Are there others on this forum that are their own caretaker?

Yes, I take care of myself and hope to be able to do that until the end. Now 77, I got sick and unable to work at 52. All my friends dropped me within 2 months. I couldn't do very much. The first 6 years were very hard. With CFIDS and severe fibromyalgia I was turned down from goverment disability insurance. Most doctors didn't help me. But I was lucky to find 1 who did. Good thing I had my own insurance which paid me something to live on. I went 12 years without health insurance but paid doctors in cash for a resonable amount. Had to learn about my conditons myself. Now there is more info available but no cure. I tried many things and found some things that did help me. I learned how to live in very limted way that became rather satisfying. I am surprised that I am still here but glad for what I learned. I used to work ALL the time and now I don't. There is so much in life to enjoy. I went back to painting and writing poetry -things I did when I was young. I also like to read. There are some support services where I live- housekeeping and meals and nurses office and some transportation. I am fortunate that I can drive and have my own car. I help people who are in worse shape than I when I can. I keep people company when they are dying. I adopted a rescue kitten who was sick at first now she is big and helthy and great company. I have COPD now and had 2 knee surgeries, etc. but I am glad for all I do have and for every day. We can care for and care about ourselves. We can use the time we have. Physical limitations limit our mobility but that's all.

I understand why you feel this way. You have good reasons for why you are struggling both emotionally and physically. It’s hard to be in a funk.

Please know that you do have self worth. I understand that it is normal to have ups and downs. I sincerely hope things get better for you.

You have received many wise and wonderful responses. I hope you are able to receive some comfort from the replies. We all want the very best for you. You are surely in a difficult situation. Hang in there. Hugs!

MOhopeful Your NOT a burden !!!!! Your a human being and are valuable !!!!!No matter how hard life is or gets, your life is valuable!!!!!

I will be 86 soon and I can no longer walk due to an old spinal injury and am in constant pain. However, I have been certified to be an extremely safe driver so, thank god, I can drive and out to eat by myself. My husband passed when I was in my 50's and at the same time, I endured l3 major surgeries in seven years. Naturally I had to retire. Funds were very limited and I had absolutely no living family. I made up my mind long before those horrible days for me started that no matter what happened to me, I was going to be solely responsible for myself and my care - no if's, and's or but's. First of all, I made sure from years before that all of my personal affairs were always l00% in perfect order at all times. I researched and investigated all kinds of options down the road and I thought about each segment of them in an "out of the box" way. That gave me insight into what I would do and how if this or that did occur - I prepared for the worst and hoped for the best. Eleven years ago, it impossible for me to remain living in my lovely home with my animals - I was beginning to be helpless. I found an assisted living facility and was able to go there. However, I went into shock. I always thought assisted living was where older people who did not want to be lonely or have more socialization and meals, etc. in a community setting went. I did not know the misfits of society that can't live alone or who are mental problems went there. I am now eleven years in an assisted living facility - and to be honest, I hate the environment. There are no activities suitable for very high functioning adult like me; you cannot make friends with these people due to mental and aging problems; it is very lonely. However, I made up my mind to survive against impossible adds because of the kitty I have with me - he is my companion and soul mate. I still work at two jobs I love (one for 50 years and the other for l4 years); I handle 99.9% of all of my personal affairs; I read two books a week; am writing an autobiography; do art work and am immersed in all kinds of hobbies. These add an ongoing challenge to my life and make life interesting. And I just finished six years of on-line college courses. Believe it or not, I am developing a photographic memory - hard to believe but true. If I were not as highly motivated and determined to set new goals on a constant basis and work my butt off to achieve them - success is wonderful for the heart and soul - I'd soon be six feet under. My advise is to determine specifically what your present problems are and try to discover possible options for dealing with each one. This will give you some peace - do not wait until the worst happens. Be prepared what you will do if this or that occurs. Then find hobbies or events in life that bring you joy and no matter how difficult or how painful, make them happen. I guarantee you things will look different. I can't walk and hate myself for being a crippled misfit but there is nothing I can do to change that fact. So I devote my time and energy to doing the "impossible" so I have a sense of achievement and self-respect. You can do this too - it works. But you have to take the first step and very clearly define the issues and then handle them one at a time.

