No Love Involved Caregiver

Posted by godsgiver @godsgiver, Sep 11, 2018

Hi, this is Al. I am new to Mayo Discussions. 9/11/18

The challenges of caring for a family member when there is NO LOVE operating, just task mechanics, which are doable.

I am a CGr for my father-in-law who had a stroke June 2014. He moved in with us [his daughter] June 2015. I had no relationship with him except hello’s and handshakes on holidays. My wife of 21 years has revealed her stories of his diminished fathering, leaving her mother and marrying moms best friend. There he raised a second family, disconnected from her and my brother-in-law.

There was no relationship or love between us. Yet I became his F/T CGr in our home. I have professional experience with Alzheimer’s and dementia’s.

He does not self-report on his functioning, which he can, I believe. He has lived such a life of secrecy that I believe that even reporting on his functioning is not part of his human software. Just my view, bias.

It has been quite a drain, strain, with a lot of mental combat for me over 3 + years now. I know about Thought Stopping, using distraction, etc. as coping strategies. I get no help from his daughter or her brother. The daughter from the second marriage, and hubby, have driven here + / – 10 hours 2, maybe 3, time so that we could take a vacation. The chronic nature of the day to day routine, without any encouragement and/or support sucks. Yes I have episodic bouts with anger.

Wha Wha Wha yeah yeah yeah ……

I could use a buddy or 12. Thanks for taking the time to read this. Believing I will get some feedback.
al

I am so sorry for your situation. I’m glad that, as a male, you shared your story. I have certainly heard the same story from dutiful daughters who were mistreated as children. It’s good to get the male perspective, so thank you. I don’t have any tips to add, but if this happened to me I would consult an attorney who is skilled in this area. Or my pastor.

@godsgiver …first off, no words BIG enough to express the HUGE task you've taken on. Some of us are called to be servers. I often find myself doing and serving…why…because it's in my nature. That said, we're only human. We get tired, burnt out, feel unappreciated, and all too often, taken advantage of. I realize your in a situation that may not allow you to get away much, but what I find helps tremendously, is a few hours out doing what I like. I'm not a caregiver at home like you, but often the one who serves the family, or friends, for whatever the occasion, good or bad. When I tire doing good, i always pray God give me strength to do whatever He calls me to do, and to do it cheerfully, not grudgingly. Often, I need to take a step back, create some distance, or just play it cool for awhile. People usually get the hint. Perhaps during those times you could let those know around you (maybe wifey) your taking time out…a lunch with a buddy, fishing or whatever you like…I love my wine, LOL. Honestly, a few hours out, does wonders, so refreshing. Meanwhile, take it by faith, God sees, and you will be rewarded. Try praying to Him, if you haven't…and keep it up! I feel for you….Linda

@jshdma

You are one who thinks beyond the immediate moment, probably we should all try to go in that direction. The other side of it is that there have to be limits. For example, does mental illness excuse a person from being an abuser? And should his relatives just accept abuse?

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Hi @jshdma You bring up a challenging topic, at least for me. Luckily, I have not had to deal with anyone with serious mental illness in my family beyond the mental illness exhibited by my wife during her years (before) and during her brain cancer. When she was abusive it was hard, but we would tell ourselves it was 'the illness' not her. But that was a physical ailment, not simply a mental one. My father was abusive due to his alcoholism, also a disease. I never accepted his abuse, but I did get to the point, later in life, of being able to forgive him for it. I did many things with both my father and my wife to not simply 'accept' the abuse when it came. I'd leave the room with my wife at times and for quite a time I removed myself and my whole family from any contact with my father until he went for treatment (multiple times). With my father, I equated accepting his abuse to enabling, so I wouldn't do that once I was an adult. I was nto able to do that when I was a kid in the family unit I became a classic 'invisible child', while my two sisters each took on the role of 'wild child' and 'perfect child'. So the issue of 'accepting' abuse can vary I think, but I also don't think anyone should just accept abuse. We each must protect ourselves in whatever way we might be able to at the time and in the circumstances. Tough, tough issue, especially when the person is unwilling or unable to get help for their illness.

This may all not make much sense I fear!

Strengh, courage, and peace.

