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.
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.
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.
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.
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.
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!
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!
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.
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.
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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