Hi I am.
I am 69 I have been caring for my self with help for the past 4 yrs. & It's my condition is getting worse.

I am an elder at over 72 and 1/2 years of age. I see specialists when needed. You are in the right place. WELCOME aboard.

Yes, I guess there are. At nearly 73 I have my own health issues, but still independent and caring for home and what husband needs.  It is time to make some decisions for the future, and be sure my paperwork is in order.  Thanks for the question, and all the replies.

I went though that 10 years ago and again last year. Finally found a friends church that had started a ministry providing rides to Sr & Disabled. I didn't have to be a member.
For PTSD I strongly suggest finding a Therapist Fully Trained in EMDR therapy. It is the most researched and effective treatment for all forms of PTSD and may help with your depression. Also NAMI is a great resource!
I was in my early 50s but Now know that Section 42 housing ( aka Sec. 442 oe 242) is sliding scale independent living apartments that should be fully accessible. You need to be 55+ Or Permanently Disabled. Some have long wait lists, so start checking them out now. Also get a full application so you can set up an accordian folder to keep all the latest copies of documents you will need. Pick up a second accordian folder for storing info and your notes anout the facilities.
My neighbor hired CNA, LPN & RN students directly to care for her mom. If you have a home with 1 or more extra bedrooms, then room & board for a set number of hours worked is a good arrangement....or 1/2 housing & 1/2 pay...maybe from another renter. My city allowed 3 unrelated people in a house before zoning was an issue, so check.
Insurance- Be very careful researching this. Most sites list lots of doctors no longer under contract with the Ins. or not taking new patients! Medicare Advantage and other HMOs can be a nightmare..
Ex: Only 2 Oncologist in entire service area, one was not board certified in Oncology. Hospitalized.. treated for very serious complications of bladder not emptying, caused Ammonia build up which effected multiple organs including brain. Sent home with catheter, not set to see urologist for 6 weeks...led to several more falls, a comma, more hospital stays, and still saw urologist..& now neuro outpatient over a month after first discharge.
This all happened to a friends parents. The latter this summer!

Retied guy who does lawns, a neighborhood kid or even guy who goes house to house with a lawnmower may be far better than a lawn service. Lawn services come cut wet lawns, cut in a drought, etc. Set schedule. While you can, drive around, get info from workers you see in yards..or put note on door of neighbors/ strangers with well kept property.

Contact HS in your area. Most HS & Colleges require Community Service hours to be completed by students for graduation. The Dean or School Councilor can hook you up.

Welcome to the group!

I am looking at this future for myself. Right now I am disabled from CPTSD, have COPD issues, bad knees needing replaced. I am taking care of husband full time. I know one day I will be alone and have to face this question. I have no family left alive and no children.
I don't know your living situation. Maybe, AFTER you vet them and check their background legally, you may offer free rent PLUS they pay for their food, chip in on utilities, etc. in exchange for helping caretake you. Check with your city/county Elder Affairs, Elder Helpline, etc. Keep searching and if the org. you contacted can't help ask for some others that might. Network. Just because you are 55 doesn't exclude you from their information/contact assistance. From experience - DO NOT let anyone in without a full vetting, legal background check, and contract in your favor. If they are sincere, they will agree. If not, there will be others. On Facebook, internet websites there are legitimate forums to match people up. I wouldn't suggest Craigslist, etc. Go to sites that have others like you. The more you search the better your sites to explore become. Don't jump at the the first one you see. Bookmark it. Take in a lot of information and filter it. Look up sites for legal contracts for housesharing, etc. I don't know where you live, so I can't give you exact contacts, but I do know they are out there. Even though you are 55, begin searching "Elder & Senior" community, government sites for your city, county, state, and use AARP too. Good luck!

