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

You have a caring heart, few would do as you are doing. The best of those we care for can have trying moments for us.

@gingerw

@godsgiver Although I thought about this awhile ago, I failed to mention it as a help aid. There are certain orders of Catholic nuns who are nurses. Some offer respite work to people in the cities near or where they are. You Don't need to be of their faith, you need to be in need of support. Two I can think of are Sisters Servants of Mary, and Sisters of St. Joseph of Carondolet [sp?]. Check also with you local Health and Human Services Dept. Hope this gives you some peace. Being a caregiver is so stressful.
Ginger

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gingerw,

Thank you for checking in and your suggestions.

@gingerw

@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

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Having looked into this, I have not found a support group to access. I facilitate an Alzheimer's Caregivers Support Group and the ladies have been supportive of my evolved role with them.

@dianajane

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

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Please unpack for me what you mean by "….come to grips …"

@pattitoo

You have a caring heart, few would do as you are doing. The best of those we care for can have trying moments for us.

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Thank you for your support, al

@celestesmith74

. I am sorry that you have this. My mil when her husband enabled her and she didn't have a lif e with him and when he was sick at 44 (my age now) I hjad a baby and a three year old,now 23 and 20 grownup daughters.My mil has another son no kids a house w three bedrooms and a twenty min drive. He doesn't call her at all,when he had nobody,he was up our butts all the time clinging on,saw him and his wife at my daughter (she graduated college and her baby shower,my wonderful grandson,I have see three times,he is six months,my daughter won't bring him here his mom not into showers,smells like third hand smoke,she is always in our business,we would have to lie about going there clingy and needy,when his father died leaving her a quarter of a million including house she sold,she didn't work for seven years and lived off of uis for nine months to pay her mortgage was laying down all day,we gave up one of our daughter's bedrooms,she took over our living room,then we had to say landlord wanted to charge rent,the whole time she was staying off of us was to pay a timeshare she lost,she now is 62 had a stroke at 52 went back to chain smoking she was obese and short now diabetes 2 fat and round at the top skinny legs,does nothing won't wlk,my grandfather was 87 and would be in worse shape than her and would walk to the store,if something is on her bank settlement we pay rent I had to go into a hospital nervous breakdown my husband was like her. I told him to shit or get off the pot so he finally is working ft at a job he started nine months ago. His mom goes through our things,knocks on the door at 3 m when we have to lock and hide everything,the woman has a loud naally voice before the stroke selfish..I think we have done all we can and we are saving and leaving in spring and everyone,the ones who knew me saw me decompose but my head space was out of the zone. I was diagnosed with complex ptsd, but it took about five years to research,heal and cope in a whole new way. My work,cognitive skills were temporarily for a few years,impaired,have made a full recovery, Living here this time was supposed to be a year and a half my mom died at 59 young full time worker beautiful deserved better treatment than mil frumpy loks 80 and acts four we are finally getting a car next week after three years. She called my friend at te at night I was spending the night asked us to go get her cigarettes no..the next night there was a 4 car accident knocked the pole off of walgreens,well she sid it was 50 dollars to pick up her mes and I called my friend had a bit to drink and I had (during my