8. Don’t blame them for the changes in their behavior.

changeThis is a deeper dive into the eight item from my list of things to never say to a person diagnosed with dementia

There is a learning curve when it comes to spending time with your loved one who is changing because of their dementia. It’s subtle at first. While I felt like something was wrong with my mom, most of my siblings just thought her behavior was normal. She could be very prickly, so why did I think her angry outbursts meant something was wrong?

When she started to challenge us on things that she didn’t remember and didn’t want to accept, we wondered if it was a personality quirk she had hidden from us for decades. What we didn’t know was that her brain was changing which will result in new behaviors.

The hardest time to accept this is early on, when there are small changes to thinking that have occurred. Because my mom could never absorb the fact that she had a form of dementia, she took our feedback very personally. She really believed we were making up the stories we would tell her about past events.

I don’t feel like we ever blamed her, but do recall that she felt like we were. I blogged about my mom saying so several years ago. While we thought logically explaining that she was having trouble navigating some things, she was very angry and felt like we were blaming her. We just wanted her to allow us to help her.

However, it took me and my siblings some time to understand, absorb, and adapt to help our parents. I have dozens of posts where I took things my mom said to me very personally. So much of mom still seemed like mom. On the other side of my journey, it’s easy to recognize. While you are in it, be kind to yourself, and your loved one. Reflected. 

When Change Becomes a Downer

leafchangeAs an Army brat, I learned to embrace change. While I hated leaving good friends, I could quickly jump in and find new friends in our new location. It has never really been a scary concept for me and when it doesn’t happen, I quickly find I grow restless. I love to learn new things and challenge myself, and change helps foster that environment for me. However, caregiving brings a host of change for everyone. Sadly, it’s now mostly un-positive changes.

For the first time I’m recognizing how much the changes are depressing and discouraging me. My mom is now in a wheelchair full-time and too weak and unsteady to ever get back on her feet.  While she was in hospice and “graduated” out, it just seemed to bring on the need to change equipment, medications, doctors, and her schedule. While my mom is not rapidly declining, she is withdrawing and less-interested in doing the community activities as well as the little arts-and-craft activities we would do together.

She’s moving in and out of varied issues from temporary blindness to mid-dinner regurgitation. We never seem to find a root cause. When she woke up one morning with a very swollen and bruised hand, we just focused on treating for comfort since mom could never really report what occurred and it did not seem to be broken.

Change used to come with the potential for something better. Unfortunately, I recognize that almost ever change I’m facing comes with something less-better than it was before. I recognize what I can’t change, I’ve taken a huge leap with MemoryBanc to change the things I can and help other families on this journey, but I admit that some days, managing as a caregiver can be  incredibly discouraging. Confessed.

The evolution of style in my mom with dementia

nailsOne of my mom’s caregivers dotes on her. She works to make her look good and more often than not, mom now has on blush and lipstick and is put together. Before the 4th of July, my mom told her caregiver she had never worn red nail polish. She said my dad didn’t like it, so she never wore it. I know in general, my mom never wore nail polish at all. I had tried on and off to give her a manicure or do them together, but my mom never enjoyed the process. Only later into her disease did she appreciate having someone do her fingernails for her.

For the Independence Day holiday, this caregiver painted her nails red and added star and stripe designs as an accent on two of her nails. My mom liked the red nail polish but is a little put off by the extra design. However, she accepted the addition and is still sporting her fancy nails.

It’s nice to see that mom accepts getting her nails done, having someone put on makeup and even try new hair do’s. She didn’t allow these luxuries before, but now it’s a kindness that she accepts. I’ve witnessed so many changes in my mom over the years, these are changes that I’m happy to see.  Pleased.

Mom (or Dad) is Acting Differently, Should This Concern Me?

roundaboutYes! I am an adult family member who has cared for two parents. My parents had complete estate plans in place and did everything their financial and insurance advisor suggested. Helping them was initially incredibly difficult for a variety of reasons. Many financial institutions create roadblocks when you need to use the Durable Power of Attorney–I’m still waiting for Wells Fargo to accept mine on my mom’s CD account.

Any change in behavior by a loved one should start by a visit to the doctor. There are a variety of things that could cause changes like medication, lack of sleep, or a variety of medical conditions.

