Caregiving with a chronic illness. How do you handle it?

Living south the only thing you can do in this situation is to stop enabling the elder and let the unkind comments run off your back.
hiring someone is an excellent solution as having cleaners come in too. Just stop doing it and ignore her.I know I am not the one in your shoes listening to the one you should be cherished by trashing you. If you can talk to a therapist to learn some coping skills and share your health problems. you are correct older (& younger) people do want to share their own health and other problems but it has to be a give and take. Many caregivers on this site do have their own problems which they share but it does make them more empathetic towards the other posters. I am an elderly person (76) and do like some support but am willing to share things that I think can help others. as far as your Mom is concerned if you feel ill go to bed and stay there and when she comes in just say "What part of me being sick don't you understand? There is a frozen dinner in the freezer pop it in the microwave and you will have dinner in ten minutes and leave me alone"

I have driven my mother to appointments when I had to turn the air conditioner on full blast just to stay awake. I had the flu last month and she wanted me to take her to the store so she could get her hair color. I just shook my head and walked out of the room. Last time I had surgery, my mother wanted to know if I had life insurance ( I don't ) and what would happen to her if I didn't come out of the surgery. Once, I had a psychic tell me that my mom had been my employer in a previous life! The other day she starting in on me again, and my father ( who normally sits meekly by) actually told her to call another family member - and he told her that she didn't care whether she ruined my health or not.

I am planning to hire someone to do some of the errands. I will be using her money. She will not allow anyone in to do housecleaning. In the past, I was out doing yard work only a few days after surgery.

Sometimes I wonder how I came to be in this family, but I know that it could have been worse. My father is more understanding, but my mother was baby of the family and wants someone to boss around. She complains about ME being 'hardhearted' by the way.

EVERY elderly person I know complains about their health problems, that they have had since they were over seventy, but they couldn't care less about teens or adults who have chronic illnesses. It's like it doesn't 'count' since you are younger than they are. Another older family member only calls me when they want me to hear their problems, and they 'hear the doorbell' when I mention any problems.

I really have found out, since I joined this site, that whatever you are going through, someone else is also going through it, or has in the past, and it's very comforting to know that you are not abnormal, after all! (Sorry about all the venting)

I fight for every hour of personal care, respite, etc. I found one good worker and two others that are good enough--they don't steal or hurt my mom. I found a great program that allows me to manage the medicaid budget-so I set the rate of pay at $10 hour which allows me more hours of care and the workers are happy to be making that rate and no gency pockets the difference. The program use to be called consumer directed care in Florida, now it is thru an HMO and it is called PDO-- participant directed care. This program also allows a family member to be paid for caregiving--I do not use it because I am stage 4 breast cancer. My 10 year old is autistic and he is also finally on the medicaid waiver services in Florida which offers the same program for him--allows you to save funds for treatments and summer camps that are not covered by medicaid. My husband and I also see the same doctors as my parents or we would never see a doctor. So we double book appointments and a lot less explaining of our situation. My dad now has mets to liver and my hubbie has heart failure. I call it extreme caregiving.

LivingSouth, I'm sorry life has put so much on your plate. I sounds as though you could really use some help and support. Being in physical pain is a difficult thing to convey to others. It doesn't show outwardly and until you are absolutely at your limit and lose it (ie: crying or shouting) no one can tell any different. I'm very sorry that this results in shouting matches and unpleasantness between you and your mom. She doesn't sound capable of understanding what you go through on a daily basis. Have you tried talking to her when things aren't so bad? If not you might try that and maybe she would cut you some slack- but this can only happen if she knows you're in pain or exhausted, etc. Please don't wait until you're about to drop dead on the floor before you say anything either. She will never read your thoughts so it's up to you to let her in on what you're feeling. She might even respond better to being made aware and being considered part of your "caregiving team". If she used to be a caring mom before her illnesses changed her, tap into that aspect of her personality. See what you can uncover and she may surprise you.
Regardless of whether she responds positively or not, you must take care of your health, spiritual and mental needs. Ultimately, you are the only one that can. It is critical for you to find some support even if the COA is not helpful. Maybe there is a local caregivers class or support group you could join. If not, then maybe there is one for the illnesses you have. Either way, please know that there are people who care about you on this site. You can always get on and share your troubles or struggles from daily life. We also love hearing about good news too! If one of us has some success with something it's amazing how much it can cheer up the rest of us. That's priceless to me. So stay connected and do your best to stay positive. Sometimes it helps just to vent a little. Take care!

I had a stroke in November 2014, how do I handle it, believe me with tremendous amount of difficulty, but my love for my wife somehow pulls me through the day.
Just hope there is a creator to help you through the day, and hope that we both will live to see another day and still have each other.