THANK YOU for your words of honesty! My spousal caregiver situation is different, but yet so similar. Sometimes I wonder if I’m imagining things. Communication is extremely limited and most things are left to me, unless they are important to him.
Learning to think of myself first is extremely foreign to me, however, I know I must do this, in order to be a better caregiver.
Thank you again for your sharing.
Linda E.

@lindasmith Hello! And my heart goes out to you. I am my spouses caregiver also. He does not communicate as he is unable to "find his words". Actually he has been diagnosed with Primary Progressive Aphasia, non stroke related. He has mild to moderate cognitive disfunction and the alzheimers will manifest itself eventually, per his neurologist. Please listen to your needs and think of yourself often. Get respite care, do something fun and don't feel guilty. I am in therapy to do that as well. Trying to get my head around all that has transpired and the spiral that we are in. Husband is miserable as he knows what is going on. It is very depressing for both of us. This is the first week in three months that I am able to think straight. I hope you understand how important it is for both you and your spouse that you take care of your needs as well. God Bless…….DianaJane

@lindasmith

THANK YOU for your words of honesty! My spousal caregiver situation is different, but yet so similar. Sometimes I wonder if I’m imagining things. Communication is extremely limited and most things are left to me, unless they are important to him.
Learning to think of myself first is extremely foreign to me, however, I know I must do this, in order to be a better caregiver.
Thank you again for your sharing.
Linda E.

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Hello @lindasmith I am Scott and it is nice to e-meet you here on Mayo Connect. I am glad you found Mayo Connect and the Caregivers group here! I can sympathize with your comment of 'sometimes I wonder if I'm imagining things'. Caregiving is such an alien lifestyle that we are often thrust into with little or no warning and, at least in my situation, no training for it! All of a sudden communications decline as more and more decisions have to be made for our loved one we are in charge of!

You said your situation is different? If you care to share I'd be interested in learning how so.

Strength, courage, and peace!

@dianajane

@lindasmith Hello! And my heart goes out to you. I am my spouses caregiver also. He does not communicate as he is unable to "find his words". Actually he has been diagnosed with Primary Progressive Aphasia, non stroke related. He has mild to moderate cognitive disfunction and the alzheimers will manifest itself eventually, per his neurologist. Please listen to your needs and think of yourself often. Get respite care, do something fun and don't feel guilty. I am in therapy to do that as well. Trying to get my head around all that has transpired and the spiral that we are in. Husband is miserable as he knows what is going on. It is very depressing for both of us. This is the first week in three months that I am able to think straight. I hope you understand how important it is for both you and your spouse that you take care of your needs as well. God Bless…….DianaJane

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To anyone writing on this subject– Caregiving is a talent to some extent. Some do it naturally others do not. It's like music, art, or math– as a teacher it is clear to me that talents are different and cannot really be acquired or learned. You can be thrust into it, but you may never really adjust. As one who knows he is not, I fear it just like an exam that you must pass but will probably fail or get a very low grade.

@jshdma

To anyone writing on this subject– Caregiving is a talent to some extent. Some do it naturally others do not. It's like music, art, or math– as a teacher it is clear to me that talents are different and cannot really be acquired or learned. You can be thrust into it, but you may never really adjust. As one who knows he is not, I fear it just like an exam that you must pass but will probably fail or get a very low grade.

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Hello @jshdma You have an interesting point of view on this.

I know in my situation the thought of being a caregiver never really entered my mind until the very day I had to be one. Looking back I know there are things I could have done better, but on the other hand I learned that often in life we never truly know what we are capable of until we must act.

Just as with exams…sometimes we surprise ourselves and ace that one we feared the most!

Strength, courage, and peace.

@jshdma

To anyone writing on this subject– Caregiving is a talent to some extent. Some do it naturally others do not. It's like music, art, or math– as a teacher it is clear to me that talents are different and cannot really be acquired or learned. You can be thrust into it, but you may never really adjust. As one who knows he is not, I fear it just like an exam that you must pass but will probably fail or get a very low grade.

