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. 

The decision to move mom

WreathatGrave2014On Monday, we drove mom to her new community. I had help moving her things and before she arrived, her room was filled with her favorite paintings and family photographs. The staff at the new community immediately welcomed her and got her involved in activities.

We didn’t make this decision lightly.

My parents and my grandparents both lived in the community mom just moved from. They have lifelong friends who live there. However, my mom doesn’t remember or recognize them anymore. I know many people in the community and the change is a little scary for me too.

When my dad died, I received books on managing grief from some volunteers. In December, a group of volunteers went to Arlington National Cemetary and laid a wreath at my dad’s headstone and sent pictures and a note to my mom. My godfather would often deliver my mom’s mail and many of the residents knew her from the years of bridge groups that she ran. Several adult children of other residents would stop by and visit my mom. I will miss these things.

We were asked to let the community help mom make the transition and told that we shouldn’t plan on visiting the first week. Two of the women that supported my mom as personal daily assistants (pda’s) in her old community are on site and helping her make the transition. I feel like I did when my children went to camp. I hope my mom’s doing well and adjusting and that she is finding enjoyment in the new community. Wished. 


When is it time to make changes?

optionsThis is one question I get frequently. My answer will always be “NOW” since you are asking me the question, but typically the response includes five reasons why the change can’t be made. Once you have verbalized the question, you must acknowledge that you probably already know what the real answer will be. It’s just not easy to help a loved one make the changes when they need to or better yet, before they need to be made in haste. Making the change before it’s required gives you a variety of options.

Our parents told us they had a plan, started to execute it, but then stalled when the big changes needed to happen. They purchased a place in a Continuing Care Retirement Community (CCRC), but always treated it like a vacation home that was visited a few days a week. They kept their “downsized townhouse” and would share the “milestones” that would trigger their move into the CCRC apartment full-time. The milestones came and passed.

We were thankful a doctor had my parent’s license’s suspended, because they refused to listen when all four of us kids sat down with them and suggested it might be time to give up the car keys. We did this twice over a two-year span. We eventually had to be sneaky and hide the cars because my parent’s continued to drive even after their licenses were suspended. They tore-up the suspension letters and kept their licenses. When we found them driving and asked them if they realized what they were jeopardizing by driving without a license, they would open their wallets and glare at you like you were a bald-faced liar.

Looking back, you realize how progressed their dementia was well before it was ever diagnosed. The family notices first, whether its a personality or a behavioral change. We pushed to get them to a doctor that could provide them with more than the mini-mental exam most often used by general practitioners to determine if a patient might have dementia. Two years after my father was diagnosed in a moderate stage of Alzheimer’s, he was scoring 29 out of 30 (27 and above is considered normal) on the mini-mental exam.

As my parent’s declined, their pursuit of independence and maintaining their current lifestyle grew stronger. We worked with the retirement community to move them into Assisted Living after they determined my parent’s could no longer safely live in the Independent Living community. Had my parent’s accepted a caregiver when they lived in Independent Living, it would have delayed a move into Assisted Living. They refused to accept this change and were forced to move. We negotiated two weeks to coordinate for the move and the community notified my parents they had three days to move into the Assisted Living apartment. It was a herculean effort that could not have happened if I didn’t have three other siblings. We were fortunate a larger room in Assisted Living was open when my parents had to move.

When my Mom kept misplacing her purse, I opened up a new checking account so that she could keep a checkbook in her wallet, but not jeopardize their retirement income.

Unfortunately, in my experience, all the changes were made late and were incredibly stressful. In hearing other’s stories, I know we are not unique. Most families have to wait for a critical incident before any change is considered. Once you make the change, you wish the change had come sooner.

I was physically ill days before we had to move cars, move my parents, and introduce a caregivers. I felt immediate relief when the change happened and wished it would have come sooner. My parent’s also benefited from the change.

I believe from the information I have read, as well as from my experience, that the earlier the change happens, the better the road for everyone involved, especially someone with dementia who progressively has more difficulty with change.

Everyone and every situation is different. I only hope that when you start asking these questions, you will consider the consequences of not making the changes now. Hoped. 



Gracious Mom has returned

graciousI am still a little skittish … am I in the eye of the storm? Is there a second wave of emotional turmoil that will arrive as swiftly as the first one disappeared? My mom was so difficult to manage during the actual move that I’m waiting for her to return.

The retirement community knows what they are doing and I’m thankful for the resource. They notified my parents of the move and gave them two days notice. My parent’s knew that was unreasonable and fished around to see if we knew in advance. No one broke ranks.

