I have a featured Guest Blogger this week named Pete Springer. Pete is the author of They Call Me Mom, a book based on his 31 years of experience in the classroom. Pete spent years caring for his mother. That story continues here in Part 2. It offers insight, advice and a real glimpse into the long journey of caring for a parent.
My parents had the luxury of being able to afford an excellent facility. I know many people who are not so blessed. The next piece of good fortune was that one of my mom’s best friends had recently moved into one of the places my brother and mom visited. She had been one of my mom’s best friends and had lived near her for over thirty-five years. The kicker was that one of the available rooms was right across the hall from her friend. It couldn’t have been more ideal.
My brother and sister-in-law, who had flown out to join my brother, helped facilitate the move into her new room. The assisted living facility was made up of many small apartments. The residents had individual rooms and many other things that made this the best choice. They had a dining room with all their meals prepared. It was sit-down dining, and some people sat with their same friends while others like Mom moved around and made friends with everyone. They held activities nearly every day for the residents to take part in. One of the most beautiful features was that some of the residents had their small cat or dog living with them in their rooms. Twice a week, the bus took anyone out for planned outings into the community. Mom loved all of that and took part in everything when she first moved in.
The bus also helped get mom to the doctor or dentist if we scheduled them on Tuesday or Thursday mornings. That was helpful, but after each appointment, Mom rarely remembered what had happened. It was hard for me to get the information unless I accompanied her.
Mom was able to maintain a fair amount of independence. She had a walk-in shower with a seat, and she was able to manage this on her own for a long time. She developed a regular route to walk in the neighborhood, and this was so important to her. Mom could do her laundry there, or the facility would do the laundry for the residents. She did her laundry independently for a long time. They also had a beauty salon inside the building so she would occasionally make an appointment and have her hair and nails done.
It wasn’t perfect, but it was generally the best option considering the circumstances. After my brother and sister-in-law moved her in, they finally returned to their home.
Mom was showing more signs of general confusion. She didn’t process that this was her new home. She would call me up on occasion and cheerfully tell me that she thought she was ready to go home now. I tried to explain that she was living here now. She wasn’t always pleased with that, but she gradually seemed to accept it.
My wife and I developed a routine with Mom. We were still working full time, but I would always come to visit her on Wednesdays after work. Sometimes I’d join her for dinner there, and other times I’d take her out somewhere. We almost always would take a walk because that was Mom’s favorite thing to do. I also came back each Sunday (we lived 25 minutes away) and brought her to church. She was a deeply religious person and still wanted to attend services at her old church. Her church community was always so welcoming to her (and me as well.) Many weeks some of her old friends would invite her to brunch after mass, and they would take her back to the assisted living home afterward. If none of her friends were going, then she and I would often go out for a drive or a walk after church. My wife was also so helpful because she would visit Mom each Saturday. One of their regular routines was to go shopping. My wife was better at this than me, especially with Mom’s feminine needs.
Over time, I began to see Mom have more issues with memory. She was often confused whenever I would take her somewhere and was bringing her back. She would often ask, “Where are you taking me?” I understood that she was trying to make sense of things in her head, but it was harder and harder for her.
Odd things would happen that left me wondering. One day as we were coming out of church, the priest remarked, “This is the second time we’ve seen you this weekend.” I wondered what he was talking about, and when I asked her if someone had brought her to mass on Saturday, she had no recollection. It turned out that one of her old friends had brought her, but I didn’t know this. I began to look at the sign-in book when I arrived at the assisted living center to see if someone had come to visit her. When I saw that someone had, I would ask her about her visitors, and she would often not recall many of these visits.
While living at the assisted living center was the best option at the time, it wasn’t perfect. Quite a few people were living there, and it was a rather large place. When a resident left the grounds with a friend or when they went out for a walk, they were to sign out. Sometimes Mom would forget to do this, or a person picking her up might not know the protocol. There were times I’d drop in, and it would take me a while to find her. Sometimes she was involved in an activity in a different part of the building. There were also occasions when she’d go out for a walk and forget to sign out in the book. There wasn’t always a person at the front desk monitoring the coming and going of residents.
She still loved to walk, and it was never an issue because she took the same route each time. Then one day she decided to run an errand and go and get her granddaughter a birthday card. That meant going a different way than her usual route. She got to the nearby shopping center, but then got lost and didn’t know how to get back. Some good Samaritan picked her up and gave her a ride. The most unnerving part was that she didn’t remember any of it.
There was a memory care unit on the other side of the facility for dementia patients, and I began asking the owners if they thought she was ready to move over to that side. Knowing that they had much more experience than me in dealing with the elderly, they told me they didn’t think she was ready yet.
We maintained our regular schedule for visiting Mom, but she wasn’t keeping track of days anymore. I started to see that she was no longer reading the newspaper. (We had the newspaper delivered to her there because she liked to read the paper.) I would check her mailbox and find that she hadn’t been looking at her mail. Since her bills were paid automatically, that wasn’t a huge concern. Sometimes I’d discover correspondence from someone who had sent a letter, birthday card, or Christmas card. We had a telephone and message machine in her room, but she quit listening to her messages.
