How has caregiving changed your views of life and aging?

My husband of 25 years is 87 & on in home hospice care, so I am in this to the end on a 24/7 basis. We have been looking after each other for almost 40 years. I would not know how not to care for him. I realize that soon, I will be taking care of myself alone, & so my own mortality is hitting me hard. I have to rethink many things, my will, my living arrangements, joining a widow's group, Mostly as I turn 70 nxst year,I am considering how I want to spend the remaining years of my life, whether I will volunteer, or how deeply I want to delve into my own spirituality. I retired after 42 years of nursing, so i am no longer able now to really take care of others. I am lucky to be able to have the help of the hospice staff, as I now have two total hip prostheses. There are many new challenges ahead. I pray daily for more wisdom, strength. and guidance form God.

Thank you for your kind words, LastOne. I was discussing the same issue with my mom's primary caregiver who gave many years to her ailing parents and disabled sister and now regrets that she did not set boundaries and let her siblings get away with being slackers. She is resentful of the time she lost with her nuclear family. I will not let that happen...its a struggle but I am determined to stay on course. Initially we thought that if the need arose, Mom could move in with us. We now realize that is not feasible and would stress our family to the max, especially since her dementia has progressed so much. Hence, our current search for a suitable Memory Care center. Just praying every night that God keeps her safe until we find the right place. Hang in there...start taking small steps toward healthy boundaries...you may surprise yourself with the progress you make toward taking better care of YOU.

Dear TSM1013,

I admire you and applaud you.

I went down the slippery slope of allowing my mother to be a guest in my home for the last 1.5 years. I did NOT know she had dementia when she came here. But she does and horribly so. Needs care and watching 24/7.

I am proud of you for setting up boundaries and knowing that doing more could possibly suck the life out of you - which has happened to me.

I'm glad you posted as you give support for others in your situation for not letting this caregiving thing get to the point that I have letting it take away my life.

Hugs and praise to you--
LastOne

My mom is at the "in between stage" of dementia...I wish she would either get a bit worse or better, as at times she knows she is confused but other times doesnt realize the extent of her confusion. It must be terrifying and my heart is broken for her but I must admit, it is maddening to deal with 6-8 phone calls in a row from her in the evening, just as I am trying to wind down from the day, along with a plethora of other issues we have to deal with constantly now that we have entered the realm of just trying to keep her safe. I have been caring for her for 3.5 years and now have no choice but to consider Memory Care assisted living for her, which will be a HUGE hurdle to cross and for which I know she will hate me. I have no other choice, its come down to her safety, for which I am solely responsible. Even though I have been blessed to find companions to help with her care, this whole thing has been life changing for me. Most of all, it has made me a believer in QUALITY vs QUANTITY. Sure, extend a life when there is still quality left...BUT when there are things like macular degeneration and dementia (not to mention leukemia) which there is nothing we can do about in someone whose passions were sewing, gardening and reading...hmmmmmm. Not that her life lacks value but much of the happiness is gone. I have had to tell her I can try to keep her safe and help keep her as healthy as possible but I cannot make her happy, which is what I feel she expects. I have put up what I feel are healthy boundaries in order to keep myself emotionally and physically healthy for my kids and husband, who are my primary responsibility. It would be very easy to let the caregiving situation with Mom suck the life out of me but I will not allow that to happen Caregiving for elderly parents is life changing, period. The good thing is that it forced me to get my priorities in order and value each day as a gift, as we are not guaranteed tomorrow.

I had the feelings of anger until I realized because my father is blind and lives with us that I am not technically his caregiver. I do not monitor his medications or help with daily things like bathing and dressing. Mad respect for individuals who are true caregivers to their elderly relatives.

JeannetteB, good points, and a good way to work through the democratic process.

I think you would start lobbying by contacting your state and federal congresspeople and senators, and continuing to do it. Another way is to lobby as part of an organization, such as AARP. However, I believe AARP sets its own agency and has its own lobbyists.

During my political activist days I joined grassroots organizations, went to DC for meetings, participated in a few nonviolent protests and rallies, and got involved heavily at a local level, even making one fundraising speech, and once I even ran for a low level political position.

Still, individual voters can't lose by sharing their individual opinions.

Sometime ago GladI'mHere posted information on a lobbying group. I wasn't able to locate that information immediately; perhaps she'll stop by and respond.

