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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

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SusanJMT
I no longer care what others think of me either, especially selfish and uncaring siblings. I get my appreciation, thanks, pleasure and acknowledgement from my mom and her husband on a daily basis. As well as neighbors that understand the situation much better than other family members. To say nothing of doctors and other people that we have regular interaction with. This is definitely a job that requires a tough skin. And what is it that they say, what doesn't kill us will make us stronger?
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MMdndez: I think what you need most is validation. Everybody on this forum will give that to you. I've tried to explain to the clueless in a nutshell what it is like to give care to an elderly parent with dementia. I've come up with: Like caring for a very large 2-year-old fully in the terrible-twos. Sometimes like caring for a schizophrenic teenager on meth. You see the shock and awe on their faces. Well, I've finally reached the age that I don't care any longer what people think of me, and you know, I've earned the right.
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You are an adult and you can make your own decisions. Letting someone else's beliefs and ideas influence you is nonsense. While not everyone would agree with what you did, you are happy and fulfilled that you did what you did. I would not let this bother me. Your decisions and your life is no one's business but your own.
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I agree with most of 2much2cover says. Our society as a whole undervalues family. As medical science improves, so does the life expectancy. Family caregivers deserve respect particularly from their own family members. If it were not for us, they would not be able to live their lives as they choose and inheritances would be depleted much sooner, for those of us lucky enough to be paid what the service is worth. My siblings submitted a request for investigation with Adult Protective Services, the charges, no less were financial exploitation. The investigation was closed as soon as it was opened and dismissed as a spiteful and vengeful act by my siblings. While I receive $1,000.00 a week, this also pays more than half of household expenses, and I am caring for two. The investigator told us that if an agency were used the care they are receiving would cost in the area of $12,000.00 a month and slightly less than that if they were in a facility. All of you not being paid, need to consider the value of the gift you are giving to other family members because of your kindness and love for your parents. So, far based on agency fees, remember I am doing this all by myself, I have gifted two very selfish siblings the equivalent of nearly one quarter of a million dollars. That is $125,000.00 each. They refuse to help or even share any tasks and do not want to pay me.

The old folks are most often put into facilities because there is not a family member that is willing to care for them. We could learn one very important thing about the oriental cultures, they have much more respect for the elders than we do in this country. The elders are respected and admired and have life long learning to share and do not hesitate to.
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My sister who lives with grandpa, rent free, prepares his meds and goes to work before 7:30am and comes home at 10:00pm at night. She would rather be at work then to take care of him. She doesn't contribute financially. Instead of her helping, she will delegate the responsibilties to other people. She manipulates others to do jobs she doesn't want to do. She is also passive aggressive.
I can not count on my sister, can't talk to her about anything.
When she leaves for work, I come in and become full time caregiver for grandpa and then I have to take grandpa with me when I pick up my son from school. I also juggle being a single parent. My son doesn't like being around his great grandpa because of his mental illness. My dad who is at home and recovering from his surgery can not care for my son and my son can't fend for himself yet.
What keeps me going is faith. If you believe there is something bigger out there than your problems and you give your problems to your higher power like "God" or whatever it is you believe in, then it helps.
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my care recipient is lifelong bipolar combined with dementia. it is so emotionally turbulent that i wouldnt expect the average person to understand. friends are pretty much nonexistant now but its just an indication that i needed a better quality of friends. some people are just unable to empathise with complicated situations.
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I agree with the two main syntesis:
-Walk a mile in my shoes, or... don´t talk.
- I can yell, but what I do, is my bussiness...
Anyhow, we caregivers are intrinsically alone... even if we are together
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"walk a mile in my shoes". would be my response if any?. non of their business. Who died and put co-workers in charge of our emotions? screw them. u have no regrets and that is all that matters. God Bless ya!
Greg's Mom
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Thank you Wayne, I promise to always post as myself, all brash and sh--! You have a really great time in Cuba! Smoke a few Havanas while you are there, just don't bring any home.

*wink wink nudge nudge* :D
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Hi MMendez, Don't give a second thought about other peoples opinions when it comes to you taking care of someone you love. I wouldn't trade one second of caring for my younger brother matter of fact I wouldn't have wanted anyone else in my entire family do what I did and they wouldn't have done it if I asked them, my husband helped me often he was a great help. So don't let any of them see you sweat it when it comes to what they think, apparently they don't have it in them to do it or they wouldn't be criticizing you about it. Its to bad because its an experience I will never ever forget.
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I happen to like PamelaSue's posts. She speaks right off the cuff Tomorrow morning I leave for Cuba (fly to Miami tomorrow, then next morning fly to Havana). Y'all stay safe and be well. And you PamelaSue (aka "Sharkey") DO keep posting just the way you have been. Your straightforward attitude is refreshing. You don't take any bull. You call a spade a spade. Gonna drink several Bucaneros while I'm down there. See y'all after the 29th, if I'm still around. That's it for me. Nite all. :-) Wayne.
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:D
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Hi Snarky!!! Yes, I saw your quote-too funny!(I am sorry but now I have to think of you as Snarky :D ). Mishka is my nickname from childhood. Your picture is very pretty BTW.
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Thank you Mishka! Did you notice the quote on my wall now? Where it says "On My Mind..." I just had to use it! :D

Is that your real name btw? It's pretty. :)
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Deal, Snarky! ( just teasing' you ;0)
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I am a woman who just calls it like she sees it. If I can do it and laugh at the same time, I will. Judging from the notes on my wall, I'm pretty close on mark. Call me snarky if you like, I don't mind, irreverent and sarcastic fits me. If I toot my own horn ON MY OWN PAGE, that's about the only place I should. Now, if you catch me tooting out here, I give you leave to call me on it. Deal?
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Thank you MishkaM...
Send you a big hug
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Oh, and Gonzalez38, I think what your wrote-that we have to make a sort of echo - a reverberating sound to reassure ourselves -is very beautiful!!!
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In my previous post I meant to say "SURE"who Pamela Sue was referring to , not "Us" . :0/
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To Pamela Sue
Of course most of us are doing more or less the same. But this IS aforum, and also a place to cry ando to listen, and to call what canot be call outside. We understand our problems, that is why we are here. Otherwise is of no use. Of course we have to tell what we are doing, to make a sort of an echo, a reverberating sound to reasure ourselves. We do not cry for bravado. We cry for desperance, for impotence.
Note: I wrote something wrong, I wrote AD meaning Alzheimer Disease. Today has being confirmed by a set of Neuropsychology tests. Confirming the previous clinical diagnose by an internist and a neurologist. Pitty on us... a great hug to all
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And , also, your horn seems to be a tooting away on your profile page. Just sayin'
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PamelaSue,
Not us who you are referring to. But , no offense, but your post seems rather snarky. JMO.
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My brother and I have been taking care of our mother for about 3-4 years now. Family members and a few friends are promised to come over to visit, but no one has ever shown up. Church members have said and done nothing. Those who have offered "can not be trusted." Most of the CNA's cannot be trusted. It has been a very frustrating journey to say the least. We continue to pray for God's strength and for help. Church members, fair weather friends, relatives, and co-workers feel we are doing nothing. We have ignored the ignorance, the lack of caring and have continue to do what needs to be done. It is hard to do when we are surrounded by so much negativity, but we continue on. Society is so cold hearted. We have found that strangers at support groups and strangers along the way have been more supportive and encouraging than those would are close. My church is advocating "no abortions," but do not support caring for the elderly. I do not understand how people can disregard the elderly, abort their lives when they have given so much to society. If it was not tor the those who prepared that way, we would not be or have what we have. I find that people are selfish and down right cold hearted. Life is not just about having a good time at the expense of others. God, the creator, or whoever you may believe in , placed each of us to be of service to one another.None-the-less, we do what we have to do. I pledged years ago when I was younger, to be a doer, not just a talker or observer in life. My mom appreciates all that we do for her. It is nice to be nice. Love is action... Compassion goes a long way. I pray the hearts of people will soften.. In the mean tme, caregivers... you rock!!! Hang in there!! Thank God for support groups and people who do care!!!!
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You are an AWESOME Daughter and caregiver : ) God is smiling as you have Honored your parents well : )
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MMendez:

I cannot answer your question specifically but I hope a few quotes can help you.

Jesus said, if you were of the world, the world would love you, but rejoice for I have taken you out of the world.

Winston Churchill said, You have enemies, that is good, it means you stood for something, some time in your life.
God bless.
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1. When I was working, as long as I did my job and made the boss happy enough to sign my paycheck, that's all that counted. My co-workers, were just that, co-workers. If I had quit or been laid off, I doubt I'd have ever seen them again.
2. If I lost sleep over what others said or thought about me during my lifetime, I'd be in the insomniacs hall of fame.
3. Caregiving is about the most difficult job ever known to mankind. Even if the rewards are many and loving, it's still a heartbreaking endeavor. Therefore, I don't understand why people keep saying "they'll get theirs" or "their day will come". IMHO, it just isn't your call. If you've suffered through caring for someone, why do you want others to suffer? Wouldn't it be truly showing compassion to say "I hope they never have to do this difficult job, I wouldn't wish it on anyone else"? And how do you know others, just because you think they don't agree with what you're doing, will never show their loved ones loving care when the time comes. I think there's a little too much judging going on.
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This is the kind of caregiver that most people want to avoid, the horntooter. Well aren't YOU special.

Most of us put our pants on one leg at a time. We are real. Our hair isn't brushed, there are dishes in the sink, and we are avoiding bill collectors. We are tired, cranky, and sometimes or even often we get annoyed with the people we are caring for, whether we love them or not. We don't brag about what we do. It especially makes no sense to brag about what you are doing in a place where everyone else is doing exactly the same thing.
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Gonzalez38, I understood your message perfectly. Mental illness in all its forms can be so isolating in a family. But you have moved forward with a positive attitude and new ideas. I believe with support of the community, family members and friends, in addition to your ideas to stimulate their bodies and minds, that a better quality of life can be achieved for both the afflicted persons and those supporting them.

If English is not your native language, I applaud you for knowing two languages, something most Americans don't know.
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First of all, is what Gonzalez38 wrote english? LOL :-) W
Seriously, though, your true friends will stick by you no matter what the circumstances are, and those "fake friends" quickly will shun you @ a moment's notice. I wish you all the best in the future. Mental illness is a serious issue. So is decreasing cognitive abilities leading to dementia/Alzheimer's. AD I'm taking refers to attention deficit disorder. I hope that your wife gets the help she needs and that her life improves. All the best :-) Wayne
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For three years only a daughter and myself knew of the iniciating mental problem of may wife. In the last six months it has increased to a visible condition, some friends have noticed. So, after a clinical confirmation of AD, \i decidfed to make it public. By mail all the freiends and family comunicated, were participative. But only four came to be with us and talk nd chat.
All the others living in the same city, just became absent. And I don´t want to call them. Even if my wife talks about.
What I am doing is to open new circles, we are beguining to participate in a circle of artisans, another of yoga, and some water time in a swimming pool (she does not swim much. Also we are changing our habitual places of entertaining. This has being intyeresting to her, has shown different people and enviroments.
And is missing less our known friends. I expect that after a while, after digesting the situation, we will have them back, or we will have new aquatences and will not miss them.
Let us hope for the best
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