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I have not been put to the test; but I am following your care givers group very closely. I am 67 and my husband is 69. I have noticed some changes in him and I am fearing the future. What I read from you all, is very humbling and I am learning a lot. If cancer is not for sissies, caregiving sound not much different. I am a cancer survivor. My husband cared for me with so much love and patience, that I feel I need to get ready in case he would need me. You all are such big examples! Just keep the good work. As I said before, there is a lot of silent people listening to you. We want to be there for you too. If you think you are doing this just for a loved one, you are not. You are doing it for us, and you are doing it for yourselves. We notice and we thank you.
Loli

@loli

I have not been put to the test; but I am following your care givers group very closely. I am 67 and my husband is 69. I have noticed some changes in him and I am fearing the future. What I read from you all, is very humbling and I am learning a lot. If cancer is not for sissies, caregiving sound not much different. I am a cancer survivor. My husband cared for me with so much love and patience, that I feel I need to get ready in case he would need me. You all are such big examples! Just keep the good work. As I said before, there is a lot of silent people listening to you. We want to be there for you too. If you think you are doing this just for a loved one, you are not. You are doing it for us, and you are doing it for yourselves. We notice and we thank you.
Loli

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Thank you for the lovely thoughts and words, @loli Lovely sentiment!

@IndianaScott

Hello @jshdma You have an interesting point of view on this.

I know in my situation the thought of being a caregiver never really entered my mind until the very day I had to be one. Looking back I know there are things I could have done better, but on the other hand I learned that often in life we never truly know what we are capable of until we must act.

Just as with exams…sometimes we surprise ourselves and ace that one we feared the most!

Strength, courage, and peace.

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Yes, even in exams you may do better than expected. This probably assumes that you have studied for the exam. Preparation for caregiving, however, is unlikely, unless you have already done it. I still think that caregiving is a talent or at least that not everyone is suited for it. Just as we choose a profession that we have some ability or inclination for. I would not want to be a nurse, for example.

I agree with you, @jshdma I know in my wfe's family a couple of her siblings have said they would leave thier spouse rather than do the caregiving duties I did. Not for everyone for sure!

@chocolate5lover

It seems to happen a whole lot more than I thought it would–not getting support from family members. I remember sitting endless days and nights next to my mom's bed in the nursing home. She finally went home to be with the Lord, 7 years ago. Those days seemed endless, but they sure taught me how to pray like never before! I am praying for you, "godsgiver." One thing that really surprised me is that the people you would expect to help you during this time, give you no support. Don't give up, "godsgiver" hang in there–the people on this site will support you, with prayers and encouragement.

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Thank you for your support. I am just getting back here. Absence of my input does not = disinterest on my part. It is interesting to see screen name in print, GodsGiver !

@dazlin

@godsgiver …first off, no words BIG enough to express the HUGE task you've taken on. Some of us are called to be servers. I often find myself doing and serving…why…because it's in my nature. That said, we're only human. We get tired, burnt out, feel unappreciated, and all too often, taken advantage of. I realize your in a situation that may not allow you to get away much, but what I find helps tremendously, is a few hours out doing what I like. I'm not a caregiver at home like you, but often the one who serves the family, or friends, for whatever the occasion, good or bad. When I tire doing good, i always pray God give me strength to do whatever He calls me to do, and to do it cheerfully, not grudgingly. Often, I need to take a step back, create some distance, or just play it cool for awhile. People usually get the hint. Perhaps during those times you could let those know around you (maybe wifey) your taking time out…a lunch with a buddy, fishing or whatever you like…I love my wine, LOL. Honestly, a few hours out, does wonders, so refreshing. Meanwhile, take it by faith, God sees, and you will be rewarded. Try praying to Him, if you haven't…and keep it up! I feel for you….Linda

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WOW dazlin you hit many familiar and relevant points, thank you. I don't get out much. I do putter in the yard and wood shed for distraction, respite, meaningful activity, etc. Thank You

@mpeters

I am so sorry for your situation. I’m glad that, as a male, you shared your story. I have certainly heard the same story from dutiful daughters who were mistreated as children. It’s good to get the male perspective, so thank you. I don’t have any tips to add, but if this happened to me I would consult an attorney who is skilled in this area. Or my pastor.

Jump to this post

Thank you. I never thought it, gender, at all. Thank you. Hope I am here to stay for a while.

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