Weary of Caregiving

Posted by susan2018 @susan2018, Thu, Jan 24 2:59pm

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.

Although I haven’t posted since Feb 2019, that doesn’t mean that all has been resolved in my caregiving life. My husband has had followup at Mayo regarding pancreatic cysts that were an incidental finding on scans he had done during his January hospitalization. Long story short, after local doctor appointments, local specialists appts, three Mayo evaluation appts (with some frustrating coordination of care issues), he is scheduled for a Pancreaticoduodenectomy (Whipple) Surgery. We are hopeful and grateful for the care of Mayos’s practitioners. We now can also be grateful for his hospitalization last January that resulted in the discovery of his pancreatic condition, while it is apparently still in a precancerous state. But this past year, which started last September with a heart attack and quadruple bypass has been challenging. In addition my aged mother, who lives “independently” but only with much assistance from me, has had her own health issues and needs more assistance. I am feeling stretched thin. I am taking proactive steps for self care, investigating use of calming essential oils and scheduling an appt. with a therapist to talk about my emotions relating to the challenges of this past year, but unfortunately can’t get in for an appointment for another month. I know my husband is dealing with his own emotions and I try not to burden him with those that are my own to deal with. He doesn’t want to hear my distress, shutting down my occasional release of frustration when one more difficulty presents itself. Perhaps it only heightens his own feelings that he may find difficult to deal with, reminds him of his present frailty after a lifetime of health or even makes him feel guilty (unjustifiably so) that he is contributing to my burdens. I don’t know, but it leaves me feeling alone and even wrong for feeling frustrated. I’ve always been the strong one, the one others turn to and depend on, the one who knows what to do. Right now I’m not feeling that way.

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@susan2018

Although I haven’t posted since Feb 2019, that doesn’t mean that all has been resolved in my caregiving life. My husband has had followup at Mayo regarding pancreatic cysts that were an incidental finding on scans he had done during his January hospitalization. Long story short, after local doctor appointments, local specialists appts, three Mayo evaluation appts (with some frustrating coordination of care issues), he is scheduled for a Pancreaticoduodenectomy (Whipple) Surgery. We are hopeful and grateful for the care of Mayos’s practitioners. We now can also be grateful for his hospitalization last January that resulted in the discovery of his pancreatic condition, while it is apparently still in a precancerous state. But this past year, which started last September with a heart attack and quadruple bypass has been challenging. In addition my aged mother, who lives “independently” but only with much assistance from me, has had her own health issues and needs more assistance. I am feeling stretched thin. I am taking proactive steps for self care, investigating use of calming essential oils and scheduling an appt. with a therapist to talk about my emotions relating to the challenges of this past year, but unfortunately can’t get in for an appointment for another month. I know my husband is dealing with his own emotions and I try not to burden him with those that are my own to deal with. He doesn’t want to hear my distress, shutting down my occasional release of frustration when one more difficulty presents itself. Perhaps it only heightens his own feelings that he may find difficult to deal with, reminds him of his present frailty after a lifetime of health or even makes him feel guilty (unjustifiably so) that he is contributing to my burdens. I don’t know, but it leaves me feeling alone and even wrong for feeling frustrated. I’ve always been the strong one, the one others turn to and depend on, the one who knows what to do. Right now I’m not feeling that way.

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@susan2018 You have had a plateful of things going on! Good for you for taking steps to look after yourself, and understand that you need to have an outlet. Have you asked your husband about some joint counseling, so you may be a united team, and explore how best to approach all you both are facing? We care here, and would like to hear from you again/
Ginger

