A little over two months ago, my mother had a stroke. I have been posting blog articles that I wrote in advance during the time since she was taken ill. I thought it was time now to share some observations about the situation with you.
In a wicked irony, the stroke occurred on the very day I posted my article, Growing Up, about the changes in the relationship between my mother and me.
I have been examining the transitions in my life since retirement in excruciating detail in this blog over the past ten months or so. Despite this little exercise in egomania, the day my mother had her stroke I learned that I know exactly nothing about adapting to change. Whining about my sod drama pretty much loses its “oomph” when compared to this.
When I went over to my mom’s mobile home (where, yes, she was living alone… as I have had to shamefully admit to one medical professional after another over the past several weeks), she seemed, at first glance, to be asleep. That wasn’t too unusual, especially since she had been staying up to all hours to watch the Olympics on TV. However, I quickly noticed that something was very wrong. Her “magic button,” that is supposed to be her lifeline for help in case of emergency, was on the charger rather than around her neck. I pushed the button and got emergency services, but it is likely that she suffered the stroke several hours earlier.
My initial reaction was pure guilt. How could I have let her live alone? How could I not have been there when she needed me? How could I have moved her from the world she knew across the country to a very different life? Have the adventures, fun, and care I hope I’ve provided for her in her new home been enough to compensate for what she gave up? Has she been happy? Does she regret moving from her old life? Have I done right be her?
These questions quickly morphed into a solid concrete boulder of shame lodged somewhere between my lungs. That boulder remains to this day, impeding my ability to breath, sleep, and eat.
Even as I struggled with this tsunami of self-loathing, I knew this event was not about me. I had to put my feelings aside to focus on what my mother needed me to do… whatever that might be. Once more, I found myself in the situation of having to deal with problems and accomplish tasks I had no idea how to do. Trying to achieve what she needed or would want was made even more difficult by the fact that my mother’s cognitive and communicative skills at that point were just barely above non-existent.
Trying my best and expecting an incredibly unrealistic standard of adequacy from myself, I plowed my way through fogginess and failure and frenzy to work with the doctors, nurses, therapists, and case managers at the hospital. I researched and toured rehab facilities so that, when the hospital suddenly announced on Sunday morning that they were going to release her, I was not completely unprepared. Still, this announcement prompted me to scamper around to ensure I decided on the best facility I could for her. I hope I did, but there is really no way to know.
While I was pushing my way through the tasks and decisions necessary and keeping other family members informed, I realized I was also pushing through something else. There was a sadness so deep and dense and profound, it felt like everything I did, I did while swimming through a turbulent ocean of jello.
My mother was living her worst nightmare. As her body has aged and worn out, she has always said she could live with whatever physical impairments she had to face, as long as her mind still worked. Now exactly what she has dreaded for years has happened. Her brain in broken. In the early days after the stroke, it certainly looked like there wasn’t much hope of fixing it. I couldn’t make it go away. It felt like there had to be something I could do to fix it, if I could only figure out what.
Maybe for the first time ever, I truly, truly understood what people mean when they say “my parent wouldn’t want to live like this.” While I’ve always understood the general concept, I couldn’t help feeling that there was at least some measure of self-interest behind the statement. Maybe the person is actually despairing over how she will take care of the parent without losing her own physical, mental, emotional, and social health. Maybe she is despondent over finances. Maybe she is hurting unbearably watching the parent suffer. However, after seeing my mother for the first few days after the stroke, I could understand the belief that a person would not want to continue to live in that state, self-interest completely aside.
I don’t say that self-interest is part and parcel of the “may parent wouldn’t want to live like this” reaction to imply criticism. It is absolutely fair, right, and necessary to consider self-interest in making decisions that will impact your life. Good people consider all interests, including their own, trying to figure out the right thing to do when faced with a bunch of really bad options. Balancing those interests to pick the course of action that best meets the most needs can be unbearably hard and scary, especially when one of the interested parties has severely impaired cognitive and communicative ability. I find myself trying to think what my mother would have wanted, based on her general philosophies, before the stroke. That at least gave me a starting place. That methodology does have one major flaw, however. Before the stroke, she had only a theoretical idea of what she would feel like if she was ever in the situation she is in now.
I usually do not sleep at night. I spend the nights on the internet, futilely looking for any information to make me feel better. I make endless lists of tasks I have to complete. Each morning, I face the day with dread. I dread watching my mother struggle and hurt from the therapies and transfers. I dread tracking down one or another care professional to get the status of her condition. I dread the administrivia that I had to try to conquer without a legal power-of-attorney. I dread the decisions that were going to have to be made about her future at some point. I dread trying to find the right words to update friends and family about my mother’s progress and prognosis. I dread facing the financial cataclysm this situation will cause. I dread the mourning for the loss of my mother as I knew her. And at the same time, I am ashamed of myself for being mired in dread. This isn’t about me; it is about my mother. Truth be told, the thing I dread the most is facing another day of not being able to illuminate the dark place that my mother’s brain is struggling so hard to escape.
