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Weary of Caregiving
I feel like I’m being nibbled to death by ducks. I’m weary of caregiving. Whenever I think things are getting better something else happens. I worry that I am the person who is holding everything together. I’m frustrated that I’m looked at as being capable and strong enough to help everyone. I’m scared I’m not going to stand up to the stress. I know that others reading this know exactly what I mean. My husband had a heart attack and open heart surgery this fall and was in the hospital In another town for a prolonged period with complications. At the same time my brother was seemingly having worrisome heart symptoms. My son’s father in law had a stroke. The mother of my son’s significant other was hospitalized and died. All at the same time. All of us scattered across the country. We had to cancel a vacation trip. Another family member was discovered to have serious kidney problems.Then it was Christmas with all its attendant responsibilities. Over this time we had out of state houseguests off and on for a total of about three weeks, some of the time to help me with tasks I needed help with while my husband was recovering. Then my daughter in law had issues at work and has been looking to me for guidance and support. Then my elderly mother who lives “independently”, only because I do many things for her, got sick with a terrible respiratory virus and ended up in ER. I had been scheduled for an elective one day surgery procedure in the city away from our town and had to cancel it. Then before my mother completely recovered she got sick with Norovirus and ended up hospitalized. I had to sanitize her apartment. She is back home but has required additional support. Then my husband came down with probably the same Norovirus that has been rampant in our community. I confined him to a bedroom hoping I can avoid catching this and knowing I’m going to need to sanitize this too. Yesterday Mother fell asleep in her chair with a pot on the stove setting off a smoke detector, calling me in distress. Today my husband in his weakened state fell in the bathroom. I had rescheduled my surgery for next week, but am concerned with my husband recovering, as well as traveling while the winter weather forecast is so horrible, hoping I can stay healthy and that my mother manages ok the days I’m out of town. We have a Caregiver Support group in our town. I guess I’m a candidate for membership even though what I’d really like is to just go away someplace by myself, away from phones, e mail, and texts knowing someone else is taking care of everyone and everything.
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Good morning and thanks for the kind words, @virginiatc No saint, just a guy who, like you, did it one day at a time! I'm glad to hear you are doing well!
I like sharing about caregiving here on Connect since I feel free telling it like I see it. I get quite tired of the barrage of (to me) unrealistic hogwash we see, hear, and read far too often on caregiving.
Currently my least favorite is a TV advertisement by a for-profit organization of home health aides, which includes the phrase 'after all we promised Dad we'd keep Mom at home'. GRRRRR! That is not always possible and to set people up and sell that unrealistic expectation irks me no end! When it came on last night I yelled at the TV so loudly our pup jumped up and barked at me!
In second place are the all too common articles by or about celebrities or the wealthy who tell stories of the amazing things they do for their caregiving, which again unless you have 'people', a privileged corporate position, or a ton of money are not what the average person encounters as they struggle with caregiving. Again it sets unrealistic expections for the vast makority of regular folks. Back in 2010 around this time of year (the 8th year of my wifes' war) I answered the phone at my home office. It was exactly 8 am and in two sentences I was fired from my job by my new boss who told me, even though I was the top producer in the division, she didn't want anyone on her team 'who had anything other than the job on his mind', meaning my wife's illness. Two days later I read an article in a national publication entitled 'caregiving was the best time of my life' about a senior vice president who, when her husband was diagnosed with cancer was told by her company she would continue to get full pay, full benefits, all the time she needed at home, and that her job would be open for her when she returned. That one really made me nuts! I don't believe that is the norm and, again, wonder how much damage that does to those who are treated differently by their company. Worse, perhaps, is the damage it does to non-caregivers as they think that is what caregivers get from their employers.
OK, I will put my soapbox away now. I promise! Then again it does feel good to vent 🙂
May the force be with you and all caregivers today.
Strength, courage, and peace!
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2 ReactionsWOW! I never knew others could treat caregivers so badly. Scott I’m so sorry. And after all you so lovingly did for your wife. You are one of my heroes. My struggles are still with getting used to my sister’s limitations. She is still so mobile after a hip replacement and is a “go-er”. I am a “happy at home” person. Nothing compared with you guys. Most of us just keep on keeping on .
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1 ReactionI have the same reaction to that “we promised Dad” ad. I may have yelled at the tv a time or two myself. It is so wrong and manipulative. And anyone who asks a family member to promise something like that, either for themselves or another loved one, doesn’t understand the limits of caregiving or is just being selfish. I can’t imagine what it must have felt like to be fired like that. Here you were already trying to do all you could to take care of your wife, you know, being a good person, and how are you rewarded? By being fired. Geez. Anyway, you are doing good here, and I hope feeling some satisfaction, by letting caregivers let their hair down, in a safe setting and more anonymously than “complaining” to family or friends who can’t understsnd. Some days our personal resources run low and we need to tell someone. On other, better days, we can listen to someone else with compassionate understanding.