breakdown)lost license but court dismissed it the cars were illegally parked and this happened when I lost sixty pounds and no eating sleeping. I am not taking a chance to drive the car. It began with the stressors in life. Transition..this was and is a normal stress for everyone,this was a lot of unwanted,uncomfortable and sadly,false pretenses of moving here to help each family to move up but it all completely backfired one by one,another transition was shawn losing his career and out of work for so long due to the economy and just in a rut,so buying a house in our name had to be put on a longer hold and the realtor passed away suddenly,The house with my carpenter father,visiting from Canada did 2000 dollars worth of work on this home and also when I was in the hospital,My mom's money went into this "chicken coop" house.It went back on the market in 2014 and almost sold,failed inspection..Needs a new roof and something else..grrrr..so i used the money I had,I was declared by four drs. to rest,stay out of work lay low for a year,impossible,my husband wasn't working and then told me he had Amazon and I thought that I would get my health back by moving so I paid nine months worth of an apartment it I am writing a novel about this decade,seriously am on page 36 and it is something I always wanted to do at this age,to write an autobiography,I loved to write since I began to write. I wrote my first little book when I was 7,wrote a column in a teen magazine and won a poetry contest for writing in my grandmother's magazine 100 dollars ,when I was sixteen. She sent it in and all she did was put her date of birth as you had to be 18,i won and it was published,lol high stress and three jobs in a toxic environment prior to my Mom's death and the dog attack.The dog attack was basically the straw that broke the camel's back,the prelude began about a year and a half after we left Rhode Island,slowly but a lot on my plate that I was responsible for but the ones,events out of my of my control ,a lot more than usual bad luck kept ongoing,nonstop the ups and downs were extinct during that period,2010 it was identity theft a few times,money stolen,other things stolen,his mother was always a manipulator and sneaky,the stroke has just taken the worst parts of her and magnified those ten times worse than the initial annoyance. Sadly the good part of her you don't see very much,she gave up in 2000 and I literally had a taste of caregiver burnout from her,helping her and she wouldn't meet us a step of the way forget half way,then we just have to pick up the pieces of her husband totally spoiled her as in enabled her and she never became an independent person,she has a very unhealthy attachment to my hubby,they call it surrogate spouse,enmeshment,busy body,,enabler,not even close of the parenting I had..It was just like sense of entitlement thinking, a ton of consequences that broke my nervous system in tatters(to say the least)My memory is in tact along with my cognition and I enrolled in college and am taking the rest of my courses to obtain my degree within six months,an associates in Early Childhood. I will then take the test for my CDA and already is opening doors for me. I am in the process of interviewing with Bright Horizons to work with infants,and is on the top 100 Forbes list. Has impeccable reviews with amazing benefits and will eventually lead to a full time position,401k tuition assistance to obtain my bachelor's etc. I spent 8 years paying disability back 60k and could gross 1100 a month as a hairdresser,all was on me got under the table jobs with it also to survive prior to losing my mom and the dog as a nanny at my job six month's after losing my mom in a freak accident their ill dog bit my face twice,two chomps 235 stitches,that is when I had a nervous breakdown after another and then lost my apartment,the doctors in one of my hospital visit said rest take a year off,I couldn't function and here I am back with this one,like a prisoner,I am healthier now,He didn't work I had paid nine months rent bought furniture all of that to get away,the nervous breakdown had to run its course

