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. 

The Two Stinky Options for Dementia Care Givers

marie marley
Marie Marley

I am thankful that my parents choose their retirement community. It alleviates most of the guilt I feel, however, it doesn’t mean you aren’t involved or acting as a care giver. Helping my parents has been and continues to be a part-time job. The community works with me and my siblings — we are actively involved as advocates and care givers — and have been for more than two years.

Right now my siblings and I are struggling to know if my Mom is in the right place. With dementia, the transitions are the trickiest and I’m not sure one community will always be the right place for everyone. The set-up of the Assisted Living community is proving to be very challenging now. We are possibly going to have to find her a new place if the place she selected confirms that they are just unable to help my Mom any longer.

I enjoyed reading this article in Huffington Post by Marie Marley who speaks to The Pros and Cons of Placing Your Loved One in a Facility.

It’s a good read, and a good reminder that both choices stink. Conflicted.

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.  

Helping someone with Dementia find Meaning and Purpose

helpinghandMy daughter and I visited my Mom yesterday and as we were leaving my 11-year old turned to me and said “She’s a lot worse.” I have noticed that instead of one or two odd-ball comments, she now has whole sentences that don’t make sense.

She is also doing things that don’t seem very nice, but I know under her actions there is good intent. My Mom is a life bridge master and created and directed games around Northern Virginia. Several of them were in the Retirement Community where she now lives. I was told that she has been very disruptive at the games and have visited and seen the resistance to find her a partner lately. About a year ago, she tried to willingly turn over the games to a woman who volunteered. My Mom was having a hard time getting the bridge boards together. I know the woman had a very hard time because my Mom would forget she turned over the game and try to take it back over. Apparently, she still forgets which causes trouble.

A few weeks ago, the woman who was running the games got ill and has been in the nursing unit. My Mom went to go take her “boards” back from the community room. When I asked her why, she couldn’t tell me.  She is having a hard time putting her ideas together and communicating her intent — the first week she told me the story, it just sounded like she felt like this was her opportunity to steal back the equipment she turned over to the new volunteer director. Yesterday, she finally told me she was getting them ready so they would have boards to use so they could still have their games.

What I do see when I visit my Mom is how many things she can still do. My daughter hurt her foot and is now using crutches. On our trip, I would stop by the front door to let out my daughter and my Mom. My Mom would hop out of the car and get the door open to help my daughter. She was attentive and tried to assist with small tasks during our entire visit.

That is the missing component now for my Mom. She has been a tinkerer her entire life and having small tasks or someone to help would do her a heap of good. The Assisted Living community can keep her safe, but they just aren’t staffed or designed to keep her mind engaged doing activities she is interested in joining. They do offer bingo and movies and Zumba — but those aren’t things my Mom is interested in. I bet she would be interested if they offered activities that would help others. My Mom was a caregiver for my Dad, but now that he is gone, I know with the right guidance, she could still help others. Wondered. 

Please let me know if you have suggestions or are familiar with programs or facilities that offer more purposeful activities. 

Medical Colonialism: The New Aging Option?

thailandAs my siblings and I watch the impact of the choice my parents made, we grapple with the realization that we don’t want to follow in their footsteps. For more than twenty years my mother told me they would make sure they did not do to us what their parents did to them. Unfortunately, because of the dementia, my parents had no idea how difficult my life became when they failed to follow the plans they had made.

I came across this story today: Some with Alzheimer’s find care in far-off nations. The husband, who is from Switzerland, shared he is considering a community in Thailand for his wife who suffers from Alzheimer’s because it is “not only less expensive but more personal.”

This statement is something my siblings and I are facing. My mother is safe and cared for, but we know the staff does not have the time to spend with those in Assisted Living that their families believe would occur.Many are very loving and well-trained, but we are all struggling with how to squelch the loneliness and isolation my Mom is facing. She won’t join in the activities they offer and without short-term memory, it’s difficult for well-meaning friends to help. My Mom’s always been a lone wolf.

I shared the story of the woman who fell on the way to change her television, and recently there have been other incidents that are disturbing in that on the surface, they illustrate the inability to provide vigilant and personal care for each resident. I truly can’t imagine that a business could really provide the type of care each resident deserves. It’s why I consider myself a caregiver, even through my Mom is in an Assisted Living facility.

I’m not sure sending off a loved one to another country is the right answer, but I’m not sure I’d mind aging in paradise. Conflicted.

Other Related Stories:

Having a Medical Advocate from fellow blogger Butch

Five Steps for a More Affordable Retirement (Huff Post)

Panty Raids in Assisted Living?

granniepantiesSeptember was a blur.  However, one story I have not yet shared happened as we were working toward finding treatment plans for my Dad. When I arrive one morning my Mom is angry. Apparently, she tells me, someone took all of her clean underwear!

She tells me that she had hand-washed her underwear and it was hanging in the bathroom. I ask my Mom if she put her white granny-panties over white towels to dry and maybe the cleaning staff didn’t notice?  “No, some jerk took all my clean underwear.”  I giggle and ask my Mom if she’s ever been the victim of a panty raid before. Without waiting for an answer I continue to remark that I’ve never been a victim, and I actually lived in a Sorority house in college for a few years. She softens a bit and we start to discuss when to go to the store to buy her more underwear.

The hard part is that they don’t make (or we have been unable to find) the type of underwear she likes. I’ve been to many stores and looked online. We are looking for the classic “6 inches above your belly button” panties in all white cotton.  Today, we find some at the post exchange. I’m pleased we could find a pair, but my Mom resists, “They are $5.00 a pair!” Since she doesn’t have ANY, I get her to agree to buy two pairs in her size which is all they had in the store.

