Denial, anger, bargaining, depression, acceptance: all the classic stages of grief. As a caregiver, I’d add another stage: burnout. My mom’s memory started to fail about 15 years ago, and my role as her caregiver started with an occasional offer of assistance, “Here, Mom, let me help you with that,” and progressed to a cry of despair, “I can’t do this anymore.”
Honestly, my first reactions to Mom’s first symptoms of Alzheimer’s weren’t nearly that gentle and understanding. Denial takes many forms, and sometimes those forms are not very pretty. Her first obvious symptom was what I call conversational loops, telling the same story or asking the same questions 3 or 4 times in 15 minutes.
My mother had a history of contracting every disease she read about in the newspaper or saw on TV, so when she started the loops, I told myself she was just acting the way she thought a person of her age should act. My friend Mary, Mom and Dad’s second daughter, made a game of it. “I see how many different ways I can answer the same question truthfully,” she said. I wasn’t nearly as compassionate.
Denial and anger are not a pretty pair. I was frustrated and scared, and since I couldn’t get to the disease, I vented at Mom. “I just told you that two minutes ago, Mom,” or “You’ve told me that 3 times in the last ten minutes.” Not my proudest moments. I remember one afternoon when Dad was in the hospital and I was helping her get ready to go see him. I snapped at her about some trivial irritant. She was still aware enough at that point to understand some of what was happening but was powerless to control it. She looked at me with hurt in her eyes. “You don’t have to make me feel bad about it.” I don’t have to tell you how small I felt and how much I wished I could take back all the harsh things I said to her during those months. But I couldn’t, so I bargained. I didn’t do the “God, if You’ll heal her then I’ll…” kind of bargaining; I tried to fix it.
If I could just find the right doctor, get her started on the right medicine, offer her the right kind of assistance. But as all Alzheimer’s caregivers know, no matter how good a job you do, they won’t get better. This insidious disease will wrap their minds in plaque-covered nerve tangles until they forget what you told them, they forget who you are, they forget how to care for themselves, and eventually, they forget how to breathe.
Depression? You bet. The doctors didn’t help, the medications didn’t help. I continued to watch my mom slide down the slippery slope into forgetfulness, and there wasn’t a thing I could do about it. But my caregiving duties continued to increase. First I made occasional visits, I checked to see that there was no spoiled food in the refrigerator, I reminded her to change clothes. Then I made daily visits, I prepared and served meals, I laid out clean changes of clothes. Then she came to live with me, I cut her food and reminded her which utensil to use and how to hold it, I changed her clothes. I could no longer deny what was happening, I was still angry, bargaining didn’t work, and I was in despair
Then one afternoon, after a particularly trying morning, I sat in the swing on the lanai with my Bible, looking for solace. I came across this verse in Hebrews: “For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin.” Yeah, I thought, but Jesus was never a caregiver! “Oh really,” said that Still Small Voice. “Are you sure?” I thought about Joseph. We don’t know a lot about him, and he’s never mentioned after Jesus stayed behind in the temple when He was twelve. Some people think he was quite a bit older than Mary and that he died before Jesus began His public ministry. If he died from a lingering illness, who cared for him? Jesus, as the oldest son, may have helped Mary, especially with the more physical aspects of caregiving. He may have bathed Joseph even when he didn’t want a bath. He may have insisted that Joseph use his cane even when he insisted he didn’t need it. He may have stood by Joseph’s bedside, holding his hand and comforting him as he breathed his last breath.
And what about Mary? One of the last things Jesus did before He died was to give over the care of mother to His disciple John. One of the greatest things about the caregivers’ support group we had in Florida was knowing that you weren’t alone, that there were others going through what you were going through, who knew how you felt. We empathized with each other and drew strength from each other. In those few moments on the lanai, I accepted the possibility that maybe Jesus had been a caregiver, that He really did know and understand what I was going through. I also accepted the verse that says, “I can do all things through Him who gives me strength.”
Linda Brendle
To all of you~coming home for two nights of respite after transferring Mom to intermediate care after a stroke, and helping Dad adjust–I relate SO much to everything you describe. I think what can make it a real challenge is the surge of intense and sometimes REALLY contradictory feelings–overwhelming tenderness, anger, sorrow, fear–they’re hard to separate out, you know? And sometimes it can result in a “lockdown,” feeling zombie-like, etc., etc. Please know that your sharing helps me feel less alone. Deep breath. Huge hugs.
