I have been home taking care of my mom with dementia for 2 years now, and just this past week started back to my old job and my problem is, the boss and co workers don't think I should have taken the timeout for my parents and even seem angry that I did. My mom was bedridden from hospital stay for 8 mos., and my dad was diagnosed with stage 4 cancer on hospice. I would have stayed at work if I could and had the help but I didn't and I just didn't see my poor dad changing my mom or taking care of her wounds when he was left with no energy. He tried changing my mom one day and I saw him try his hardest and he just couldn't. It was the scariest I've ever seen. How life changes so fast. But anyways back to no compassion. I've heard a few say that they would have never quit their job and it was dumb to do because we have children and everyone is faced with it but would not go to that extreme. I love being Me, and I don't regret my decision but I hate all the critisism. I am at a loss of words for these people. I just couldn't do it. Yes, I have children but I also love my parents. I just don't get people. Yes my annual salary cannot be recovered but my heart is full of love and compassion and patience and that came with my role as caregiver. I still take care of my mom , she lives with me but I had to get some insurance for me and my family. I am 40 yrs young and my mom is still at home with me and family but I haven't left my caregiver badge because I am still a big part in this. A price too few, people will pay but it doesn't mean I am not the same person. Well I am but far more better qualities then before. I just hate the finger pointing and the misunderstanding that I (took a long vacation). but by all means it has never been a vacation. Any caregiver will back me up on this one. Our pay does not come in monetary form but spiritual. But why do people shrug it off like it's no big deal? Just wondering if anyone has advice or been through what I am going through
I also know the frustrations/stress of caregiving. Most of that was due to society which doesn't make it easy to be a family caregiver. Hang in there.
You are doing very important work.
I have a business and when my mother was in declining health I warned a "high maintenance" first time client of the circumstances and later told her of my mother's expected death "within hours". I assured the client that her order would be completed by her deadline, two months away. She acknowledged my comments and shared a personal story like "she knows how that is", caring for an aging parent because she had just had to fly home to attend to her mother, who was having an amputation. I thought, great, no added pressure from her during this already tough time. Wrong! The day of my mother's funeral, 4 days later, this woman is wanting to know the status/progress of her order! While I had no doubt the order could be completed very soon and way before her deadline, especially now that my time and energy weren't divided, I coldly informed her that I no longer wanted her business and suggested that while she has time, to find another company. And I recommended other companies to contact. I thought her behavior was so appalling, the hundreds of dollars I gave up, was worth getting her and her headaches out of my life.
I don't know why their are people like this. I can not guess, these people with a lack of compassion, also have a lack of family in their lives. They are not close to their parents & family, had a bad childhood or feel removed from the family thing and therefore can not relate. Or, maybe it's jealousy acting out towards those who have what they don't.
I know there are exployers who stay away from hiring women because they know that women need to take off from work more for child care and family issues. I've also heard that many businesses have an attitude that pregnant women need not apply, due to the time off and medical expenses that are coming.
Is the Family Care Act limited to only taking time off for immediate family? Births & child care? Or does it apply to any care for any family member?
My Mother never showed patience, encouragement, affection, or listened to me as a child. I was scared of her nasty, selfish shrieking. Still, as a mature adult I knew the right thing to do was to take care of her when the time came. It was a bit of a shock that the other 2 siblings--the oldest girl and youngest boy-- were not equipped for various reasons.
One way to respond to people who don't understand the gift of caregiving is to say "maybe one day you will have the opportunity to sacrifice for compassion's sake." And yes, it is a sacrifice if you were living your own life and now have to put certain plans on hold. I don't like it, but I will accept it.
I offered so many times to move back home so I could help and give them a break but my older sister and I are left out of any discussion about moms health. I honestly don't even know if she is alive. I don't even have her phone number.And I have written by mail over and over but nobody writes me back.
It has broken my heart a million times over...
I work in an Assisted Living home and so each chance I can offer just a small token of caring I try.Whether it is to the person there or their family. My motto has become -"Small works with Great Love" (Mother Teresa...)
Many hugs to you who feel misunderstood in this horrible world of sickness.
You will be working thru handling your stress levels for some time--be gentle with yourself!
Co-workers/bosses often have very misconceived notions that caregiving is simply providing a bit of chicken soup or some piffly thing--they have no idea how graphic and stressful it is.
Guesstimating about 99% of the time, those doing the criticizing, are actually angry with their own issues or shortcomings, NOT yours, but your situation gives them some sort of perverse permission to speak or act out inappropriately.
SUGGESTION:
When coworkers ask something like, "How are you?" Or, "So, how was your vacation?"
You could answer: "It's sweet of you to ask; here's a website that can explain it better than I can--it can give some insight to how my time off was."
!!! [[then give them this website...]][[maybe even one or two of the posts that have the very most difficult responses/issues posted for them]]
They'll either take a look, or they won't.
If they do, they learn you were NOT on vacation.
If they don't, you have wasted no breath on answers they didn't want to hear, & they start leaving you alone, anyway--because they did their "due diligence [such as it is], by asking you how things have been with you, and you gave them a gracious stock-answer.
And MAYBE, they will remember the website when it's their turn to deal with this, themselves.
You were very lucky laws where you are, required letting you back on your job.
That's a blessing.
