Category: Managing Parent with Dementia

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.

Dementia and Disagreements: No one wins

unwontictactoeFor me, morphing from adult child to caregiver has taught me much. One of the hardest adjustments is leaving behind your past and learning that as the disease progresses, no one ever wins disagreements. If a discussion is getting contentious, it needs to end without anyone emerging “right”.

This was tough for me to learn because in our family, debates and the exchange of ideas was a tradition at our dinner table – even into adult hood. As mom’s disease progressed, frank discussions, or any disagreement brought out the lion. She would just become combative. Medication has helped and she is much less suspicious and disagreeable now.

It took me time to learn, but I began to redirect, let go and change the topic when a disagreement was coming. I’m not perfect at it, and on a bad day, I still struggle to overcome the old patterns of our decades-old relationship.

While the behavior changes in my mom felt personal, I never felt that way with my dad. You constantly wonder if the disease is just erasing a filter and their real personality and nature is emerging. As my mom has progressed into the disease, I have seen so many other changes that I’m convinced the combative and disagreeable woman my mom can become is not a personality quirk that she hid from me for many years.

In the first few years of the disease when we just suspected something was wrong but had no medical confirmation, I had a lot of arguments with my mom. The inability for us to have a disagreement without being disagreeable was one of the reasons I was sure something had changed with my mom.

We watched and witnessed many changes in our parents and worried for their health and safety. We finally learned that no one wins with dementia. Loser

When you are moving into a disagreement, consider:

  1. Emotions linger so avoid becoming angry or confrontational.
  2. The loss of short-term memory works to your advantage. Consider excusing yourself and going to the bathroom to wash your hands, when you return, you can start a totally new conversation.
  3. Emotions spread, so arrive with a smile on your face and a relaxed attitude.

When a visit with mom goes bad – Is it me or is it her?

pushI had a terrible visit with my Mom. Things had been going so well and while I was saddened by her decline and inability to remember me, she has been pleasant to me for several months. It made me wonder, was it me, was it her, or a little of both?

She was happy to see me, but started to get contentious over the ice cubes, her laundry, the trash can liner. When I told her I started a load of laundry when she was finishing up her BINGO game, she challenged that I would be so “presumptuous” as to take her laundry and put it in the washing machine. When I told her it was in the laundry basket, she backed down. When she wanted ice cubes and there weren’t any in the freezer, she wanted to know why I took all of the ice cubes. When she saw trash in the garbage can without a liner, she wanted to know why I put trash in the can without a liner. I hadn’t done any of those things, but had simply arrived and started a load of knowing we could finish doing it together.

I recognize how frustrating this disease must be to the sufferer. My Mom has always been independent and resourceful and now she needs help. She doesn’t like it — I know I might not do so well under the same circumstances.

I marvel at her ability to easily and succinctly chide me for a perceived wrong and then be unable to finish a sentence when we are chatting about the family.

As I was leaving, I wondered if somehow, she could feel my frustration today. I thought I left my worries at the door, but did I somehow move too fast or rush her through a task that just made her mad. I remember something Bob DeMarco wrote about his mother Dotty who would say “No Push, Push” when the pace of activity was too rapid for her to process. Had I moved too fast today?

Lurking in the back of my mind, I wonder if she forgets I’m her daughter and just thinks I’m messing in business that isn’t mine to manage. Contemplated.

Five Wishes and Ethical Wills

fivewishesIn facing the loss of my Mom’s recognition of me, I’m left to wonder how I will manage through the final years of my life. I have felt a weird shift to my psyche now that the woman who I am the adult caregiver for, no longer knows me. She politely accepts my help and quizzically looks at me when I arrive with a case of Coke. I can tell she is wondering how I know she likes Coke when she has no recognition of me. Thankfully, she is gracious when I offer help but finds some of my requests a little too personal and politely rebuffs my suggestion. I am moving into another new phase of this hideous disease and learning to adapt.

I’ve been thinking about one of the gifts my parents gave me when they wrote a personal letter about the end of their life. They did it when they were in their fifties. Today, this falls under the description of an ethical will. There are many varieties and definitions behind this document. I consider what my parents did for me an incredible way to remind me of their values as well as encourage me if something were to happen to them. I was 20 and still in college, but was the last child at home over the summer and under their roof and care. During this time, my parents were traveling the globe. It was part of my father’s job. As the military spouse, my Mom was expected to make the trips with him. My parents wrote up their personal wishes should something happen to them on one of their trips. My Mom would always remind me where the hand-written letter was and that they left a blank signed check in the envelope.  It wasn’t the will or durable power of attorney, but a note that expressed their love and hopes for me.