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Hi @celestesmith74. Welcome to Connect. It certainly sounds as if you have a lot on your plate. There are many caring supportive people here. Are you acting as a caregiver currently? Are you looking for help/conversation in a particular area? I wasn't quite sure about the specifics.

Al, just re-read your post, you have been doing this for 3 1/2 years…could FIL get "respite care" occasionally at a care center? YOU need a break Al from your routine. When my husband of 50 years was on hospice, I was told that his hospice group would pay for time ever so often if I needed it….it was offered, not needed or wanted ever, he was easy to care for. Could hospice be an option for you? Imagine your world is getting smaller isn't it.

@celestesmith74

. I am sorry that you have this. My mil when her husband enabled her and she didn't have a lif e with him and when he was sick at 44 (my age now) I hjad a baby and a three year old,now 23 and 20 grownup daughters.My mil has another son no kids a house w three bedrooms and a twenty min drive. He doesn't call her at all,when he had nobody,he was up our butts all the time clinging on,saw him and his wife at my daughter (she graduated college and her baby shower,my wonderful grandson,I have see three times,he is six months,my daughter won't bring him here his mom not into showers,smells like third hand smoke,she is always in our business,we would have to lie about going there clingy and needy,when his father died leaving her a quarter of a million including house she sold,she didn't work for seven years and lived off of uis for nine months to pay her mortgage was laying down all day,we gave up one of our daughter's bedrooms,she took over our living room,then we had to say landlord wanted to charge rent,the whole time she was staying off of us was to pay a timeshare she lost,she now is 62 had a stroke at 52 went back to chain smoking she was obese and short now diabetes 2 fat and round at the top skinny legs,does nothing won't wlk,my grandfather was 87 and would be in worse shape than her and would walk to the store,if something is on her bank settlement we pay rent I had to go into a hospital nervous breakdown my husband was like her. I told him to shit or get off the pot so he finally is working ft at a job he started nine months ago. His mom goes through our things,knocks on the door at 3 m when we have to lock and hide everything,the woman has a loud naally voice before the stroke selfish..I think we have done all we can and we are saving and leaving in spring and everyone,the ones who knew me saw me decompose but my head space was out of the zone. I was diagnosed with complex ptsd, but it took about five years to research,heal and cope in a whole new way. My work,cognitive skills were temporarily for a few years,impaired,have made a full recovery, Living here this time was supposed to be a year and a half my mom died at 59 young full time worker beautiful deserved better treatment than mil frumpy loks 80 and acts four we are finally getting a car next week after three years. She called my friend at te at night I was spending the night asked us to go get her cigarettes no..the next night there was a 4 car accident knocked the pole off of walgreens,well she sid it was 50 dollars to pick up her mes and I called my friend had a bit to drink and I had (during my breakdown)lost license but court dismissed it the cars were illegally parked and this happened when I lost sixty pounds and no eating sleeping. I am not taking a chance to drive the car. It began with the stressors in life. Transition..this was and is a normal stress for everyone,this was a lot of unwanted,uncomfortable and sadly,false pretenses of moving here to help each family to move up but it all completely backfired one by one,another transition was shawn losing his career and out of work for so long due to the economy and just in a rut,so buying a house in our name had to be put on a longer hold and the realtor passed away suddenly,The house with my carpenter father,visiting from Canada did 2000 dollars worth of work on this home and also when I was in the hospital,My mom's money went into this "chicken coop" house.It went back on the market in 2014 and almost sold,failed inspection..Needs a new roof and something else..grrrr..so i used the money I had,I was declared by four drs. to rest,stay out of work lay low for a year,impossible,my husband wasn't working and then told me he had Amazon and I thought that I would get my health back by moving so I paid nine months worth of an apartment it I am writing a novel about this decade,seriously am on page 36 and it is something I always wanted to do at this age,to write an autobiography,I loved to write since I began to write. I wrote my first little book when I was 7,wrote a column in a teen magazine and won a poetry contest for writing in my grandmother's magazine 100 dollars ,when I was sixteen. She sent it in and all she did was put her date of birth as you had to be 18,i won and it was published,lol high stress and three jobs in a toxic environment prior to my Mom's death and the dog attack.The dog attack was basically the straw that broke the camel's back,the prelude began about a year and a half after we left Rhode Island,slowly but a lot on my plate that I was responsible for but the ones,events out of my of my control ,a lot more than usual bad luck kept ongoing,nonstop the ups and downs were extinct during that period,2010 it was identity theft a few times,money stolen,other things stolen,his mother was always a manipulator and sneaky,the stroke has just taken the worst parts of her and magnified those ten times worse than the initial annoyance. Sadly the good part of her you don't see very much,she gave up in 2000 and I literally had a taste of caregiver burnout from her,helping her and she wouldn't meet us a step of the way forget half way,then we just have to pick up the pieces of her husband totally spoiled her as in enabled her and she never became an independent person,she has a very unhealthy attachment to my hubby,they call it surrogate spouse,enmeshment,busy body,,enabler,not even close of the parenting I had..It was just like sense of entitlement thinking, a ton of consequences that broke my nervous system in tatters(to say the least)My memory is in tact along with my cognition and I enrolled in college and am taking the rest of my courses to obtain my degree within six months,an associates in Early Childhood. I will then take the test for my CDA and already is opening doors for me. I am in the process of interviewing with Bright Horizons to work with infants,and is on the top 100 Forbes list. Has impeccable reviews with amazing benefits and will eventually lead to a full time position,401k tuition assistance to obtain my bachelor's etc. I spent 8 years paying disability back 60k and could gross 1100 a month as a hairdresser,all was on me got under the table jobs with it also to survive prior to losing my mom and the dog as a nanny at my job six month's after losing my mom in a freak accident their ill dog bit my face twice,two chomps 235 stitches,that is when I had a nervous breakdown after another and then lost my apartment,the doctors in one of my hospital visit said rest take a year off,I couldn't function and here I am back with this one,like a prisoner,I am healthier now,He didn't work I had paid nine months rent bought furniture all of that to get away,the nervous breakdown had to run its course

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Hello @celestesmith74 I'm Scott and it's nice to e-meet you here!