My parent’s both were eventually diagnosed with dementia. My mom’s symptoms started to present themselves to me when she was in her early 70s; I started to notice a change in my dad when he was in his late 70s. Their needs changed my life in unexpected ways. If you have suspicions, you will find information and suggestions on how to deal with the possibility of dementia by following the blog on DealingWithDementia.org. You can visit this page for a deeper explanation of dementia and its many forms.

My mom dismissed my concerns when I went to the doctor with her. After managing as the medical advocate for both of my parents, I know and have had many doctors and nurses confirm that family is the best resource. Often, dementia won’t be diagnosed until later in the disease progression and early treatment could help slow the advance of the disease. So getting an early start is beneficial to everyone.

If you are noticing changes, be mindful of what you are seeing. A loved one could be experiencing something that is very treatable.

Looking back, I now recognize so many issues and signs that alerted us to mom’s dementia, but it was a long difficult road to even get to a diagnosis for a variety of reasons. The biggest one being my mom and dad fought to keep their independence fiercely. Ignoring issues won’t make them go away and letting them linger may cause more harm than good. It will also help to involve an estate attorney so you will have the tools to help mom/dad if they are no longer able to help themselves. You can also have a discussion on they can guide the many choices that need to be made about how they want to live … and die.

Missing the Mom That’s Sitting Beside Me

momsdayteaThe holiday’s always bring melancholy for me and this Mother’s Day was no different. My church does a Mother’s Day tea and asked us to wear a hat … the bigger and bolder the better. That is a picture of me with my daughter and mom. We spent the early afternoon decorating our hats and arrived to enjoy a normal moment. We had finger sandwiches, tea, cookies and tarts and listened as one of the members played some of my mom’s favorite tunes on the piano.

My mom was a very good piano player. At one point in my life, our basement held two piano’s and my parent’s would spend the evening playing duets. When I was in middle school, my mom was the church organist. She stopped playing the keyboard in her apartment a year ago and doesn’t remember being a piano player anymore.

My mom’s talents have slipped from her grasp. She was an antique dealer, china restorer, bridge life master and taught hundreds of adults how to play bridge. She raised four kids and was very active in the communities we lived while she supported my dad through his military career and beyond.

While she can’t manage these tasks anymore, just getting out and enjoying a simple social event was an accomplishment for us all. I recognize it as the new normal for us, but also am reminded of all we both have lost as dementia steals away my mom. Reflected. 

When is it time to make changes?

optionsThis is one question I get frequently. My answer will always be “NOW” since you are asking me the question, but typically the response includes five reasons why the change can’t be made. Once you have verbalized the question, you must acknowledge that you probably already know what the real answer will be. It’s just not easy to help a loved one make the changes when they need to or better yet, before they need to be made in haste. Making the change before it’s required gives you a variety of options.

Our parents told us they had a plan, started to execute it, but then stalled when the big changes needed to happen. They purchased a place in a Continuing Care Retirement Community (CCRC), but always treated it like a vacation home that was visited a few days a week. They kept their “downsized townhouse” and would share the “milestones” that would trigger their move into the CCRC apartment full-time. The milestones came and passed.

We were thankful a doctor had my parent’s license’s suspended, because they refused to listen when all four of us kids sat down with them and suggested it might be time to give up the car keys. We did this twice over a two-year span. We eventually had to be sneaky and hide the cars because my parent’s continued to drive even after their licenses were suspended. They tore-up the suspension letters and kept their licenses. When we found them driving and asked them if they realized what they were jeopardizing by driving without a license, they would open their wallets and glare at you like you were a bald-faced liar.

Looking back, you realize how progressed their dementia was well before it was ever diagnosed. The family notices first, whether its a personality or a behavioral change. We pushed to get them to a doctor that could provide them with more than the mini-mental exam most often used by general practitioners to determine if a patient might have dementia. Two years after my father was diagnosed in a moderate stage of Alzheimer’s, he was scoring 29 out of 30 (27 and above is considered normal) on the mini-mental exam.