One summer, my Mom sat me down with the envelope and went over the information with me. She really wanted me to know how to manage should something happen to them while I was still in college.

I’m amazed at how much the school of life has educated me. I watched both my parents deal with a parent who had dementia. I know they never expected that fate would befall them.  When it was time to look at their Durable Power of Attorney and Medical Directives, I realized what a gift those earlier conversations were. These documents don’t really cover the variety of decisions you will face as a caregiver. We have had to make many audible calls in the care of my parents from choosing to forgo chemotherapy to moving my Mom into a new community focused on memory care.

I was lucky to have had so much time with my parents to absorb many of their personal beliefs as an adult. One document that can help provide some guidance to family members for care decisions if you can’t make them yourself is called Five Wishes. It’s written to stand as a legal document, so if you have estate plans in place, please consult with your lawyer. If you don’t, it might be a good place to start. Recommended. 

 

You are my daughter?

choccoveredberriesI’ve had the suspicion that my Mom doesn’t know my name anymore. She used to use it and hasn’t done so in over a month. When I arrive, the woman who runs a day program for resident’s with dementia is taking a walk with my Mom.

When my Mom sees me she smiles and I get the typical “Hey, I know you.” I respond, “Hello, Mom” and she quickly replies “You are my daughter?”

“Yes.”

I knew this day would come. She is quick to follow me back to her apartment when I tell her I brought her some chocolate covered strawberries.

She spends little time in her apartment now. She will usually tell me she doesn’t know where it is and asks me if I will walk her back to her apartment before I leave. She is always asking what she can do. She craves activity.

Thankfully, the community started a program that runs from 9:00 a.m. to 3:00 p.m. that has been keeping my Mom busy. She hasn’t been spending days in bed which is what she used to do before the program kicked off. She doesn’t remember that she’s in the program or what they did that day, but it has made a difference in my Mom. I’m not sure if she’s more accepting because of the disease-state, the medication, or she has enjoyed the benefits from accepting help from those around her.

I know the biggest factor for my Mom is my familiarity with her likes and her routines. While she doesn’t recognize me as her daughter anymore, knowing how to interact with her and avoid trigger points has made all the difference in the calm we enjoy together.

I knew this day would come, but knowing it would arrive doesn’t make it any easier to accept. Bummed. 

Trying to keep Mom kempt

hairrollersMom is now sleeping in her clothes. When I’ve gotten her into the shower, I realize how hard it is for her to dress and undress. I understand that she wants to manage, but in this area, she won’t allow me (or anyone else ) to help most days.

I wonder if the days that she won’t allow me to help are days she doesn’t really recognize me anymore.

I scheduled a hair appointment but when they tried to get her to her appointment she refused to go. Maybe it would have been more successful if I was there. I can’t always be there when she needs to dress, shower and get her hair done. I hoped it would be easier for her community to help, but now it just feels like another reminder that Assisted Living isn’t the right place for someone with memory issues.

I return the next day and walk with my Mom to the beauty parlor. It’s just the next building over through one connected hallway,  and it takes us almost fifteen minutes to walk there. The lady who has been doing my Mom’s hair every other Tuesday for several years greets us and she says she can get her in this afternoon. She will come get my Mom if she doesn’t show up. I’m hoping that my Mom will go now that we have her scheduled with her regular hair dresser. I’m thankful that she is willing to go pick my Mom up from her apartment and already knows where she lives (having had to do this before). I write-up an appointment card and try to get my Mom to stick it in her pocket. She wants to hold it to help her remember.

When we get back to her apartment, she asks me what she’s doing today. I run through the activities. When we get to the hair appointment, she asks if we can walk there so she knows how to get to her appointment. When I tell her we just did that, she responds, “I hate this, I should know that we just did that.”

“I know Mom. It’s okay, you have lots of friends around you who will make sure you get to your appointment today.”

I have been working harder to coordinate with the floor staff. But I know my Mom will just sometimes refuse to shower, change clothes, get her hair done … it takes a village to age them, as well as raise them. Reminded.

A BILLION Passcodes Stolen – What’s your plan?

passwordNBC News just reported that a Russian crime ring stole over a billion passcodes. Our lives just got one notch more complicated.

