I'll start -
1. Just because I have aides come in and care for Mom, that doesn't mean I'm off the hook. I still have to coordinate when they don't show up/show up late. We are not spoiled for having them.
2. Your time is not your own anymore. Sorry I can't take that trip or go away for the weekend. Sorry I can't just meet up for dinner in the evening or do something at a moment's notice. My life is built around my mother, trying to hold on to my job and when aides come to help.
3. Yes, this is rewarding but it can also be boring. Lots of sitting and eating which explains my weight gain. Plus the non stop worrying about everything. This is not a luxury gig.
Without help can you actually take a bath and relax or was that noise something that requires your immediate attention.
Whoops! excuse me, I have to change her, clean the floor/carpet, and rinse out her clothes and hang them before doing the laundry. What were you saying?
Shoot the food is burning now because I got so busy.
Take notes and let me know how that show ends.
Dr. appointment tomorrow after noon! What else is in the area that I can take care of while out. (medical supply house, beauty parlor, etc.)
Ever had a brown torpedo slither out while cleaning up the last movement??
Change protective underwear twice in less than two minutes. Babies are not the only ones whose bladder is on automatic empty when exposed to air. Now I have to wash my face as well.
Why is this dinner plate in the planter? Where did you hide your dirty underwear this time?
What time is it? Time for more meds? Hers or mine.
My husband does not have the flexibility with his job so I am the one to do the communication and fill in when there are issues with aides or doctor and hospital visits.
We also are starting to feel like out time is not ours anymore. We either have to take Grandma with us (which is getting harder) or one of us stays with her while the other goes. Then we both feel bad and are not gone long if we do that.
I also have gained about 10 pounds and my husband has as well. My husband is starting to not have the patience with her that is needed and I know her state is not going to get better only decline.
This is not a luxury gig. We have decided that we will continue as long as we can but we are seeing strains on our relationship that we do not want!
While my 2 younger brothers go merrily on their way. One travelling the world and spending winters in California and the other working on a PHd on the other side of the country.
I guess I am resentful and bitter. Obviously need better boundaries, but if I don't watch out and care for these elders, I know they or their own adult children sure as heck won't.
I completely understand that we are all entitled to live as we see fit, but I also wonder if any of them have souls.
Thanks for sharing.
through financials, steal wallet, attempt to take car, become "friends" sell bogus
financial products, services, etc. So much time wasted on dealing with helpers who are more about helping themselves. Or other scams.
There was a short while when my father's helpers actually helped, were on the
up and up and often even cheerful and professional. I remember walking away
with tears in my eyes because having people showing up and doing their job and
not trying to steal or create drama was such a wonderful (and rare) experience.
Add on the incessant child like demands and then the time and energy requirements of actual medical care, mobility, incontinence, endless specialized products, speciality services, organizing, mending, etc etc. It is so demanding just to be able to do the job "well enough"
People who are taking their Mom shopping once a week or who have helped a parent move once or twice, think they understand and that their have real experience with caregiving. Demanding caregiving situations are a totally different experience.
As one being cared for (and me caring for my husband) I get it. I really do.
Love to all of you great people.
Buzzy
May God bless you all, and give us all strength.
Yes this! I have no patience for those who whine about their stressful burden when their level of caregiving is comparably so minimal.
She witched when he took a nap in his chair. She witched when he would use their spare bedroom to build a table or shelf (woodworking was one of his hobbies). She controlled 100% of their lives and always did.
If shes “up there” observing what I do for MY husband, I hope this martyr and drama queen finally realizes how wrong she was and how good she really had it.
I am personally grateful for all the caregivers who are willingly and lovingly caring for their loved one at a time when they need it most. Not all caregivers are caring for elderly people, many younger moms and dads care for handicapped children. Some middle aged and older care for handicapped young adults and do this with grace and amazing love. Thank you, to all who care for others.
May God bless you!
Free time - what's that?
Take care of myself - Yeah, RIGHT!
exhausted - you bet!
worth it - absolutely!!!
And continue to take good care of yourself cause it's a much tougher job when you don't.
those who don’t have to do this don’t even try to understand - my sisterasked my husband why I was complaining & asking for help. So, sorry for my long complaint. You are not alone! You will find lots of caregivers on this forum who are also struggling & sympathetic. Don’t listen to the few who flippantly suggest it’s not that much work. Even with aides it’s a life-consumer! Stay strong & know that we understand your situation & support you. You are wonderful sacrificing so much for a parent. ❤️
Family is not family in this culture anymore. We used to all chip in and help with an elderly one, now everyone runs the other way, or lives far away. But the expectation that someone care for them is the same and the resources are slimmer and slimmer to this new generation of care givers.
