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Just wondering if I have joined the wrong group. So far I am learning what a burden I must be to my family.


I have been disabled for multiple yrs and am starting to develop other health problems that are leaving me less able to function. I am only 55, have epilepsy, severe PTSD, depression, diabetes, skin issues yet to be diagnosed. I am finding it harder and harder to make it through each day with any positivity. Hoping to discover new ways to cope with my disabilities.

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.
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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.
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freqflyer Aug 14, 2019
I am also in my 70's and I plan to do what AlvaDeer is planning. I am getting all my ducks in a row such as Power of Attorney, Medical Directive, Revocable Trust.

Hopefully I can move to a 55+ community that has added care such as Assisted Living. My main issue is convincing Sig Other that it is the right thing to do, he is in denial that we can continue to age in place.... stairs will not be our friends.
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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.
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Martha007 Aug 16, 2019
Yeap, you couldn't have said any better. Being caregiver carries so many hats I would say lot more than five day and night. Yes, there's was times I cried from frustration. I couldnot keep up with everything comes your way. I am caring for my 91 yrs husband soon to be 92 with Lew body dementia. Taking care oneself is in the bottom of the list. I learned lot from this pg.
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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!
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Girlsaylor Aug 16, 2019
Aren’t these people here just the best?! I read all the posts so far, and they are helpful to me.
I also am my own caretaker, plus care for spouse. We are both seniors. It is hard! I understand your concerns, living my own as well.
From your brief post, I hope you have good diabetic control. That is crucial, for you to feel as well as you can, and is under your control. Self care for diabetics is ongoing, and it takes recharging sometimes, when we despair over the work we must do to control our own disease.
Are the medications correct that you take for the health conditions? Do you have a good doctor who is managing the prescribing of medications and dissemination of information for your health? This is a partnership, being transparent with your doctor, and being compliant with treatment.
I have CPTSD, and these medical syndromes can destabilize us mentally, resurfacing when we least expect the emotions to bring us down. It is recommended to have a good therapist when you need a little help getting through the rocky spots. I’m not always good at doing that self care myself, being very overburdened with my own poor health, hubs’ major health issues.
Right now I’m working through getting some medical issues resolved, so my Other hip and both knees can be replaced. I handle all medications times two people, plus doctor and hospital appointments. Some days the medical ‘to do’ list is much longer than the hours in the day. I find list-making gives me logical direction for all the medical details. For instance, here’s today’s list:

To Do right away

Call doctor for new script for hubs’ escitalopram, fill at PublixPublix
Pick up my Lost medical device saved at My internist’s front office desk, 2nd floor
Follow up on Tramadol/Lyrica with Dr Ross. One week would be Wednesday, next week
Take all imaging and bloodwork requests to hospital pre-op Tuesday
Pick up inhalers at Hubs’ pulpy office
Pedicure appointment before hip replacement surgery
Email for plumber appointment to rebuild toilet and fix shower leak
Scan EKG result, email to Cheyenne at OS’ office
Reschedule Hubs’ October Colonoscopy for November, when I am cleared to drive after joint replacement
Call Dr Nyce for Cholestyramine script, 4 cans, for 84 days, for LoCost Pharmacy
Assemble all lab and imaging orders to take along to next Tuesday Pre-op hospital appointment
Order remainder of post-op supplies from my supply list
Arrange to pick up DME items I’m borrowing for my recovery period

As you can see, I have to write everything down, to be sure I, and my spouse, get our medical care. I also run the house, without help. Have roofer coming for leak, hopefully today.

Please avail yourself of a skilled therapist, if you haven’t already, so you can work through your medical and life issues. And yes, there is much support and practical advice on these boards, from the people actually living the issues of aging. Best wishes!
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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.
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CarlaCB Aug 17, 2019
Wow, I'm so impressed with what you've done for yourself and are still doing, especially the online college courses! If everyone approached aging and disability the way you have, we'd be a much healthier, more harmonious society.
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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.
I
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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.
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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.
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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.
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GrannieAnnie Aug 16, 2019
My aunt had gold in a few teeth, and she said that was the "gold"en years.
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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.
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