When my father passed away suddenly I couldn't understand why my husband didn't offer consolation or any form of support for me. That wasn't like him. I felt abandoned with his lack of empathy. I now know that he was in the very early stages of Alzheimers/dementia. Nothing prepares you for the changes that take place.

Outside of Alz there are times where showing 'Love' in caregiving (without any 'diseases') that 'Love' with all the right intentions can distroy (make sick) the one that is trying to be the caregiver. I have shockingly found that the slow 'progression' of my loving, good intentions have back-fired because my mother is a controller and continues to try and run my life and my household, while she pits me against my brothers who never help and live and keep far away from her. It jeoparadized my life in many ways... All this was in the name of 'Love' (which I have been 'accused of being too nice by my mother... who is totally dependent on me... and, still is as feisty and non-supportive as ever... without having dementia)... just saying...

I am happy for those (especially spouses) that have the mental and physical strength to care for each other... if they find the means to do so...

Blessings to all...

You said it all Markus. Thank you. I love this maddening man with all my heart and, yes, sometimes it's very frustrating.

Thanks for your description of how it is with caring for your husband.
This has been an affirmation of my feelings exactly. I am fight hard
to stay strong and care for myself so that I, too, can fulfill this need in
his life. He was always there for me. All I can say is "stay strong" and
take God with you in the journey. He will see you through it.

This is a wonderfully inspiring article. Truly expressing the love connection that exists in this marriage. My husband of 42 years has dementia and my caregiver role has made me more conscious of our bond. Everything I do for my husband is done with love because I know "if the shoe was on the other foot" he would do everything in his power to care for me. Even now , if to him I seem to be in pain ,he wants to stroke my hand or head or bringing me some irrelevant object to give comfort. We didn't get to live the life we thought of but we have been blessed in other ways .Its our new normal and I too am committed to care for him as long as the Lord allows me.

Thanks for sharing your experiences so frankly, Marlis.

I have seen this with my Mom after her recent hospitalization. She spent the first day of ER/Hospital Admit unconscious and not able to be roused. I spent an awful day wondering if she would wake up even. Since then she's asked regularly about that day....finally coming to the realization (only to lose it again) that she was not just sleeping and she has no clue what tests and other treatment she received that day. Every time a new Medicare statement comes in I have to go over it again with her in total. It can be frustrating to repeat that horrible day over and over, but I know that she can't hold on to the information any longer. It breaks my heart to see her confusion as I explain it all. I get overwhelmed caregiving for her as she is a difficult person and more so now. I will never regret taking care of her....frustration and all.

Sorry, but I call Pollyanna and inexperience on this.

How long has Charlie had dementia? I know about caring for a person with dementia for 20 years. I’ve been dealing with that lack of empathy for 20 years. I’ve given up my persona wants and needs for 20 years following my wife’s TBI, and I still provide top-notch care. People praise me for my deep seated love. She’s been my patient longer than she was my wife, and after 20 years of dealing with an oppositional PWD, I can barely remember who it was that I fell in love with.

Next month we’ll begin our 37th year of marriage and her 21st year of living with her TBI. It’s not love. It’s integrity.

Lovely. Well said. And, yes, very help-full. It's such a hard task and giving and getting support from others who have been there or are there now is vital to one's sanity.