I personally think grassroots organizations are great ways to get started; not only does it bring people of similar minds together but it builds confidence as ideas are shared and plans are developed and implemented.

The issue for caregivers I think though would be the time. Many of us just don't have much spare time.

The way caregiving changes your life are so many, and just in a lot of different ways. It has changed my views on life. Some for the better, like to be more grateful & live in the moment. Then it also can give you negative views as well, because in essence you are giving up a lot of your life, and sacrificing for your family member which is totally worth it. It just reminds you of things you've missed out on or maybe put on back burner. From experience you can't leave anything on back burner for too long or it just magically disappears! Not what you want to happen if it's a long time dream or goal of yours. All and all caregiving is a rewarding experience like no other especially if it's a parent or family member. The way I grew up family always came first, and that has never changed. Now I care for my mom, and look out for her. She quit driving about three years ago now so sure I have a lot on my shoulders, but what doesn't kill you truly makes you stronger. Family is family, and that will never change, and no one on earth will ever love you the way family does so I couldn't imagine making a different decision seven years ago. It's the right thing to do, and I will never regret taking care of the woman who gave me life:)

Hi FreqFlyer,

Seniors in high places, right faces, and in the money! They have no worries. Their money can buy them care, not happiness, but care.

LastOne

But, look at how many seniors are running for President? Donald Trump and Hillary Clinton are both late 60's..... Bernie Sanders and Joe Biden early 70's.... Dr. B. Carson, Rick Perry, J.Kasich, Jeb Bush in their 60's.

They are up close and personal with Medicare and Social Security, or soon will be.

JeanetteB, the largest lobbying group for us seniors is AARP, with 37,000,000 members.

One has to remember, The Donald said he won't listen to any lobby groups. Oops. It's us seniors who are the largest demographic to come out to vote in national elections. Some 61% of citizens age 65 and older voted in the November 2010 election, the best turnout of any age group.

Garden is right. Let's get back to crabbing about being old..........

My issue with Donald Trump is when top political journalist ask him questions [even Republican Bill O'Reilly] such as how is he going to fund having a super large military, the "wall", and the cost of removing illegals Trump never gives a direct answer. He starts talking about other things not related to the question.... or when push comes to shove he says he will hire the great managers. Not once saying how he will pay for all of this. From his own pockets? Hardly.

"This Week with George Stephanopoulos", George kept telling Mr. Trump that he wasn't answering the question, Trump would say something, and George once again would say he's not answering the question.

Got to admit, it's been a very entertaining political race so far :)

Correction...wasn't he thinking of running as an independent? Or perhaps he'll start his own party, maybe the Hair Party?

FF, I think Christie is sophisticated enough to know how to play to the voters. Remember when he cozied up to Obama after Hurricane Sandy? I think he knows where his bread is buttered.

Back to the caregiving issues.... I don't even want to think about growing old anymore.

I was reading an article the other day which compared the cost to house prison inmates vs. the elderlies income. It was shocking to say the least.

There are so many logical ways the Government could increase income for the elderly, plus implement programs that would allow for free in home help and/or provide more good professional NH's.

I've heard it said and read it many times that AD/Dementia and related diseases is becoming a Worldwide epidemic as well as the caregivers who have to care for their parents.

Just how would one start lobbying for better care of our elderly?

I just get so tired of this "immigrant" bigotry! If these idiots were intelligent enough to read history, they'd learn that we're all immigrants unless we're descended from the original prehistoric people who lived here.

I doubt that Trump will make it to the primaries and nominating conventions. I can't see the older more mature and rational people in the Republican Party choosing him as its standard bearer, but that doesn't mean he isn't going to stir up a lot of hate mongerers while he's out stumping and trying to keep his hair out of his eyes.

Maybe his businesses are failing and he just needs some publicity. If so, he should at least get a well fitted wig.

I was watching a question/answer session with New Jersey Governor Chris Christie at the Iowa State Fair and someone asked him about Alzheimer's.... Christie said that we need to put more into the funding of researching, etc. etc. etc. Bravo, he was the first Republican candidate I heard that even addressed the issue. Apparently in New Jersey he has drafted a bill regarding Alzheimer's for his State.