Attend NAMI for your PTSD and depression.  That is a start.  I am finishing up on a 12-week course next week, and I attend a spinoff support group twice a month, even though I need to be attending a group devoted to Alzheimer's rather than NAMI.  I still think that NAMI has helped me see things that I might not otherwise know about the brain and how other diagnoses that my mom has fit into her overall health picture.  NAMI stands for National Alliance of Mental Illness and I think is nationwide.  Google and see if you have a NAMI in your area.  They also have annual meetings for the instructors to attend.

It is hard to realize the decline in your health . Most people put more and more on their families and don't see it. Maybe for your health and theirs it , would be best to look into Assist living. That way you can return to being family not care givers.You do seem to have a lot of issues and your family is not trained to deal with them. 70% of care givers will pass away before the patient. My mom is 85 now. but in her 50's she started having famiy do simple things; find my glasses, get me a drink, ect. Now she needs help with everything. Yes it is too much. Cause guess what?? Her children aged too.

Hi. I'm not 40 yet, but am in kind of in a similar spot. I am caretaking for my grandparents, but also am dealing with health issues of my own that I am needing more assistance with. Reading about experiences of others is definitely different from this perspective. I understand completely how it feels to think you are a burden on others. I struggle with this too.
In my own experiences with my grandparents and from the posts I see here though, I can see the things I need to be aware of in terms of planning and in terms of how I interact with the people that help me. One huge thing is not taking the people that are helping me for granted. A "thank you" goes a LONG way. I saw someone else had mentioned this, but also taking care of your own mental health is so important. I have anxiety, panic disorder, and depression and see a therapist and psychiatrist for these. I know that your mental health can have a huge impact on your physical health, so I hope you are getting or can get some help in that area. If your disabilities have affected your finances (like mine have) you can find some providers willing to work on a sliding scale.
As a caretaker, I know I just want the very best for my grandparents. They have not made it easy at times, but I will do whatever I need to for them. Know that the people caring for you want the same. Hoping you can have some good moments today.

Only as much of a burden as your kids were when you took care of the them growing up. America should honor their elderly. Kids owe it to their parents to take them in. Keeping family together is enriching.

Somewhere in the responses to your post - it mentions that you are also caring for a young child - a grandchild I assume. This is a huge job - a committment that entails much physical and emotional energy - and cost - which often goes unnoticed or un-acknowledged as to the unique demands upon a kin caretaker.  Much like elder caregiving it is a loving thing you are doing. You shouldn't do it alone - or without some support unique to your situation. There are resources out there specifically for your situation. In NYS - you can contact Kinship Navigator @ http://www.nysnavigator.org/ - for helpful information, support and connection to local resources. Other states have similar programs. Good luck

I am most concerned about your depression and PTSD. Those problems make it harder to deal with the others. Please take the time necessary to find a good internal medicine doctor and a good psychiatrist (ones that can prescribe medications as well as therapy). I have a few friends in our age group (I'm 56) that found their depression was worse during perimenopause and menopause with changing hormone levels. Hormone replacement therapy and adjusting their psychoactive medications really made a difference.

Folks that post questions are usually new to caregiving or are facing a relationship change or change in condition. I hope you understand that does not imply being a "burden".

You may find greater hope by joining a faith community, prayer/meditation, and a support group (or groups) for those dealing with PTSD, depression or some of your other medical problems. Social isolation really magnifies the problems impact and groups tend to build hope. Check your local hospital and community for those type of groups. This site should help you consider options for self care.

It is not easy to take care of another person while maintaining yourself, job, house, health, marriage, etc.  Some folks on this forum are not only trying to maintain their aging parents, many still have children at home and have health issues of their own to deal with on top of it all.  It is hard and many of us don't know what we are doing and learn as we go.   For me this forum is a way to commiserate and maybe learn a thing or two from someone who has gone through what I am going through.  Just to simply know that I am not alone...there are many others out there who are just as overwhelmed as I am at times.  

