A CBS News story As man’s mind fades, heart comes to the rescuethat was shared with me illustrates one of the wild cards in caring for some with dementia or Alzheimer’s. It took me a while to recognize how emotions layered in surprising memories as well as frustrating encounters along my care giving journey.
It’s wonderful story about Melvin who leaves home on foot to get flowers for his wife for Mother’s Day. The local police find him and he is adamant about bringing home flowers for his wife — but can’t even tell the police where he lives to return home. The police help him get the flowers and they return Melvin home to his wife Doris.
As the adult child caregiver, my Dad once told me I don’t understand why you are so upset. He just felt like he was exercising his right to live his life and didn’t know that their retirement community would call me when they left since they were concerned for their safety. I recognized that he would never understand, and had to adapt my own emotions to manage through the events as they happened.
With my parents, the comfort and fun we have shared have benefited me more than having to manage through parents being “parented” by their children. During a rough patch, after I got my emotions in check, I was able to spend time with my parents and find an activity we could do together that restored some of the parent-child interactions and gave them an activity they enjoyed. In one particular instance, my Mom called me twice to tell me they really had a nice time today.
The emotional memories that last may lurk in the background and I hope you will find they surprise you in a positive way along your journey. Reminded.
When 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
We 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.
The 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.
For the past few weeks my mom has given me a variety of reasons to return to their town house:
Mom: “Dad needs to do work in his office.”
Kay: “The boys moved dad’s office to the apartment two months ago. Should we make sure the printer has enough ink?”
Mom: “I need to go get my winter coats.”
Kay: “I just saw some coats in the entry closet. Let’s see if your winter coat is in there.”
We have made these trips, gathered the items they requested, but they don’t remember.
Sometimes, my mom would ask if I would take them to their town house to stay overnight, I then share with my mom that “Dad has been diagnosed with Alzheimer’s and I’m worried about you having to help him alone.”
Telling her this seems to immediately sink in. She knows he has good days and bad days. To almost every question she poses to him he will respond “I don’t remember.” He has yelled at her in public and she has had to have others help her get him back to their apartment — she knows something is wrong with my dad. At their town home, she is alone but at the retirement community she has many around her who can help if dad needs assistance.
I’m thankful that telling this to my mom registers. I wonder if it’s that I can better communicate on her terms by smiling and patiently answering her questions. It could just be that her own survival mechanisms are still intact and she is aware of her own fear. Soothed.
This morning I am told “I don’t understand why, when things are dirty, you need to wash them.”
While this came out of the mouth of my ten-year old daughter, I realized that at any moment I might get the same statement from one of my parents, most likely my dad. He’s been wearing the same clothes over and over and my mom has been encouraging him to get the sweater to the cleaner and go a little deeper into his closet.
My 2013 resolution was for more patience. I’ve talked about it so much that I think my daughter’s resolution would be for me to not talk so much about this resolution.
I got to try out my resolve when my daughter poses this question to me. I was pleased that I was able to get her jacket washed and ready overnight. So the conversation started with me patting myself on the back “Yeah, your coat is clean. It’s ready for you by the front door. ”
I didn’t get back a “thank you” which of course is what I was wanting … but I get back “I don’t understand why, when things are dirty, you need to wash them.”
Humility, patience … the things you need to employ when you deal with a parent who has dementia is also a grace-giving skill when you apply it to the tween who is going to repay to me every unkind word I unfurled on my mother. Deserved.