Why, oh why?

Ed1937

This is not a trick question. There are no right or wrong answers. Only honest answers. Why are you caregiving for your loved one? Why do you give so much of yourself, when it is so hard?

jfkoc

I did it because I wanted to and was able to with outside help. It was also possible because he was relatively easy to take care of.

toni2

I did it because I loved him. I would do it all over again. The good thing for me now when I dream of him, he is healed and can walk and run. It took almost 3 years, but I now have wonderful dreams instead of hearing him cry in agony. Life goes on.

Toni

LadyTexan

I did it because I loved DH and I felt it was my purpose. 

At times, I had to let go of the reins and let someone else do the actual hands-on caregiving, for example, 

• when DH was in the psych-hospital (2xs) and 
• when DH went to the SNF so I could have respite. 

Even when I was not responsible for hands-on, day to day, hour to hour care, I continued to provide care for DH by serving as his advocate and his cheerleader and providing emotional support when appropriate. You may recall, there were many times when my DH loudly and strongly resisted my care and my presence.

IMHO there are different elements of providing care and we serve different roles as needed and as we are able. Hands-on caregiving is just one element of providing care. I think our caregiving roles morph from time to time. For example, when my resources of energy and patience and both physical and mental health were used up, my role, or element, if you will, shifted to being an advocate for DH and taking the respite provided by hospice.

jmlarue

Love. A sense of duty. Avoiding financial hardship. Fear that he might be neglected or mistreated in the care of strangers. Unable to let go and let God. I know that I will need to place DH in a care facility probably before the end of the year. My physical and mental health is poor. The absolute LAST thing I want is for our sons to have this responsibility dumped in their laps if something should happen to me. He will need to be placed in a Veteran's home. There are four in our State and all are substantial distances from our home. All have extensive wait lists. I fear it's going to take an act of God for the timing on placement to work out.

ButterflyWings

jmlarue wrote:

Love. A sense of duty. Avoiding financial hardship. Fear that he might be neglected or mistreated in the care of strangers...The absolute LAST thing I want is for our sons to have this responsibility dumped in their laps if something should happen to me.

———

Exactly. 

Also, I firmly believe he would ensure excellent care for me, though possibly not hands-on, if the tables were turned. He deserves the best care possible. Our AD-depleted budget will only accommodate one scenario which is, me as primary caregiver, for better or worse.

Judi57

Love, mainly.  He was in a SNF 4 years ago when he needed rehab for his walking.  It was only for a month.  But when I saw how patients were treated, I made the decision then to care for him at home.   He's human and deserves to be cared for with dignity, not just a part of an assembly line of people lined up in the hallway or left alone in their rooms.  And also, financially pays a big role.  I can save more money by taking care of him at home.

Scooterr

I owe it to my wife of 40yrs and through those years of up's and downs she made who I am now. My wife never gave up on me always supportive and encouraging through the hard times.  Right or wrong she was always there for me and trust me she put up with a lot. Over the years I come to realize she was more than a  loving wife, and friend but she had become my mentor. I try to live up to her standards and to model my life after her. I hope and pray after this is all over and our time is up, I can say, "I did it baby were even now." I plan on keeping her here at home as long as I'm physically able.  How I do love her.

toolbeltexpert

So many have said it. Love. Honor my commitment to my wife like she has honored me. I think I can provide the best care she needs right now,that might change? I hate change as well. If she needed mc right now the only option I have found is personal pay. If I had to sell the farm I think I could, I just don't know how long that would last, the last thing I want is to run out of money to care for her. Only God has gotten me this far, and the only thing I can count on no matter what, He is faithful. He is my rock, He hears me, He cares for me. Ed thanks for a change of topics we all need to share what is good in our lives. That's why your mayor.

jmlarue  you said a lot I agree with.

Everybody I agree with you as well,  and since I have actually started posting everyone here is like family to me your all in my prayers, I am sure God knows your name. I had spent many days I could easily say hundreds of days visiting  with folks in NH, mc snf. And I was truly blessed wished I had learned more. 

toolbeltexpert

Scooterr wrote:

I owe it to my wife of 40yrs and through those years of up's and downs she made who I am now. My wife never gave up on me always supportive and encouraging through the hard times.  Right or wrong she was always there for me and trust me she put up with a lot. Over the years I come to realize she was more than a  loving wife, and friend but she had become my mentor. I try to live up to her standards and to model my life after her. I hope and pray after this is all over and our time is up, I can say, "I did it baby were even now." I plan on keeping her here at home as long as I'm physically able.  How I do love her.

Yep Scooteer that's me too. My dw put up with more than any wife would have. And I try to model some of who she is. 

Lynne D

Such a great question, Ed. My response mostly echos what others have written.

Although I complain bitterly about our relationship pre-dementia, when it comes right down to it, I love him. Every human deserves dignity, love, and understanding. Plus, he is relatively easy to care for, and the lesser financial burden of caring for him at home is a bonus.

I think that perhaps embracing the caregiver role says more about who we are and our values than anything else.

