Follow
Share

I took my nearly 90 y/o mother in nearly 11 yrs. ago. She now have severe dementia. She is still the sweetest, more adorable little old lady ever! I love her so much. But I now realize who my real friends are. I continue on day after day despite all the criticism and scolding that "You chose this" or "it's GOD's will" (from first born daughters who never lifted a finger for their mother). I was ever told by a support group social worker that "60% of caregivers die before the recipient". Some support. God forbid that you complain. We are advised to get support, ask for help, and keep you friends. But what you get is the message that no one really wants to hear about it. I have a quote taped to my laptop that reads "Caregiving: to put aside our own self-importance, needs and dreams to bring dignity, comfort and hope to another". I would do this again and again and again, though i really did not think I’d be going on 12 years at this point. But many will not offer help, or back out when they do offer or scold you for continuing to care give. They truly don't want to hear it... is it because they feel guilty? Or you are making them feel or look bad? Of course it is. That's on THEM. Do what you know to be the right thing. And learn who your friends really are. Their selfishness is not your concern. And don't expect them to ever be there for you.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Why do you think you get to "assume" others into caregiving? No one is obligated to provide hands-on care for another, no matter who they are. You *did* choose it -- all by yourself. Why are you getting mad at others and making them out to be the bad guys? Respectfully, you sound like you need help but are too proud to admit that you can't do it alone anymore. You have done yeoman's work to date, so feel good about that. Now maybe consider another solution so that you don't completely burn out.
Helpful Answer (9)
Report

The definition you post about what a caregiver is makes it sound like a martyr--a Saint.

Sainthood is a very bad job description.
Most Saints are killed in some gruesome manner, then prayed to by the general populace for eternity to fix every problem they have. Not a few Saints were reported to have had their fingers removed while they are still living (relics, don't you know).

I was taught that my one life is mine, taught to honor and treasure it. Taught to use my strengths for others (I was a nurse) but to know that this was my one life in which I must seek my own happiness, wholeness, in order to be a help to ANYone.
I wasn't taught to sacrifice my own life.
There are/were cultures in the world where family threw their own bodies on the funeral pyre, or into the pits and pyramids in order to show that their lives counted for nothing; only the dead one mattered and they counted for nothing. Sad, that.

Others may make ANOTHER choice, but I am clear in my mind that that is THEIR choice. We are all free to make our own choices.

We should not/cannot/must not make other's choices for them.
Helpful Answer (8)
Report
Fawnby Sep 2023
I've read a book, Lives of the Saints. One of the most interesting was the story of St. Marina the Monk. "A layman decides to enter the monastic life. He dresses his little daughter Marina as a boy, goes to a monastery, and asks that the two of them be accepted. As the years go by, "Marinus" develops into a valued member of the community, but no one suspects she is not a man." And there's more. It's by far the most interesting saint story I've learned. But, yeah, I always wondered about the saints who were killed; why didn't they save themselves? But wait - apparently power is conferred upon them after they're dead to (for instance) help you sell your house - St. Joseph -or find your lost keys - St. Anthony. So why would an omnipotent God not confer such power while a person is still alive and has all their fingers? (Rhetorical question.) Just making conversation here in response to your fine post.
(1)
Report
See 1 more reply
Perhaps you should consider whether you are a ‘real friend’ yourself. Perhaps you fail the test because what you want mostly from others is help for your own life and support for your choices. If they don’t give it, are you interested in their lives?
Helpful Answer (6)
Report
lkdrymom Sep 2023
Very good answer
(2)
Report
You make many good points.

You've been in a support group and been told that 60% of caregivers die before the recipient. I've never heard of a figure that high. I've been informed and read on this site that it's 30% or 40%. The truth? Who knows? No one has so far (to me, anyway) cited an actual credible source about percentage of caregivers that die first. I think that it's just a number that people throw around for effect. They've got to say something and believe that's supportive, just like they say "You have to take care of yourself, so be sure to schedule time away from your caregiving chores." They have no idea how impractical that advice is for most caregivers.

Also I've heard the many edicts that we should be selfless, put others first, and blah blah eternal blah. Why accept these pronouncements? We don't have to. We act according to conscience, most of us, and do the best we can. We don't have to sacrifice our lives for others. We don't have to drown on someone else's sinking ship. "God doesn't give us more than we can handle" is a total crock. And "call me if you need anything" is what people heard their mothers and their grandmothers say on occasions of not knowing what to do to help, but it got them out the door and safely away before the caregiver could hand them a basket of dirty laundry and say, "Wash this."

Whoever tosses these beliefs in the air is often anonymous. They might be psychopaths living in their basements with Nana's mummified corpse for all we know. Yet somehow all the common sops that get thrown at us become part of the Lexicon of Caregiving Crapola and are repeated over and over.

The people who are supposed to train and help us are not getting the training that they need to understand what caregiving is really like. That is a HUGE problem in our society. How can they help us if they perpetuate the misconceptions they were taught?

The answer is that they can't.
Helpful Answer (5)
Report
Hothouseflower Sep 2023
I was talking to a friend recently about our caregiving journeys. Hers ended some years ago but her situation was similar to mine. She said, could I have done more? And she said yes she could have. Could she have done less? Yes she could have. She said she did what she could. For some reason this resonated with me. We just do the best we can and that's it.

