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.
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.
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.
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.
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.
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.
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.
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.
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.