As my parent’s declined, their pursuit of independence and maintaining their current lifestyle grew stronger. We worked with the retirement community to move them into Assisted Living after they determined my parent’s could no longer safely live in the Independent Living community. Had my parent’s accepted a caregiver when they lived in Independent Living, it would have delayed a move into Assisted Living. They refused to accept this change and were forced to move. We negotiated two weeks to coordinate for the move and the community notified my parents they had three days to move into the Assisted Living apartment. It was a herculean effort that could not have happened if I didn’t have three other siblings. We were fortunate a larger room in Assisted Living was open when my parents had to move.

When my Mom kept misplacing her purse, I opened up a new checking account so that she could keep a checkbook in her wallet, but not jeopardize their retirement income.

Unfortunately, in my experience, all the changes were made late and were incredibly stressful. In hearing other’s stories, I know we are not unique. Most families have to wait for a critical incident before any change is considered. Once you make the change, you wish the change had come sooner.

I was physically ill days before we had to move cars, move my parents, and introduce a caregivers. I felt immediate relief when the change happened and wished it would have come sooner. My parent’s also benefited from the change.

I believe from the information I have read, as well as from my experience, that the earlier the change happens, the better the road for everyone involved, especially someone with dementia who progressively has more difficulty with change.

Everyone and every situation is different. I only hope that when you start asking these questions, you will consider the consequences of not making the changes now. Hoped. 



The Merry-Go-Round of Caregivers

merrygoroundAs soon as my Mom became bedridden, we brought in extra Personal Daily Assistants (PDAs). In the course of two weeks, we have had more than half of the caregivers assigned removed from the case due to other issues having nothing to do with my Mom’s care. It’s frustrating. I have called the agency several times to express my concern with all these new faces to a woman who has dementia.

Not only is my Mom trying to cope with fact that she can’t get out of bed and walk around the community, but we have additional new faces coming in from hospice. This is a lot of change for even me to handle. My Mom does not manage change well and each caregiver has a bit of a learning curve in working to find the right way to work with my Mom.

Thankfully, my brother came to town this past weekend. He’s a Human Resources executive, so I consider the timing a blessing. I ask him to meet with the caregivers and determine which ones we should keep. I also call in a new agency. We initially used the one care agency recommended by my Mom’s community. Since I was concerned about all this change, I called in a new agency to fill in for the weekend care. Before I can call to cancel this coming weekend with the old agency, they call to tell me the caregiver from last weekend can’t return. Really … what part of “no more change” got lost between my mouth and your ears?

This is hard enough and now we are faced with finding the right agency/caregivers to best help my Mom. I’m glad I opted for Plan B. It’s difficult to realize that even the best-intention-ed individuals and agencies fall short of what our loved ones deserve. Frustrated.   

Helping Mom Accept the Help She Doesn’t Want

hold handThe Assisted Living community asked that we provide additional support to help my Mom while they work on finding the right medications for her. She has perceived the assistants at different times as a new resident and even a roommate. We asked them to hang back and give her space. When she leaves the Assisted Living community and walks into the Independent Living community, the fact that someone is following her is frightening to her.

Last week, a family friend called who lives in the Independent Living community, and confirmed my Mom’s fears. She was surprised when I shared what was happening and that the community asked us to put the extra assistance into place between 1 and 9 PM daily. The extra assistance isn’t really a choice, but a requirement. My Mom is having episodes of unbecoming behavior and we need to try this or start looking for a new community for my Mom.  Almost two years ago, I blogged about it “taking a village to age them as well as raise them” and realize that this process is a marathon, not a sprint.

We have switched out one of the two women helping my Mom. I initially increased my daily phone calls so I could gauge my Mom’s anxiety. I have also left my Mom’s laundry with the aides in hopes of having my Mom experience that people other than me can help her. I hope it will build some trust, if that is possible anymore.

I initially told my Mom the truth. The Assisted Living community is requiring that we add the personal assistants as well as was working to find medicines that helped her memory and minimize her paranoia. This was a difficult conversation and my Mom argued with me and was very angry that I would “believe” what other people were saying. I let her know I have also experienced her behavior and that was even more unpopular to share than the reports from others.

Now, I tell my Mom the doctor is working to help her memory with some new medications and that the personal assistants are assigned to help ensure she doesn’t faint or collapse with the new medications.

Then, the staff shared my Mom was refusing to take the medication. I reinforced that the pills are brain food and put a note on her kitchen cabinet encouraging her to take the pills.