As the days progressed and my mother got therapy at the rehab facility, her situation starts to improve. Her physicality is improving, as well as her cognition and communication. The advances are tiny and we are both impatient, but those advances are steady. I acknowledge and celebrate those small victories daily. At the same time, each day exhausts, overwhelms, and guts me. It is hard work to encourage her to do physical activities to maximize her therapy and to come up with exercises we can do together to strengthen her. It takes incredible concentration to patiently listen and follow what she is saying. It takes patience and respect to try to converse with her in a way she will understand. It takes so much resilience to face her slips into a different time or situation on those occasions when her increasing cognition takes a detour. It takes so much faith to keep going when she bounces back and forth between the hospital and rehab facility, as the medical providers come up with additional concerns to be evaluated. I’m doing the best I can. I am sure I am not doing it right. I’m just doing the best I can.
While my mother battles with her physical recovery and I deal with the pragmatics of her care, we have sad, sparse conversations about independence, finances, and dignity. I tell her I don’t want her to worry, but I don’t want to lie to her, either. Some of these conversations are challenging, but, so far, they have also been productive and satisfying. We try to be hopeful. We try to maintain some happiness in what we share and what we still have. In all honesty, though, joy is in short supply. It is important to keep looking for it, though. Maybe, just as a flower grows towards the sun, my mother and I can learn to grow towards joy.
As we make some progress, I start looking towards the future and what the “new normal” will look like for both me and her. I am beginning to learn that there is really no way to know. Maybe learning to adapt to change means you just have to be able to stand at the edge of the great blackness of the unknown and take a step into whatever is. I just don’t know if I am brave enough to do that. I also don’t know that I have a choice.
So what are your thoughts? Do any of you have any suggestions about how to surf these challenging new waters without getting pulled under the waves by the undertow? Please share your perspective by leaving a comment. In the alternative, you can send me an email at terriretirement@gmail.com.
Thanks for reading.
Terri
Dear Terri….Dorry….my friend….You are in my prayers daily as you try to reach out for your dear mother during this time of the unknown. It is hard to know how to reach her in her mind during a stroke. I had a similar experience with my Aunt Viola when she had a stroke at my apartment in Buena Park at Thanksgiving time. She was just sitting there and started to talk. I could not understand her and she got angry because I couldn’t answer her. Such a sad time it was for both of us. I finally did see some smiles and clearer language, so i took her back home to Town & Country Manor in Santa Ana in my car when she was more clear in her speech. They worked with her there and I finally came home, but not knowing what would happen overnight. She had had a mini stroke and was clear in a few hours. But I felt so bad not knowing what to do. I did have power of attorney so that helped and she lived for month after that occurrence. So I understand a little of what you are experiencing. It is not your fault what is happening. But I understand how you feel as well. May God give you wisdom in how to deal with all this. It is so hard, because you feel so bad. You are doing the right thing. Time will heal her and you in your feelings. I will continue to pray for you and for her during this trying time. With love and prayers, Lois Kemerer
Lois, thank you so much. Your love, prayers, and support are such a beautiful gift to me!
First of all I have to remind you that you are doing an amazing job taking care of your mother. I have shared some of the experiences I have had with my 90 year old father, but I have three brothers to lean on and we are able to support each other. I could not even imagine doing what you are doing for your mother and doing it alone. I know you have a brother but he doesn’t live nearby so the full responsibility falls on you. What I have observed is a strong, persistent, organized and responsible daughter who loves her mother very much and will do whatever it takes to help her and be there for her. I know how easy it is to feel guilty, in fact much of what you describe sounds like the grief process that I know very well. It’s ok to feel those feelings, but continue to do you as I know you have, to reach out to your friends, do the fun things that you love, and give yourself a break once in a while!! You are doing an amazing job!! I also will continue to pray for you and your mother. For you, I pray that you find the strength to continue on and strong sense of hope that the days ahead will be brighter! Your friends in Highland Lakes are always here for you!! -Kathy
Thank you for your prayers and your encouragement. I very much appreciate you and my other HL friends who try to keep me afloat!💗
Oh my goodness, I am so saddened of your news. I hate that I didn’t know you were going through such a traumatic time, and I hate that over in New Zealand there is probably nothing I could do to help anyway. You have written a very raw story of your situation and I think it is honest and true and that you are doing amazing dealing with the cards you’ve been dealt. I can only imagine how devastated you must be. I am truly sorry that this has happened. As my mum turns 80 next year, these situations become more of a possibility, and with that possibility it scares me to death. To lose my mum in any capacity feels like more than I could bare. I guess you just go in to autopilot and do what needs to be done. It sounds so all encompassing though. I pray that your mum continues to improve, and also prayers for you to keep up the hard yards. Somehow my best wishes and prayers don’t seem enough though. Thinking of you and sending lots of love! Shari ❤️🙏😥
Thanks, Shari. It is truly the most difficult thing I’ve ever faced by far and the knowledge that things are not likely to improve substantially makes it even harder. There isn’t a lot anyone can do to help me, other than love me and pray for me. Luckily, those things can be done from anywhere in the world! Thank you so much!