Most adults average 28 online accounts. My last count was 87. That is A LOT of usernames, passcodes, PINs and information to remember. I manage several accounts for my Mom, some for my children (school, dance, soccer and track registrations), most of our household accounts and then all of the accounts for MemoryBanc.

We fail to recognize how many accounts we keep track of in our heads, on our mobile phones and even under our keyboards, I quickly realized how much information surrounds a household when I stepped in to help my parents. I started by documenting medical information (prescriptions, doses, doctors, history, follow-ups) so I could be a good health care advocate. Then I needed to pay bills and manage their finances, then came household services and ultimately online accounts. The binder I created to keep track of all of their information launched MemoryBanc. I quickly moved our own household to the print, then the digital edition of the MemoryBanc Register. Given I have more than 87 online accounts — I have made sure to document them all.

The NBC News story provides users with many options on how to create unique but varying passcodes as well as suggestions for online password storage sites. Most passcode managers have encrypted data and 2-factor authentication to prevent hacking — but nothing is 100% secure (just look at the issues the US has had with data breaches) and those protections also leave your loved ones without access should they need to act on your behalf. Make sure to have a solution that allows you to print out a copy of your passcodes. Should the company that owns your password manager have a critical failure … you should have a plan B.

If you don’t have have a list, I hope you will take this opportunity to document your accounts, I have included a simple excel spreadsheet that contains all the information you should be documenting. You can download it and document your usernames, passcodes, PINs and security codes (don’t save it on your computer please).

If you are worried about sharing this information, consider how helpful it would be to a loved one should you ever be unable to act on your own behalf. Pleaded.

icon-bonus

 

 

My gift to you is this free worksheet that will collect and organize your usernames and passcodes.

 

Another storm passes

storn cloudI return to visit my Mom a few hours after she was found on the floor. We aren’t sure if she fell since no one saw what happened and my Mom doesn’t remember. Within an hour of the “fall” that resulted in EMTs being called, she gets up and is moving around. For several months she has been walking more stiffly and taking shorter steps. There appears to be no change in her movement, speech or behavior. I discuss with the staff that I would just like to keep an eye on her and let them know I would be returning later in the day.  When I return she is still sound asleep and the night shift has set aside a meal for her should she awake and be hungry.  For several months, she has days that she sleeps through. So this isn’t out of the ordinary either.

I return to check in on my Mom the next day. The EMTs had asked if I noticed any changes in my Mom when they were assessing her. While she seemed to have more trouble sitting up in bed initially, I wonder if we just haven’t seen her try lately. I remember being surprised when I realized how long it was taking her to dress now. There seem to be no other changes in her movement and the day after she is back and engaged in the morning and afternoon activities the community offers.

I know that as the family member, I am probably going to be the first one to notice changes in my Mom. I remember being dumb-founded at how long it took for any doctor to initially diagnose my parents. A month before my father passed away and well into moderate Alzheimer’s, he got a 29 out of 30 on the mini-mental or folstein test often used as the first gate down the pathway to a dementia diagnosis. I tell those that ask that if you are noticing a change in behavior, you need to pursue your concern. It’s important to request a Neuropsychological Evaluation that will take at least two hours and is administered to understand where there might be cognitive decline.

My siblings and I will continue to keep a vigilant eye on my Mom. I can’t imagine how our health care system can effectively manage those individuals without someone who can be their medical advocate.

For now, I feel like the skies are still gray, but the thunderstorm has passed. I feel a butterfly in my gut as I imagine what the next crisis might be. Squeamish.

The right place for Mom

longroadFor several months, my siblings and I visited a variety of communities to determine if we might be able to find a better place for my Mom. My Mom is in a very nice Assisted Living facility, but it’s geared to help a variety of individuals manage the activities of daily living (ADLs). When you have dementia, just having help and reminders is not enough. Most of the activities aren’t geared to someone with dementia, and we believe my Mom needs a different environment.

Two weeks ago, my Mom’s current community launched a daytime program to engage her, and five other residents from 9 a.m. to 3 p.m. While my Mom can’t remember her day to share it with me, I have found a very different person when I visit now. On my last two visits, my Mom wasn’t sleeping but was sitting out in the courtyard peacefully on a rocking chair. While we are chatting, another resident walks by and my Mom raises her hand and cheerfully waves to someone I recognize, but have never met. The new program seems to be agreeing with my Mom.

I retained one of the women who we hired to help my Mom when she was going through periods of “unbecoming behavior.”  She has earned my Mom’s trust and offers my Mom companionship at dinner as well as can help ensure Mom’s laundry get’s done. My Mom usually hides her laundry making it difficult for the staff to be able to simply offer her that support. We still have a few gaps in her care (showering and general personal hygiene).