The next day, my Sister arrives and tells me that she found 5 pairs of dirty underwear under the mattress of my parents bed. We will never know what happened, but I do know that hiding things under the mattress is a recent habit of my Mom’s and with all the commotion, it didn’t even dawn on me to look. It does make me feel a little better about the crowd that shares her hall in Assisted Living. Tickled. 


The Benefit of a Continuing Care Retirement Community (CCRC)

lovehateIn the past year, I’ve had a love-hate relationship with the retirement community my parents selected.

At first, when I learned how much they paid to enter and then were paying monthly to live in an apartment with just meal and cleaning services (its referred to as Independent Living), I wondered why my parents selected this choice.  The numbers were big and they never explained what it meant to buy into this community.

My mom always told me I would never have to worry about them, but as you may have noticed by reading this blog … I’ve spent many years worried for my parents safety and well-being.

As my parents started to exhibit odd public behavior, the retirement community staff noticed. They would visit my parents but did not share that information with us. They were interested in respecting my parents privacy. At one point they suggested I petition the courts for guardianship and conservatorship. My siblings and I weren’t interested in heading down this painful, expensive and very public path.

Eventually, when things got bad enough, the retirement community terminated my parents Independent Living contract and moved them into Assisted Living. It was horrible and difficult but the staff worked with us to manage the transition and now my parents are the happiest I have seen them in years.

As my parents are aging, I am thankful they made this choice. My siblings and I will still be involved and vigilant, but the fact that I could leave for a week and not worry about my parents safety or well-being makes me realize the true value of the CCRC. Appreciated.

AARP’s Summary of a CCRC

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.

Making the transition to Assisted Living when your parents refuse – Part II

lessonslearnedAfter my parent’s driving licenses were revoked by a doctor, they continued to drive. Their brains filled in the details with their own manufactured information. At first, my mom admitted they were revoked and showed me the letters, and then later, they would pull out their licenses as proof that they were still valid drivers.  The letter from the state requires that you turn in your license, my parent’s refused.

We had to take their car keys. My brothers came to town and my parent’s initially handed over the car keys. At first they just took the keys and moved the car’s out of my parent’s garage. One was sitting a block away from their home. After my brothers left town, my parent’s found it and hired someone to rekey the car. I’m sure they would have driven more if the electrical system wasn’t toasted in the process.

Eventually, we hid both cars by putting them in storage.

I’m one of their four children, with two older brothers and a sister. We worked well together and thankfully, my brothers came to town to manage the dirty work. When they left, I could still be the go-to for my parents and could tell them I had no idea where the car’s were. My brothers had taken care of the details.

My brothers accomplished this by following what they believed to be the moral choice. What if my parent’s had another accident (they never shared the first one with us)? In the event that my parent’s would reported the “theft” – one brother visited the local police department (we live in a major metropolitan area) to share that our parent’s continued to drive without a license, their diagnosis (and inability to remember) and tell them we had stored their cars.

At first I struggled with having to lie to my parents, however, as things got more bizarre, I came to realize that giving them a modified version of information helped manage us through several transitions and was the best course of action.

After about two weeks, my parents had created their own version of the car’s disappearance and I just feigned ignorance and helped out where I could by giving them rides to the grocery store.

The first two of the three steps that helped us support our parent’s transition were:

  1. Address driving if you think it’s an unsafe activity for your parents and their doctor agrees.
  2. If they continue to drive disable or hide the cars.

If you have been reading my blog, you know this was not an easy process, however, I hope that my experience can help others more easily make this transition with their parents. Learned.

Let’s go get groceries.

lady winter coatAfter a few days, I call my parents to see if they need to go get groceries or run errands. My mom answers the phone, “That would be great! You know we are in a new apartment now right?”

When I arrive my mom is happy to see me and we talk about what kinds of errands we need to run today. We create a list and my parent’s go to get a coat but neither can find a winter jacket. I hand my mom my coat and my dad grabs his windbreaker and we head out to the car.

The one thing we failed to move were winter coats. I’m not sure where to find them since both places are in the midst of major clean-up and organization. However, I’m happy to report that finding my parent’s winter coats is now my biggest concern. Relieved.

Don’t lock the door

lockfrontdoorWhen my dad and I return from our trip to the grocery, we find that the bulk of the items have been moved. The new place is just a bedroom, living room and small kitchen area, so the movers got the bulk of the big furniture moved in a few hours, despite my mom’s interference.

Apparently while I was off with my dad, my mom went to speak to the Assistant Executive Director that she has known for more than a decade. She was very agitated by the moving and in order to placate her, he tells her they can visit their old apartment anytime they want. Oh no!

Maintaining access to the old apartment in Independent Living was not part of the game plan. Our goal was to move everything they needed and close down the old apartment. Given our parents inability to give up their town house and move into the retirement community full-time (even after the stroke and broken hip), we wanted this transition to be a clean break. We had their apartment in Independent Living rekeyed so we could ensure our parent’s would not be able to return.

By late afternoon, we are in the apartment working to pack up final items like pajama’s and toiletries. My brothers invite my parents to dinner so they could get them out of the apartment. We believe it’s critical that our parents stay in their new apartment tonight. My mom has said she plans on sleeping on the guest bed in their old apartment tonight. Before my parents and my brothers walk out the door, my dad instructs them: “don’t lock the door.”

My sister and I work a little longer and take the last of the boxes to the new apartment. As we leave, we diligently lock the door behind us. Closed