I am sorry to read of all your travails, but welcome you to Mayo Connect! It is a great community loaded with folks who love to listen and often offer hints, tips, and always broad shoulders! I am glad you are here!

I was my wife's caregiver for 14 years while she battled brain cancer and can fully understand how you describe life. When we are caring for others it is truly a house of cards — when the tiniest thing changes the whole house comes down — and you have had some very major changes and challenges. Congrats for keeping on!

Keep in touch and let us know how your studies go! It sounds interesting and promising!

I love to write and find it quite therapeutic! Are you able to keep writing too?

Liked by godsgiver

@pattitoo

Al, just re-read your post, you have been doing this for 3 1/2 years…could FIL get "respite care" occasionally at a care center? YOU need a break Al from your routine. When my husband of 50 years was on hospice, I was told that his hospice group would pay for time ever so often if I needed it….it was offered, not needed or wanted ever, he was easy to care for. Could hospice be an option for you? Imagine your world is getting smaller isn't it.

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Yes, my world barely extends beyond the yard. No vols from hospice available at this time. W/O toileting independence he is then ineligible for adult day care. Thanks

Hi @godsgiver I can relate to your comment a ton. For the last 6 years of caregiving my only trips outside of our home was once a month to the barbershop and grocery. The isolation can be crushing for sure! There was also no volunteer care (and until home hospice) no paid help who would work with her due to her psychological/emotional challenges. It can be a tough go for sure!

I wish you all the best as you continue this journey.

I am glad you found Connect and I hope it is helpful — it was a wonderful support for me while I was actively caregiving!

Stength, courage, and peace!

@godsgiver …Just a thought. I mean perhaps your patient is directing unfavorably to you since you are familiar. My husb is so different with nurses and others. I am trying to "wrap my head around our situation" accepting that our close interaction on a daily basis is the reason. I'm trying not to take it ""personally "".

@dianajane

@godsgiver …Just a thought. I mean perhaps your patient is directing unfavorably to you since you are familiar. My husb is so different with nurses and others. I am trying to "wrap my head around our situation" accepting that our close interaction on a daily basis is the reason. I'm trying not to take it ""personally "".

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I agree with your view, @dianajane My wife's neuro-oncologist frequently reminded me patients often lash out at those they are the most safe and secure with, which often means those they are closest to in their lives.

Doesn't make it any easier, but at least made it more understandable for me.

Strength, courage, and peace!

@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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12/4/18 re: 11/29/18 It has been a very tough week ! Temporary, situational, meds stalled his BM's.

Once I remembered the meds' impact here, I informed him of it and presented corrective action at the same time. Before I knew it, his instant on rebellion, dismissal, of my input flourished into yelling. This so severely hit my button … and they're off into an argument on this. It evolved my stance to express frustrations, anger, regarding his position, behavior, of an absence of any sort of personal respect demonstrated toward me.

I asked my wife, his daughter, to join us. She leaned on the door frame and I don’t believe she spoke at all and very, very, little on this since. Note, this is normal for her as if the acorn doesn’t fall from the tree.

I expressed to him my self-loathing, guilt, over losing my cool, venting, that day. I added that it will take me a week to get over this. I had, have, unwanted and ongoing, active, intrusive, mental replays, videos, and/or creations of new scenes. This still operates for me. A week may not be enough, … Thy will be done ! This 30 – 60:00 minutes has such an ongoing hangover.

Prayer has helped me to return to the provision of care from a stance of dignity and respect toward him. This comes from a place greater than me. The words that come out of my mouth, my approach to care giving surprises me, catches me off guard, in a positive manner. This is surprising and welcomed by me. However, the ongoing mental attacks, battles, pop up regularly. I use prayer, Thought Stopping, Cognitive Restructuring, and distraction to derail these mental battles, with success. I wish I wouldn’t have to call upon these strategies, multiple times a day, to move through the battles, working to maximize creating a good day for me. I do this daily, wash, rinse, repeat ………

PS I have been told my writing is Faulknarian, Faulkner. Apparently he was gifted with run on sentences.