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2 ReactionsScott, you are a treasure here. You have such good advice for others and even are able to see some joy through the tears and frustrations.
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2 ReactionsGood morning @sallysue It is good to hear your sister is still a go-getter! That is a great asset for her!
Keep on keeping on and wishing your sister my best --- and to you as well!
Continued strength, courage, and peace!
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1 ReactionGood morning, @susan2018 It is really nice to know I'm not the only one who reacts to that advertisement the way I do! Sometimes, in some cases, keeping your loved one at home, no matter how much we may want it, it is simply impossible! They are selling snake oil in my mind!
Tnanks for the kind words and yes, I get find comfort and satisfaction here being able to listen to, visit with, and hopefully help out the Society of Caregivers 🙂 We are a unique bunch, with uncommon, but yet common, struggles, and challenges in the everyday with our patients.
Don't know if I told you my 'pillow' story, so I apologize if I have. For years I kept an old feather bedpillow on our sofa in the living room. Past its useful life, it was my 'bad day' frustration punching bag! On the really, really bad days (every caregiver knows their versioin of that day) I would quietly go into the living room and either cry into it so my wife couldn't hear me, or I would treat it to a good punching session to relieve the tension! It really helped, until one day when I was really at my wits's end and let it rip a bit too hard, tore the pillow, and ended up with a living room full of feathers everywhere! At first I was so mad, then realized how funny it actually was and couldn't stop laughing! I remember my wife asking me why I was laughing while I was using the vacuum!
For old times sake I still keep a pillow on the end of the sofa, but it is an old foam one now 🙂
Cheers!
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1 ReactionGood morning @rmftucker You make me blush! Thank you!
In the early days of my wife's illness when I was really struggling with depression our adult daughter told me I should work hard, each day, to find at least three things that made me happy that day and she would do the same in return. We agreed to send an email first thing in the morning telling each other what our 'happies' were from the day before. Somedays they came easy, some days they were a huge challenge to find and may have been 'I was happy it didn't rain' or 'I was happy I made it through the day not crying'. Hopefully you get the idea.
Now, nine years later and my daughter and I still exchange that email daily!
May some joy come your way today!
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1 ReactionI’m just catching up and I read your post. I understand....and I’m sorry you have so much going on that is just out of your control. some days I can judge what kind of a day it will be by when I start to cry or when the walls start closing in on me. I get it! Join your caregiver’s group...it will help. So will deep breaths!
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1 ReactionThanks for your words of encouragement. You sound like you well know the feelings of sometimes being overwhelmed. A bit of an update here. Mostly things are better. My husband has been doing fine except for a really bad cold he came down with this week. I am scheduled for eye surgery next Tuesday, a procedure I have had to reschedule three times because of my mother’s and then my husband’s hospitalizations. I had a few really bad moments this week when I realized he was sick as he was going about sneezing and hacking away spreading germs hither and yon, wondering if I could avoid catching it. I just cannot call the surgeon’s office and cancel again! So far so good. Another concerning factor has been the weather. We have to travel 150 miles to get to the surgical center and all winter we’ve been alternating between snow, wind and cold. Another blizzard is predicted for tomorrow but it looks like we may be blessed with a window of travelable weather this week. Crossing fingers and making appeals to the weather gods. And because some other gods roaming the universe have a wicked sense of humor, this week I was called back for further diagnostics after an abnormal mammogram. That was another bad moment. Thankfully my clinic got me in for tests quickly and results came back just as quickly that everything was OK. I have discovered a good way to decompress is knitting (quite ineptly, but what the heck) while watching college men’s and women’s basketball. There’s almost always a game on some TV station. You all have the best weekend you can!
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1 ReactionI’m happy to hear things have gotten better for you. It is so important for you to keep up with your medical appointments. I’ve been able to have caregivers here in the mornings ... when I can’t get morning appointments I take my mom along and she comes in the room with me...I do that because she loses track of time and it’s easier on us if she is with me...
We watch a lot of game shows and ice skating. TIVO is my best friend.
Weather has been hard and now that the days are getting longer and Spring is a blink away I’m feeling better. We are in a city with great public transportation and it’s often easier to hop a bus or train than drive downtown and fight that traffic and parking.
A good weekend to you...hope the sun is out where you are because I’m looking out the window and not seeing anything...we are in a fog!
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