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Carol, I’m sorry to hear about your mother. Just when you think the day to day stress of caregiving and worrying is going to wear you down, a big crisis pops up out of nowhere and makes you long for those “holding pattern” days. You’ve been wearing a lot of hats the last two days: daughter, mother, and healthcare advocate for your mom; daughter, friend, and counselor to your dad. The lockdown is your mind’s way of protecting you – you’re physically and mentally exhausted but you’re still trying to do, give, help, comfort, and care. Your mind is telling you “Okay, go ahead and do, give, help, and comfort if you must,” (and of course, you must) “but stop caring so much for a while or you’re going to wear your nerves and heart out.” That’s when you become a caregiver zombie – your body goes through the motions but you feel numb, and a little slow, like you’re seeing and hearing everything a full second after it happens. This is when we start waving our little red flags and telling you it’s time to recharge any way you possibly can so you don’t get sick. Remember, you can’t care if you’re not there. Like button – group hug.
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Carol, you said it, very difficult to separate those feelings. The sharing of all the good and bad times helps me tremendously and glad to know you feel the same way. It is extremely difficultat times, when I am riding on a semi high (care giving has eased slightly, no immediate pressing life threatening problems) and then WHAM, I hit the skids and it’s all crazy around me, nerves, stress, etc… etc… So I completely understand how you are feeling at this time.
Sorry to hear about your mom, and I know it has to be difficult on you and of course your dad. From one zombie to another, you are doing a great job, take it one step and day at a time, and rest if you can. Hugs rite back @ ya.
~Char
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I just got back from getting a flu shot with my Mom. After reading this, if I could, I would kick myself in the butt. She wanted to drive, and she was going about 35 mph in a 55 zone. I said, “It is 55 mph here, Mom.” and I was a little sarcastic about it, as there was a little traffic behind us. She replied, “I don’t want to go too fast cause my reflexes are a little slow this morning. Not every day, just this morning.” I wish I could take things I say back, or better yet, not say them at all. And Jean, you were so right, we ARE scared, worried, and I don’t want to lose my mom. But I know that time will come and then I just get all blubbery thinking about it, and start crying, and all it does is make my eyeballs feel like boiled onions. So thanks Cindy, Linda, Jean and Char. I feel like I am not alone in this, today.
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All we’ve read here shows us that sometimes we are unncessarily hard on ourselves, although we should always strive to do better. We are only human and will sometimes fail at times despite our knowledge to the contrary. And sometimes, in the midst of all that’s swirling ’round us, what seems so very simple to another, appears so differently to us. It’s wonderful to have the objective eye of others at DHL that care so deeply; it enables us to see things much more clearly.
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Thanks so much Cindy. You are right about the objective eye of others at DLH. It is better than the eye in back of my mom’s head. ;o) I always remind her eye doctor to check it during her eye exams. LOL Wouldn’t want that eye to go bad. LOL Everyone here is so wonderful. I love everyone and wish I could just give all of you a great big hug.
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Bev,
Once you are here, you are never alone, and isn’t it great, how we all can help each other sort through the fear and anger. Having lost one parent already, I am even more greedy with the time I have left with my mom, and super aware of the clock ticking down. AND yet, Bev, I lose it at times with both my mom and husband, so go easy on your sweet self girl, we don’t want your pretty eyes going to the onions!
~Char
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Oh Dear Bev – Here’s a virtual hug. Hindsight is ALWAYS 20/20. I lost my Mom in February of this year. We were close and so much alike that we often drove each other crazy. Forgive yourself – and keep being the great daughter that you are. As I enter the “driving and dating” years with my own kids I know my Mom is up there chuckling knowing she taught me what I needed to know, whether I know it or not. We all do and say things in this journey of caregiving. Are you doing the best you can right now? Mission accomplished :0)
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Thanks for the hug. I can use all of the hugs I can get. I find that I am like my mom in so many ways as I said in Char’s reply. I don’t have children but I have a wonderful guy that loves me, but I don’t want to get married. He lives an hour away from me so we have a weekend relationship. He worries over me, and Mom both. He knows that Mom and I try to stay on our feet so if the other gets sick, we can take care of each other. (Only child syndrome, too) I try to do the best that I can and I see little things slipping away from her…not horrible, no one would notice but me. And it breaks my heart. I just feel that I may say the wrong thing and it sets her off, and vice versa. Thanks for the support and hug. Very much appreciated. I just hope that Daddy can what I am going through with her. She was that way with him, I feel he is chuckling at me also, like you, with this twinkle in his eye saying…”Now you know what I put up with all those years.” My Mom has a control issue, and it has been a sore spot all through my life. Again, thanks.
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When I lost my Daddy, 6 months before my Big C diagnosis, I thought my world would collapse from the sadness and grief. I want to do more with my mom, but we are so much alike, that we clash. We both want control and neither of us is able to give an inch. We don’t fight, we just don’t speak to each other for a day or two. I cry alone. I don’t want her to know that I am so afraid of the day when I may leave her alone or when she passes. And I know that Arlo won’t order the M & M’s. That is a big concern of mine, too. LOL Thanks Char…you are an angel.
