I realize that this approach is not a panacea. Just last weekend we were having a cheery chat when my father left to do some grocery shopping. When I told her “Daddy went to the store,” she thought about that and asked, “What’s Daddy’s last name?” But her confusion didn’t sadden me the way it might have before. Even though she may have bad days or moments ahead, for the time being she still knows who I am and we are able to enjoy each other’s company.
I don’t know if my parents’ caregiving story will help anyone else, but I’m very grateful to my fellow contributors who shared their wisdom and experiences in that book. I had no idea I’d be putting them to use so soon. Thanks to Janey’s story, I found the mother I thought I’d lost on a stroll down memory lane.
~Susan Yanguas
Don’t Take It Personally
You can’t live a perfect day without doing something for someone who will never be able to repay you.
~John Wooden
A Note from Joan
When I married my husband, Jeff Konigsberg, I married into a large loving tight-knit family that spends a lot of time together. Jeff’s Grandma Rosie quickly became a favorite of mine, as she was a shining example of an eternal optimist who always looked at life through her “rose colored glasses” (this is something that my mom always suggested to me as I was growing up — in those exact words). When Rosie was in her eighties, she was still getting herself dolled up every day, never missed her hair appointment at the beauty parlor and was still going into the gym several times a week.
Despite her efforts to stay healthy, one day Rosie had chest pains and learned she needed double bypass surgery. Amazingly, at 90 they deemed her healthy enough to have this surgery, and she made it through with flying colors. However upon returning home Rosie just wasn’t recovering well. Jeff and I flew down to Florida with his parents to cheer her up and get her moving again. When we got to her home, I opened up all the drapes in the house and the sliding glass doors that went to the pool area and the sunshine came streaming in on her. I knew that she liked milkshakes so we had stopped to get her a chocolate Frosty. It wasn’t long before Rosie was her smiling self, looking through picture albums and laughing and reminiscing about wonderful times spent together. Our “cheer up” operation complete, we returned home.
Despite Rosie’s wonderful optimistic outlook, she missed her family and she wanted to return to New York to be with them. We once again flew to Florida to scoop her up and bring her home. She literally was singing out loud on the flight home and chatting up the flight attendants like she hadn’t had a chance to talk to strangers in ages. We moved her into a beautiful senior assisted home where she had a lovely one-bedroom apartment and was surrounded by old family friends from her younger days and of course all of her children, grandchildren and great-grandchildren. She was once again coming to every family function, holiday gatherings and birthdays, dressing up to the nines and smiling ear to ear.
We all felt comforted by the fact that we had given Rosie a renewed happiness, a loving secure last chapter. My mother-in-law Janey visited Rosie daily, and took care of her every need and desire. While moving Rosie back home made Rosie’s quality of life much better, it unfortunately did not necessarily do the same for her loving daughter Janey. They had always had an extremely close and loving relationship, but Rosie was becoming more demanding as she grew older and it seemed like Janey could never do enough for her. I have heard about this happening often — sometimes the elderly turn on the family members who are closest to them. It can be very hurtful and it is hard to put in perspective and not take personally.
As the family was planning Rosie’s 100th birthday, she developed pneumonia and in less than two weeks she passed away. Janey has since struggled with the guilt of the sometimes tense final days together. As someone who watched the whole situation unfold, I know that my mother-in-law Janey was a wonderful daughter to her mother, who at times could really be tough on her. I admire Janey for her fortitude and her willingness to hang in there anyway. I interviewed Janey for this book, and as you will see below, she is still being hard on herself.
Joan: Janey, what was your relationship like with your mother in the early years?
Janey: Extraordinary! So extraordinary, that unless you were there, you almost wouldn’t believe it. We had THE MOST fun relationship. We never had the mother/daughter tension that many people experience. We went shopping together, we went out to lunch together, we laughed together, and I was the envy of all my friends. In that time, most mothers looked like “mothers” who stayed at home with their aprons. My mother was young and beautiful, she played golf and bridge and loved her friends, and many of my friends were jealous of our relationship.
Joan: Your father passed away when you were pregnant with Jeff, which I know was unbelievably difficult for both you and your mother. Your mother eventually remarried. Was that hard for you to accept?
Janey: After my father passed away my mother had an extremely difficult time. She was 50 years old, vibrant, beautiful, the matriarch of her family, and was now alone. She had no interest in dating and was in a very tough place for a while. It took her a long time before she was ready to date again. Then, when her friends introduced her to Bill, a member at their club, she got swooped up and married him within two months. While Bill was enamored with Rosie, he was less taken with her family and he soon after moved the two of them to Florida.
Joan: About five years ago, the day came when you moved Rosie from Florida, back to New York, where she was again able to spend her days surrounded by her children, grandchildren, and great-grandchildren. How did you feel about finally being able to bring her back up to live in your town?
Janey: I was ecstatic to have her back! I thought that it would be just like it used to be. I knew she had limitations now; she could walk, but with a walker for longer distances and a wheelchair for even longer distances, but for general day to day . . . she could still walk! (Even when she got to be 99 she could still wake up in the middle of the night and get to the bathroom with a little nightlight!) She was still as fashionable as ever — she had pants in every color, one to go with each of her happy, colorful printed tops, and of course perfectly matching jewelry, make-up, and accessories. I thought she was still the same old mom. But when she got back, the complaining started immediately.
I wanted to create the perfect environment for her. I looked at 12 different assisted living facilities before I finally decided on the place I thought would be perfect. It was beautiful, bright, and happy and it didn’t feel like an “old people’s home,” which I knew she wouldn’t stand for. I was so excited to show her what I picked . . . the perfect Rosie place. When I brought her in, she looked around and just said, “I’ll think about it.” That was the beginning of what it was going to be like having my mother back.
Mom was thrilled to have left Florida, but she wasn’t doing so well at adjusting to her new life. She complained about everything: the food, the care aides, the food shopping, everything. I would walk in with five bags of things for her and I would leave with a list.
She was always out of something! It wasn’t enough that she had a container of oatmeal. And it wasn’t enough to have a backup container of oatmeal. She had to have a backup to the backup container of oatmeal. (The big joke was that she had us buy her toilet paper. I would always bring her the toilet paper and the aides would say “but this senior center provides toilet paper!” But Rosie didn’t like the quality, so she stockpiled her own!) I think that when she became dependent on others for her household items, she developed a fear of running out of things. Now in retrospect, I can understand that.
Joan: Your relationship with Rosie became strained, was there a tipping point for you?
Janey: My family and my grandchildren are my life, I love love love being with them and watching them grow and experience their lives. But I do know that they will soon be uninterested in us as grandparents. Kids grow up, they have their own lives, they become teenagers, an
d I get that. So I cherish this time with them, while they are still young. I started to feel like Rosie was taking a lot of this time away from me. I also wanted to tell her everything that was going on with the kids because I thought she would so appreciate it, but I felt that she became very self-absorbed. I would tell her about something one of the grandkids said, or about a soccer game that morning, and she would just say, “That’s nice. . .” I got no validation from her. Now, she probably took that story or anecdote and shared it with all her friends at dinner that night, bragging about her great-grandchildren. But never to me. It was very frustrating because I wanted her to care so badly the way that I do. That was hard for me.
Joan: I think there’s a natural tendency to want to live in the present, and have our elderly parents also live in the present with us and frankly be like they used to be. But sometimes older people have a hard time connecting with what is going on now; however they have a great ability to connect with the past.
Janey: I wish I had realized that then. But I wanted her to be there with me in the here and now . . . she had just moved all the way up from Florida to be with us! But she wasn’t the same person who I remembered and she just didn’t really connect with me the same. I think I might have felt scared to bring up the past because my brother had died and I thought it might upset her.
Joan: Did you ever resent her or lose your temper with her?
Janey: I never lost it with her. There were a few things that ticked me off. Like when she thought I wasn’t telling her things — keeping things from her — and I felt accused of lying. She thought the doctor would tell me things about her health and I wasn’t telling her. One time she found a wrinkle on her face and told me that she knew she had had a stroke and I just wasn’t telling her. I felt like saying, “Mom, you’re almost 100, you might have a wrinkle!” but I didn’t, because I didn’t want to make her feel bad.
There was one day when my husband Donnie and I were driving in the car with her and she turned and yelled at me, speaking to me like I had never heard her speak before. When Donnie tried to defend me, she snapped at him too. We had never spoken to each other like that in our whole lives. I thought that when she came back up here to New York it was going to be just like it used to be. I thought we would go to the deli and get her favorite sandwich and we would have fun. But there was a tension there that we had never ever had before.
It became uncomfortable to be together and I am so sorry about that. It wasn’t pleasant for me and so I didn’t go just to hang out. I went when I had a reason to be there, something to bring her or somewhere to go with her. I’m very grateful that I didn’t lose it with her, but I also didn’t run to see her if I had an hour free here or there. When she had lived in Florida, I used to send my mom little things to her house for no reason. I would send cards, pillows with sweet sayings, just little things to make her smile. And there I was, living right around the corner from her, not looking forward to spending extra time with her because I knew how she would behave and how hurtful it would be for me. How could this have happened?
Even when you and Jeffrey would invite her over for Sunday night dinner, while I loved that she would be with the family, I knew what it meant for me. Jeff was amazing to do that, but I knew on those nights that she would miss the scheduled aide to put her to bed and that it would fall on me. And that was really a tough job. Besides having to get her make-up off, make the change into pajamas, get her into bed, etc . . . there were her preferences, everything had to be a certain way. The blanket like this, the chair like that, the water filled a certain amount — those late nights were difficult.