There are on line groups that offer support for people with physical disabilities. ableize.com and ablehere.com are just a couple.  I am sure the worries and needs of the person needing the care and the person giving the care are slightly different.

I wish you well.
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If you aren't yet living in Assisted Living, it's time to look for an AL Apartment.

I have friends who can still function on their own, but need the Assisted Living just in case.

I think this is a wonderful forum for those of us becoming our own caretakers. Reading others' threads with problems and solutions has been very informative for me. Often when I hear advertisements or advice which references "how we can help our parents, " I think we really need to know these things for ourselves but the advertisers are trying not to offend us by reminding us that we are the ones who are getting old and needing help.

Collect information and research resources in your own community. Make use of your medical group's Social Services department to learn what is available for help in your area.
Stay with this forum for input from people who have been caretakers for others with some of your conditions.

Do you have any social contacts outside your home? A senior exercise class or book group or volunteer opportunity is a big boost to mood and the social contact would help alleviate depression.

MOhopeful, to add to my previous post, you are on the right website forums. We have a lot to share that we learned by taking care of our own parent(s) that we can pass on to others who are finding themselves in the golden years.... I have yet figured out what that term "golden years" really means :P

So if you have any questions, please feel free to start a new "thread" but make sure you are referencing yourself. Getting older isn't easy. But it is calming to know if you are experiencing something, that it could be just age related decline.

May I ask what are your skin issues? It can be tough to figure out what is causing a skin problem. It could be as simple as changing detergent to those white bottles that say free from dyes and free from fragrance.... to trying to pin point that it could be food related.

I would start researching your health problems in the search bar. There is plenty of information out there. Just be careful that what you read is correct. For PTSD & depression, you need talk therapy, by a good therapist or specialist. No, fun dealing with those a lone.

I don't think you have joined the wrong group, although perhaps you feel your family should be in it as well. It all depends what your plans are for the future - at the moment you do not have any medical conditions which if controlled require a lot of input from your family - the increasing depression you probably need to speak to your Dr about, but you sound like the sort of person who will sort that our for yourself. The important thing for all of us to do when we start to be less fit and able than we have been, and start to NEED others to assist us, is to think about how we are likely to deteriorate and start planning the best way to have our care needs met before that day arrives and whilst we can make the choice recognising the increasing burdens we MAY place on our family. Well done to you for being here and thinking about your family and options whilst you are fit enough. Very few of us can live out our days in the way we would ideally choose but we can choose where we are willing to accept compromises.

Good evening, MOhopeful,

Many of us found this website while desperately searching the internet for help when we had run out of answers while caregiving. You wonder if you have joined the wrong group. What brought you here? How did agingcare pop up in your browser? It sounds as if you have been reading many posts on this forum. Are you anticipating a time when someone will be taking care of you or just tips on how people handle aging. There are many posts about the latter, and I have learned a lot about setting up provisions that would help me and those helping me as I age.

You spoke about being a burden. Has your family said this to you? Have they intimated by their attitude or behavior that they feel this way? If not, I would try not to compare what you read on this forum to your own situation. Your question has made me think about the burdens we carry in life.

I was a single, working parent for most of my children’s growing up years. I would teach about nine hours a day, sometimes on little sleep, then take them to sport or dance practices, cook supper, oversee homework, get them ready for bed, then start my second job of household work, and getting ready for the next day. I remember one time standing in my laundry room late at night crying from exhaustion upon realizing I still had to wash clothes for the next day.
I guess, in some people’s estimation, my children were a burden, but it was one I gladly carried - there was so much they gave me in return that I never once thought of them as such. A big difference in comparison to taking care of an aging person is that my children were steadily becoming more independent. My hands on care of them was getting less and less.

