Why is it that your parents do not understand how stressful it is taking care of them?

"But the decline was so gradual. They got used to counting on me for little things and slowly slid into helplessness with me doing everything. "

Yes, Windy, that was my experience too. It seems that once the parent realizes that you will pitch in and help out, they see that as the answer to their problems even as their problems ratchet up until dealing with them become a full time job. The idea that you might reach a limit - that you might be willing to help out in emergencies but not make it a huge commitment of time and energy, is unthinkable, because to think it would require them to accept a major disruption of their plan to age in place and have you assume full-time care until they die. Your parents' plan got disrupted while it was still unthinkable to them, unfortunately. My mother is still thinking on that track, because the lack of funds has forced the help to come from her daughters, at least until she's disabled enough to qualify for Medicaid. That will be the watershed for her - when she realized nobody is going to spend their life 24/7 changing her diapers and helping her bathe and dress and feed herself. Of course we're all hoping it doesn't come to that, but it certainly looks like she's heading that way at 86.

Windyridge you and your wife sound like my husband and myself. We do not want quantity without quality. Everything is in writing, no one is going to deprive us of our wishes for the end of our lives. My dad actually told his sister that he was headed to a cruise and she (his mom) has been dying for 9 months, so no he would not be coming even though she was begging to see him. Now he is in need of care and expects me and my husband to let him live with us. Which is never going to happen, I would not live with a SS, narcissist who only cares that he gets what he wants and to h**l with everything and everyone else .

I believe that the parents that can not see or understand how hard it is to be a caregiver do so by choice, they don't care what we are going through, it is all about them, period. I bet if you look back you will see that this is not a new behavior, just way more blatant.

God bless all of you unappreciated, invisible care givers. Even if the one you are caring for doesn't appreciate you, know that we other caregivers do.

I’m 63, mom 86, Dad 87. Their parents died in their mid 70s. My folks didn’t go through years of dementia with their parents, didn’t have to deal with hip replacements and multiple surgeries, nor did they have to run them around to a multitude of doc appointments.

I would like to think that us boomers who have lived through the EVERYBODY LIVES FOR FRIGGING EVER caregiving roles will spare our kids and loved ones the ordeal we have been through as caregivers.  In my case, no kids, just some distant nephews who have a vague idea of where I live.

My wife and I have committed to each other that we will not subject the other to do it yourself nursing care.  Dementia, bedpans, off ya go.

My mom is just now getting mild dementia and Dad is just in the moment now. It pisses me off a little, well, a lot actually, that I’ve never heard a word of thanks or any recognition that I have single handedly keep the SS Old Codger afloat, lo these many years.

But the decline was so gradual. They got used to counting on me for little things and slowly slid into helplessness with me doing everything. Now, neither of them have any executive reasoning and are furious that I “Dumped them in prison”, aka assisted living.

I think my case is pretty typical. I’m not holding my breath that mom will ever express any gratitude. She may speak to me again some day but maybe not.

My dad has been living with me for 15 months. He has never said
Thank you for anything I have done for him. My mom died at 71
17 years ago. He let his mom live with us for several years but it
never stopped him at all. He went out of town and left my mother who also worked full time deal with my grandmother getting up in the middle of the night and undressing. She would have to get her
back to bed and then get up and go to work. When he was home he slept in, got up got dressed and left whenever he wanted. He
Took her to his sister’s house when Mom was getting too sick to
Take care of her. Then my Mom had COPD and had to retire at 62.
My Mom hated to stay by herself but Dad would get up and go to
see his friends at the bar everyday and leave her. Now when I tell
him I am going out he freaks out and says”you’re not going to leave me alone are you?” Of course I don’t. I have a sitter that comes in
whenever I have to go out. Strange how he doesn’t remember
that now! His mother and his siblings all live into their late 80’s.
He is 85. I am 60. He was still partying with his friends at 69 and
he expects me to stay home with him and not have a life. I have a
husband, two children and 5 grandchildren that have not had very
much attention the past 15 months! I know he would have not given up his life at 60 to care for me! I am getting so bitter and I hate it.