Older middle-class people do tend to migrate toward the extreme right wing. It is almost like an "I got mine and no one's going to take it from me." I think many people listen to FOX News too much when they get older. A horrifying thing is that Trump is carrying the older white population in Alabama at the moment. He is talking the anger that they are feeling. It's rather strange because immigration is big on their list, though I don't know anyone who has been harmed personally by immigrants. But we are told they are going to bring economic destruction down around our heads. (The only ones I worry about that with are the people on Wall Street. Those fund managers are scary.)

The unfortunate part is that the right wingers aren't presenting arguments in a logical, cogent fashion. They're not even educated enough to articulate the arguments. But they've been disrupting government functions for long enough to be a real thorn in the side of legitimate legislators.

Jesse, I'll spin off your point here.....lots of older people (that would be us Ya know) are making noise. They joined the tea party.....I've got my pension, health insurance, medicare, Medicaid, social security but gov is bad, should be shut down and all the teachers, gov employees, police and fireman cost us taxes, they should get minimum wage, vote for Trump (or insert your favorite right wing nitwit) build a big wall and stop those Mexicans from stealing all the jobs that me or my kids would never do any way...

Maybe a little exaggeration..........

I looked at a AL facility where I live. If I had two years upfront to put Mom there and the Medicaid takes over, it would cost between 120k and 184k for Moms care depending on what kind of assistance she would need. If the house sells, Mom wouldn't even make the 120k. House is in as is condition and will be lucky if we get 50k.

BTW, I am all the time talking about getting the cost of medicine and elder care down. The usual response is something along the line, "Sounds good but it ain't gonna happen." Perhaps the best we can do is make a difference in our own communities in some way.

I wish the older people would make more noise. What I'm seeing around me is that people are becoming more "conservative" as they age. People that have SS and a little pension seem to be satisfied not to rock the boat until they are very old and don't have enough money to pay NH care. Then no one listens to them, because they are so old. I have a feeling that it will be the people who are 40-60s who have the voice.

It is a sad thing that some people don't have enough to live on even earlier in life. What they tend to get is a cluck-cluck, shoulda worked harder and saved. No one listens to the poor.

So it is up to the middle class 40-60 year olds, I guess.

TSM, very insightful and meaningful post.

I'm wondering if as the current group of caregivers moves into our own years of needing care that we'll be more aggressive in lobbying and demanding more rights for medical and legal support to make the decisions we feel appropriate, rather than as you so poignantly describe, "sink into the abyss of old age and dementia".

Well said, TSM.......

I have decided that the idea of living longer is not necessarily a good thing. I think quality of life is more important than quantity after you reach a certain age. I am caring for my 89 year old mom who has dementia, blindness and leukemia. Thank goodness I have found great caregivers to help me....ti would be impossible on my own. It is humbling and saddening to watch someone who was a vital, dynamic person sink into the abyss of old age and dementia. It makes me stop and take stock of my life and how I am living it, as none of us are guaranteed tomorrow or even healthy twilight years. Aging is mean and unfair to most people and can be so very trying for us caregivers, no matter how much we love our parents and want to help. I have realized that I have to put my nuclear family first (hubby and kids) and establish healthy boundaries in my caregiving role with Mom, or I will jeopardize my own mental, emotional and physical health. My mom always put Dad and us kids before her parents....that was her priority and now it is mine. Its a hard call when Mom is so demanding and, as a pleaser, I want to make everyone happy. But can only do what I can do and preserve my own sanity and the healthy balance with my own family. It's hard, period. And I'm almost to the point of believing that all these lifesaving/extending measures we think are so wonderful are not the best idea, once someone reaches a certain point in their life, where the quality is gone. Why extend the misery for the person and the stress for the family, emotionally and financially? A controversial issue which has given me pause to rethink my ideals......

Garden, what can I say?

Sendme, you just smashed my image of the perfect husband who could cook 3 meals a day while I garden, and still be willing to do the dishes and clean the house.

No, Garden Artist, perfect husbands are not extinct, tgey are just not perfect, because they stink like everybody else.

My preference is the humble man, who admits he is a promise breaker instead of a promise keeper. And, he lies, but everybody lies, he is just honest about lying.....and so on and so on, and before I start lying, we are going for a walk, together.

Perfect husbands should be cloned. Better than trying to clone extinct mammals. Or are perfect husbands really extinct?