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@susan2018

Although I haven’t posted since Feb 2019, that doesn’t mean that all has been resolved in my caregiving life. My husband has had followup at Mayo regarding pancreatic cysts that were an incidental finding on scans he had done during his January hospitalization. Long story short, after local doctor appointments, local specialists appts, three Mayo evaluation appts (with some frustrating coordination of care issues), he is scheduled for a Pancreaticoduodenectomy (Whipple) Surgery. We are hopeful and grateful for the care of Mayos’s practitioners. We now can also be grateful for his hospitalization last January that resulted in the discovery of his pancreatic condition, while it is apparently still in a precancerous state. But this past year, which started last September with a heart attack and quadruple bypass has been challenging. In addition my aged mother, who lives “independently” but only with much assistance from me, has had her own health issues and needs more assistance. I am feeling stretched thin. I am taking proactive steps for self care, investigating use of calming essential oils and scheduling an appt. with a therapist to talk about my emotions relating to the challenges of this past year, but unfortunately can’t get in for an appointment for another month. I know my husband is dealing with his own emotions and I try not to burden him with those that are my own to deal with. He doesn’t want to hear my distress, shutting down my occasional release of frustration when one more difficulty presents itself. Perhaps it only heightens his own feelings that he may find difficult to deal with, reminds him of his present frailty after a lifetime of health or even makes him feel guilty (unjustifiably so) that he is contributing to my burdens. I don’t know, but it leaves me feeling alone and even wrong for feeling frustrated. I’ve always been the strong one, the one others turn to and depend on, the one who knows what to do. Right now I’m not feeling that way.

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Hello @susan2018, I so appreciate your honesty as you have expressed that you are "feeling stretched thin," This is so understandable! As @gingerw said, you do have a lot on your plate right now and I'm glad to hear that you are working on some self-care with counseling. I would also encourage you that you get out of the house with friends to see a movie, have lunch, etc. You might check to see if your community offers respite care so that your husband and/or mother do not have to be left alone while you get away for a while.

Do you take walks or do other exercises? There are great YouTube videos, completely free of charge, that can lead you with yoga stretches, Tai Chi, chair exercises, etc. Take a look and see what might be helpful.

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Susan2018,
I know what you mean about being stretched thin, not that my life is the same, but I am dealing with a husband with Alzheimer's Disease and vascular dementia who has been in a care center for over 2 years that is 45 miles from our home. I visit every other day. My youngest son, age 60, has been diagnosed with early Alzheimer's disease and although I don't have his direct care to be concerned with, it is still a concern and I try to help as much as possible. He is unable to work and is waiting for his SS disability to be approved. The government works very, very slowly and he has had to resubmit much paper work and jump through many hurdles with the help of his spouse. I hope this is approved soon. He has contacted our US Senators and has engaged an attorney but the wait is still hard. It shouldn't have to be this way.
I could go on but I won't burden you will all that has happened in the past year in my family. Almost too much. I almost want to say "If I didn't have bad luck, I'd have no luck at all".

Take one day at a time, and the suggestions made by others will help you through. Family and friends are useful at this time. Don't be afraid to ask them. They are just waiting for suggestions on how they might help.

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@susan2018 I know that we’ve corresponded in another discussion group and you seemed upbeat. But I went back further and it seems that you were reaching the end of your rope. How are you feeling now with all your caregiving? It’s always tough being the “strong one” isn’t it? I used to say, “but who’s taking care of me?” Has the therapist helped at all? Please keep in touch-I worry

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@becsbuddy, it was so nice to see your note. As I have written before, a year ago my husband was in the hospital recovering from quadruple cardiac bypass, some complications and a two week hospital stay. Then in January he had a two week hospitalization for some persistent GI issues. During that time scans revealed he had cysts in the head of pancreas, and he was referred to a local specialist who in turn referred us to Mayo Rochester. At that same time my 93 year old mother, who depends on me for help in order to maintain living on her own in an apartment, was recovering from her own hospital stay. We have been on a roller coaster, first expecting a cancer diagnosis for my husband, then after a biopsy thinking perhaps he would escape the diagnosis ,but after a Pancreaticoduodenectomy/Whipple surgery on August 28 getting the news that in fact he had pancreatic cancer arising from an IPMN cyst. We’re home but it’s slow going, the hardest being extreme fatigue. He isn’t able to walk as much as I know would be good for his recovery. I worry that he will not recover to the degree necessary to begin the gold standard chemo at the earliest possible time. Every day brings a new problem for me to solve. And I’ve had a couple bad night’s sleep because my husband’s CPAP machine has been acting up and making noise that awakens me. Today I’m running on three hours sleep. I have done all that I know to gather a support system around me and did meet with a therapist this week for an initial assessment in an attempt to do some self care. I have received support from women in an organization I belong to but have no relatives living nearby who could help. On the one hand, I think I’m doing well considering the circumstances , but on the other hand I recognize that if I saw someone else dealing with what I currently am, I would be considered about their wellbeing.

