When off-label use goes bad

SeroquelI remember when they recommended this drug for my Mom a few years back. She had vascular dementia and was getting very agitated. The staff was having a hard time redirecting my Mom. They thought this medication might help.

A recent story in The Washington Post covers some of the issues as it related to off-label use — One of America’s most popular drugs — first aimed at schizophrenia — reveals the issues of ‘off-label’ use. This is just one of a number of stories I have seen about using varied drugs to “temper” (for lack of a better word) the behavior of residents in care communities.

Before this, when Mom was still with Dad in Independent Living, the doctor suggested and prescribed Ativan. It is at least prescribed for anxiety. However, my Mom would refuse to take it so when I knew events might bring on anxiety for Mom, I would put it into her Coke. I must admit that I’m not sure that was any better maybe than prescribing off-label uses for different drugs.

I do know that the one time my Mom freely took Ativan was before my Dad’s funeral. On that one day, she wanted a pill to help with the anxiety she was feeling.

Over time, I learned to better interact with Mom and could usually redirect any pre-anxiety events. After the first year of adapting, I never even considered the need for any behavior medication.

Did I change?

Did Mom change?

Did moving her to a community focused on caring for individuals with dementia eliminate the circumstances to bring on the anxiety?

I will never truly know. However, I do feel that the first year as you and your loved one is adapting to the changes in your relationship, and they are feeling in their lives is the most challenging stage.

Just know that they need an advocate, and the more you know the better. Confessed. 

Lost in Translation: Recognizing the language barriers and today’s caregivers

twopillsOver the past year, I have interacted with at least 20 different individuals who have been involved in the care of my mom in which english was a second language. There were several phone calls where I had a very difficult time understanding the person calling to report on my mom. I also witnessed several times where my mom had trouble understanding her caregiver.

I appreciate the wide variety of individuals who have helped my mom. Luckily, because I live nearby, I could follow-up in person which made understanding the conversation easier.

Usually, this hasn’t been a big issue. However, last fall, when my mom started to have back pain, during the medical consult, I heard that they were going to give my mom “Tylenol.” I didn’t think much about it, but the medicine resulted in her transition into hospice. It was more than a week before I understood that my mom was given “Tramadol” not “Tylenol.” Within one day of the new medication, my mom was unable to interact or control any of her movements and I was totally confused about what had happened.

I now question and ask about possible side-effects even when I just think it’s just over-the-counter. Maybe that would have helped me understand what my mom was being prescribed. I have done this when something new was recommended, but it didn’t dawn on me to ask about “Tylenol”. There are so many varieties of dementia along with other drug interactions that can happen, it’s worth asking the follow-up questions to eliminate any misunderstanding. Suggested. 


Dementia and Pain Medication: A Debilitating Cocktail

poisinLast week, my Mom’s back pain was so bad that she declined to get out of bed. She has complained of back pain on and off for a year, but it was never more than a minor complaint and one that she refused to take any medication to treat when offered. After the basic testing, it was determined to be related to her osteoporosis.

She has a general aversion to taking pills, always has. In order to make sure she got the dementia medication that had calmed her paranoia (Risperdal), we eliminated several vitamins she was taking. After this change, the nurses were able to consistently ensure she got her medication.

Over the past few months I have noticed her shoulders rounding and her gait changing. She still loved to walk and was often seen roaming the halls of the Assisted Living community.

The second day of her pain, my Mom started to cry out when they would help her get to the bathroom. They gave her a minor dose of a pain medication, but within a day, she became almost catatonic. The next evening, they called to ask me if I would like her to go to the Emergency Room. I declined since there was really nothing the hospital could do to help my Mom and I know a change of scenery would only be worsen her condition. They switched the pain medication and only administered it after she exhibited symptoms of pain. Unfortunately, my Mom was now unable to move or speak. She also was refusing food.

The change was so dramatic my first question was if they had over-medicated my Mom. They switched the medication and there was no change in my Mom by day 2 except that she was no longer crying in pain when they moved her. She could only be moved by wheelchair and was unable to even hold a drink to her lips. When I asked her questions, she mouthed soundless words to me.

I follow-up with the head nurse on day 5 and after checking on my Mom they suggest we call hospice and have initiated a consult. I still am not sure if this is a “pain medication hangover” or if my Mom’s dementia has suddenly taken her down to nothing so quickly. Bewildered. 

Related Topics

There are many studies of pain medication and dementia issues. One helpful site listed the Drugs to Avoid in Patients with Dementia.

A key topic of interest to me is the idea that agitated dementia patients feel pain, but can’t verbalize it. I hope you will share any recent studies or news stories you have found on this topic.  The most recent one I found is from The National Dementia Support Program in Australia.

Have you heard of The CARE Act (Caregiver Advise, Record, Enable Act)?