I do believe we are all “our brother’s keeper” to some extent. No man is truly an island. We do depend on others even though we think we are totally independent. The posters that write here expressing their anger, fears, anxiety, physical and mental exhaustion do so mainly because the burden has become crushing. The person that they are caring for is not growing in independence but in dependence. The level of care is increasing and many are dealing with people who are violent, abusive or uncaring. Many of the caregivers on this site are doing the work of five people by themselves. It truly takes a village to take care of an elderly, declining person who can do nothing for themselves. Some of the caregivers on this forum have submerged their own wants, needs, and personality so much in attempting to do it all that I’m sure they feel that their whole life is an out-of-body experience. It’s no wonder that there is so much depression and health problems in caregivers who are overwhelmed on a daily basis.

You asked if there are others who are their own caretaker. There are many here with many health problems who in turn are trying to take care of someone else. This website attempts to lighten the burden with practical advice, humor, compassion, knowledge, and understanding. And! We can pray for one another!

I don’t know if this is the right group for you. I think it is. I hope you stay long enough to realize that.

Are you a burden? Have they indicated that you are? Do you do all you can for yourself and when someone “does for” you, are you grateful? Do you take your frustrations out on your family? Do you have your affairs in order, including those of your grandson? Are you wise with your finances so as not to be a financial burden?

Most of the time, when someone posts here, they have experienced something difficult with a person they are caring for. They are seeking guidance and a shoulder to cry on, so to speak. These posters are seldom at their Unicorns, rainbows and dancing through the tulips best. They are tired, angry, frustrated and at their wits end. At that point, their loved one IS a burden. We try to talk them down off the ledge. We share our own experiences with our loved ones, who can also be burdens at times.

You can take what you will from this forum. We all try to listen with a sympathetic ear. We do our best to help.

If you need a lot of their physical care, mental care and time, financial guidance and care, I am certain that loving you does not come without, yes, a certain amount of burden. At 77 I have already discussed with my children and grandchildren that they are not to take on in home care of me, nor change their lives (moving, etc) in order to care for me as I age. I will enter care when I need care via assisted living. For myself I hope to go quick and certain; but we are not in control of that. We all do the best we can.
But yes, I see on the forum daily people who sacrifice their own lives to their elders, giving up some of the most quality years of their lives, often with siblings and others who offer nothing, often to no thanks from their elders.
Life isn't always happy. There isn't always the perfect answer to any question and certainly not to the vagaries of aging and loss. Not everything can be easily fixed. Some things are endured with what grace we are able to call from within ourselves.
I think you will find MANY situations on the forum. Many stories. Many different people. But for the most part we come here for help, or to offer advice if it is asked, or to suggest some things that may help.
If you recognize that your needs are a burden on your family tell them you know that your needs are a burden on them, and that you love and appreciate their sacrifice. Do ALL YOU CAN whenever you can do it. Be of as much cheer as you are able and save tears for private times. Give them any break you can think of. If you do all that you will be recognized for it.
Not having more of your story I cannot know what you speak of, so this is extremely generalized.
But the answer is, yes, when we are old and helpless we are indeed a burden to our families, if a loved burden all the same. We do require more than is sometimes humanly possible to do for us. It is just a fact. It is good to be cognizant of it.

MOhopeful, well this is a website focused on *aging* and at 55 you're still young :-) but you are a caregiver, to yourself and a young child. You sound exhausted. You definitely have a big challenge and I'm sure there are others on this forum who will check in with practical suggestions and support that I am confident will help you.

As for you being a burden to others...most people cannot imagine what caregiving entails. Your LOs who help you also hopefully love you and are doing the best they can as the physical and financial challenges gradually increase. Hopefully they will be honest and compassionate with you about their limits. Their limits are real but your needs are not insurmountable (although they may seem that way right now).

It would help us to help you if you could inform us what other help (if any) you are receiving besides from LOs? Are you on Medicaid? Have you searched online for what services your county offers? Are you a member of a faith community that knows your needs? If not, let the leadership know. If they don't help you, find another place of worship (seriously). If you're not a member of a church, you don't have to be to get help. Find a church local to you, call and tell them your situation. Keep calling churches until one or more steps up.

Do you have friends/neighbors who might be able to take 1 thing off your plate? Most people are happy to help, they just don't know what you specifically need the most and how they can plug in. Hang in there, dear!