Joan: We all knew how hard it was on you and that she really loved you deeply. You did a great job caring for her despite how difficult it was for you. We were all amazed at how healthy Rosie remained, and we were all planning a 100th birthday bash for her in a few months, but one day she complained that she was feeling sick. Tell me about that.
Janey: Rosie really wanted to make it to 100 so badly — she had her outfit all picked out and was excited for her party and all the attention. And it seemed like she was going to make it. If there was one thing Rosie had till the end, it was her health! She really was in great health, but she always thought something was wrong. She would complain about her eyesight all the time even when the doctor told her that her eyes were better than many 80-year-olds! (Rose was 99!) However one day she complained about her breathing so I took her right over to the doctor. She was diagnosed with bronchitis but the doctor told me that he didn’t want to put her into the hospital because he was afraid that if he did, she might become dependent and exhausted and never come out as is common with many elderly people. He put her on a massive dose of antibiotics but told me that “this might be it,” which totally shocked me.
Joan: But about a week later, she was taken to the hospital in the middle of the night. After only a few days in the hospital Rosie succumbed to the pneumonia. After her death, you were feeling very sad about how strained the relationship had become in the final months and it seems like you are still wrestling with unresolved emotions. Tell me about how you felt and how you are dealing with it.
Janey: I felt grief stricken about her death, and about our relationship at the end. And I still am. I remember watching a video at your house that you and Jeff had made of her in her final months talking to the camera. At one point you guys are talking about how great it is that she is back up living near her family and how “you get to see your daughter every day!” She responded with, “. . .well, not every day. . ..” That killed me. I did see her probably every other day . . . but I was not there with her every day the way I felt I should have been. I know everyone says I am being hard on myself, but I can’t help how I feel.
I feel that I shouldn’t have only gone there when I needed to, and I shouldn’t have TRIED to talk so much about the current things that were going on in our lives. I should have gone and talked to her about the past — about all the wonderful stories she had to tell and all the wonderful times we had shared together.
Joan: But Janey, that’s with a lot of reflection, and most people don’t know this before they have gone through it.
Janey: Yes, I know. And with reflection Donnie and I have also come to realize that some of the things we rolled our eyes at with her, she might have been right about! We laugh that as we get older we now understand some of what she would say. We’d say, “Rosie, you should go to lunch with your friends,” or, “Rosie, you love reading the paper; go downstairs to the daily talk about current events.” She would respond, “You don’t know what it’s like to be 99.” Well, she was right! As you get older, you get tired from things that you used to do unfazed. Not to mention, she wanted to take her time to pick out her outfit, put on her make-up, get her jewelry on, and all of this took time and energy! She also thought that some of the other women didn’t need walkers, and she did. Those things can make a person feel bad, and with some time and reflection we now understand that.
Joan: So how are you dealing with these reflections and regrets?
Janey: I can’t say that even after two years that I feel much better about things with my mom. I wake up in the middle of the night thinking about it. I went to the cemetery to talk to her to try to tell her. I just feel that I could have been a better daughter at the end.
Joan: But you brought her back to be with her family and many people grow old all alone, without the loving care of their families!
Janey: Not in our kind of family. You are supposed to be there for each other. I was there for her physically, I did her chores and took her where she needed to go, but I don’t think I nourished her enough emotionally.
Joan: But aren’t you coming to that conclusion in retrospect?
Janey: I don’t want you to think this totally consumes my life. It doesn’t. I am grateful for all the wonderful years we had together. I have so many happy things in my life, and I am grateful and happy. But I do think about this every day. I do wake up in
the morning and wish that I could turn back the time and have a chance to do it over.
Joan: If you were going to give our readers one piece of advice about caregiving, what would it be?
Janey: I would say talk about the past. You tend to want to have the elderly person you are caring for live in the now . . . You know, fawn over the grandchildren, and talk about current events. But long-term memory is usually their greatest attribute, so keep talking about the past and all the joyful times you shared together, and just the things that bring them pleasure. I tried to focus on the present, but in the present, Rosie wasn’t really herself. Now I realize that I could have talked about other things that she probably would have connected with more and taken her mind off of herself.
Also, there are so many things I wish I had asked. There are so many things that I don’t know about her life. I wish I had asked her about when she first met my dad and about their first date. Things like that that I will never get to know about now.
In retrospect, yes, I am dealing with more guilt than I could have ever imagined. But I am also grateful for the unbelievably wonderful years that I spent with my mother. I’ve thought about it a lot since her death and I understand a lot more now. I just wish I could have had this insight when it mattered most.
Joan: Janey, thank you for sharing such valuable insight with our readers. I think your story will be able to help thousands of other adult children of elderly parents who are dealing with their changing relationships, and learn not to take some of the negative changes so personally. Unfortunately they seem to be a fact of life in many end-of-life relationships.
~Janey Konigsberg
Chicken Soup for the Soul: Reader's Choice 20th Anniversary Edition Page 9