Kevcoy

I have an old fashioned trait in me called commitment. When I make a commitment to something or someone I keep it no matter how difficult it may be.  When I had a dog diagnosed with cancer I didn't throw my arms up and put her down.  I did everything I could to extend her life and make her as comfortable as possible until the end.  That is what I plan on doing with DH.  

Besides, do you think his mother would jump in and take over?

Joydean

As so many others have shared, bottom line, LOVE! I believe love and forgiveness covers a multitude of sin’s. No matter how hard life gets, love doses not change. It may get shaken, even tested, but it is still strong. God has gotten us through so much, He is the only One that can help us on this horrible disease road we are all on. 

I think LT said it all! 

Thank you Ed for this question, because it is a heart searching one. 

Vitruvius

My somewhat contrary view:

Yes love. But as I see it love is a two way affair. If I were the one with dementia my sane self would not want my wife to suffer any extreme burden of my care to the point it was killing her physically or mentally. My thought is when DW can be cared for as well or better in an MCF, AND if I am killing myself trying to care for her, her sane self would understand my placing her in the good care of others while I then continued to love and support her as her husband. 

Is that not love as well?

ImMaggieMae

Kervoy, your sentiments are the same as mine. I’ve taken care of more than one pet and did everything I could to help them and make their final days easier. It was because of love and commitment and because they were helpless on their own. I can’t imagine anything less for my DH of 43 years. He too, is becoming more and more helpless, for dressing, showering, eating on his own and dealing with incontinence. 

Like jmlarue said, I would worry about neglect or mistreatment in the care of strangers. How would he be able to tell me if that were the case? He often can’t remember something that happened 5 minutes ago.  He may be losing the essence of who he was, but I still love what is still left of him. The only reason I could foresee of not caring for him here is if he became aggressive or endangered the lives of myself and my sister who lives here. That wasn’t in his nature before and I hope it isn’t in the future.

Gig Harbor

My husband is easy to care for. I can’t leave him alone and he is needing more help. I find myself getting resentful. He is 12 years older than I am and took early retirement. He has been retired for 22 years while I retired 3 years ago. Because I am much more organized than he is and he resisted all my efforts to learn how to help I worked full time and ran the house. He felt that doing yard work once a week was his share. As his dementia has increased I am realizing that I will never have a retirement let alone someone asking the simple question of “what can I make you for dinner.” I am realizing that he is bored at home so I have caregivers who dedicate 12 hours a week to him. The minute they leave the house he can’t remember them or what he did or what he ate. He loves activities and he will do well in placement. We are certainly getting closer. I want to have a chance at a retirement where I only need to look after myself. This sounds so selfish as I read it back but it is my honest feeling.

Pam BH

I do it because he's the love of my life. The first three years were stressful figuring out how to best care for him, and my faith grew seeing God's hand in always providing and the many answered prayers. I love the references to caring for loved pets. There are definitely similarities in the pulling of heartstrings when they're helpless and can't care for themselves. In the beginning I had no clue how to be a caregiver, but this forum has and is teaching me. Thank you to all the wonderful caregivers here who unselfishly give of themselves every day. And thank you, Ed, for this discussion thread. Sometimes in the trenches we need to remind ourselves of this.

PlentyQuiet

Love... for my young adult children. I will commit to the caregiving as I am able, but I will not leave it for my college age kids. In truth, I love my kids more than my spouse.  They deserve a future

Last Dance

Over the years on this forum some people took care of their loved ones out of an obligation even though they did not love them anymore, however I feel most people take care of their loved ones not just because they love them, but because they deeply love them, and we all know no matter if they were in memory care, skilled nursing, or assisted living nobody will ever care for them or love them like we do.  For most couples love is something that grows throughout the years, and it gets stronger each year not weaker.  It makes us want to be together forever no matter what may happen to us mentally or physically. If it was me that would have had dementia Linda would have taken care of me. All that being said there are those that have had to put their loved ones in some kind of f facility because they have their own health issues and physically cannot take care of their love ones, also some love ones are so out of control that they can not handle them. Being a care giver is the hardest thing in the world, but we do what we do out of LOVE                                    God’s Blessings to all you care givers. Richard

extex

I’ve been caring for my wife for a long time with the help of a part time caregiver.  When I was putting her to bed tonight she asked me “ Who are you?”  That is tough to take but the important thing is, I know who she is.  I will continue her care at home for as long as it takes.

Jeff86

How timely these seemingly simple, straightforward questions, having just completed a messy bowel movement clean-up.  I don’t remember thinking about that when I said, “I do” 26 years ago.

Why be a caregiver?  Because that’s what crossed my path while I was making other plans.  Because my once very independent DW needs me as never before.   Because she would do the same for me if the situation were reversed, and doubtless do it better.   And because it is the ultimate and humblest way of expressing my love and gratitude for my wife.

And it honors the commitment, in sickness and in health

Crushed

I HATE HATE HATE HATE HATE   the off the cuff comments like

and we all know no matter if they were in memory care, skilled nursing, or assisted living nobody will ever care for them or love them like we do
 
 No one in this area has the right to judge anyone else's love or caring or plan  
 DW and I long before the disease discussed our plans and ideas and what to do. 