There will always be clods who are painfully ignorant--but it's not you, it's THEM.
Look at the awesome hospice services available here, and the people who dedicate their careers for providing comfort on the final leg of life's journey, and the social institutions (like Medicare) that make that possible.
It may be true that advertisers don't especially love the elderly, but that doesn't seem to me a good representation of American society.
There are definitely people who lack the courage or the motivation to do what is right. (There always have been.) I just don't think those people are the majority in our society.
What happened is that only four of the friends and one daughter became close to us. Inviting us and seeing us very closedly. And looking for ways to be next to us. The other just desapeared. As I tought would happen. Well, perhaps tuhat is human condition.
I have tought alot about and reached a couple of conclusions: one is that most are afraid, worry of being at risk themselves, or someone close, worry and afraid of seing at a close range a disease like they may have.. We have 70 and 74, therefore, our friends range from 45 to 70 , within the age of risk.
The second was mentioned before, they may be afraid of being asked to assist, somehow.
Anyhow Mendez, you are doing a beautiful job, don´t listen. Someone told me: if some peson does not care about you, is not your frfiend , forget it.
We have a much more important job: to care for aour love ones. That is above everything else. And like the greeks said: Wait patiently and you will see theit bodies pass by. I am not willing harm, just trying to be rational.
The actual risk of those diseases is much grater than any time before. And we are in the front line.
Many hugs and kisses to all (we) caregivers
We live in a two faced society: we pretend to value family, yet we don't give any value to caregivers who do the family value work.. Our economy is based on creating more useless products purchased from other countries that in short time break down or become outdated. Not on caring about others.
Family members caring for the sick and elderly should be given work credit for what they do in the form of government contributions toward their social security retirement and health insurance funds. Without many caregivers tolling for free, there would be many more people in nursing homes on Medicaid. Yes, I'm saying our "productive" working friends and families should be contributing to our future benefits b/c we are working for free so they can work for money. Our USA economy should focus on "products" needed that represent our values, like buliding and staffing reasonably priced but quality assisted living facilities and subsidized senior housing and ensuring that those who are paid to work as aides caring for the elderly and disabled are hired in sufficient numbers in facilities so they are not overworked and those who work in our homes are provided decent wages and health insurance. If our society doesn't care enough to make sure paid aides get decent benefits, why should they care at all about the unpaid family caregivers like us?
I live in a city where there are tons of vacant store spaces, yet, what are they building? more commercial shopping centers.They are years long waiting lists for elderly to get meals and decent affordable senior and assisted living housing or some in home state subsidized care. When a new assisted living facility is built, it is priced out of reach of the average retiree. I fear what's going to happen in the future is that when baby boomers retire because they have tried to focus on their families and haven't had the ability to accumulate a big enough nest egg , they are not going to be able to afford a place to live and receive care in their final years.
Soon we will be like a country like China with ghost towns like those featured on 60 minutes recently and laws needed to make children take care of their parents.
do not want to care for their parents. I think they see in you what they should have done for their parents and rather than dealing with that guilt quietly they decide to lash out at you as being the person who in their opinion is out of line.
Being able to care for an elderly parent does make us better people. It is an honor that not everyone has the chance to receive. Frankly the co workers who ran away from their responsibility also will never gain that special relationship you have as a child caregiver for an elderly parent. Their loss.
I would simply tell them you feel honored to be able to help your parents. However, I would write them off as people you should never depend upon. If they can't help their parents, they will not be there for their spouses or children or co-workers.
You did the right thing, you already know it. Bless you.
Elizabeth
Those who make inappropriate remarks about caregiving simply have not walked in a caregiver's shoes. Please ignore those who do not understand and be happy with your decision. You will be blessed I assure you. As a facilitator for an Alzheimer's caregiver support group, the first thing I tell all caregivers is take care of their health and well being and second to focus on what is best & works for the person you are caring for. When I was caring for my late husband as he navigated through the Alzheimer's maze, one of the things I heard most from his family & friends was, "he doesn't recognize me" so they did not visit. It is true perhaps that he did not recognize them but then they recognized him and should have honored him with a visit from time to time. We never know when the shoe might be on the other foot.Think on it!
I do think that many caregivers are looking for recognition for doing a difficult job, and all of us here give that. Once in awhile you will meet someone out in the world who gets it, but most have the "deer in headlights" look.
Think of their shock if and when they are awakened to a life of caregiving. I would laugh if it were not so painfully sad.
We take her out site seeing and to events at RV parks, with no issues. We travel in a 5th wheel and it helps the moods a lot. We actually have people that offer to help us get her in and out of the 5th wheel.
I have learned that Medicare will not give us all the tools we need, so we just work around them to make them happen to the best of our abilities. We look for ways to overcome and I do not take much crap. I don't know if that makes me a bad person or not, but I am trying to make my mom's last days the best possible. My older sister who lives near my mom for 12 years refused to take mom out more than a couple of times a week. Mom was fine, she cared for herself, the only thing was mom didn't have a driver's license to drive. I think my sister and her husband did not do right by my mom, but that is a long sorted story. So we try to show her what she longs to see before she goes and give her and us that memory. The memories are priceless and they will be ones that my siblings do not have because of their choices.
However, there will come a day when she won't be able to go out and we are bracing for it. Until that time though, we re going to cover as much ground as we humanly can.