So many of the challenges in my Mom’s care have been to help us address behavior that doesn’t quite fit into the standard care needs for someone in Assisted Living. For that reason, we have put her on a wait list at a facility that is only geared to help its residents who have dementia. The idea of moving my Mom makes my tummy hurt and my heart race. But I was never of the belief the journey would get easier.  Fortified. 

Related posts:

What should a community include for a person with dementia?

Is my Mom in the right place?

Life Regrets? Seems many are toting some baggage!

50isNiftyUSA TODAY just shared a recent survey that showed life regrets can shape later years. As someone who has been caring for a loved one, I’m focused on not repeating history.

I have been reading the studies and have made several changes in my life in an effort to build a new and improved aging storyline. In 2012, I shared the 5 ways I planned on aging better than my parents which included cultivating meaningful friendships, documenting the little but important things, questioning and understanding my health state, finding work I enjoy and continuing to work as well as exercising and eating right.

I am a very competitive person and once I set my goals, I work to knock them down and make them part of my life. I have accomplished my goals and will add that after I appeared on Dr. Oz, I have incorporated more fish (or fish oil) into my diet.

While watching and caring for two parents with dementia would never be the path I would choose, it has changed me in many positive ways and helped me find work I enjoy and something I will continue to do for as long as I am physically and mentally able.

I was a little saddened that the study revealed that for older Americans:

  • 48 percent have the support of friends and family
  • 32 percent are happy about their living situation
  • 30 percent are well-prepared financially
  • 29 percent are in good health

Those all seem like very low percentages to me since you can easily flip them to say 52% percent don’t have the support of friends and family, 68% are unhappy with their living situation … you get the point.

Of the regrets, in the top 5, Americans included “keeping legal documents organized”. My parents had done the financial and estate planning and I had the legal documents. The legal tools don’t always work, and they don’t include all the information you need to assist someone if they need support.

As I celebrate my 50th birthday today, I’m proud to have launched MemoryBanc in order to help others organize and protect their important papers and documents. The recognition from AARP Foundation as an “older-adult focused innovation” fueled me to pursue my upcoming book with AARP. For any of you looking for a solution to collect and organize your personal papers, please take advantage of a 10 percent discount using coupon code “GRACE” to order the MemoryBanc Register. Celebrated.

Here come the health complications …

momsleepingontableFor some time, my siblings and I have wondered if my Mom is in the right place. When we had to hire personal assistants for my Mom who is in Assisted Living, we started to look at other communities. We were having to spend about $5,000 a month on top of the monthly Assisted Living fees of $7,500. GULP! We are blessed because my parents saved the money to be able to cover these expenses — but it doesn’t make them seem any less gargantuan. For those of you familiar, this is a Continuing Care Retirement Community (CCRC) and that is a “discounted monthly rate.”

Our goal is to find the right care for my Mom as well as be a good fiduciary representative of her money.

I hired a firm to help us find the right community for my Mom. We have dozens in the metro-DC area to choose from. My siblings have been coming to town to visit the final communities. We decide that one dedicated to dementia care would be the best fit for my Mom. However, during this process, my Mom had some health issues.

I took my Mom to the doctor because the Assisted Living community suggested we follow-up the initial tests from her primary care physician. Her general diagnoses is “Congestive Heart Failure” which is apparently very common in anyone over 80 years of age.

My Mom is sleeping most of the day now and I have to wake her when I arrive to take her to the Cardiologist. A few weeks ago, my Mom started walking very stiffly. As we walk to the car, she lets me hold her hand for support. She doses off in the waiting room and when we reach the examination room, she just wants to lie down and sleep. She actually sleeps through the EKG. I feel a sense of deja vu back to my Dad’s final doctor visits.

The Dr.diagnoses her with Diastolic Heart Failure. There is really nothing to do since she is not complaining of any symptoms or pain. He tells me what to watch for (swelling feet, weight gain). Last time the swelling self-resolved, but if it doesn’t, they can put her on a diuretic to help her eliminate the retained water.

We now have to weigh our decision and hedge our bets that Mom won’t need Skilled Nursing if we move her to the community dedicated to dementia care. Their goal is to have our Mom live the rest of her life in their community, but more complex health care issues may mean that she would need Skilled Nursing at some point moving forward. Just when you think you have a clear path, the choices get muddied. Befuddled.