LivingSouth, ah there are times I think my parents will also outlive me. My caregiving has been being my parents *wheels* for the past six years as they are still able to live on their own without any other help.

My health has also gotten worse. Now anytime my Dad calls me [Mom is almost deaf due to age related decline] I can feel my voice tense up to a point when it is becoming difficult for me to talk :(

Back in October I had to cut back 90% of the driving because I was getting major panic attacks while behind the wheel. My Dad thinks it's an easy fix, but you can fix something that has been going on for six years, the panic starting at first to be minor and each year getting worse and worse. I kept telling my parents I don't like driving but it was my fault for still driving them, forcing myself through the panic. I spoiled them. Now Dad [93] is throwing out the guilt saying he's going to start driving again.... [sigh].

I have multiple health problems, Fibro and CFIDS, arthritis, and actually think my parents might outlive me. I live in, and luckily my mother can still do some housework, and my father helps as he can. There are some days when I cannot do what I need to, and I have gotten into shouting matches with my mother, who seems to think that I can drive when I am in a lot of pain or dizzy. I do have siblings who help some, but the majority still falls on me. My health has gotten worse, and our area COA has a long waiting list of people looking for elder assistance. I just had my first physical since 2005, and I try to take it day today, but the little things get to me - the constant home repairs or the paperwork ( since my parents never ready anything that comes in the mail). The refrigerator went out last week and now the washer and dryer...
I know the constant stress is only making me feel worse. Still we do have a roof over our heads and enough food - which is more than some people in our area have.
Because of my health condition, I have had to give up the part time work that I was doing so I have a very small income. I really miss being able to feel somewhat productive, and the isolation is very hard for me. I feel like a ghost.
I just wish that people cared about my well being and would actually ask sincerely, about how I am doing.

Although I love my father dearly and he is sweet and fairly easy to deal with, I am looking for placement for him, after 3 years. I am single and working as a nurse at a hospital. I feel trapped because it is really exhausting to take him out anymore. I am tired of having caregivers in my home and not having any freedom or privacy. I am tired of dealing with payroll, the veterans are a major hassle, and I'm afraid I'm going to lose my job due to burnout. I am 72. When he was 72, he was already retired for 10 years. I'm gaining weight, I'm not getting much exercise, I eat junk because he loves sweets, so sweets are always in my face. I'm resentful. Not feeling very well is my "new normal". I fear that he will outlive me. I have lost my footing. I want my life back and I want him to have good care. I'm spending every spare moment surveying the possibilities for him. It's not like I'm abandoning him. I expect I will be visiting him daily. But at least I can then go home to my own space. And I can visit my sons and grandchildren and go to seminars, maybe even a vacation.

It takes a village, and I have come to realize that I can no longer do it all by myself.

I have severe depression. Three suicide attempts and years of medication and therapy. My narcissist dad .... 91 years old.....became ill and the VA social worker would not allow him to be released to live on his own. Thank God our youngest son and grandson had moved in with us taking extra bedrooms. I had no choice but to find a nursing home. After a lengthy waiting period, dad finally was able to transfer to a veteran's home. It's a wonderful place. Dad would ask me if our son was still living here. I knew he was thinking he could move in if they left. Since dad lived with us when he moved back into this area, I knew there was no way I could keep my sanity if that happened again. Dad came to believe this was HIS house. Took over and we had to walk on eggshells around him. Had our son and grandson not lived here, I would have felt guilty and took Dad in....my sanity and marriage would have suffered. Caring for parents that have been loving throughout your life is also difficult but a narcissist, self absorbed parent is impossible. I suffer no guilt placing dad in a nursing home.

I can relate to most of the folks who responded here. I have Addison's disease, asthma, and compartment syndrome. My dear mom was the perfect mom growing up (really, she was). She took care of her mom, her aunt and her disabled daughter. Plus she raised five kids while working full time as an RN. Now.. I'm my mother's daughter... I'm running around taking both my parents to their doctor appts (which is many!), make sure both their medical paperwork is order and their extensive med list is updated (in addition to taking care of their household because they want to die in their house) :-(

I took my sick husband to the doctor this week and thought while I was there I should schedule my annual physical, which I was SHOCKED to learn I have not had since 2012! When I started caring for my mom (my dad's care after that).

Easier said than done, but we have to take care of ourselves or we aren't any good to anyone else. I'm guilty of not practicing this, but trying to get better about it.