My heart goes to you all. My mother is heading down the path of needing care and refusing to care for herself now , or to go to assist living.
WE who give have hearts that hope we are making someone's life of quality and when we have nothing but the struggle to make it happen, we burn up
boomers as the "me generation" is a bit of a fallacy at closer look. Both
of my parents abandoned their own, who lingered on in pain and misery for many years. They had their own lives and were being "practical". Which for their generation appears to be considered a saintly virtue even when done in a callous manner.
Also before the explosion of medical treatments that now extend lives of the
infirm for decades, many caregiving duties for parents were of relatively short duration.
I think it's ironic that our families are expecting us to sacrifice our own lives
when many either refused or never had to do the same. Actually, maybe
I'm just codependent, but it wouldn't be so bad if caregiving was not also
accompanied by all the other drama and exploitation. I find it strange that
so many of the greatest generation seem to abandon all self care and responsibility and wish to be catered to like babies. Perhaps I myself am
being callous, but it appears that there is a lot of enabling going on.
And it ironically often done by outsiders and those not actually involved
in the day to day care giving.
So many seniors do not behave like this, (of course excluding dementia
which changes personality) so I wonder what drives this abdication
of any responsibility and common courtesy? Is this really inevitable in
old age or is it something else?l Perhaps I'm way off here, but I wonder
how many seniors feel they have their adult children over a barrel. Either
by entanglement of finances (ie long promised inheritance of business,
farm, house, etc) or because that parent has never really loved their
child and the adult children are hoping that by ceaseless care and devotion that their parent's love will finally appear?
Yes Katie, indeed. Not terribly long ago, my guy had 3 health incidents in 3 years. Two of the episodes left him temporarily unable to work or drive - plus some re-learning how to walk. The 3rd spell “only” rendered him unable to drive for a month.
All 3 times, his able-bodied and nearby siblings, nieces and nephews offered him (us) no moral, practical or logistical support. None.
They all know we live in a house full of steps and my job keeps me out of the house 11 hours a day (Mon-Fri). Over the years, they all have benefitted from countless free car repairs, free home repairs and free labor form him. Yet the response to our need was CRICKETS.
Duly noted. It was a blessing to only be in our 40s/50s when we learned exactly what his “family support system” was not good for. We can plan for our old age accordingly.
The elephant in the room is...... most (not all) of them are just as thoughtless and self-centered RE their widowed 83-yr-old mother/grandmother.
When feasible (not always), my guy “over-give” on behalf of MIL - to help distract her from the no-shows.
When MIL is no longer around, good riddance to the rest. I will be cordial. I will no longer host any form of socializing with them or “celebrating” with them. I don’t care what day Hallmark says it is and which 15-lb blob of meat Paula Deen says should be on the table.
Not. Gonna. Happen.
It will be a paradigm shift. My guy will be forced to confront the one-sidedness of his family relationships. He knows intellectually that their “connectedness” is largely OUR smoke and mirrors + a mother/grandmother in common. Converting to an AS IS reality will be hard for him.
Sad. My guy has had more years than I’ve had to grasp how things inevitably play out. And understandably, he has more emotions invested in them than I do.
He thinks I enjoy being the “reality police.” Um, not really. But I’m blessed/cursed with it being the only filter I have.
I was told by a geriatric professional that I would be blamed when something happened. It made on sense. That is exactly what happened. I did not get it immediately. But then it made sense later. They needed someone to blame for their inefficiencies and maybe subconscious guilt.
It is very sad that adult children cannot come together when the parent is in need. I think my mom knew there was a rift, even on her death bed and I am sad to know that she died knowing that.
I no longer speak with my sibs as they tried to turn my mom against me, were successful for 8 months when I did not see her. We got back on track and I was with her in the near end. I have no guilt, but doubt they do either. Why would they if they were capable of changing the will and taking everything. Karma has found one of them in a very sad way, and it will find the others. I feel sorry for them more than anything to be so evil and hateful.
I wish you all the best, it is a tough journey, but for me I know I did my best, sacrificed a lot, but have zero guilt.
My mother’s decline set off a similar-yet-different saga of Perception Vs. Reality for me. Wading through the woulds, shoulds and coulds required a strength that I could not always muster.
Mom has been dead for almost 3 years. I am no longer hurt by the people who judged my approach and my decisions (about something they barely understood, thanks in no small part to my mother telling different stories to different people for the last 15 years of her life).
I am still surprised at the amount of such people.
