Category: My Dementia Caregiver Story

What happened to your Christmas Tree?

smallxmastreeWhen I arrive to visit my Mom, I ask her if she finished decorating her Christmas tree. She gives me a puzzled look and asks “What Christmas tree?”

On a recent visit, my son and I helped “put up” a baby potted Christmas tree for her apartment. We added a string of lights that are battery-operated and got out the “jingle bells” to hang on the tree. My Mom asked if she could finish decorating the tree, so we moved on.

For the first few nights, I called my Mom to ask how the tree looked. I usually had to remind her how to turn on the lights and she would say the tree looked wonderful in her picture window.

Today, the tree can’t be found in her two room apartment. I take a tour of the community area’s to see if I can find it. I run into the woman who is the head nurse in Assisted Living. She tells me my Mom had a bad day yesterday. She said my Mom was bringing many of her things out into the community space and was agitated.

I start asking about other cues to my Mom’s health, and she shares that lately, my Mom is having more conflict with people in the community. Almost every time she leaves Assisted Living she creates a conflict. The residents in Independent Living are starting to move events she used to attend because she is making it unpleasant for the other residents.

When I return to the apartment, we do one final sweep and we find the Christmas tree in her bedroom behind a chair. She suggests we just leave it there. However, it’s a real tree and I’m surprised my Mom with a very green thumb doesn’t recognize it. We get it out and set it up on a plant stand. I just not sure how long it will last. Perplexed.

While I try to find reason to why my Mom hid the Christmas tree then didn’t want to pull it out from behind the chair, I remind myself that this disease makes no sense. Was my Mom hoping to leave it there so stuffing the tree behind a chair wouldn’t seem like a really odd thing to do? Probably. Should I feel guilty because I didn’t call her every night and ask about the tree? No! But I will. Deep inside you wonder if some shard of loneliness drove her to hide the tree. However, I continue to remind myself of all things I am doing to love her, support her and make her life as pleasant as I can … without loosing sight of my family and needs. Chanted. 

Do Extroverts Outlive Introverts?

quietMy Mom is calling me up to six times daily now and we have a varied conversation about the mail. On one call she will say in a disgusted voice “I’ve only gotten two letters about Dad’s passing” and then a half-hour later she’s adamant that “I’m not getting ANY mail.” Each time I direct her back to where I stacked all the letters I found dispersed throughout her apartment. Sometimes, it takes several attempts for her to find the drawer where we put the stacked the letters together. On each call, as patient as I can be, I work on finding out what specifically is troubling her as I previously discussed in the Question Behind the Question.

Today, when I asked her who she was expecting letters from she said she hasn’t gotten any letters from her girlfriends. I dug a little deeper and asked her which ones? She couldn’t answer. To my knowledge, my Mom hasn’t had a girlfriend in over ten years. Her closest friend suddenly died in a car accident. She was my Mom’s main confident.

I realize that some of this issue may be stemming from pure loneliness. My parents stopped attending parties about five years ago. On occasion, my Dad would go to big events on his own. Instead, they would extend dinner invitations for friends to join them at their club, but as many of their guests learned, it was an awkward meal and the dinner guests dwindled. Having just one alcoholic beverage on top of their mild to moderate dementia made dinner conversation very difficult.

My parents isolated themselves and hung out together. Now that my Dad is gone, my Mom is very lonely and is struggling to connect and make friends. I’m glad she is in a community, where at least there are activities that she can attend and be around other people.It will be hard to make a new friend with no short-term memory.

However, watching this pattern of my parents has made acutely aware of the need — as well as the research — to stay socially active as we age.

My husband and I are introverts. While my upbringing allows me to walk in a room full of people I don’t know without pause, being around people for extended periods of time drains me. At least I know I will never get bored — I can always find the next obstacle to overcome. Challenged. 

For you introverts, you will find Quiet a very interesting read.

Truth, Lies and Dementia

truthlieLast week I read a blog discussing the ethical issue of using “fiblets” when dealing with someone who has dementia. The author was adamantly opposed to ever telling a lie. My stomach clenched because I have told some whoppers. I suggest there is a very fine line between right and wrong and every person and situation differs – the rule is gray — not black and white.

The first years I struggled with the issue of truth. Telling it only got me into fights with my Mother. She didn’t believe she had a stroke, asked me to stop by to pay bills or even that their licenses were revoked. We eventually had to hide their cars. The full story is covered in Operation Safety Net.