Oh, my goodness. I can relate to every one of you. If only I could speak to each and every one of you. I have given up. I love my father dearly. I have given 3 years of my life to him. He, for his part, maintained the stability of the family when I was growing up. I consider this noble. He worked steadily and hard to provide the basics and sent me to college, with my mother's prodding. This resulted in a wonderful expansion of my mind and an opportunity to marry a dentist. Then, since our sensual needs weren't met, we abandoned one another, he marrying his assissant. And me happily single for 10 years, vowing never to marry again. But I stray from the topic. I also appreciate my dad surviving WWII and coming home to me since he conceived me while he was on AWOL. He went AWOL because he had the flu. And the meek shall inherit the earth. We are like the mole people. We'd rather run than fight. Again, I disgress. Anyhow, my dad was like superman to me. He looked like him with his wonderful long legs and marvelous physique. Of course I loved him. Who wouldn't? He took me fishing nearly every weekend. I was so glad to get out of my mother's hair. He taught me about all the wonderful wild edibles. Where, when, and how to find fish bait. Well I could go on and on. He was terrifically smart. He took us to the library once a week. We discussed books at the dinner table, my mother running to the dictionary to look up words. We went ice-fishing with him, my brothers and I and one year the lake froze clear and smooth. We skated on it and could see the plants and animals below. Spiritually my dad was and still is an Atheist. I view it as a strong and powerful faith. He paved my way to freedom of religion. He was a pagan and she was from a long line of Mennonites. They were united in a desire to further the race.

My dad has lung cancer and its a waiting process for my mom and my brother and 1 sister who lives out of town
I want my mom to rest because she has had open heart surgery and she is raising a 8 year old that they adopted when she was 6 months old
how do i get them to agree to put him in a hospice home and let the nurses deal with him..getting up all night ..wetting his pants ...not agreeing to do anything you ask of him..how do i do that to her and her husband that she has been with for 52 years?

I care for both parents 85 & 84 in my home. My mother is totally disabled but has her mind and my father is fairly healthy in body but has memory problems. I have a 14 yr old daughter that I'm still raising and I have a chronic disease...... ( Crohns disease)....I always say I'll probably die from the stress before my parents pass. I sometimes wish I'd have a bad flare which I usually need hospitalization for, just to get a break. Oh my gosh!! Is that a horrible thing to say? I am wishing to get sick so I don't have to do it anymore! It's been only two years but feels like 10.

My thoughts go out to everyone posting here, it is wonderful to relate to people who truly understand and share the same experiences. I wish there was a support group in my area, I have had people look and there aren't any

I, too, have fibromyalgia, osteoarthritis,etc., etc., and am the caregiver to my 6', 200 lb. husband with dementia. The stress has take a tremendous toll on me. I worry about his outliving me. I have reached out to a counsellor who has given me some strategies on relaxing and keeping prospective when I get so frustrated and angry. I am also checking with the VA, the city, friends, any source for assistance. I need not only physical help, but financial assistance as well. I also use the senior centers for either lunches or exercise classes like tai chi for other help.

I don't take it one day at a time. I need to do it 5 minutes at a time. After several tries, I have finally found a person to come in and cook for us and do some cleaning. With my fibro IBS which is always flared up, I can't eat, much less cook. But my husband needs to eat his 3 meals per day to keep up his health.

Even though he is not the man I married so many years ago, he is still my love. I will take care of him as long as I am able. Blessings to you.

And finally, I have had long talks with my pastor who gives me prayer and encouragement. I have no other person to lend a hand, so I look out to every nook and corner for assistance. Any time or amount of help gives me a little respite.

Mostly, I keep in mind that the other members of my family who have already gone, I need to cherish this time, for however long or short it may be.

I too have fibro, along with depression, lumbar spinal stenosis, degenerative disc disease, migraines, and osteoarthritis. I am a caregiver to my 61 year old husband who has multiple health issues. I don't know how I survive day to day. Sometimes I have to take it minute by minute. Self care is a priority for me...but usually ends up being last on the list until something bad happens to me. Having a fibro flare or a migraine isn't a "good enough" reason to break from my caregiving...according to my husband.

Gosh...im 58 and had to retire early as my job of 34 yrs was being moved to another state and mom is 86 on a walker with mild/moderate dementia due to alzheimers. My only surviving sister has cancer and has had 2 strokes so isnt able to help. I have chronic pain due to shoulder surgery. The anxiety of whats to come in the future is so overwhelming. I plan on joining a support group soon. I think that will be a big help.