Everyone’s an expert, eh? Ha. They wish.
Thanks so much for this site. Peace, dawn1947.
Also, I know how it swallows your time and energy to do grocery shopping ( for two households) and delivering, make doctors appointments, transportation needs, refill prescriptions and organize meds, buy any supplies like disposable pants, and organize any social stuff for your parent.
I would like friends to understand that we caregivers are exhausted, and not able to care for ourselves sometimes. Our own homes go neglected because we are so stretched for time. Social engagements can be the first to go. We are often unable to help others because there is simply no time for anything else.
I would love to hear someone say...can I go to the store for you and your parent? Or even...Tell me how I can help you out this week? Or, let me know when you have any time and I will take you to lunch or a movie. I guess what we need is a little TLC and understanding.
When mom lived with me, I literally hardly had time to eat or sleep (and couldn't sleep much anyway), much less go hang out with friends or to social engagements. Now that she is in a facility, I'm able to sleep better, but it's still difficult and emotionally draining at times, especially when she is having a paranoid or psychotic episode and I'm having to either try and calm her down, or talk to medical professionals that have been summoned if it's really bad. Not to mention paying her bills, rent, taxes and upkeep on her house (that we are unable to use for her care as of right now due to it being tied up in court because of my sister's financial exploitation), dealing with attorneys and court related to said home, shopping, prescriptions, doctor's appointments, etc.
When people who are not caregivers talk about it being a gift or an honor to take care of a parent, or when they tell me "they took care of you so you take care of them" not knowing what it's like to have a personality disordered parent who didn't really "take care of you", I imagine they are thinking of movies where it's warm and fuzzy and glowy, and everyone feels honored. I suspect that's not the reality for the vast majority of us. I think most of us are just trying to do the best we can and survive.
For the harder cases, I often draw the similarities to what a newborn requires. People seem to grasp that a bit easier. I utilize this site for engaging in caregiving issues, although it's my children's complex medical and mental health needs that bring me here.
In specific response to caregiving I typically ask if they are considering being a caregiver? If so who? A sibling, parent, Aunt, in-law etc. For all the similar situations, there are just as many variances.
Even more important to me, and echoed by many here. Are they asking because they are trying to support someone who is a caregiver and wants to better assist them. Because there is a desperate need of that in particular.
Caregiving questions tend to be focused on caring for an adult in need. The truth is, there are lots of children needing caregivers and it is very different than simply being the parent of that child. Someone too often overlooked.
I love the posters statements. Many responses here have made me chuckle as I can relate. I am divorced, disabled single mother, caring for two children who are medically fragile and whom have significant developmental delays from brain injuries. I often do not get to be a mother at all. Just as a son caregiving for his mother, probably rarely gets to simply be the son either.
Being a caregiver especially to family primarily means to accept extreme isolation, painful exhaustion, frequent self neglect to complete neglect, and emotional abuse, even if completely by accident. It shouldn't mean that, but too often in the US, it does. It means being or at least feeling abandoned alot.
I started off with a critically ill infant having explosive bloody stools, was deaf from perinatal infections, and acute microcephaly due to a spinal cord injury I received in a car wreck while pregnant. 3 months after delivering, from wheelchair basically, my oldest fell at school and suffered a traumatic brain injury at age 4. I found myself disabled, in a wheelchair, with a newborn trying to die every month and a 4 year old having lost most of his short term memory, motor coordination and greatly altered personality.
Not only did I get thrust into caregiving mode, I was in desperate need of caregiving myself. 12 years later and not much has changed (except I am divorced and walking- God is merciful). I think back to my childrens' newborn days and can completely identify the same level of need now. Except its adult sized protective undergarments instead of diapers, pediatric specialists as opposed to geriatrics, Medicaid instead of Medicare, and tons of extras frustrations that relate to school age needs.
What is the same is the drain, frustrations, loneliness, fear, loss of income, loss of friends and companionship, being misunderstood, and the deep sense of loss from watching your life go by. Becoming someone who simply struggles to exist is cruel, but also what caregiving often ends up being if not supported by others outside of that role.
And for everyone who says, "wait a minute, those are your kids...", yes true and because of that I work tirelessly without hesitation or regret. However, to say I am mothering would be a partial truth. Just as a daughter caregiving a mother can't in any way enjoy a mother daughter relationship while emptying a bedpan at 1AM and clearing her surgical drains from a hip replacement gone wrong.
The biggest misconception of caregiving is that love is enough. It's not. But it sure makes it easier. And healthy relationships before caregiving needs arise also make the most positive caregiving situations. I love this community here.-PJ