Good morning Terri. I’m so glad you decided to share this with your readers. I feel for you and what you are going through. You write so poignantly about the struggles that you and your mom are going through. I have always found that my best writing occurs when I am writing from my heart, and that is what you are doing.
Your description of your introspection is just amazing. Sometimes it is hard to go through that process and be able to maintain a clear head and not be pulled under by emotions. Your mom is lucky to have you. Trust yourself, knowing that you are doing your very best for her, and for yourself (which is important too!)
Please continue to share your thoughts and your struggles with us. I find that the very act of writing is a way of processing what our thoughts and emotions are. The only other suggestion I have is to try to find someone you can talk to, confide in, on a regular basis. I am in the process of doing this myself. As strong of a woman I am, I know that at this time in my life I need a little extra support to help me navigate this next stage of my life.
Sending healing thoughts and best wishes your way Terri.
Thank you for the kind words, Carole. I agree that it is helpful to “write out” the tough emotions. Talking is good, too. I just worry that I’m going to bore my friends or drag them down, too. I remember a line I heard in a play once… “For those people so lacking in courage, all we can feel is pity.” I want to have courage and I know my friends want to support, not pity, me. If I get to the point where I’ve worn down my friends and all they can feel is pity, I guess it will be time for professional help.
Terri, your post is truly heartfelt. I am reminded that we don’t get to pick the outcome when it comes to a health event such as a stroke. It’s a reminder to me to have a plan for end-of-life care and health management. You’re doing the best you can and that seems to translate into an amazing job. You show courage in being afraid but doing it anyway. You say it isn’t about you, yet it is when you’re the one responsible for managing your mom’s care – one of those it is/it isn’t situations. Her care is paramount but your self-care is very important, too, as Kathleen said in her reply. Remember what’s said on an airplane – put your oxygen mask on first. You are part of a care community that includes family, friends and professionals. Isn’t it interesting how the care responsibilities often fall upon the female in the bunch? Prior to my dad’s death 13 yrs ago, he lived with bilateral amputations. There was a time in my life when I would have said that my dad would never have lived well without his legs. He proved me wrong. I learned to withhold my judgements about how people would react to a situation when confronted with it. Can we ever really know? I’ve also learned that people may not always have a memory of who you are in their heads (cognitively) but they hold a memory of you in their hearts (emotionally). Trust that you have a place in your mom’s heart.
Thank you for such a thoughtful and helpful comment, Mona. I am going to try very hard to keep your perspective in mind. Thanks for reading and commenting!
Thanks so much for opening up your heart and mind, all your feelings and struggles at this difficult time. Many of us will face or have faced the illness, disability, helplessness of parents, spouse, children, friends. The role of caretaker can be so tough and lonely. You are brave, compassionate, loving. As others have said, most communities do have caregiver support groups, as well as your friends, church groups and other support for YOU. Don’t hesitate to reach out.
My husband had a “mild” stroke, which impairs just his balance and vision. But, I sometimes find myself angry that he has become so dependent on me. He can still do all the basic self-care, but can’t drive or do the vacuuming, shopping, walking the dog, etc. that he used to do. Then I realize it could have been so much worse and we can still do many things together. Just letting you know you’re not alone if you sometimes feel negative emotions. My support leader actually encourages us to express everything we have been feeling and not sugar-coat it. Bless you and thanks for your wonderful writing.
Thanks, Joy. Sometimes I am angry that my “real life” has wandered off and I can’t find it. On the other hand, there are triumphant moments that are satisfying. Next week, I’m going to try to post an article that highlights those victories. The negative emotions are definitely there and it is counter productive to ignore them, but I also don’t want to get stuck in then!
My mother spent the last nine years of her life in a nursing home. She was always so active I never thought that would happen to her. I was her health care proxy and had power of attorney. I was always second guessing myself- sometimes the right choice is not always clear. Just do the best you can and you will have no regrets. Noone can ask more of you than that. I cherish that time that I got to spend with my mother -even with her dementia she still knew me. Good luck on the journey. My thoughts and prayers are with you.
Thank you so much for the encouraging words. No one knows what the next moment will bring. I agree that it is so important to try to cherish each moment as it comes. Sometimes that is easier said than done, though. I have such a tendency to look back and to try to plan for the future. I really need to develop my “living in the moment” skills. I think it will be easier to cope with all that is happening if I can somehow learn how to deal with just what is in front of me.