@godsgiver

12/4/18 re: 11/29/18 It has been a very tough week ! Temporary, situational, meds stalled his BM's.

Once I remembered the meds' impact here, I informed him of it and presented corrective action at the same time. Before I knew it, his instant on rebellion, dismissal, of my input flourished into yelling. This so severely hit my button … and they're off into an argument on this. It evolved my stance to express frustrations, anger, regarding his position, behavior, of an absence of any sort of personal respect demonstrated toward me.

I asked my wife, his daughter, to join us. She leaned on the door frame and I don’t believe she spoke at all and very, very, little on this since. Note, this is normal for her as if the acorn doesn’t fall from the tree.

I expressed to him my self-loathing, guilt, over losing my cool, venting, that day. I added that it will take me a week to get over this. I had, have, unwanted and ongoing, active, intrusive, mental replays, videos, and/or creations of new scenes. This still operates for me. A week may not be enough, … Thy will be done ! This 30 – 60:00 minutes has such an ongoing hangover.

Prayer has helped me to return to the provision of care from a stance of dignity and respect toward him. This comes from a place greater than me. The words that come out of my mouth, my approach to care giving surprises me, catches me off guard, in a positive manner. This is surprising and welcomed by me. However, the ongoing mental attacks, battles, pop up regularly. I use prayer, Thought Stopping, Cognitive Restructuring, and distraction to derail these mental battles, with success. I wish I wouldn’t have to call upon these strategies, multiple times a day, to move through the battles, working to maximize creating a good day for me. I do this daily, wash, rinse, repeat ………

PS I have been told my writing is Faulknarian, Faulkner. Apparently he was gifted with run on sentences.

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@godsgiver If your father-in-law had been clear enough in his own mind to seek words to tell you that he understands your frustration and offered you consolation in that respect, perhaps you would not have had the issues that you have related. My sympathy to you for experiencing all this, and my gratitude for you sharing here with your cyber friends. We are here for you!
Ginger

@godsgiver

12/4/18 re: 11/29/18 It has been a very tough week ! Temporary, situational, meds stalled his BM's.

Once I remembered the meds' impact here, I informed him of it and presented corrective action at the same time. Before I knew it, his instant on rebellion, dismissal, of my input flourished into yelling. This so severely hit my button … and they're off into an argument on this. It evolved my stance to express frustrations, anger, regarding his position, behavior, of an absence of any sort of personal respect demonstrated toward me.

I asked my wife, his daughter, to join us. She leaned on the door frame and I don’t believe she spoke at all and very, very, little on this since. Note, this is normal for her as if the acorn doesn’t fall from the tree.

I expressed to him my self-loathing, guilt, over losing my cool, venting, that day. I added that it will take me a week to get over this. I had, have, unwanted and ongoing, active, intrusive, mental replays, videos, and/or creations of new scenes. This still operates for me. A week may not be enough, … Thy will be done ! This 30 – 60:00 minutes has such an ongoing hangover.

Prayer has helped me to return to the provision of care from a stance of dignity and respect toward him. This comes from a place greater than me. The words that come out of my mouth, my approach to care giving surprises me, catches me off guard, in a positive manner. This is surprising and welcomed by me. However, the ongoing mental attacks, battles, pop up regularly. I use prayer, Thought Stopping, Cognitive Restructuring, and distraction to derail these mental battles, with success. I wish I wouldn’t have to call upon these strategies, multiple times a day, to move through the battles, working to maximize creating a good day for me. I do this daily, wash, rinse, repeat ………

PS I have been told my writing is Faulknarian, Faulkner. Apparently he was gifted with run on sentences.

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@godsgiver Tough situation — and all I can add, which is not much, is you are not alone. I believe every caregiver I have ever spoken to relates times when their patient lashes out at them and how impactful those times are.

It is a tough assignment and I know there were times caring for my wife that I resorted to taking out my frustrations on an old feather pillow I kept in the living room for just such occasions. Never changed the feelings, but did relieve some of my tension 🙂

I wish you continued strength, courage, and peace

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