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

@IndianaScott

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!

Jump to this post

Thank You Scott. IO don't get here regularly, thus the delay in response. Thank you for your support. How could we exchange private emails ?????

@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.

Jump to this post

Thank you chocolate5lover. My prayer life and attempts at surrender to His sovereignty are getting a lot of practice. Please stay in touch. Not sure how to respond here yet !

@debbraw

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!

Jump to this post

debraw, thank you. Being isolated is a constant. If I do get out it is always to run for xyz, groceries, CVS, … no leisure activities until just recently. My wife & I get out 2 Saturdays a month as our friend comes as sitter, companion.

@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

Hold on to it !!!!!

@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

Jump to this post

Thank You, Thank You

@2011panc

@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.

Jump to this post

Thank You, Thank, You

@kateia

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.

Jump to this post

Here, for me, there is an " I " in team

@No Love Involved Caregiver There are really no words of comfort for this cruel fate. It sounds like something that can only be rewarded in the next world. Depending on your state, there are government services (e.g., adult day care). Is there some church or religious organization where you might find help or at least consultation? Without some relief lies madness!

@jshdma

@No Love Involved Caregiver There are really no words of comfort for this cruel fate. It sounds like something that can only be rewarded in the next world. Depending on your state, there are government services (e.g., adult day care). Is there some church or religious organization where you might find help or at least consultation? Without some relief lies madness!

Jump to this post

TY. He's not eligible for Adult Day Care as he is not independent with toileting. No church affiliation at this time.Finding peace at times spiritually when I allow myself this. Ebb and Flow . . . . . .

@godsgiver

TY. He's not eligible for Adult Day Care as he is not independent with toileting. No church affiliation at this time.Finding peace at times spiritually when I allow myself this. Ebb and Flow . . . . . .

Jump to this post

It's been awhile since I've responded here and was wondering how you are doing? Care-giving is such a difficult task and taking care of yourself can be a tough job. Have you found time each day/week just for yourself, and your family? Do you have respite care available to you? Our local hospital has a list of trained persons willing to sit for a few hours at a time. Some even over night. Of course, they charge per hour but it would probably be less than Adult Day Care fees. Check with your local hospital. Let me know how you are doing.

kateia, thank you for checking in.

I am hanging in there.with things as they are. The more I surrender, the better off I do !!!!!

RE: self-care, I have a few hobbies, wood, green thumb, computer, some football. However, there are days I just don't have the interest, desire, or energy to do much of anything. As a psychotherapist by trade, yes, I see the depression in this this. Have a friend that comes in over Saturday night twice a month, when my wife, RN, is off. This gives us at least Saturday days s to get away. In Hospice, so respite is a service available through them. Have not exercised this option yet. No other respite option.

Never thought about checking hospitals for companions, thanks. Can't see the forest for the trees sometimes.

Actually, this may be the most developed response since I made my entrance here. That's a good sign I suspect.

Go Saints !

@godsgiver

kateia, thank you for checking in.

I am hanging in there.with things as they are. The more I surrender, the better off I do !!!!!

RE: self-care, I have a few hobbies, wood, green thumb, computer, some football. However, there are days I just don't have the interest, desire, or energy to do much of anything. As a psychotherapist by trade, yes, I see the depression in this this. Have a friend that comes in over Saturday night twice a month, when my wife, RN, is off. This gives us at least Saturday days s to get away. In Hospice, so respite is a service available through them. Have not exercised this option yet. No other respite option.

Never thought about checking hospitals for companions, thanks. Can't see the forest for the trees sometimes.

Actually, this may be the most developed response since I made my entrance here. That's a good sign I suspect.

Go Saints !

Jump to this post

@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

@godsgiver

kateia, thank you for checking in.

I am hanging in there.with things as they are. The more I surrender, the better off I do !!!!!

RE: self-care, I have a few hobbies, wood, green thumb, computer, some football. However, there are days I just don't have the interest, desire, or energy to do much of anything. As a psychotherapist by trade, yes, I see the depression in this this. Have a friend that comes in over Saturday night twice a month, when my wife, RN, is off. This gives us at least Saturday days s to get away. In Hospice, so respite is a service available through them. Have not exercised this option yet. No other respite option.

Never thought about checking hospitals for companions, thanks. Can't see the forest for the trees sometimes.

Actually, this may be the most developed response since I made my entrance here. That's a good sign I suspect.

Go Saints !

Jump to this post

Just make sure you take some time for you and your family. Taking care of yourself is so very important. Especially when the holidays are creeping up on us. This site was my "venting" place when I was dealing with my mother's Alzheimer's disease. It's been so very helpful. Keeping everyone in my prayers.

@godsgiver

Thank You Scott. IO don't get here regularly, thus the delay in response. Thank you for your support. How could we exchange private emails ?????

Jump to this post

Hello @godsgiver If you click on my name (@IndianaScott) you can see an option to email me directly. I hope everything is going as well as can be hoped! Nice that you have some outside interests (good luck to the Saints — I'm a Notre Dame fan myself and just attended the Notre Dame vs. Northwestern game in Chicago). Good to hear you have some respite care options available to you!

. 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

Please login or register to post a reply.