Mkimber, I, too, am an only child, 64 on SSD, with RA & OA. I have had my 87 yr old mother living with me over 1-1/2 years now (mild dementia, type 2 diabetes, heart problems, uses a walker, etc) I was still in remission from a clinical drug trial when she moved in with me, but about 6 months later my RA started rearing it's ugly head. Both knees & 1 hip are bone on bone. Every day is a challenge - some better than others. I worry I will not be able to take proper care of her, but take it a day at a time & don't overtax myself. She has NH insurance, but when I checked on getting home care I found out the $ amount is limited (about 1year's worth in NH) so I don't want to tap into that until absolutely necessary. I try to cook from scratch and not rely on processed foods for us both, for better nutrition, & that has certainly helped her blood glucose levels (reduced insulin by half). She is capable of cooking her oatmeal for breakfast, and helps with some light chores - sets table, does some dishes & can dress herself, so I am needed mostly to remind/supervise her meds, make appointments & get her to doctors. For that I am thankful. But the stress of caregiving & the little annoyances of dealing with the memotry loss has been more than I ever expected, and has taken a toll on my health. My two adult kids help when they can, but work & distance limit that. Today is a good day - maybe I will have the energy to make some calls to senior care orgs to start finding outside help for when I need it. Has been on my to-do list for awhile now. How do I cope? Day to day, and good friends I can talk to, plus this site. Always good information and support.

Nice nurse 10 hats off to you remember u can do it I have my mother and my mother in law at home with me I care for them intensively also have heart condition (working at 40%)
I also have asthma and a 14 year old to chase after and plan to keep them both at home until death do us part which we have recently found out that the occulatzer implant inside my heart is faulty but we can pull thru this have and keep the faith UR in my heart and thoughts

As a caregiver you must care for yourself first or you won't be able to caregive to someone. Contact your local Area Agency on Aging or Bureau of Senior Services, they have in home programs that your mom may be eligible for. they should also have a caregiver support program that you can take advantage of. We do what we can as caregivers, but it's not always easy. Utilize the programs in your area to assist you in caring for your mom.

I am 63 yo taking care of mom alone now 2 years no husband or any family. Mom has no assets and only 1000 month. I use half of that to pay caregivers for break on weekends. My dilemma is I do not want to place her in nursing home. I have visited all of them and all understaffed. Can anyone out there tell me if they have kept loved at home till death with limited help? I have heart disease and chronic back pain from 31 years as nurse. Please someone respond who has kept loved one at home

I also suffer from chronic illness and live with/caretaker for both of my parents. There is no money for extra help and barely enough rescources for food etc. It is just horrible and my worst fear is something happening to me! I am an only child, we have no family and help, I just have no choice. All i can do is take it one hour at a time

I take one day at a time and once I make it through one day, I hope and pray I make it through another. There is no "secret" formula. Each of us has to find their own answer, and thank you for doing your part!

You are not doing anyone any favors by caregiving when you need help yourself. so don't do as Bob did and wait for the emergency before you make the necessary changes.

I can relate, although not to the Fibro. in 2007, after two years of caring for wife at home (paralyzed on one side, unable to get out of bed or chair on her own) I "solved" this problem by having my heart give out, and the next day was the "owner" of three bypasses to my heart and a dandy vertical scar in the center of my chest to attest for it...Thing is, I was in the hospital and all of a sudden, family jumped in and got her into a nursing home and she has been there ever since....We went broke from paying the high fees, and then she was approved for Medicaid...Now I go see her twice daily.

Necessity is the mother of invention.
Best,
Bob

I have fibrobmyalgia also and live in chronic pain. My 86 year old mother with dementia lives here and I am her 24/7 caregiver.

It is the hardest thing I have ever done and it definitely makes battling the fibro pain much harder than it would be if I was not in the role of caregiver. Taking care of myself has become next to impossible.

When it gets to the point where she needs physical assistance (in terms of lifting her) I will HAVE to help.....in the mean time I struggle to get by.

Best of luck to everyone with chronic health conditions of their own playing the role of caregiver.

I live with my alcoholic feeble 80 yr old mother. I battle anemia of chronic kidney disease, gout, back pain (DISH), osteo & rheumatoid arthritis, and depression. I'm on SSD. We've had home healthcare from time to time but none of them have worked out-they usually quit from mom's heavy smoking habit. I wear masks and spend as little time as possible around her. I've learned the hard way to grow tough skin and that I'm more important & worthy of taking care of me first. Mom is pretty demanding. It's taken a while to tell her what I'm able to do for her and when, whether she likes it or not. I've made it clear to her I will hire help if she pushes me too far. Last year was really tough. Since the New Year things have been a lot easier around the house. Care giving loved ones is a tough pretty thankless job for a healthy active individual-even more challenging and exhausting for those of us juggling health issues of our own.

I don't think my parents would expect me, with my health issues, to take care of them. There is no way I could be a live-in caregiver for my parents, they would outlive me.

Even with that said, I am not taking care of myself the way I should. Running my parents back and forth from their doctors appointments is so draining, I don't even want to schedule appointments for myself :P