Other issues erupted and we would try to explain the situation — I finally concluded Explaining Just Makes You Feel Better — it didn’t help the situation and usually created more problems and arguments. In most cases, my parents NEVER remembered the event that had created a problem and thought we were liars for repeating the story to them.

The first doctor that diagnosed my parents told me:  Sometimes You Have to Be Sneaky. It took me a while to recognize that he was right and I needed to overcome my “honest Abe” issues and either keep quiet or in the most pivotal moments tell a whopper of a story. When the retirement community was going to terminate my parents Independent Living contract, we created a situation to ensure my parents ended up in the Assisted Living section of the Continuing Care Retirement Community they selected.

I have never lied to parents to make things easier for me. I have avoided topics, reworded responses in order to keep life as pleasant as I could for them. I have never once taken my role lightly or felt that my actions disrespected my parents. My overriding principle is to treat them as I would want to be treated. I hope you all find peace in the tough choices you have to make on this difficult journey. Wished. 

I‘d love to hear from you. Please share your thoughts on the topic. Have you ever had to tell a “fiblet” but did so because it was in the best interest of a parent or loved one?

 

The Choice Between In Home Care vs Out of Home Care

ageormoveI recently attended a session hosted at my Mom’s Continuing Care Retirement Community (CCRC). My parents made this choice more than 15 years ago, however, it’s not like you don’t wonder what it would have been like if they had opted to age-in-place.

“Aging-in-place” is a hot topic now, and in reality there are many “aging” options. In addition to a CCRC, there are local adult care options, many offered by local government and non-profits; in-home care and group home care. As a society, we seemed to have moved away from living with children, but I’m feeling a little guilt about that now. My Mom seems terribly lonely, but I know the move would be difficult on her cognitively.

Had my parent’s opted to “age in place”, we would most likely have had to take my parents to court to gain guardianship. Because they both moved into dementia together, they really didn’t recognize how much difficulty they were having managing on a day-to-day basis. I’m thankful we never had to pursue this option. My parents would have recognized and been very hurt by this process.

This session I attended was focused on caring for a loved with dementia. The speaker shared that those that have a loved one in a CCRC feel guilt while those that care for a parent in their home are exhausted.

I know I’m lucky my parent’s made this choice and can afford it. The support of my parents over the past two years has been overwhelming at times. Now, it’s comforting to know that I’m not responsible for my mother’s care 24/7.

It has me wondering how my husband and I will manage this decision. Nothing is perfect, but given the wave of aging loved ones that is going to build in the coming years, I want to start having this conversation now. Discussed.

Please share with me what you are planning to do. 

Learning to Cry

teardropAfter I had the “icky discussion” with the doctor, I take my Dad home and I tell him we will do all we can to help him feel better. I wrestle with the dichotomy of treating a man with dementia, which will never improve with how to manage through cancer that has made the parts of his life he was enjoying painful. Within a short span of time, he went from slurring to not eating, drinking or even trying to talk.

The past few days have rendered me numb. My husband helped me recognize that my go-to emotion is the lack of any emotion. I turn into a robot and move through my day like a zombie. I have so many questions, of which most are meaningless to ask now. I need to accept, recognize and address my grief. I find myself crying in bouts now.

At church yesterday, our minister happened to speak about lamenting. She did a lesson with the children and asked them about how they express frustration, sadness and anger and they agreed that “crying” was the most popular choice. Somehow, we have learned that crying is an inappropriate response and I know that I learned to quash it from my range of emotions.

While I thought crying was a weakness, I am finding that it is helping me comprehend and shed the sadness and grief as well as my anger and frustration. Dehydrated. 

Coping with Dementia in a Loved One: Imagine they have had a Head Injury

teddy bear head wrappedI have been speaking to audiences on recognizing and coping with dementia in a loved one and I share that the most useful coping mechanism for me was to imagine that my mom and dad had head injuries. For whatever reason, it allowed me to be much more compassionate and understanding when my parents said things that were hurtful or behaved poorly.

I know the dementia is out of their control, but I believe I was feeling as if it was a medical condition they were ignoring or even denying, when in reality, it’s a medical condition they can’t understand and do not recognize how their behavior had changed.

I don’t want to offend those with head injuries or their advocates – I just want to share that viewing my parent’s ailments as a head injury helped me reset my expectations and provide them with the love and support they needed. Visualized. 

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?

Tears of Frustration vs Tears of Grief

so many candlesLast year at this time, my brothers were in town to take my parent’s car keys.  My parents doctor wrote to the DMV regarding their cognitive issues and their licenses were revoked. My parents continued to drive. They really didn’t remember that their licenses were revoked.