What was of more significant concern was that when I’d get to her room, she was often missing her glasses or a hearing aid. Sometimes I’d find them in unusual places. She might leave one on the dresser or in the bathroom. She’d forget to take them out, and they might fall out while she was in bed or slip inside her lounge chair. I learned not to overreact because they would often mysteriously reappear. I’d come back on my next visit, and her glasses would be back on her head or sitting on her dresser. She had no memory of them ever having gone missing or how they returned. Since the staff was frequently coming and going, they often had no answers for me either.
One day while we were visiting, her doctor came to check on her. During the examination, she started to have a syncope episode. Syncope is the temporary loss of consciousness caused by a reduction in blood pressure. She became non-responsive to his questions and began to pass out. The doctor was equally alarmed, and we called the ambulance.
There were frequent visits in and out of the hospital. After a while, it all runs together. After Mom returned, she started to sleep more and walk less. She seemed to have less energy. She also began to wander into other people’s rooms and couldn’t remember where her room was.
I was about to talk to the owner about moving Mom over to the memory care part of the facility when the owner brought it up. They had come to the same conclusion that I had—it was time to move to the other part of the facility. She still had her own room over there, but there were keypads on the doors. You could open a door, but an alarm would go off if you hadn’t pushed in the code first.
There were fewer residents in the memory care, and the ratio of care workers to residents was at a more manageable level. Besides the progression of her dementia, the other change was she slept so much more. Even when I’d come to visit, she’d frequently go to sleep while I was there. When I’d propose a short walk, she was turning me down for the first time in her life.
She lived on the memory care side for more than a year, but the quality of her life declined substantially. There were occasional days mixed in when she seemed to have better days, but these became fewer and fewer.
Another fall led to a broken arm in several places. That was the beginning of the end. She stayed in the hospital for a long time, but I got the sense that everything was hard on her. A lot of pain medicines would make her nauseous and loopy, and that was hard to watch. She was eventually discharged and went back to her memory care facility, but it was like watching a fire burn itself out.
It wasn’t long before Mom was back at the hospital. I appreciated the doctor devoting extra time with me to explain what I already knew in my heart. It was time to let her go. My brothers and I set up a conference call and eventually came to terms with the decision.
A few days later, we moved her to Hospice. It was hard, but I knew it was the right thing to do. There is no way of knowing exactly when someone will pass, and I waited for the advice of the professionals for when I should call my brothers to have them come out to say their good-byes. Unfortunately, by the time I made the call, and they were en route, she passed.
The summer before, we held a family reunion. My parents started this beautiful tradition, and we have been doing them for over thirty years now. We meet every three years, and we will continue this tradition as a means of honoring them. Our last reunion we planned at a location close to mom so that we could pick her up each day and include her. It was a special memory because she got to meet her first two great-grandchildren for the first time.
I will conclude with the things I think I’ve learned throughout the process:
- Even though it’s easier to avoid the subject, talk to your loved ones ahead of time. You will want to follow their wishes. Do they want to be kept alive under all circumstances? Do you know what their desires are in terms of a memorial/service? Knowing their thoughts ahead of time won’t force you to make tough calls when you’re in the process of grieving. If there is no understood plan ahead of time, it could lead to disagreements between family members. Mom and Dad also helped by writing some notes about their lives. When they passed, these helped us write their obituaries.
- Don’t try to do everything on your own. There are resources available designed to help seniors that may take some of the burdens off you. Be grateful for the support of others wherever you find it. Look after yourself too. Your loved ones would not want you getting sick trying to care for them. It takes a toll on you physically and emotionally.
- Try not to second guess or beat yourself up over every decision you make. I tried to make decisions based on facts and not emotion. That’s easier to say than do. Mom could be so different from day to day, and this, in turn, affected my feelings. One day she’d be so alert and sharp, and then the next day, she couldn’t keep anything straight.
- One of your most important roles is to be an advocate for your loved one because they may no longer be able to do this themselves. There were a lot of times I had to follow through with Mom’s doctor and caregivers to make sure things happened.
- It’s essential to be respectful and considerate of your loved one’s caregivers. They have a hard job. Some of the people (residents or their family members) were extremely rude. Caregiving is one of the most challenging tasks I know.
Pete’s Blog: https://petespringerauthor.wordpress.com/
Thanks again, Melanie, for providing a place where people can express their feelings and learn where they might get some help for their loved ones. I’m afraid most are going to take one look at my ramblings and think, “I’m not reading all this.” If a couple of people glean something from it that helps, that will make me happy.
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I think you’d be surprised Pete. 🙂 If a reader is in this situation, they will read/investigate the content, no matter the length. Fresh ideas and/or connecting with a similar story is highly motivating. I think it’s a fascinating look “inside” caregiving for a parent. Thank you again for your kind words and for sharing. Happy holidays!
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