Tag: Dementia

The Inability to Recognize Dementia: Info I Could Have Used YEARS Ago!

When I’m asked about my care giving journey, I tend to gloss over the first few years. They were incredibly tough because my parents didn’t recognize they had dementia, The term is called anosognosia.anosognosia

I wish I had know this YEARS ago. I hope it helps you to know that it is a medical term and is very common. Anosognosia affects up to 81% of people with Alzheimer’s and some studies show up to 77% of patients suffer anosognosia after a stroke. My mom had a stroke and my dad had Alzheimer’s.

When my parents were still driving and trying to manage their household and checkbook, we were very concerned and told our parents. They were dismissive, angry, and became paranoid. It all makes sense to me now.

Back in August, 2012, I wrote a blog wondering How Many Times Can you Hear You Have Dementia? I kept trying to find the right doctor, or test results to help my parents understand why we were worried for their health and safety. I finally realized they couldn’t or wouldn’t accept the diagnosis. From that point forward I just managed around the issue and worked in the background to find ways to help my parents. It lead me to understand why the first doctor that diagnosed my dad told me “sometimes you just have to be sneaky.” I finally realized what he was trying to help me understand and learned how to help without being disrespectful.

Trying to help someone with dementia who doesn’t recognize they have it, and are unable to, can be very difficult. This blog started so I could vent, as well as share what I was learning. I’m surprised and pleased to know there is now a term for it, but also, gotta tell you a little frightened by this information.

Because I was worried I might end up in my parent’s shoes, my husband and I set up our estate plans to put in allowances for these issues and I have letters to myself the kids can mail to me. I am hoping that history won’t repeat itself in more ways than one. Thank goodness I’m a lifelong learner. Absorbed. 

When Dementia Steals Away “Home”

Kate Swaffer is living with a diagnosis of dementia and has eloquently taught me and given me a better understanding of what it’s like to be on the other side of this journey. I immediately connected with this post that speaks of the term “hiraeth” which means homesickness for a home in which you can never return.

On every visit with mom, I interact with 2 or 3 residents who are trying to get “home.” Some want to know if I can give them a ride, some want to know when family is picking them up, and some just want to know where home is. I also have frequent conversations with mom about going home, and it breaks my heart each time. I know for many moving into dementia, even home might not be “home” all the time. Shared.

Hindsight is a Wonderful Luxury

momsunglassesday2I’m reusing the words Remember Me shared with me because in the cycle of grief and guilt caregivers seem to float through endlessly, hindsight is truly a luxury. We often saw things that should have been a warning sign, but didn’t recognize the significance. We may have been sure something was wrong, but didn’t know how to proceed. We tried to help when we saw things failing, but my parents were not interested in the help and usually appalled at the suggestion it was needed.

I finally started to understand how much the independence meant to them when we had to come in to help because they were unable to manage any longer. Because of the dementia, I wonder if my parents just never recognized, understood, or believed that they were failing to manage in their day-to-day lives. Dementia is torturous in so many ways to both the individual and their loved ones.

I’m a huge advocate of goal-setting and one of the things Remember Me recently posted was a list of aspirations to develop a life alongside being a Care Partner.  As I struggle to direct the ever-changing team in place to help care for mom, I think coming up with a similar list will do me and mom a lot of good. Encouraged. 

The Lingering Nuisance of Tax Issues

taxesI have seen several reports that discuss that symptoms of dementia can be present up to ten years prior to any type of diagnosis. I know that it took our family several years to finally get my parent’s diagnosed officially. That was well after my siblings and I held two interventions to share our concerns around our parent’s living and driving arrangements.

We noticed behavioral changes, witnessed problems handling home maintenance, and a growing number of dings on their car bumpers. We were primarily concerned for their health and welfare.

Today I had to follow-up on an state tax notice about returns not being filed. The notice is for returns related to my mom’s antique repair business. It’s also covering the period of 2005. I know in the past my sister had to chase down tax issues for my parents.