The fact that all four of their children were in town on the day of the move went unmentioned. However, the day they were notified my mom found and called a lawyer. She failed to write the appointment in her calendar and had forgotten about it. We had already looked into the legality of the move and timing and knew the community had the right to make this move.

When the movers arrived right after all four of us children showed up, my mom was surprised. She was angry, confrontational, disruptive and combative. We made it through the day and left my parent’s in the new apartment with the staff as the community recommended.

When I call a few days later to ask if I can come visit, my mom is excited to hear from me. We had a pleasant trip to the grocery store.

When I arrive today, they have already hung more pictures and moved the furniture around. My mom is working on enhancing the frame of a family portrait we had done two Christmas’s ago. It contains everyone from my parents down to the four grandchildren. They have placed it in the middle of the living room wall where they seem to now spend most of their time.

My mom has a list of things to buy and a smile on her face as we head out the door today. Endeavored.

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

missionaccomplishedSo my parent’s licenses were revoked and they kept driving so we hid their cars. Then my parent’s started to take cabs between their two homes. This created a whole new set of issues since they would arrive without money or keys.

When they broke into their town house and called the police to report the break-in, we were dumb-struck. My dad realized what happened while my mom argued about it as I drove them to their apartment at the retirement community.

At this point, their retirement community was starting to get alarmed at my parent’s behavior. They called me to share the concern over them getting into cabs. We met with the staff who suggested we consider petitioning the courts for Guardianship / Conservatorship and force our parents into Assisted Living.

This process would have devastated my parents. The struggle over the cars and driving made us very aware of how much ego played a part in the needed transitions. We were also hesitant to make this a matter of public record. I was berated many times by my mother when she felt that I did something without first discussing it with my parents. I treated my parents the way I would want to be treated and did always discuss the issue with them, however, they often forgot the conversations. Eventually, the retirement community called in Adult Protective Services. My parents failed to remember their visits.

Eventually, what we found out was that as a resident of a Continuing Care Retirement Community (CCRC), the community had the ability to force my parents from Independent Living into Assisted Living. The community respected my parent’s privacy and never told us about this, but when they called to tell us they were going to move my parents, we quickly understood the silver lining in my parent’s choice for this retirement community.

While the organization of getting the move done was monumental and stressful, my siblings came into town to support the move and one of my brothers along with his wife, returned to clean out their town home and Independent Living apartment.

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.
  3. Look to their retirement community to see if they can help make the transition when it’s needed.

Finally, my parents are in the environment that suits their current needs and they are very happy in their new apartment. Accomplished.

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 

It takes all four of us to manage the move

fourkids (2)The past year has made me regret not having more than two children. Since I grew up with four kids in my family, I always believed I would have four children myself. That was until I had the first one! He was a tough baby, or possibly, I was an ill-prepared mom.

I started late, having my first at 33, so that by the time I was ready and actually did get pregnant, my second arrived to a 38-year-old mother. Given all the high-risk discussions and the additional needs just a second child brought, my husband and I felt for us, it was too late to have more. I am lucky to have two healthy kids.

On the day of the move with my parent’s, we can barely manage my mom between the four of us. Our game plan was that two of us would give our parents a specific task to keep them busy while the other two would manage the move and movers. My mom always behaved nicer when there were two children in front of her — she would often bully you if you showed up alone.

When the movers arrived we have them start with the bedroom. While they are loading up the furniture, we task our parents to decide which sofa set they want in the new apartment. My sister and I invite my dad to go to the new apartment.  My mom is furiously trying to redirect the movers. My dad invites my mom along and she comes with us to the new apartment. Our job is to kill time so the movers can move.

After we linger in the apartment, we suggest getting lunch. On our way to the dining room, my mom sees their furniture being moved down the hall and takes off for their old apartment. My dad decides to follow me into the lunch room. My sister takes off to the old apartment after my mom.

My dad and I order lunch and try to find a topic to discuss. It’s only been two hours since breakfast so I’m unable to really eat anything. I know if I don’t eat, my dad won’t eat so I try to at least fill up my plate with a salad and some fruit and move it around on my plate.

My dad is ready for this move and does not want to fight it. My mom is making him very uncomfortable. I ask if he will come with me to the grocery store and we can pick up some of his favorites snacks for the new apartment. He agrees.

My mom and sister make their way to lunch and we tell them of our plans. We invite my mom along with us. She is not interested.