Also, I agree with Jazmine1. It's not resentment towards my mom, those days are over. I'm way beyond bitter, resentful or frustrated at mom, I'm destroy by the situation that I am still frustrated with. I'm crushed for myself and for her. My life and health are destroyed. It's time for God's comeback for me. I have to heal myself now that mom is in assisted living where she does not want to be nor needs to be. The evil siblings had the evil judge and courts stuff her in an old folks home on the grounds that I breached my fiduciary duties which were never identified or allegated in court, they just falsely accused it to steal my mother's estate, liquidate and carve up her money for themselves. When there was no evidence against me to prove, they turned on mother and declared her incapacitated. Beware the "justice" system. This is how they make their money, looking for little old ladies to rob. Judges and lawyers are by and large crooks by their very own vocations and by the very system they operate in and how it's set up to rob people. Justice is blind but it is not deaf to the clinking sound of silver and gold in people's pockets. It was not a house of justice for all nor for my mother; instead it was a house of commerce for lawless thieves. The lawless, crooked judge in Yuma Arizona and his appointed thieving lawyers and investigators made exorbitant unwarranted salaries they charged to my mother's estate. They stole my inheritance and the home I stood to inherit but as long as my mother is safe, I know I sacrificed everything, including my own job, own pension, healthcare, my own home which I lost to foreclosure and my entire worldly possessions to help another; I didn't lose it on drugs and alcohol and gambling, nor in attempting to steal from my mother as the liars tried to falsely accuse. But I did lose everything trying to protect, care for and keep my mother alive while the other kids abused her, cleaned her out of all of her money hoping she would die and turned their backs on her when they couldn't get any more money and property that belonged to her. She's alive and safe and sadly, aware of all of the injustice that has happened to her, but her life and care in assisted living where I put her while I recovered her finances has kept her alive and that is my reward. Now, I have to save myself and heal myself. I'm starting completely over again with nothing at the age of 62. Mom and I couldn't love each other more and she has disowned her other children who never call her, now that their lawyers have stolen all the money, having sucked mother dry, they have turned their back on her and are now robbing their own husbands and children. Be very cautious and deadly aware of the greed and avarice in this world. I walked innocently right into it, relying on the letter of the law to protect me and my mother. My sisters and their children (judges, lawyers, investigators, APS, public fiduciary, guardian, county assigned hospice and assisted living managers - it's a racket!!) were all sociopaths and psychotic greedy, selfish liars and thieves, perjuring themselves under oath and putting mom's money in their pockets. I told my mother for 45 years to cast not her pearls before swine. I didn't speak to either of my sisters for 45 years (now their own children are estranged, hate their mothers and have NOTHING to do with them, never speak to their own mothers who aren't even allowed to know their phone numbers; they came and testified in the hearing on their grandmother's and my, their uncle's, behalf. They stay in communication with me and mom, but not with their own mothers whom they despise. I told mom, "don't go into a room with a cobra in it." Stay away from your lying, thieving dishonest children. Those children have all along presumed that everything Mom owned belong to them and by continuing to communicate with her evil children she entitled them to ruin her life. She cries every day for me now and rues the day that she ever included her wicked liars in her life. They left her flat broke and wishing she could go home with her son, the home that their lawyers are now liquidating to pay for their lavish self-paid salaries and at the expense of the son who is now destitute at the age of 62. I was that son who sacrificed everything I had to save my mother when her grandson left her for dead on the lawn of the emergency room, he was too stoned on drugs and didn't want to take her all the way into the emergency room so he dropped her off outside where a male nurse found her, picked her up and took her into emergency ICU - true story. I'm glad I did the right thing but it wasn't fair of the judge and my sisters to put their mother in a home to rot alone and steal her 3 homes when 5 medical experts all declared her competent, but the judge over-ruled their expert evaluations and tests which she passed with flying colors and no doubt to her competency, the judge declaring in court instead: "I'm the expert." (so arrogant he spoke and it's in the transcript), just so he could carry out his agenda to steal her estate! Beware! Take care of your mother but tell no one your intentions. The managers at her assisted living illegally alerted my sister, breaching confidentiality clause in the lease to keep all information private which is only allowed to be divulged to the Power of Attorney, my sister was not her POA, I was, they broke the law and it would cost us too much money to sue them (the whole town of Yuma AZ is a healthcare racket!), when mom and I were giving assisted living her 30 days notice so I could take her back to her beloved home which the grandson was squatting in rent free for 7 years, so his mother, my sister scheduled an illegal 4 day hearing on March 12 (it has to be 2 weeks minimum) in order to block her mother's eviction of the grandson in a legally scheduled hearing on the 13th, and the lawless Yuma judge rescheduled an illegally scheduled hearing, justice delayed, denied, corrupted! Just so the daughter wouldn't have to be responsible for her 37 year old deadbeat son, illiterate, never has had a job in his entire life, she claims he's retarded when he is not, 3 illegitimate kids by 3 different women, and he has never paid a penny in child support in 11 years and has lived off of "grandmommy" his entire life! My Mom financially needed her home back, HER asset and resource in order to recover from the bankruptcy her same daughter and grandson put her in by charging over 100,000 dollars collectively in unauthorized charges to her good credit and her cards behind her back, and by swindling her in fraud investments with them where they promised to "pay her back", then they tried to steal their matriarch's own home in court away from her while their own lawyers stole the estate away from them! So the crooked judge and lawyers and investigators could put the money in their own pockets. The judge and his appointed lawyers and investigators took every penny of Mom's assets for themselves - $300,000 dollars!
The exact price of the sale of mom's ocean view home, 4 bedroom 2 bath home on a cliff over-looking the Pacific ocean on 3 acres. They stole every asset she had to pay themselves salaries and she's heart broken, completely devastated. A good mother and caring grandmother should not have been treated this way, she cared for everyone who abused, neglected her and left her to die after stealing everything she worked a lifetime to earn.

Thank you for taking the time to write your experience of caregiving. I find this very insightful into my own relationship with my mother with dementia and can understand her better.

We normally feel resentment when it absorbs our own life (quality of life), especially when you're younger and have to work and care for a parent or child. It's all very exhausting, when there are so many things to deal with (sometimes a few or more at a time)... then, there's the family 'issues' that many of us have to contend with to no avail and bitter endings. It sucks the life out of 'us'. Doesn't mean we don't love the person we're trying to care for, otherwise we would have to sacrifice our own lives (which most people choose NOT to do)... A caregiver is a very special person. The sooner we realize this, the sooner we can start our own healing (so we don't get sick).

Marlis,
Resentment is not a word to be used lighly. I may have resentment at times toward my family when they choose not to be more involved, not at my mom, just the illness. I do resent it.
I as well like to laugh and make others laugh. My mother's hearing keeps getting worse, so at time what she repeats I try to make light of. Let's say this afternoon, I said come look at all the baby quail on the patio, she may repeat it with, how could there be a whale out there, I tell her what I said and she just laughs.
God gave us the good with the bad, as well as laughter. I do not know how far along Charlie is yet, it sounds like he is in better shape than my mom. You are correct in saying, letting others know what may come their way, is just a normal thing to do.
You do not resent Charlie, you wish you had a magic wand, and could make him better, we all do.
Julie Heaton/ Jazmine1