Two weeks ago I placed the first call. After navigating the phone system, I finally reach a person who tells me they can’t help me because they need a copy of the Durable Power of Attorney giving me the ability to represent my mom. I faxed it in and followed up today to resolve the issue. After 40 minutes in a variety of queues and in speaking with two different divisions of the state tax department, I finally reach the person who can help me resolve the issue.

When she starts asking me for my mom’s address and phone number, I let her know my mom is in the care of a dementia community and is unable to speak on her own behalf. I also tell her I have only been doing mom’s taxes for 2 years and never gotten a notice until now.  I tell her that we no longer have copies of the 2005 taxes because we followed the guidance that says you keep them for 7 years. I just ask her what I need to do to resolve the issue.

The representative is very kind and asks a few follow-up questions. She tells me she is going to resolve this issue. Apparently, mom was sending in the money, but never sending in the Sales and Tax Use reports that were to be filed with her payments.

I wish there was something I could have done when I first noticed problems, but I’m not really sure it would have changed the outcome. I am just glad this was a relatively easy lingering tax issue that is now resolved. Completed. 

Flirting with Normal

brunchwithmomThis past weekend my sister came to town to visit with Mom. On Sunday, we took her out to brunch. It’s been a while since I have gone to a sit down restaurant with mom. The addition of the wheelchair and mom’s declining health made it difficult for me to confidently have an outing with mom alone. I knew it would be easy to manage with my sister, so we made a reservation for brunch.

After we were seated, we just chattered away. My sister talked about her jobs as a waitress when she was in high school. She remarked that she hadn’t thought about those jobs in many years, it must be the visit home that sparked the memories.

Two of mom’s favorite meals are fried chicken and waffles. We were pleased to find “Chicken and Waffles” on the menu so we could get her both! We were surprised by how much she ate.

While my mom didn’t talk very much, just having all three of us at the table was pleasant. My sister and I could keep the conversation going and my mom was tickled by a few of the stories we could share. Life for a few minutes felt very normal for all three of us. Delighted. 

transportchairDear Ellen: Thank you for loaning me the transport chair. We made good use of it and I know it will come in handy for many more trips. You are a blessing to so many people. <3

Mom would never dance if she lived with me.

I have an ongoing battle that rages on in my brain about where mom should be. I wonder if we should have moved her in with us, but recognize that caring for my parents has already overshadowed some major segments of my life. I want to do what’s right by her, but also want to be a parent that’s available to my children. Since I was a teen, my mom had told us she never wanted to live with us or be a burden. Now that she has dementia and my dad is gone, I move through an ongoing cycle of joy, grief, frustration, guilt, and overwhelm.

We took time finding the right place for mom after recognizing the community that she was in wasn’t the best place for her and her changing needs. My mom’s primary care assistant told me about the gentleman that comes in to visit and that always dances with my mom. WHAT?

My mom was not a dancer and I was thrilled to see her get up and dance. That is something that would never happen if she lived with us. I continue to talk myself through why we made this choice and why it’s the right decision for mom. It was fun to see my mom dance. Revisited.

Finding ways to stay engaged with mom is getting harder

drawingI think my mom’s favorite activity now is napping. She has really slowed down over the past few weeks. In hopes of having a visit that didn’t involve me watching her nap, I brought activities with me.

So far I have tried:

  1. Adult Coloring Books. My mother-in-law introduced one to our family when she gave one to my daughter as an activity on our flight to the church mission trip in June. Now I see them everywhere.
  2. Manicure. On my last trip we sat outside and I removed the remnants of the red nail polish she got in early July. As soon as I was done and she inspected my work, she took a nap.
  3. Pictures. While I always have a few pictures from the week on my phone, my mom has a hard time understanding what I’m showing her so I usually pull out her scrapbook and retell stories from our past.

I follow my mom’s lead and try to ensure she is comfortable and happy. It’s all I can do as I struggle with the fact that she continues to live in a state that she asked me to never let her fall into. Many of us fight the angst that we are failing to fulfill our loved ones wishes, while watching them slip deeper and deeper into dementia.