I know many of us struggle with truth, but as the dementia progresses, constant pursuit to tell the truth and only the truth, in my Mom’s case, is harmful to her well-being.

I’m frustrated that we are paying for Assisted Living, and required to hire personal aides from 1 to 9 PM every day of the week. However, I’m learning from many others that this is common during some of the stages of dementia. My Mom’s not quite ready for the secure memory care unit, but also needs more help than the staff can provide.

I visit on days where I can met up with her personal aides to ask how Mom is doing. They are telling me how they are creating bridge games and share that she inviting them in or allowing them to sit with her at meal time. I’m hoping that my Mom is benefiting from the companionship. Resigned.

Thank you Seth Rogen – Humor is Helpful

sethtestestifyDementia sucks for everyone. It is little understood and robs the afflicted of their memory, independence and usually in the later stages of their dignity.

When this journey started, I had to look up dementia versus Alzheimer’s. I will admit that I’m a little conflicted about how one type of dementia (Alzheimer’s) dominates the dialogue — regardless, I was pleased to see Seth Rogen’s approach to help shed light on the disease.

If you have been reading my blog, you know that I’ve had many situations that while tragic, were downright funny. This journey is hard, and humor helps.

To see Seth’s testimony, visit: Seth Rogen pleads with Congress over Alzheimer’s, slams low-senator turnout. Laughed. 

Some of the Funny Stories (upon reflection) include:

Call us Back so we can see if the Phone is off the Hook

Panty Raids in Assisted Living?

Someone Broke into your House?

My Mom Repeats Herself, But She Doesn’t Have Dementia

Understanding Dementia
Understanding Dementia

I cared for two parents with dementia and in many conversations, I have someone share “My Mom repeats herself, but she doesn’t have dementia.”

I started in the same place, before Mom was diagnosed. You just notice something is different, but you don’t know what it is exactly or what, if anything, you can do about it.

I noticed that my Mom would repeat herself, and my Dad was less talkative and seemed depressed. Both of my parents had changing behaviors which is a signal that something is wrong. When my parents were first diagnosed, I was confused about the difference between Alzheimer’s and Dementia.

The common office test given is called the mini–mental state examination (MMSE) or Folstein test. It’s 30 questions and is really only going to capture someone who is moderately impaired. The only true early detection system will be your own observations of someone who you know well. My parents scored in the high 20’s over the course of two years – even when the administering doctor could tell something was not cognitively right with my parents. A better understanding of their strengths and weaknesses was revealed when they were given a Neuropsychological Evaluation. This test takes around 2 hours.

I hope you will consider that any change in your parents could be an early warning signal to future more complicated issues — not just cognitive. Please know there are many other things that can cause memory loss that can be easily treated. Start with a visit to the doctor and join them. The more you can do early, the better off everyone will be. Warned.

Additional Resources:

Get a copy of Kay’s Best-Selling Book that will help you and your loved ones get things organized to ease the caregiving journey.

Understanding the Durable Power of Attorney

A fellow blogger Butch shared this post. For some eye-opening reading, check out this Forbes article: Are We Underestimating How Much Help Aging Parents Need At Home?

How did he do at the track meet?

trackMy parents have adjusted well to being in Assisted Living. On my last visit, I told my parents I would not see them over the weekend because my son was running in a state track meet a few hours away.  My mom made a note that I was leaving town on her calendar.

When I returned to visit after the meet, my mom asks how our son did at the track meet. I’m surprised and pleased that she remembered this. She had only noted I was out-of-town, not that my son was running in a track meet. Most of the time her facts are so jumbled, I second guess reality. Today, my mom is crystal clear and interested to know how our son did. I was pleased to report he did well and just happy to be able to have a real conversation with my mom.

While I was visiting, I stopped by the medical office to drop off some records.  The care manager tells me my mom visited and requested an appointment with the psychologist. My mom told the care manager she is afraid that something is wrong with her brain and wants to get it checked.

Over the past year, my mom has been with no less than 4 doctor’s who have diagnosed dementia. I wonder if she was so wired to resist and fight, she was unable to really understand or accept the information.  I have discussed these visits previously in I only saw the doctor to discuss your father; Can we see your daughter alone; Can the geriatrician help move our parent’s forward; and How many times can you hear you have dementia?

Simplifying their lives has made quite a change in my mom. Calmed.