defend those that need help. Please let me know if you have any solutions that are working for you and your loved ones now. Interested.
My girlfriend was leaving to visit her parents and asked for a copy of the MemoryBanc workbook to help her mom get a handle on the accounts and finances. I gave her two and suggested she show up to her parents home with the plan that they would work through the book together. Most of our parents won’t appreciate us showing up and telling them we think they are disorganized so make it a project you do in tandem for your individual households.
After her mom picked her up at the airport, they return home to find Dad on the floor. This isn’t the first time.
She shared that there was no way her mom could have helped get her dad up, she is younger and in better health than dad but is now exhausted caring for him and growing frail. Her dad is adamant that he wants to “age in place” and won’t considering moving to a life care community.
If you are in a similar situation, here are some things to consider:
If your parent is falling and can’t get up, don’t continue to run over and help them if you are local. Tell them to call 911. I say this because I was local and kept driving over when this happened to my parents. It finally dawned on me that I was enabling them to stay in their home by showing up and making light of the issue when neither of them was hurt in the process. We were lucky that Dad didn’t fall on mom, but in many cases the caregiver is the one that ends up getting hurt. My parents finally recognized it was a big deal that they had to call 911 and made changes.
Suggest your parents get on the wait list to a community of their choosing. They don’t have to move in, but for those that get on a wait list to a life care community, they usually have the ability to go there if they need Rehab or Skilled Nursing. In general, when you are being checked out of the hospital, you only have a few choices of the stand-alone facilities that have an open bed (versus have good reviews). The Life Care Communities generally have better ratings and most importantly, you are choosing where you would like to go rather than having to go to the bed that is open and maybe further away from family and friends.
Ask the individual who is falling if they realize that their next fall could harm their loved one. Most people think of their issue as something that only impacts them and don’t realize that their next fall could start a chain reaction that puts their loved one in the hospital and will also impact their options for daily living assistance.
This is a tough situation and there are a lot of ways to assist and manage toward safer choices. Sometimes, our loved ones don’t recognize the risk to those they love if they don’t make some changes. Experienced.