To Suec, 40 years ago, my now 91 year old mother spent two weeks caring for my gran, and still complains about it. Mom with dementia has been living in my home for three years. I am totally convinced this woman will live to be 107...and will attend my funeral wearing her tiger stripped bonnet.....

SPRINGBIRD,
Yes, you will remember what it's like because you have DONE it. You won't forget your experience as a caregiver.

The explosion of Alzheimer's and other dementias have become epidemic because we didn't used to live this long. People died younger so we didn't see the progression of these diseases.

I, also, have wondered why our parents expect us to care for them, when they (mine included) never cared for their parents. This seems to be a phenomenon. I hope this trend changes again, having it be the norm that infirm/demented individuals be placed in AL, Memorycare or nursing homes. In most cases, the price the caregiver pays is just too high, risking physical and emotional health and possibly the destruction of their family.

We need not feel guilty to have our loved ones in facilities that have 3 shifts of trained caregivers, necessary equipment and accommodations that probably surpass anything in the home setting. Hopefully there will be more government intervention to assist us with our elders and also our children with us in the future.
We can start planning now for our old age (with its infirmities) and how we will not burden our children as our parents have burdened us.

I think they expect so much,because they need so much. If they never had kids , Who would be filling our shoes. I think there’s also a lot of denial and fear. I know my mother thinks she’s fine. The fact that I think she’s not doesn’t matter. I also believe that most of us never saw this coming. Our parent/s probably never did either. Most likely, their parents died ,way before they got to our parents age. So this is uncharted territory for us , and them and they expect a lot and in their capacity,, dementia for my mother,,  they can’t process what their neediness demands from us

Bettina, that was one thing I noticed about many of the daughters in the 1800's in my Dad's family tree. Not unusual for many of those families to have a dozen or more children. I was so surprised how many daughters never went to school. They stayed home where their Mom taught them how to cook, sew, clean house, etc.

And the daughters that never married, or the ones who did marry but didn't have children, they were the ones who took care of their parents. Even back in the late 1700's and early 1800's, my Dad's relatives lived into their 80's and 90's. One maiden daughter lived to be 103.

I saw a daughter from the late 1800's who went to college, got a masters in chemistry, and her employment was school teacher. Unlike her brother who also had a degree in chemistry, worked for a large company, working his way up to Vice President. Imagine the pay differences those two had.

You are right families lived around the corner from each other. I saw that also in the family tree. Occasionally I would find someone who went many States away. My Dad was one of them. Dad had a passion and it wasn't available in the small tiny town he grew up in. Dad went to college, then onto a large corporation. Lived away from the family.

In past generations, often an eldest daughter was expected to forgo marriage and having her own family to be the parents care giver. Women's care giving is often invisible, akin to having your very own personal servant waiting silently in the wings.  Which frankly I think a number of elders are hankering after.

As well the sobering thought that for a narcissistic elder, seeing a younger child (relatively younger of course) still having vitality and possibilities ahead of them in life, makes them angry and jealous. And by task mastering our time, they make our lives burdened and us exhausted and thus more on par with their own limited horizons.

My father never did any caregiving in his life. My mother was a caregiver for her mother, Mamaw to us grandkids, after she had a horrendous stroke in her home. ‘Mamaw’ went from ambulance to hospital to rehab then to a AL facility. So naturally my mother is more cognizant of the constant strain caregiving keeps the caregiver under. She is more understanding about my time and my daughter’s time and since she was assessed for her mental faculties and given a antidepressant she’s quite agreeable even though she has moderate dementia. My dad is the problem child. He has no idea what all is involved in care for an elderly person or how stressful it is. He is very demanding and negative as well, but he was a lot like that when he was younger. He did tell me about his grandparents once. His grandmother lived into her late 90s, still wore the old style dress to the floor and had silver hair. She seldom spoke and did light tasks around the house to help out. She watched the younger children and churned the butter. He was curious about her. But the man knows not what he asks when he demands that my daughter move in with him, he sees the role of women to do such things too.