We all go back to the apartment and my mom is very upset. She keeps trying to tell the movers to put the furniture back and runs to the office of the Executive Director. I leave my mom to my siblings to manage and take my dad out to shop. Wandered.

Helping my parents move from Independent to Assisted Living

movingdayToday is the day we move my parents. My last sibling arrived late last night so we could all show up to help our parents with the move. My home can’t manage all 3 of my siblings comfortably, so one brother and sister stay in my parent’s town house, and another brother stays with me at our house. We decide to meet in the morning and set the game plan over breakfast.

Our parent’s are looking forward to having all the kids in town. After they were notified and we spent the rest of the day discussing and dealing with our very agitated mom, we stopped talking about the move. When we set the timing with the Executive Director of the retirement community, she strongly suggested that someone stay with my parents full-time after they are notified. My oldest brother W. was the freshest, so he took the last day and a half with my parents.

At so many twists and turns, our parents have surprised us. We were concerned they would leave the retirement community and go stay in a hotel.  By not raising the subject, we have avoided the debate. By day two my mom had either forgotten the impending move or assumed her refusal to accept it made it go away.

Today we will arrive a half hour before the movers are set to show up. We know it’s not going to be easy, but the day is here and we need to help our parent’s manage through and make this transition. It’s the best place for them going forward. Undertaken.

I’m calling a lawyer

My parents have now been notified that they are going to be moved into Assisted Living in two days. My mom is very upset over this and wants to fight it while my dad has agreed to go along with the recommendation.

legal scaleWe tried to prepare for this and limit the escape options. Our parents have surprised us with their smarts on this journey. When we thought disabling the car would keep them from behind the wheel, they manage to get someone to “fix” the car. We know to stay on our toes now.

After lunch, my mom decides that she’s going to demand 30 days notice and wants to speak to a lawyer. My mom get’s my dad back on her side and announces “I’m calling a lawyer.”

The retirement community did not do notify my parents and expect them to move in two days. They called me about this two weeks ago and I asked for some time to put the pieces in place so that we could make this happen. Part of the process included getting outside counsel from a lawyer to confirm that they had the right to move my parents and on a time line the retirement community could dictate. I also wanted to make sure my siblings could be in town to help and show a united front in support of this move.

My parents have done enough things, and most recently something that could have harmed another resident, that the retirement community is invoking the rights my parents gave them when they moved in. The retirement community is going to transfer my parents into the next level of care. The retirement community tried to help my parents get to this decision on their own, but none of the attempts worked – this is the last option.

We sit as my mom goes into the kitchen, picks up the phone, has a short conversation requesting a meeting about “real estate” and confirms a meeting at their apartment tomorrow at 1 PM. My mom returns and shows my dad the name of the person she called. It happens to be a lawyer listed in the directory of the retirement community. Witnessed.  

We are moving you into Assisted Living

moveThe Executive Director (ED) of the retirement community requested a meeting with my parents. I know she will be informing them they are being transitioned from Independent into Assisted Living. We arrive and are sent back into the conference room. My mom is chattering away, she is nervous. She has no recollection of this meeting room although we have been in here together at least twice before in the past two months. The ED and Manager of Independent Living join us. The ED explains why she called the meeting and informs my parents that in two days, they will be helping them move into their new apartment in Assisted Living. She hands them a copy of the letter detailing this change and the move date.

My mom tells the ED she won’t be moving and challenges her to provide specific incidents as to why this change is being made. The ED agrees to deliver a time line of events later in the day but does detail several recent incidents. My mom refutes each one. Deftly, the ED suggests we go look at the new apartment.

My dad agrees and asks if I will come along. I tell him I will. My mom refuses to go. As we are walking out, I ask my mom if she will join us. She has decided to stop and get some tea instead. The Manager of Independent Living says she will walk down with her once her tea is ready. My dad and I leave with the ED.

We arrive and I can’t bear to watch my dad. It’s a bedroom, living room and kitchenette with one bathroom. It’s the largest of the Assisted Living suites. My parents are both very mobile, which isn’t always the case for those moving in, which is why most Assisted Living units are so small. My parents are having to move from their 3 bedroom, 3 bathroom expansive apartment to this 400 square foot apartment.

My mom arrives and complains about the size, the carpet, the kitchen … the ED does a great job of selling the benefits and the positives.

The walk back to their apartment is quiet. My mom is holding the letter in her hand and no one talks. I am worried about what will happen when we get behind closed doors.

I text my brothers “911” so they know to get to the apartment immediately. I’m going to need some reinforcements. Revealed.