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Bev,
It must have been so horrible after losing your Dad to hear the diagnosis, you really are such a strong woman. I do know how you feel about your Mom, we have our daily “discussions” at my home too. In the long run we are scared, and want things to remain as they were, when we were younger. I am sorry for your lonely tears, but know I have those times too and maybe they might be at the same time as yours…. so…lets just think that way, ok?
As for the special M&Ms’s not to worry, I am a born nag, and will pester Arlo until the order is in.
~Char
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Linda, Jean, & Char, wow! This new story and all the comments you made brought back some long ago memories and also helped me to understand some things that transpired at that point in time.
In 1975, my mother was 46 years old and woke up exhibiting signs of a stroke, although she was still somewhat coherent. My sister, 6 years my elder and 22 years of age, and I were the only ones who lived with her. I don’t even think we had 911 then; my sister and I just insisted on throwing on her coat and driving her to the nearest hospital, despite her inclination not to go.
I remember watching my elder sister closely (I was only 16 years of age) and noticed how angry and frustrated she got with my mother, especially once we reached the hospital and attempted to walk her into the ER with one of her feet dragging badly. My mother died 3 days later and we did not have the opportunity to be a “caregiver” to such a special person.
I have never resented my sister for the way she acted, but I always remembered her actions in that oh so pivotal point in our lives. Reading the entries by all of you helped me – 37 years later – to see that my sister was merely acting in fear, anger, and silently yelling all the things Jean mentioned in her September 25th entry in the 2nd paragraph, and she especially felt the burden of being the oldest and in charge at that moment when she herself was barely an adult.
As my mind and heart opened, I cried as I read your entries, enabling me to achieve a long-awaited healing of sorts. And Jean, you are so surely right in saying that Jesus encompassed compassion and healing beyond compare; it was all too apparent in the days that followed my mother’s death. Thank all of you for teaching me something in a new perspective. And thank you so much for all you do for those confronted with these types of obstacles, especially your own loved ones. Peace surround and fill all of you.
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Cindy, isn’t it amazing, what sharing stories can do? It gives us the opportunity to recognize those human reactions we have hard wired into us – fright or flight. Caregivers stand and fight, and do their best to handle a situation that may be freaking them out. In emergencies they take control, bark orders, use what ever physical and psychological means they have, to get their loved one to the help they need. I’ll bet your sister still relives that day and thinks she was being “mean”, and wishes she could go back and do it differently. My gosh, what an incredible burden for a 22-year-old! I know she was terrified, but she got you and your mother there. She probably berates herself for everything she did, maybe even blames herself for not getting help in time. If your sister is still alive, I think a phone call from you, thanking her for taking charge that day, could go along way toward healing her heart.
I’m so glad we were able to ease your heart and help you release some of the anxiety of that terrible day. Nurture this little seed and let it grow…
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Thank you, Jean. I had not thought of things in the perspective you addressed pertaining to my sister. I will defnitely put in a call to my sister to let her know that it may have taken me 37 years to acknowledge her strength of mind, spirit, and enddurance on that horrid day as well as the days that followed, but that I love her all the more for it. Thank you so much.
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Dear Cindy,
My heart was hurting for all of you as I read about that horrible day in 75′.
What strength you and your sister both displayed in a time of crisis. I am so sorry you lost your mom at such an young age. I hope when the time comes I will be able to be as strong . Jean’s perspective is always so rite on, I am blessed to have learned so much from this site and from all that post here.
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You get an “Amen!”. Char!
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Hi Jean and Char,
Thank you both for your insightful and encouraging comments. I am actually a retired caregiver. Mom and Dad moved into assisted living near my brother last December, and Dad went home to be with the Lord in May. As their condition deteriorated and I could no longer stay stuck in denial, I was able to modify my behavior and become a little more patient. I was far from perfect, but I was at least a little better. But I continue to write about my experiences. As I told my Pastor this morning, I still carry a lot of that caregiver angst, and it helps to get it out. It also helps when something that I write touches or encourages someone else in someway. thank you for providing a forum where I can do that.
Blessings,
Linda B.
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You have encouraged me, and again I thank you for showing the way. The road ahead for so many of us, is far from easy, but made more so by the generous souls such as yourself that share their experiences, and help us do what has to be done.
