How much of me is me?

teacupsWhen we moved mom into the new community, they warned us about her teacup collection. They were worried that residents would be attracted to the cups and saucers. My mom has a lovely collection that has been in her primary living residence for at least the last two decades. I wasn’t moving mom in without them. We also left on her rings. My mom didn’t need anymore changes and we felt the symbols of her possessions were worth more than protecting them from loss.

When they called last night to tell me there has been an accident and a resident knocked one of the display shelves off the wall, I wasn’t surprised. However, I was somewhat alarmed. What was someone doing in her room at 9:45 PM? My mom is usually asleep by 7:30 PM and her PDA leaves at 8:00 PM.

When we first moved mom, my sister mentioned that I should ask for a locking door. I asked the first week and it dawned on me that I never got an answer. Today I was told they won’t put locks on doors for residents that can’t remember how to open locked doors, could my mom do that? I am not sure.

As I’m looking at her cup collection, it dawns on me that a few missing cups won’t really change the collection. She will still have something to look at. However, it makes me envision my mom as the collection. How much of her is missing now?

I recently posted my internal struggle with how to manage mom forward and consider the options in front of us. The slogan “If I’m not me, I don’t want to be” rattles in my brain. I don’t think we have the right options, but I really don’t know how you would measure “me-ness.”

My mom doesn’t recognize me on most days now, but she is pleasant when I visit. She would prefer to nap and eat cake, but I can’t really fault her for that.

I know a day will come when I visit my mom and no teacups are left. I will cross that bridge when I come to it and enjoy the collection that is left for me to visit. Foreshadowed. 

Recreating Familiar for Mom at the New Community

teacupThe actual move went off smoothly. I hired Vanessa Seifert with Squared Away Living to help me. She is a professional organizer, and has helped many families move loved ones into retirement communities. She packed up the items in the morning and by the time we arrived, Mom’s room was put together.

My mom is getting hospice care from Capital Caring and I had notified them of the move. When we pull up, her new wheelchair and bed are arriving. (I will discuss the whole complicated issue of hospice vs. palliative care on a future post.) I was most worried mom’s bed wouldn’t be here and had a back-up plan so she could take a nap if she needed one.

The personal daily assistant (pda) followed me to the new facility and will stay with mom to help her get settled. Since I haven’t managed transporting mom in a wheelchair, I was thankful to have the extra help getting her into my car. When we arrive, we are greeted by the marketing associate who helps us get mom to an activity to immediately engage her.

I spent some time in mom’s room finishing up picture placement and brought an iron. I wanted to make sure we had name tags in her clothes and knew some that we moved were unmarked.

The executive director comes to welcome me. We have moved my moms tea-cup collection and she expresses concern that other residents might come in and take them. I tell her this is more about having mom surrounded by familiar things. She then eyes the iron sitting in the corner. I see her expression and share that it’s mine and I’m putting some labels in mom’s clothes. She laughs and tells me that her mom, who also had dementia, had a habit of hiding knives in her bed. I assure her that I won’t be leaving the iron in my mom’s room.

It is comforting to know that the woman running this community has cared for a loved one with dementia. I’m finding that the deeper I delve into both the dementia and end-of-life community, the more passionate, experienced and dedicated people I meet. This journey certainly has changed my life permanently and it’s nice to be surrounded by others who have walked or are still walking this path. There is no quick fix to mom’s need and care, it’s ever-changing and complicated. I’m focused on her journey, not the destination. Comforted. 

What’s Right For Mom? Assited Living vs Assisted Memory Care Communities

movingdayI’m excited, overwhelmed and hopeful that we will be able to move my mom who has dementia from her Assisted Living community to a community dedicated to Memory Care. My mom is in a Continuing Care Retirement Community (CCRC). My parents bought in back in 1998 and had an apartment in Independent Living until two years ago when the community terminated their Independent Living agreement which forced them to move into Assisted Living. It was stressful but resulted in my parents being in the community better suited to their care needs. We had tried to get them to accept help so they could stay in their Independent Living apartment, but they refused and Assisted Living was the only safe option.

After my dad died, my mom became very combative and disruptive. Whether this was the disease process or how her grief presented, I’m not sure. However, last winter we were told that if my mom’s behavior didn’t improve, we would be getting a 30-day move out notice. To help keep her and the other residents safe, we were required to hire personal daily assistants (pda’s). My mom still would not accept help from others and the people following her around usually just frightened her and made her angry. I got several calls from lifelong friends in the community that my mom was really struggling with the people who were “following her” around.