When it’s my turn, I sure hope we have more options on how to manage the lingering end of life when we are no longer leading the life we imagined. Prayed. 

Dementia is a family affair

KayandCarlyMy daughter and I were recently interviewed for a show called We Choose Respect. We shared our story about how to watch, care, and manage through life when you have a loved one, in our case, my parents, with dementia. This is the second interview I have had in the past month in which sharing this journey with my kids seems out of the norm. I didn’t really recognize it, but I know I made this decision purposefully with my husband.

Many parents choose to shield their children from adult topics and issues. In this case, I just don’t know how I would have managed. We spent a lot of time with my parents and my kids witnessed some bizarre things. They also lived through mom running out of the house to help my parents late at night, supported me through visits when things were really wacky and my parents were fighting to maintain their lifestyle, and they have overheard discussions with my husband and siblings about what is going on with “nana” and “pop-pop.”

I believe that having my children understand this journey, helps them understand how to be a loving, respectful, adult child, even when the roles start to reverse. I sure hope my kids won’t have to help us. However, knowing that 7 out of 10 adults that turn 65 will need 3 or more years of long-term care means that the odds are not in our favor. As a country, and a culture, we really don’t know how to address the fact that most of our parents didn’t want to linger, but the reality is that we really don’t have any choice but to keep them safe and comfortable.

I’m humbled by my daughter’s ability to absorb and incorporate what we have all learned on the journey to deliver loving care with grace and humor. As she so eloquently stated, “If someone you love forgets you, well, you remember them, and you can love them as long as you cherish those memories” Cherished. 

To hear this interview, you can find it on itunes, or listen from your computer at http://www.wechooserespect.com/

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.

Pop-Pop would be proud

My son, who has just graduated high school, joined me on my visit with mom today. He is leaving tomorrow for the outdoor National track meet. He worked hard to qualify and proud seems too small a word for me to describe his accomplishments.

When he tells my mom, she quickly responds “Pop-Pop would be so excited for you if he were alive.”

I choke out a response about dad being able to cheer him on from above. My mom has never really talked about dad. It was heart-wrenching the first few months when she just wanted to know when he was coming back to their apartment. Now, she fully grasps that he is gone and her comment was a wonderful response to a momentus accomplishment.

My moms comment is so clear, normal, and true. I got a glimpse of the  gracious, witty woman who loved and admired dad too. Awe–struck.

The Sneaky Poke and a New Connection

handforpokeI’ve had to make an adjustment to how I visit my mom. The community is dedicated to memory care so on any visit, I could be walking in to find a resident who is frantically searching for their dog and asks for my help, or one that has just decided to follow me and is trying to walk out the door with me when I leave.

I’m slowly getting to know the other residents. A few immediately made themselves known to me, but many of them don’t speak so it takes time to get familiar with the residents. On a beautiful day, we go outside to sit under the gazebo. One resident settles in next to us but doesn’t speak. A second resident walks by and we invite her to come join us. As she gets ready to sit, the first resident reaches out and pokes her right in the behind. I giggle and make eye contact with the woman who did the poking and she winks at me. She tries to speak but garbled words emerge but she continues to smile at her prank.

Thankfully, the second resident doesn’t mention it and joins as we discuss the beautiful weather. I saw how the disease changed my parents in two very different ways. Now I’m seeing a whole new host of behaviors. Some of the residents are delightful and always smiling and others are argumentative and confrontational.

For years, my mom swung between behaviors and I learned Three Go-To Tactics for Dementia Caregivers that served me well. I believe the lion emerges when she’s frightened and confused. We worked with her doctor to find a medication that would help as well as a found a new community that is dedicated to supporting those with dementia.

I grew up moving a lot and learned to take everyone I met as they are and quietly watched to see how they behaved. My habits have had to change and after watching dementia in my parents and in others, I don’t believe that man who repeatedly bangs his walls with his hands had a violent personality before or the woman who will come up and tell me to go sit down was bossy before dementia. It’s such a cruel disease that steals so much from all of us. Acknowledged.