Feel free to use "I"  but not "we"  

 I am carrying out DWs expressed  wishes after careful consultation with my daughters   I was a 24/7/365 caretaker for 7 years. DW was in the bottom quartile of function when she went into MC because I could no longer keep her safe.  She has "physically" thrived in the MC  although its almost 4 years since she had any idea who I was .   
My mother had dementia and we also cared for my wife's grandfather after her mother died. 

I apologize if I seem bitter at the comment but it is really hurtful

  

Beachfan

A thought provoking topic, Ed!  I may have a bit of a different outlook, but I am at  peace with my situation.  

I cared for DH for as long as I could at home because I love him.  He is in placement since November, and I love him no less.  I can spend time with him now as his wife, without impatience, without growing resentment, without constant wariness.  I return home with a lighter heart to children and grandchildren, with renewed energy, a healthier, happier outlook on life.  I can continue to care for him through advocacy and living my best life under the circumstances.   If roles were reversed, I would want the same for him and for the kids.  I have the utmost admiration for those who can provide direct care for a LO until the end; I have equal respect for those who relinquish care for their LO to others, for whatever reason.  Everyone’s story is different; I believe we all act out of love.  

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Cherjer

That is a great question to ponder, Ed. Last night I lost all patience with my DH. We were both out of control, and I asked myself how much longer I can do caregiving. I just felt so worn out. There are two things that wear me down...hygiene and outbursts. I truly want to take care of DH  at home as long as I can physically do it, but cannot overlook placement if anger and aggression become worse. My love goes out the window many times when this happens. But I appreciate all the comments everyone made and makes  me think deeper. We have been married almost 52 years and dealing with AD since diagnosis in 2015. Only the past year has caregiving become so hard. Guess I have been lucky.

Crushed

Victoria2020 wrote:

Last Dance wrote:

and we all know no matter if they were in memory care, skilled nursing, or assisted living nobody will ever care for them or love them like we do. ...... Being a care giver is the hardest thing in the world, but we do what we do out of LOVE                                    God’s Blessings to all you care givers. Richard

And that is why we caregivers need to stay healthy so they aren't left alone with caring but non-family employees. And if that means placement at whatever point is necessary, that's the way is it.

IMHO  FAMILY  can be terrible even vicious caregivers   My father was an awful caregiver for my demented mother.  How many people here describe family members who are uncaring or thoughtless?   Family can be terrible , facilities can be terrible 
 

  

Paris20

I never asked myself that question. My husband and I are a team. We’ve known each other since we were kids. We went through it all together. I know he would do the same for me. While he still knows me, our children, our grandchildren, and our now-expected great grandson, I will keep his life as peaceful and happy as I can. It’s sometimes very hard. His physical and mental deterioration are hard to watch but we love each other.

Crushed

DW was the love of my life.  We were partners, complete total partners.  I was the homemaker and caretaker. Her mother died young  and I managed the care for her grandfather both before and after a nursing home. I also took care of her father  We talked endlessly about ourselves and what should happen in the event of health disaster.  My mother had vascular dementia for 10 years.  My wife was diagnosed with MCI  a month before my mother died.  DW was very clear that  I had long ago "paid my dues"  and had supported her in every possible way.  We both agreed our  first responsibility was to our children and any possible grandchildren.  We agreed we had an obligation to our children not to become a burden to them or limit their lives.  So we planned for institutional care when the care taking burden became too great.   

We made that clear to our children.  I cared for DW at home until it became unsafe for her and was destroying my health.  that was 7 years.   6 Months after placement she had no idea who or what I was to her.  That was over 4 years ago  

  

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Doityourselfer

I did it because I knew I could handle it even though it wasn't easy, and I was the only one who really knew how to take care of my late husband.

Quilting brings calm

Ed-  I’m going to turn the question around- why do you ask?  Did you want the reminder of why you started caregiving because it’s been so hard especially lately? Did you maybe not realize what you were getting into when it began( who does)?  Are you feeling like you are doing it out of a sense of obligation instead of love these days?  Because you think no one else will? Maybe doing it because everyone deserves ‘ to live with dignity’?  

There is no wrong or right  answer to those questions either. There’s no wrong or right answer to which method of caregiving you do: 24/7, nights  and weekends, or a facility.  It comes down to what is right for each caregiver.   There’s only the fact that this disease  is hard and often takes two people ( or the entire family) down along with the loved one.  

Are you asking because you have agreed with your daughter that it’s time to look for placement and now you feel guilty?   If so, STOP. Are you listening to people that are telling you ‘facilities are bad - only bad people put their loved ones in a facility’.   If so, STOP- even if they are fellow forum members.  They aren’t you.  Read my last sentence in the last paragraph again.  Your daughter needs you.  Maybe she’s struggling in her life  too and just not telling you. 

You’ve done a great job Ed.  There’s no shame in grabbing the life preserver.