Things were different when people stayed in the same neighborhood, were part of the same communities for generations. Everyone pitched in, now people are flying or driving all over the country to take care of parents. Also, aging care was limited, when people declined, they soon passed. Now people can linger for many many years with very limited vitality and even awareness. These are fairly new things. As well as having women being full time in the work force and having their income be a necessity to the family.

Part of the whole care giving dilemma is the invisibility of women's work, and care giving is quintessentially women's work. Some elders, especially men, feel that
providing care for them is a fulfillment of a woman's life. They're essentially doing their
care giver a favor by allowing them to help. I kid you not.

Both of my parents abandoned their own parents to move far away and ignored them in their decline. Neither of their mother's lasted long, and frankly it was partly due to their broken hearts over their children's abandonment of them.

So some members of the "greatest generation" has chosen to try and obligate their
children to perform duties they themselves chose not to perform. All families are
not created equal.

SPRINGBIRD, I believe once our parent(s) need our help as they age, we once again become that young adult who is able to do everything. Our parent(s) don't view us as being in our 50's or 70's, but back when we were in our 20's or 30's with a lot of energy.

Neither of my parents needed to take care of their own parents so all this was very new to them, and to me. Their parents had lived many States away. Plus my parents didn't notice I was having my own age related decline, I was still a "kid" to them.... [sigh]

I did have a conversation with my Dad. Dad asked me to retire from work. To which I asked him if he retired to take care of his parents and/or Mom's parents. I knew the answer was no.... he never asked me again.

Then I also explained that his own Mom had over a dozen nearby relatives to help her. And for me, I was it, to do all that those 15 people were doing. The conversation just disappeared :(

"Afraid to ask" I like that.

I am lucky, I am not yet 'in the trenches', but neither of my parents had to care for their own parents. My dad lives part time with my brother and his young family and my brother has POA, so I only have to deal with the financial fallout of Dad's past actions.

Mum has planned for many years for when she can no longer live independently, she knows which assisted living she wants to live in, plus has plans for assisted dying, should she feel she needs that option. It is legal in Canada.

I also would not allow caring for my parents to cause me to leave my job, move, or otherwise completely disrupt my life. I do not expect my children to do any of that for me either.

Springbird - your question highlights what I think is one of the most disturbing facts about caregiving. Almost nobody ever talks about it. Not in the sense of having an honest dialog between the person giving the care and the person receiving it. It's almost like a taboo, I think. Like, my mother will occasionally say something to me like "Thank you for doing this for me." but she will never ask a question like "How do you feel about doing this for me?" or "Are you okay with the role I'm asking you to take on in my life?"

I think that's the core of the reason that many caregivers feel so invisible. Nobody wants to know how you feel. They won't ask you, and they hope that you won't tell them. As long as you're doing what's expected of you and what the parent needs, nobody is inclined to look any further.

So the short answer is, I think, that people don't realize it because they don't want to know. It bites, I know.

Dear Springbird,

I am sorry, I know its extremely hard caring for an elderly parent. The days, months and years just seem to wear on. I asked myself this same question. And honestly, I don't think it comes from a malicious place. But my own parents just grew up in families where no one talked about feelings and giving acknowledgement and validation. Our culture just dictated that grown up children were obligate to care for their aging parents.

My father passed last year and I honestly think now that he just didn't think it was stressful for me. He was suffering after his stroke from the meds, his reduced mobility, he too was going through depression I think.

I know its hard to find the right balance sometimes. I hope you can get some respite care or consider talking to your parents about a nursing home or assisted living placement. When you start to feel this stressed it is time to look for other options. I wish I had done this sooner myself.

Thinking of you. Sending you love and hugs.