Limiting the caregiving talk with your friends is important because no one wants to hear it. And after awhile all the complaining about your LO starts to make you sound really bad. Save it for this site or a support group.
(4)
Report
I would say it's all about context. Venting about caregiving belongs in a support group with other caregivers or with a friend who's been through it.

Most people's friend circles don't want to hear about your LO's dementia or incontinence or the negativity you live in and that is understandable.

When I was still the caregiver for my mother and we were living together, most of my friends stopped coming around. I Understood why they didn't and that was because none of them wanted to be around my mother's negativity and fight instigating.

Most people don't want to talk politics with their closest friends.
No one wants to with seniors who are just doing it to cause a fight.

It wasn't that they didn't want to see me. They didn't want to deal with her.

I think this might be the case with your friends if they're not coming around.
Even though your mother is sweet and pleasant, your friends are your friends. Not hers.


They don't want to listen to your caregiver struggles. People who are of the mindset that you chose it are right. You did chose to do it and are still choosing it after eleven years.


Let me tell you something. The truth of it is no one really wants to hear it. Not because they feel guilty or anything like that, but because truly no one wants to hear it.

If after eleven years of 'venting' about your caregiving experience you still have friends who will listen, then you should count yourself lucky.

Save the caregiver venting and complaining for the caregiver group. Save the good times and happy occasions for your friends.
They'll thank you for it and you will thank yourself for it too.

I'll bet if you call up a couple friends and invite them to meet up for coffee or cocktails somewhere to catch up, or make plans to go to a movie or lunch, they will be happy to hear from you.

I find that most friends and family will help out in ways they are comfortable with.
Everyone isn't willing to babysit for an elder with dementia. Or help with the hands-on stuff and that is totally understandable.
They may want to help by assisting you in finding some suitable homecare aides to carry some of the caregiving burdens.
Helpful Answer (4)
Report
Geaton777 Sep 2023
Yes, it's not a sexy topic and it's usually depressing. Also, many times the LOs are not able to carry on much of a conversation because they can't keep their thoughts focused or appropriate.

My hubs and I have a small group bible study and one of the participants is a very dear long-time friend of ours (now 80 and a very bright woman who is an ordained Pastor, very interesting person) but now she has rapidly worsening short-term memory loss. When we go around the group to have people answer questions she will often now not stay on the right topic and then go on and on. We are always conflicted with how to deal with this in the group while retaining her dignity but respecting the time commitment of the other participants. It is breaking our hearts. We don't wish to discourage other participants to the point that they'll leave the group.
(0)
Report
See 2 more replies
When my 10 years estranged mentally ill mother showed up needing lots of help, my hands-off brother infuriated me by saying I’d chosen to help her. It was more like I didn’t know what to do. We had called several lawyers, tried husbands legal assistance with work, etc. Never got calls back. Or called elder law offices to only be told they didn’t practice elder law anymore. Several on here tell me I had a choice. That statement is an oversimplification.
I’m sorry you have had such a lengthy time as a caregiver. Im sure it’s a mixed blessing, given that you love your mom. As others here say, caregiving can turn into a long time.
Helpful Answer (3)
Report

A true caregiving situation only works if it works for both parties, and at this point it sounds like it is for you.(or is it?) I'm not exactly sure as I am one who tries to read between the lines of these posts.
Your quote about caregiving and putting aside ones importance, needs and dreams sounds to me more like martyrdom than anything positive or Christ like, as even He says in the Bible that we are to love one another as WE LOVE OURSELVES. If we don't first love ourselves with our needs and dreams, how can we truly love another? You might need to ponder that for a while.
This is a choice that YOU made to take care of your mother indefinitely, so don't be mad at others in your family or sphere of friends that have chosen otherwise and are actually living and enjoying their lives.
Hopefully when this caregiving journey is all said and done, you'll be able to look back and say that you too were able to live and enjoy your life despite being moms caregiver.
Life is short and life is precious, so live it well my dear.
Helpful Answer (3)
Report

Caregiving is a lonely job. I TG I had my DH. Because my Moms friends no longer visited her. The ones that did, I tried to leave her alone with and make them comfortable but those visits eventually stopped. She had been very involved in her Church, but got no visit from her minister. She received cards each month from 2 church members. Even her sons did not take the time to visit. Its what it is.

People don't want to hear about the trials and tribulations of Caregiving. I know my daughters didn't and one is a Nurse. Never got "you chose it" because I didn't. I took my Mom in because there was no other option at the time. A hospital/rehab stay determined she could not go home. I wanted to get her house sold to place her in an AL. 20 months later it had not sold. In looking for respite care so I could go to a wedding 8 hrs away, I found the AL was having a 50% sale on room and board which meant I could place Mom for a year and hope the house sold in that time. She did so much better there. Had the socialization and able to just wander around the halls. The staff loved her.
Helpful Answer (2)
Report
Dupedwife Sep 2023
I am very stunned when you said your mother was very active in her church but her pastor never visited her when she had her dementia. At my church they always visit the shut-ins and give them communion.
(2)
Report
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter