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wheat2587 Posted November 2009

I don't know any more when it comes to the stress of caregiving.

Here goes. I am living in my parents home to take are of them . One having Parkinson's and the other COPD with other bad things going on in her. Dad is 88 and mom 86 . I had moved down to Florida about 5 years ago. We just built a house in New York 5 years prior to our moving and then made the stupid decision to do this. We sold our house and left our $80,000 jobs. What was I thinking. We settled in Florida , got them to being independent but still needing some care . We bought a house near by , so we could watch and be close in case something happened. Well, as they progressed , they were unable to take care of themselves any more. We had to make another decision and therefore let our house go and moved in with parents to take care of them . This has been for 2 years now , full time . Well, everyone knows how the economy is and was a few years ago, we bought our home high and lost our ass on it, but we had no choice to move in with parents . We either stayed in our house and put them in a home or leave and move in with them. I've gone bankrupt now and lost everything. I know it was my decision and not my parents to do all this , but they are making me feel that I have to do this . Oh , I forgot , I have a brother, that has lived by them for a long time . You would think he would have taken care of them , so I could hav ekept my life back home . I wanted to do 6months up north and 6 months in Florida but he wouldn't . He said , he cant do it. To top it all off , he doesn't even work and has money . ( retired early) I love my brother but everyone is telling me to talk to him and help. I have and begged him also , but he has no response. Once I told himn a long time ago , when I first moved here , and we got into this huge fight in front of my paretns and my dad started to cry . I promised this would never happen again . It was haeart braking. I just swallow alot.So I know that it's my problem now anyway to keep taking on the responsibility and not have a life of my own. Well , the main thing why I am letting this out is , I am 55 years old male and have a life partner and he has been with me on this whole thing , but it is tearing us apart. We both know that we will probably never have what we had but we do want to have a life. I can't work , (I've tried ) but as you all know , it's a full time job especially with having twoof them sick. I love my parents and I told them I would never put them in a home . I still tell everyone I can't and won't do it. But I don't want to loose my partner. My partner and I constantly fight . We never go anywhere. As far as the sex part, put it this way, he tells me he feels like he has a roommate. I am jobless , broke, partner fimnaly got a job as a CNA and brings in 200.00 a week . WOOPTY DOO. Try living on that. I went bankrupt a few weeks ago and ruined all my great credit. but kept partners credit looking fantastic . But that doesn't help because he doesn't make enough money to get a loan for a house. I was the one that made all the money to buy a house . Well, I think I am going on a tangent SORRY. I know we have given my paretns a better quality of live , ( even the doctors say) if it wasn't for me they would have been dead. Everyone says I'm such a good son . Yea, Yea Yea . It's getting old. I think you all know what I am saying. I JUST WANT My LIFE BACK and don't know haw to do it. I ran a country club and had 75 employees and made many critical decisions but this is the hardest job I've even had EVER. I've even lost and can't afford health insurance. SO if I get sick . Guess what! I've heard it all from everyone. Well, we're still here and with my demanding parents . I don;t know if I will have to do this on my own soon , but I hope it all works out . Partner and I have been together for thirteen years and raised four kids on our own. I don't want to loose that. We're starting over with everything ,I just can't loose what we have. Well, I guess I will get back to my parents and see if they are alright. This 24/7 @^*# is stressful. What did I do I just don't know anymore. I hope anyone out there that has this problem , is not going through the same thing . IF so , god bless you . All of you out there taking care of someone you love . You all deserve the highest of respect and the best in life . When we get it , is another story.

toadballet1 Nov 2009
Wheat:
yearight brought up a good point. If your parents have a low enough income (basically qualify for Medicaid) there are a few more services available to them. Utilitiy companies have plans for seniors. I find myself asking everyone if they have senior programs and am often surprised that they do (for example, her dentist). Unfortunately, my Mom always seems to be "right on the border" and does not qualify for many things from both federal and state. Her neighbor has a lower income and has a caregiver come daily to help her with chores etc.
One thing that you did not mention in your post is: how mobile are your parents? My mom has limits on her mobility but can still do a lot. When she first moved here I found myself doing everything for her to help save her energy. But what I found was that she was becoming weaker. She was becoming an invalid. So now I find things that she can do, like cooking, hobbies, etc. Even with the Parkinson's she is able to paint and do jigsaw puzzles. She loves music, so I buy her lots of CDs. She resisted going outside her home ("people will stare"), but I take her to lunch once and awhile. I have a lightweight transport chair to use for shopping trips. I have noticed after these outings, she is more spirited, her balance is better, and she seems happier. Really, anything that keeps mind and body active will do. Are they able to go to a senior center for lunch? Are there friends that you contact about visiting them? I have also met a few caregivers in my area and we exchange "sitting" so we can have a relaxed evening out. You will find yourself getting very creative. Whenever a respite person arrives, get out of the house, even to walk around the block, go to a movie with your partner...you need to recharge.
Also, I had to find the line between my Mom's needs vs. wants. The needs come first the wants sometimes have to wait on my schedule. Honestly, there was a period recently where I was spending more time in doctor's offices that at my work. But those are the "needs."
As far as employment, I started my own business several years ago and can work remotely for most of my clients. I am not sure of your work or educational background, so it is hard for me to make suggestions. Sounds like you have a great wealth of experience. Community colleges and Community Ed. are always looking for good instructors with real world experience. You would only be gone for 2hrs, 2 times a week... just a thought. Restaurant work is also seems to allow for more flexibility. Many employers also have a "job share" program. Basically two people agree to share one position. It is up to them to work out a schedule, but a least you have another person to "cover" for you during emergencies.
BTW, you should not have to explain your "situation" to any employer. All employees have family emergencies (i.e., childcare, personal illness) Most employers expect a certain amount of accommodation. Just be honest with yourself about how much time you can be available...but I would not go into great detail about your personal life.
There is this great weight that settles on top of you when things are not going well and you become immobilized. The best antidote is to compartmentalize each issue and work on them one at a time.
Come back here often....read...relate...and share your triumphs.