CAREAARPI attended a caregiving support group at my Mom’s retirement community. One of the members was sharing the horror story about the release of her husband from the hospital. I immediately relived the story of my Dad’s hip surgery and the doctor’s discharge plans.

After breaking his hip on the racquetball court, the doctors were going to release my Dad into the care of my Mom. My Dad had surgery and was in the hospital for 4 days. He was in terrible pain and was unable to get himself to the bathroom unattended. At this time, my Dad was around 200 pounds and my Mom was around 105 pounds. My Dad insisted they release him so he could get back to their 3-level town home. As I sat with my Mom listening to the discharge instructions, I stopped the doctor and told him there was no way my Mom was going to be able to care for Dad. Thankfully, my parents were in a Continuing Care Retirement Community, and they had the ability for my Dad to be cared for in skilled nursing while he rehabilitated.

I thought it was derelict for the doctor to release my Dad into the care of my Mom given his needs. At the time, my Mom was initially unwilling to admit she couldn’t care for my Dad. However, at a glance, it seemed very obvious that my Mom would be unable to help my Dad get out of bed and to the bathroom and ridiculous that he would be able to climb two sets of stairs so soon after his surgery.

While my Dad was angry and hated being in skilled nursing, he needed to be able to get himself to the restroom at minimum. Then he was able to finish his recuperation in their one-level apartment.

I’m not sure the new act if implemented will help, but I’m glad to see some light brought to this topic many of us have already faced. Finally, Some Help For Family Caregivers After Hospital Discharges Interested. 


Additional Related Stories:

Support Seniors and their Family Caregivers AARP

Thank you Gov. Fallin, Legislature for Support Marjorie Lyons


The Moments of Clarity with Dementia

magnifyMy Mom is doing better on the prescribed medications. My siblings and I are all noticing that some days, my Mom is very clear and chatty. I can’t say I perceive this as a memory improvement, but a demeanor improvement. On my last visit, my Mom revisited an ongoing topic — she has asked me several times “Why did Dad go first?”

I tell her the story about him saying the men go first. I wrote about this in October, 2012 — my Mom asked me “Who is going to help me when your father isn’t around to help anymore?” I told her that him dying first feels like how we moved from place to place — Dad always went first when we he was reassigned. We would stay behind and my Mom managed to sell the home if we owned it, pack the house and transition the family to the new residence.

My Mom chuckles at my analogy.

Many people marvel that my Mom can still be so with it. In my Mom, her dementia presented a combative woman who wouldn’t respond to reason and behave in very unbecoming ways. I recognized that her agitated behavior coincided when she didn’t seem to really know or understand what was going on. If human nature responds with fight or flight — my Mom is a fighter for sure.

On the new medications, you would just notice that my Mom has absolutely no short-term memory and has difficulty managing her day. She still gets dressed, albeit in the same outfit daily and likes to go run errands when I visit. She is much slower and naps a lot more now. I have not had any recent instances with jumbled or nonsensical sentences. Remarkably, she is also not challenging the presence of the personal aides and on several calls to my Mom she will report that she has a “friend” visiting.

The planner in me wonders how long this stage will last. Right now the daughter in me has decided that I will just enjoy being able to spend time with a loving mother. Savored.



The Truth Lies Between What I’m Told and What I See

eyeglassesOne of the most frustrating factors of being a family care giver to someone with dementia who lives in a community is the amount of information you just don’t have. You want so badly to ask your family member how they are doing and what’s been going on, but they don’t remember. It took me at least a full year before I stopped asking and wanting to believe my Mom’s reports on her day. It finally sunk in that my Mom probably wasn’t eating breakfast after she was moved into Assisted Living. Some days she still tries to tell me she cooked herself something on the stove. For those of you familiar with Assisted Living, they typically don’t include cooking appliances.

Just last month I shared that I drove to my Mom’s apartment at 10:30 PM one night because she had me convinced something happened and she was being moved out of her apartment. Such a rookie mistake … that happened to someone who’s been dealing with this for several years now.  I still laugh at myself over that one.

The personal assistants that have been added share small tidbits with me when I stop by and ask, but I know most of their days are spent sitting in the hallway waiting for my Mom to emerge from the apartment. I would love to have a GPS device on my Mom to see what her day looks like and where she goes. I know she’s sleeping a lot more and when there are events with music, the personal assistants say they can usually get my Mom to join them.

We are worried that one day we are going to get a notice telling us that we have to find a new home for my Mom. I was called in to discuss my mom’s “unbecoming behavior” and told if we can’t get things working better, we will need to look for a new home that can better care for my Mom given her mobility and dementia. So far we have worked with the community to make the following changes:

  1. Adjust the medication. We are told she is now getting the highest doses they can administer to a resident in Assisted Living. It can take several weeks to see if the medication helps manage my Mom’s behavior. I appreciate how the community phrases the concerns as a “dignity issue.” My Mom seems to be mellowing and I haven’t gotten any reports in over a month about any “unbecoming behavior”.
  2. Hire personal assistants. As I have shared, my Mom really doesn’t like and resists the idea that she would need help. However, we are paying for personal assistants from 1 – 9 PM daily. We had to make changes to the individuals assigned and I’m glad I’m able to stop by, meet them and speak with them. Right now it’s the closest I can get to having some insight into my Mom’s days.

