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godsgiver
@godsgiver

Posts: 25
Joined: Sep 11, 2018

No Love Involved Caregiver

Posted by @godsgiver, Tue, Sep 11 3:08pm

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

REPLY

Hello @godsgiver Al! While I am sorry to learn of your father-in-law's health issues, I am glad to e-meet you here and pleased you found Connect! The isolation and challenges of caregiving are what led me to Connect some years ago. It was a godsend to me! Great to have you here!

My wife had brain cancer and I was her primary caregiver for all of her 14+ year war. Personally I can relate to your feelings you describe — the bouts of anger too. I kept an old feather pillow in the living room and used it for punching many nights when the stress, repetition, etc. of the day-to-day got overwhelming! I was lucky I loved my wife so that made it easier and I cannot imagine what it must be like to add the extra burden of having no relationship with your patient on top of the grind of caregiving — and it is definitely a grind!

I was glad to read you have the chance to get away every so often! I did not leave our home for the last seven years of my wife's illness and had no support structure from family, friends, or neighbors/church, etc. My wife was actually asked to leave our church due to her inability to stay for the full hour of Sunday service, which she was told 'you could if you just wanted to', but she couldn't. But I digress to my own wha, wha wha!

You will find many caregivers here, Al, who are willing to share, listen, and offer whatever support they might be able to!

I look forward to hearing more from you! BTW, I'm 66 and now widowed.

Strength, courage, and peace!

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.

Hey @godsgiver Al, I am so sad for the very difficult situation you are handling. My husband is struggling with Mild Cognitive Impairment and one of my biggest struggles is dealing with the feelings of isolation – and making time for me. So I kinda understand how you feel there. But the point you raise about being in that role w/o LOVE, is profound. Like @IndianaScott, I definitely struggle with anger – more times than I wish – but the fundamental underlying love keeps me on track along with the knowledge that my husband would do it for me in a heartbeat if our situations were reversed. I'm glad you are here on Connect. There are so many caring, thoughtful people here that you will definitely have built-in buddies! Do you have any "in person" support people for you? Or groups – like church? I find that kind of connection just invaluable and I'm hoping you have some of that in your life. Take care and stay here on Connect!

Caregiving is love in action. When my husband agreed to life-threatening surgery (13 hours, 4 surgeons) he did it because he loved me and our grandkids. Love keeps me going.

@godsgiver You are a very special person with a BIG HEART. It is hard enough having to deal with taking care of someone you love deeply. I cannot imagine having to be the caretaker for someone you have zero love for. I don't know if I could do it myself?
God Bless you… When it gets tough pop on here, and vent . We will all understand.
Jackie

@godsgiver Thank you for posting. My guess is there are many here in the same boat. Taking care of the caregiver is so important! Is there any way to access an in-person support group, even for an hour a week? Is there any sort of adult day care center near you, that would give you respite, and save your sanity? Are there any connections from your experience in Alzheimer's and dementia work, who can spell you? It seems often, people have no true understanding of the toll caregiving is. We are here for you!
Ginger

@godsgiver I just read your post. You are in quite a difficult situation that is not emotionally healthy for you and maybe not for your wife or marriage either. Just because you have experience in the disorder does not mean that you are the best caretaker for this man, particularly since you have been told so many unflattering things about him. It is one thing to care for such a person on one shift at work, it is quite another to provide 24 hour care with no respite. God Bless you for what you have already done. I strongly suggest you look into some outside resources for your situation. There may be a day service, respite care form Easter Seals (or another group), or even look at moving him into a care home. I would do this not to be vindictive or punish him, but to do what is best for everybody. You sound close to burnout, which would be bad for everyone. My prayers remain with you. Blessings.

@harriethodgson1

Caregiving is love in action. When my husband agreed to life-threatening surgery (13 hours, 4 surgeons) he did it because he loved me and our grandkids. Love keeps me going.

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Thanks for the like Teresa.

Liked by coquifoife

I am amazed that you have taken care of your FIL for three years!! What strength you have combating all the issues. I am no professional by any means. From what I read I feel that it is maybe time that you step back and let someone else do the care. Especially if his own family gives you no support at all. Do you have a care team set up that meets to discuss issues? It's not that you can't do the work — you've shown you can for the past 3 years –but is it worth risking your health and well-being because you are not supported at all? There are many wonderful suggestions in above posts that I would seriously take into consideration. I spent close to 5 years trying to convince my brother and sister that my mom was having dementia problems. They just wouldn't listen. Hardly ever visited – only for short times. They did help out during her last years but they missed so much of her life prior to that. She has been gone for 1 1/2 years now but I still have resentment towards them for not even wanting to meet to discuss issues with them. Plus all the work that my husband did as well. No thank you's. Nothing. If there is no "family" support system work with other professionals to set something up so that you can have time for yourself and your family.

@godsgiver Bless your heart. Praying for you to come to grips with your caretaking.

@harriethodgson1

Caregiving is love in action. When my husband agreed to life-threatening surgery (13 hours, 4 surgeons) he did it because he loved me and our grandkids. Love keeps me going.

Jump to this post

Thanks for the like Teresa

Liked by godsgiver

This is indeed a discouraging situation. I have a close relative with mental illness–a 40-year history of family destruction. He is in denial, is completely uncooperative, and very demanding. Treats his caregivers with contempt; we get the four-letter words, yelling and screaming, but no end of the expectation of complete financial support. I would like to say "I am done," which is the truth. But other relatives believe in being martyrs. Sorry to be so down, but after 40 years, I have found that there are no answers, only endurance.

@jshdma

This is indeed a discouraging situation. I have a close relative with mental illness–a 40-year history of family destruction. He is in denial, is completely uncooperative, and very demanding. Treats his caregivers with contempt; we get the four-letter words, yelling and screaming, but no end of the expectation of complete financial support. I would like to say "I am done," which is the truth. But other relatives believe in being martyrs. Sorry to be so down, but after 40 years, I have found that there are no answers, only endurance.

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Hello @jshdma I agree with you. Mental illness is such a difficult situation for caregivers to deal with, even when there is love involved. I know in my wife's case those times when she was extra demanding were some of the toughest and she appreciated what I was doing, or at least trying to do!

I wish you and your family members strength, continued courage, and peace!

Liked by gingerw, godsgiver

Al,
What you are doing is an act of love; maybe not for the person, but for humanity. I have read your mail three times. You have made me think, deeply. I am thankful for people like you. Keep up the good work. You already have a dozen friends; but many more are just reading, and thinking.

@loli

Al,
What you are doing is an act of love; maybe not for the person, but for humanity. I have read your mail three times. You have made me think, deeply. I am thankful for people like you. Keep up the good work. You already have a dozen friends; but many more are just reading, and thinking.

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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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