~Char
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Dear Linda,
Over the last few months, I have noticed my mother (91) failing; her memory, her ability to walk straight, etc. and I have continued to deny it, yelling at her for forgetting, for making me repeat everything I say two to three times. Thank you for reminding me, in this care giving situation that I am not alone, with your beautiful story. Patience has never been my greatest virtue, and as she fails, I am afraid whatever I still have in the patience department, will too. You have done a wonderful job of caring for your parents. When you wrote the words your mom spoke: “You don’t have to make me feel bad about it”..wow, this really hit home for me. Your story allows me to learn there is still time for me to turn MY attitude around, while she still understands. She has had to endure my lack of sympathy, caring and understanding… as this burnout has a habit of rearing it’s ugly head with me, more times then I would like to admit. I am glad you found peace,I will follow your lead and look for guidance and strength from a higher power.
Thank you for sharing, caring and understanding.
~Char
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Char, Linda, remember when we were teenagers, going out at night: sometimes we’d get home later than expected and our parents would be furious with us. (My mother’s refrain: “You had me worried sick!”) They’d rant and rave until they got all the worry and fear out of their system. They were worried that something bad might have happened to us; they were afraid and feeling helpless. Those feelings sometimes come out as anger.
I think that’s what happens to us when we’re caring for our elderly parents. We lash out because we’re scared and worried and feeling helpless. When you’re berating your mother for her mental failings, what you’re really saying is: “Stop changing! Don’t die! Don’t leave me! Don’t forget me! YOU’RE SCARING ME!” And maybe some of our fear is that we’re looking at ourselves in 30 years. Is this our inevitable fate as well? If our mothers were running senior marathons, what comfort it would give us, to think those genes were running through our bodies too!
Add stress overload and a lack of sleep to the worry and fear, and BOOM! We react like a cranky human being, when we’d rather respond like a compassionate super-hero. You’re being unreasonable; with your parent AND with yourself. Your love, fear, and fatigue come out resembling anger, which makes both of you feel bad.
Acknowledging these underlying emotions will go a long way toward helping us deal with our parent’s mental and physical decline with more sympathy, and less fearful anger. And a super-human apology now and then will help keep things in perspective too. “I’m sorry I yelled at you, Mom, I’m feeling cranky today. I love you so much, please forgive me.” And then, of course, you’ll be able to laugh at the irony when she doesn’t remember what the heck you’re talking about…
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When the fear, anger and fatigue hit all at once and start the ball,(fatigued/stress/ temper/anger tantrum) rolling it usually doesn’t stop until I hit bottom, which has me crying and feeling extremely guilty. Great to know I am not alone in these feelings. Trying to put a lid on the growing fear, by doing my best to take each day at a time, with compassion and a smile, weak, but still a smile :/ Thanks to you both Jean and Linda.
~Char
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Jean,
This explanation of how our fear comes out in anger was very comforting to me. I have been having much guilt for not having been more of a companion to my husband once his brain tumor robbed him of his ability to think like an adult. I keep wanting to believe that had he lived longer I would have been able to face the reality of what was, and learn to care for him more compassionately, less driven to “fix” what I know now could not be fixed. Your words have helped me to realize my reactions were not those of a mean-spirited spouse but of a very scared, sad and exhausted one.
No matter how much we encourage caregivers to try to enjoy their loved ones as they are, I think the loving caregiver must understand that they themselves will sometimes “break”. This is when they must go easy on themselves and give themselves a break! It may not always be perfect, but they are doing the best they can.
Betsy
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Char,
You seem to me to be one of the kindest people I have ever ‘known’. You talk about patience not being one of your virtues. Are you sure? What you’ve been going through, seems to me, must take an awful lot of patience (as well as MANY other virtues). And you’re always so sweet to all of us.
You are full of concern and affirmations for everyone who comes to DLH–I hope you feel the same coming back to you many times over as you continue to care for your mom and husband. I really believe that that is often how our higher power brings us the strength and guidance–thru those who care about US!
Feel wrapped in hugs!!!
Betsy
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Sweet Betsy,
Your words are warming to my heart, thank you for you very kind remarks. You are so right on in the feelings we as caregivers have and the fear that we carry. I break a lot, pick up the pieces and move on, chalking it up to life; good with bad, happy with sad.. peanut butter with jelly too sometimes There are moments when all I can do is laugh out loud, because it hurts my eyes less than tears…. As our friend Bev said, her eyes look like boiled onions after a good cry! Thank you again, for understanding and for just being you.
~Char
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Linda, thank you for sharing your story so honestly and beautifully with us. I had a dream about my mother last night, I was trying to calm and lead her because she was so confused. Strange how our lives carry over into our dreams – why can’t our loved ones be happy and healthy, at least while our subconscious is in charge? You aren’t alone, we all know how easily frustration and fear can reveal our human frailties. Jesus was a healer and a man of great compassion, most definitely a caregiver, thanks for reminding us. ~ Jean
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