Right now, things seems to be improving. However, if they start to digress, we may have to look into checking my Mom into a psychiatric hospital. While not something that happens in every case, many have had to seek this solution to find better medications manage through this stage of the disease. I do believe that if we go that route, the only option for my Mom will be to return and be moved into the secure memory unit. There is some issue with the doses of certain medications and Assisted Living,

We are doing our best. Dementia is just a cruel disease.Endured. 

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.

Even my 11 and 16-year old Forget and Misplace Things

kidthinkFor those of us watching a parent with dementia we battle our internal fears that we are fated to follow in their footsteps. The medical community doesn’t have all the answers, and from the research I’ve read as well as based on what Dr. Oz told me when I appeared on his show, I have more control over my senior years than heredity. For several years I’ve been making incremental changes in my life to guide my footsteps in a different direction than my parents — both medically and socially.

I was catching up with a girlfriend who mentioned she was worried because her husband seemed a lot more forgetful lately. I told her that forgetfulness doesn’t always equate to dementia or mild cognitive impairment. My kids forget and misplace things. My friend commented that the difference must be that the young don’t fear that forgetting something means they have an early sign of dementia. We laughed recognizing the truth in her comment.

I recently read two articles that were helpful. The first Forgetfulness Not Always What you Think by WebMD. We can expect that recalling information may take longer and forgetfulness alone doesn’t mean dementia. My Dad’s personality change was very noticeable and my Mom had more subtle personality changes. These symptoms appeared years before any diagnosis.

A recent article published by AARP entitled: 8 Treatable Conditions That Mimic Dementia. It’s worthwhile reading. If not for you, then for those other people in your life that may not realize the complications medications and other conditions can present.

I still hear from many people who believe getting forgetful and mean as you age is normal. We can all recall the one neighbor from our childhood who fits this stereotype. Dementia is complicated and the disease makes it hard for the person to recognize as well as human nature makes it difficult to accept the limitations it might bring to your life. I hope to educate as many as I can on how to recognize the symptoms and manage when you may be a witness to something you can’t control. Experienced. 



Dementia: Episodes of Unbecoming Behavior

snakebiteWithin days of the Assisted Living facility calling me in to work through how we might better help my Mom, she was involved in an incident where another resident ended up on the floor. We received few details, but I have witnessed, and the staff has reported that my Mom is getting more combative. She has periods where she is verbally abusive and physically threatening. She’s now about 5’7″ and 110 pounds, but is able to command a larger presence and scares other residents.

My general rule has been to tell my Mom once what is happening and what has been reported to me. The discussion is always difficult and she is always frustrated to hear that I have been told something about her when she was not present.  I totally understand that emotion.

However, even when she was present, she doesn’t remember. My Mom will argue each item and demands written documentation. When it is provided, she rips it up. From that point forward, I work to implement the changes and redirect conversations or frame them with information that my Mom will accept.

Within the past year, I have met several residents who will share how my Mom was one of the first residents that welcomed them into the community. However the dementia has changed her and now, she’s the woman everyone avoids.

The head nurse calls to let me know the doctor is going to meet with her and look into some new medications. The Ativan (by itself) can’t help anymore.

Just when I think I have absorbed the changes in my Mom, something new emerges. Rattled.  

The Battle to Keep My Parents Together Has Begun

itsalwayssomethingThe Assisted Living community has tried three times to get blood from my Mom and she’s refused each time. I hear the haunting voice in the back of my brain telling me that if my Mom starts to be combative on a regular basis, she is going to be moved to the next level of care … the “dementia” unit.

The only time this was mentioned to me was a few weeks ago when I was asking the head nurse if they could reconsider how they might get my parents to eat lunch. The nurse mentioned that my mom has been somewhat ornery when it comes to eating and was making it difficult for my Dad to eat in the lunchroom. This issue has mostly resolved and now my Dad usually eats lunch on his own, and my Mom stays in the apartment and makes herself a peanut butter and jelly sandwich.

My Mom has always been the one we have to navigate around. During the move to Assisted Living, the doctor prescribed a pill that reduced my Mom’s anxiety (Ativan or generically called lorazepam). She took it temporarily, but she has been much more agreeable, even well after being taking off the medication.  They only prescribed it for use during the initial transition into Assisted Living.

As I hang up the phone, that little seed of fear lurks. My parent’s are the happiest I’ve seen them in years together. I told the nurse I would get my Mom to a lab to get her blood work done. It’s always going to be something. Unfazed.