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I think im getting weary ive got my husband with TBI who is pysically and mentally abusibe a mom who is going down hill a son who is in trouble with the law .and anotber son who is having relstionship troublels with a baby… I some times dont know which way to go ….

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@kw1904861

I think im getting weary ive got my husband with TBI who is pysically and mentally abusibe a mom who is going down hill a son who is in trouble with the law .and anotber son who is having relstionship troublels with a baby… I some times dont know which way to go ….

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Hi @kw1904861 I remember a bit back you posted your husband had hit you in the jaw. Have you reported this to the authorities and are you now in a safer place? I certainly hope so. Your life is obviously overflowing with demands. I hope you place your physical safety as your number one priority.

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@IndianaScott

Hi @kw1904861 I remember a bit back you posted your husband had hit you in the jaw. Have you reported this to the authorities and are you now in a safer place? I certainly hope so. Your life is obviously overflowing with demands. I hope you place your physical safety as your number one priority.

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Im still at home ..i just told his dr about him hitting me..im not sure why im still here ..

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@kw1904861

Im still at home ..i just told his dr about him hitting me..im not sure why im still here ..

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@kw1904861 You certainly have a lot on your plate right now. I know it can be really hard to just think of yourself when it all gets like this. It sounds to me like you’re the strong, supportive one in the family—are you? What did the doctor say when you told him that your husband was being physically abusive? Any helpful advice for you?
My thoughts and prayers are with you always. Get outside and soak up some sunshine

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@becsbuddy

@kw1904861 You certainly have a lot on your plate right now. I know it can be really hard to just think of yourself when it all gets like this. It sounds to me like you’re the strong, supportive one in the family—are you? What did the doctor say when you told him that your husband was being physically abusive? Any helpful advice for you?
My thoughts and prayers are with you always. Get outside and soak up some sunshine

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Yes im the strong one ..but maybe im crumbling… My dr advised me to go to the police …i really cant go to the police.. Hes disabled…

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@kw1904861

Yes im the strong one ..but maybe im crumbling… My dr advised me to go to the police …i really cant go to the police.. Hes disabled…

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@kw1904861, your husband's disability is no excuse for abuse. You must be safe in order to take care of yourself as well as him. It sounds like you may be in need of outside help. Depending on your situation this may be help from the police, considering a home for your husband or something in between. If your doctor is aware of the particulars of your situation and advises to contact the police, then this may be a necessary step.

I strongly encourage you to contact the National Domestic Violence Hotline website http://www.thehotline.org/ On this website you will find a phone number to call 1-800-799-7233 or you can use the online chat and get help without saying a word. By calling the Hotline, you can work with professionals to find safety and solution that is right for you.
Please call them.

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@kw1904861

Yes im the strong one ..but maybe im crumbling… My dr advised me to go to the police …i really cant go to the police.. Hes disabled…

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@kw1904861 I urge you to follow @colleenyoung ‘s advice! The National Domestic Abuse Hotline has all the resources and knowledge to help you. Please call

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@becsbuddy

@kw1904861 I urge you to follow @colleenyoung ‘s advice! The National Domestic Abuse Hotline has all the resources and knowledge to help you. Please call

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Well i went to the police ..yhey went andgot him..found him on the floor..took him to the er for an evaluation..hes back home now..nothings being done..im goi g to be looking for a place to stay tomorrow ..im at work now…if he falls after i leave they cant say i didnt warn them thst he cant be alone….

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@kw1904861

Well i went to the police ..yhey went andgot him..found him on the floor..took him to the er for an evaluation..hes back home now..nothings being done..im goi g to be looking for a place to stay tomorrow ..im at work now…if he falls after i leave they cant say i didnt warn them thst he cant be alone….

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@kw1904861, it was brave of you to call the police. I'm sorry to hear that not enough is being done for your husband. This must be very hard for you. Stay safe.

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