Wishing you a peaceful Thanksgiving.
Lilli

austinsoul Nov 2009
Wheat2587, stories like yours really remind me how all of us are in this together. I too look after an aging, elderly parent who is currently going through a very difficult period of depression, and doing this thing alone has really weighed in on me. It's sometimes unbearably frustrating and lonely, all while your life looks like it's going to hell.

I relate to your familial loyalty and devotion; I'm an only son and adore my parents, and would do anything to keep them happy for their remaining years. But it certainly is easier to talk about it then to follow through, isn't it? From all these wonderfully supportive comments I'm reading on this site, I'm realizing that we as caregivers DO have our own lives and need to sometimes devote time FOR ourselves -- whether it's to find work, socialize or to simply find a moment's peace. Have you and your partner looked around in your local area where caregivers meet and engage in group therapy sessions? I think that'll go far in helping you with a number of your concerns. Even just the meeting with other people of similiar predicaments is alone beneficial. And some of the best ideas come from group-chat or thought. It might lead to a job or referral, or at the very least network you into something promising.

Like others have said, do hang in there, dear friend. Know that your frustrations and pain are shared by many, and by sharing we can help each other through these times.

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yearight Nov 2009
Dear wheat2587, most of us on this site are frustrated. I ride the emotional roller coaster most of the time. We are only human and all these emotions are normal.
My parents live with me. I still have a teenager at home to. I work and this is because well, I need to. But also I would go totally insane if I were with them 24/7. My employer is very understanding.
My dad qualifies for some long term care help from the state because of his dementia and low income. This provides a caregiver for 3 hrs 5 days a week. Then we have a private pay caregiver for the afternoon so that I can work. We use my parents S.S. to pay for her.
My husband and I make it a point to go out even if it is just to Walmart for a few hrs. We try to take one day a month off of work and spend the day together. We do this during the week while the caregivers are here.
On a humorus, or not, note, i too have one of those brothers. He lives nearby and collects unemployment but, you know, he never has any time to come over and help.
I could tell you stories about my mom and brother that would curl your hair, but i won't. I just want you to know that you are not alone. There are thousands of us out here. Please, take some "me" time. lilliput had some good advise. Consider reaching out to a church if you haven't yet. The right church can be very helpful.
Also, is your dad a veteran? They can be helpful.
Hang in there my friend.

wheat2587 Nov 2009
HI Lilliput,
I do receive some respite time and services from the county for them . I guess it's me . I just have to boost my self up and realize that I have to do something other than 24 /7 for my parents only. I am constantly on the internet trying to look for work . I have gone out and looked for work a while back and when I got the job . Respite time changed from the company and messed up my working time . Bosses got mad etc.. etc.and now, naturally have to explain to interviewers my situation and then they never call me.How do you do it, with taking care of your mom and working also.Who watches her while you work? Respite will not watch parents because of work . That is stated in Florida at least. Sucks but that is the way it is. As far as my brother , he has tightened up his belt because of the economy also but for him to to contribute financially, he says he has lost a lot of money and is strapped himself. I just asked him , How was the BAHAMA'S Cruise he went on . Know what I mean? So anyway, I want to thank you for giving me advise . IT is really appreciated . I am still sorting things out. I always have looked on the internet for work at home jobs but so because of the scams, I don't know which ones are legit. Do yo know of any that work ? Again, thank you for your comments and I wish you all the luck in the world with your mom . Thanks for listening.

toadballet1 Nov 2009
Dear wheat:
You arrive at this site as many of us do: angry, frustrated, scared, and generally exhausted. It's okay...this is the place to vent and get good advice.
I agree with you, you DO need to get your life back. Your parents did not raise you by giving up on their lives and losing everything. They made sound decisions that protected both you and themselves and that is what you need to do to.
Very few of us in this forum is a trained medical professional. I do not know what makes us think that we can do those things for our parents 24/7. Have you checked out your local services (local office on aging)? It's a good place to start. If either of your parents have had a recent hospital stay, they are entitled to home care courtesy of Medicare. Do you belong to a church or other organization that can give you respite from the daily grind and allow you and your partner to have a night out? Are your parents able to hire a caregiver even one day a week to take over so that you can have some "me" time? I will not say that finding these helpers is an easy task...has taken me a year or so.
My mother is in her 80s, has Parkinsons and heart issues. I work fulltime and found myself dropping everything to attend to every whim. In essence she became spoiled (just as a child would) and demanding. I finally found a private caregiving organization that was not too expensive. A nice lady comes in once a week for personal care and light housekeeping. Even though that represents about 1/10 of 1 percent of what I do, it is still a welcomed break for me.
Our brothers sound as if they are cut from the same cloth. You just cannot make some one care for their parents - until the will is read of course :o( But this does not mean that you have to sacrifice your life for their care.
I no longer think that it is realistic to promise our parents that they will never end up in a care facility. Thanks to medical science, people are living longer. What medical science seems to ignore is the quality of those long lives. But I think that things have changed a lot and care is better than it used to be.
Lastly, and this is easier to say than do, but: do - not - panic. Try to make one small, productive change a day to keep yourself from going insane. Do everything you can to get a new job (even part-time, or online) that will allow you some independence and even provide you income to hire help. Try to restore your credit.
You should never put the fulltime burden of caring for your parents on your shoulders. If your brother does not want to be involved in their care can he provide financial support?

Good luck...you are not alone
Lilli

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