We went through several pda’s, but one of them has been with my mom now for a year. She was able to gain my moms confidence by being patient and positive. While my mom still doesn’t know her name, she willingly allows her to help now. My mom ended up in a wheelchair after her steep decline. She just lost the strength/confidence she could walk. The wheelchair has forced my mom to accept help from others and most days she is gracious and accepting of the help to dress and toilet.

My mom has always been active and needs more stimulation. After I got the “move warning”, I started the search for a new community. I quickly realized that a place set up to help a variety of individuals with the activities of daily life (ADL) was not best-suited to serve someone with dementia.

The things I realized were different included:

  1. Menus – In an Assisted Living community, my mom is presented with a menu and asked to choose her meals. The act of choice was overwhelming for my mom so I have the pda’s select her foods based on her preferences and food is just offered to her.
  2. Personal Care – I have had to intervene to get my mom showered, her hair done as well as clean and clip her nails. These things are scheduled and occur on a regular basis so mom will be better “kempt.”
  3. Activities – The variety and regularity of activities are endless in a community dedicated to memory care. My mom’s community implemented a program from 9 a.m .until 3 p.m. that worked for a while, but as soon as 3:10 arrived, mom was bored and wondered what she should be doing.
  4. Acceptance – My mom will now be with other’s that are in a similar situation and she won’t feel the looks, hear the whispers or feel the judgement from those that don’t understand dementia.

There are quite a few other differences, but until I started looking, I didn’t realize how all of these small things would really help my mom continue to feel connected and useful. I recognize it now, and am looking forward to completing this move. Anticipated. 

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.

Is my Mom in the right place?

retirementcommMy siblings and I have had a love/hate relationship with my parents retirement community.  I know that our journey would have been infinitely more difficult had our parents not made this choice. The fact that the community stepped in and forced them to move into Assisted Living saved us from having to petition the court for conservator/guardianship.

We’ve had a rocky road when it comes to our expectations of and the delivery of services. I have too many posts dedicated to this topic to detail, but currently, we are trying to determine if Assisted Living is the right place for my Mom who has dementia.

My Mom has been in Assisted Living for more than a year, and for quite some time, she was not very nice to the staff or even the other residents. My Dad helped manage this when he was alive, but after he died, it got even more difficult and we were told we had to bring in additional support and adjust medications or they would begin a 30-day discharge process. I’m simplifying the story here admittedly – there is a lot more that happened.

Assisted Living is not geared specifically toward someone with dementia. We started to notice that many of the staffers really don’t like my Mom and witnessed some situations that were disconcerting. We assumed the staff would be able to understand and accept her behavior and were trained to manage someone with dementia. However, even we recognize that sometimes things my Mom did felt very personal.

We have hired additional personal assistants daily from 1 to 9 PM for more than 3 months. My Mom has started to ask for a schedule and has episodes where she doesn’t recognize her apartment.

When we were told that my Mom might be discharged in 30-days, we started to look for other options. Because of my business, MemoryBanc, I meet many people in the senior community. I met two women a year ago that started a business to help families find the right living community. One of them has worked in management for retirement communities, the other is a registered nurse – both were caregivers to their parents and decided there was an unmet need to assist families in the search process and they launched Caring Considerations.  I hired them to help me find the right place for Mom – there are dozens in the metro-DC area. I also wanted some help to know what I should be looking for.  They helped me find several wonderful options and have helped me understand the disease process as well as what to look for in a community. .

I realized after the first tour, that a facility geared toward someone with dementia has many resources to better serve my Mom’s needs. Discovered.

This will be an ongoing topic as we move through this process …. more to come. 

A week later, Mom still sporting her sunglasses

momsunglassesday2As you adjust to caring or just loving some one who has dementia, I hope you are finding rewards in the things you can still share and enjoy together. While I don’t want to focus on how long or short this phase of my Mom’s disease state will last, I am enjoying my visits and the small victories.

While we are still PJ challenged, the sunglasses Mom purchased are still in her possession. On our weekly grocery trip my Mom grabbed her sunglasses and put them on before we emerged into the bright sunny afternoon today.

My daughter was with me on this trip  and I noticed that my Mom was having a harder time recalling both of our names. I’m used to being called “Kathy” which is my sisters name, but today, Mom had trouble just recalling my name when she tried to introduce me to one of the personal assistants who has been at her side for two months now.

I say hello and go along with the introduction, as does her personal assistant. We are getting comfortable with the new dynamics. When I arrive, I will typically find one of the assistants walking with my Mom. One of the two have been able to adapt to my Mom’s interests and has found ways to get her out of her apartment, if only to go get a cup of tea and sit in the community center and people watch.

I’m feeling much less guilty about not being able to visit Mom more now that I know she has two people who are there to join her for lunch and work to help her enjoy each day a little more than she would by herself. Temporarily Calmed. 

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)