I saw my parents say and do so many things that were outside the realm of normal behavior, that I would sometimes end up in tears — however, these were tears of frustration. I was at a loss about how to help my parent’s who were obviously failing, but did not recognize it.

Yesterday was my birthday. For the first time, my parent’s did not mention it. My mom no longer manages the calendar which was her guidebook for the past year. I have been telling myself that my parents are gone — however visiting with them now is pleasant compared to just six months ago. We still have a connection and familiarity and often spend our time chatting about the puzzle they are working on or what we need to go buy at the grocery store. Now they will ask for and easily accept my help.

The fact that they don’t know it’s my birthday reminds me how much of my parent’s I’ve already lost. Dementia is a cruel disease that afflicts us all. Aged.

Finding our Roles as Siblings and Care Givers

thankfulAll four children (and one brave spouse) came to town to help go through the final household items – these were mostly personal or historical documents … the items we just don’t know how to handle. We figured if we did it together, it would be easier to feel confident in our decisions.

What I recognize in looking back on some difficult conversations is that we are all skilled differently and have varied roles to play as we care for our parents.

My role has developed as the primary care manager for my parents. I took the crazy calls, battled with them and witnessed their worst over the past year. The role has changed me. I believe it’s  made me kinder and gentler. However, I realized that I expected my siblings to fill in as I do as a care giver.  That is unfair – I’ve been in training for this role for years and am still learning on the job.

My parents are no longer the people who raised us. We see glimmers of our parents, but they are now both incapable of interacting with us as our parents used too. As they changed, so must we.

We are still finding the balance, but just as I changed to adapt to my parents, I know I need to adapt to understand the changing role of me and my siblings. I know how lucky I am they are all engaged and willing to help. Thankful. 

When Did we Pick Out This Place?

butterflyinflightI’ve become a little obsessed with trying to figure out what and why things stick in my Mom’s brain. My Dad has Alzheimer’s and my Mom has Vascular Dementia. My parents have changed in different ways.

My Dad is much quieter, even solemn now. He was the prankster in the family growing up. Now, he will obsessively pick at lint on the couch or floor, and when he finds trash ANYWHERE he picks it up and will throw it away.

My Mom is more talkative and fills time by reading things or sharing a story about the things in her surroundings. Her stories don’t jive with my reality, but they are tethered to things that did occur in the past.

My Mom has transformed the events leading up to their transition into Assisted Living. Today, She was wondering what year it was that they picked this specific unit and was pleased with their luck in getting one that let them watch the lobby entrance. She felt this place was much better than the prior apartment they had — the one we worked so hard to manage their transition out of and into this apartment.

I remember walking into the apartment with my Dad for the first time. I had to blink vigorously to keep the tears in my eyes. My Dad fully understood what was happening and I watched as his shoulders slumped a little when he looked around the empty apartment. My Mom joined us and complained about every feature the Executive Director mentioned when listing the positive attributes of the apartment.

At the time, I would never have believed that in 5 months, I’d be sitting with my mother who would be saying how lucky they were to get this apartment. Transformed.

Happy 60th Anniversary Mom and Dad

60anniversary
200

I struggle with those events that honor or mark an occasion when I know my parent’s don’t or won’t remember. I’m admitting this hoping I am not the only one that has battled this head game. I manage so many small details of my parent’s lives some days that the slight effort and scheduling to acknowledge the event feels overwhelming.

Then I remember that if my parents could, they would have celebrated this date.

I call to let my Mom know I am coming for a visit. She admits she is still in bed — it’s 10 a.m. I let her know I will be there in an hour. When I arrive my Dad answers the door. I wish him Happy Anniversary, and ask about Mom. She is still in bed, but dressed. She quickly gets up and joins us in the living room. I give my parents a fruit basket and “Happy Anniversary” Balloon on behalf of all their children.

When we talk about going down to get lunch, my Mom begs off. She says she is too dizzy to walk down to lunch. She is talking clearly so I assume she is just not eating enough. We bring her back food and she promises to eat it later.

After lunch we have a nice chat about how many couples make it to their 60th wedding anniversary. My Mom shares how lucky she feels they have been, which is now a staple of her conversation every time I visit. In the midst of the conversation, my Mom states “You need to move me to a smaller apartment after one of us dies. “

Just six months ago, the idea of moving them from Independent Living to Assisted Living was a major concern for me and my siblings. They have easily adapted to their new place that is less than 400 square feet. Now my Mom is already planning on moving to a smaller place.

I’m glad I made sure my parents could celebrate this day together. Rewarded.