Hi Everyone. Thank you ALL so much for being here. This has been the most wonderful support group! My heart goes out to all of you! It's SO hard to be a (or the only) caretaker! I'm 49 and am totally alone to care for my mom and s-dad. I feel like just yesterday I was young, carefree, riding my bike, being with friends and remember the days where I never worried about being a caretaker for my mom. It makes me so sad to know that those carefree days are gone. I'm afraid of what the future will bring. I have no other family except my mom. I'm totally alone to care for my mom and s-dad. Both are in very bad shape with emphesema, severe heart and circulation problems, etc... At present, my mom is very ill. She has a defibrillator to regulate her heart and to shock her if her heart should stop again. She also has PAD (peripheral artery disease), which is severe. She had 3 Stents put into her legs last week. The Stent in the left leg did not work, so she needs to have an arterial/vein bypass done in her left leg. Today her left leg is very swollen and blue! Some of the blue color is from echymosis, but it looks very bad. She will call her Vascular Surgeon tomorrow (Monday) morning. I offered to take her to the ER, but she refused. I'm the only person my mom and s-dad will allow to help them. I feel that I can't take much more though. I'm on disability myself b/c of chronic pain conditions. I'm exhausted to the point of falling asleep standing up! I can't eat b/c I'm now having stomach pains. My own pain is awful. I'm having panic attacks and feel VERY depressed. "Friends" are long gone. There's so much stress in this house that no one stops in. I'd love to have just some emotional support. I think people are afraid that I might ask them to help in some way if they stop in. I wouldn't. I just need emotional support desperately. I'm taking care of ALL of the household chores. I'm working harder now than when I worked a full time job as a nurse. At least then I could come home and rest after my shift was over. Now there is no rest! Both my mom and s-dad are in such bad shape that I never know if they'll be alive when I get up the next morning. I'm scared! I've been getting bad stomach pains, chest tightness and feel like my life has become a train wreck. I just need support and need to talk with others who know what it's like to have the pressure and stress of being a caretaker. Thank you all so much for being here, although I'm sorry for the stress that you're all under. My mom and s-dad can afford to have help come in, but refuse. Any feedback, guidance, friendship and support would be greatly appreciated!
Thanks Everyone... Kathy
It seems like the only goal is to get these old people into their graves. They are never going to get better. They are only going to get worse. I find that a hopeless situation.
Sorry, for being a downer. I've got to interact with my frail and self-involved mother in a few minutes. And I'm dreading it. I just don't see anything useful coming out of the resources she consumes. I don't see anything of value in any of it. It seems like a hideous situation with no end in sight.
As for the survival instinct, if it came to that I would be outta here in a minute, But while I still have some little bit to give, I will continue to try and make their inevitable end the best it can be.
Again, This is a completely selfish act my part. How i handle all of this is ultimately going to have an affect on ME and how I view myself., and THAT is what I'm concerned with.
Please forgive me for not being more positive in this post. I'm sorry. I'm in a very bad place emotionally right now b/c of events that took place this morning. I promise to try and be more positive.
God Bless you all and I love you all! Really I do, b/c I know that all of you are under pressures right now that take their toll on all aspects of your lives. We do have each other, thank God!!! I feel blessed to have found you all!
Kathy K.
P.S. "SERENITY NOW!!!" As George from 'Seinfeld' would say....
I told my mother today that she made me too tired and she was going to have to stop nagging. She asked why I took her on. I told her because nobody else would and she wouldn't hire anyone. She said well hire some one. There again it's up to me. I have to hire someone who will be acceptable to her.
I told her I would call the Area Agency on Aging and have them send a social worker out to evaluate the situation and make recommendaations. And to my surprise she agreed. I tried to do that 8 years ago and she wouldn't have it. But I'm making that call tomorrow.
I guess there is a Santa Claus. I still wonder about God though.
Hang in there K, don't let em ruin your life, what ever it is, even in misery It is YOUR LIFE! Find some way to survive and escape and move on....
Our "old ones" become selfish and they don't understand our life is a mess and we are tired and fed up. So it is not necessary to give too many explanations. Find a help! Recharge your batteries some hours a day!
I do it, and it saves my life!
I understand you very well, sometimes I wonder if my father and mother had me just because they wanted someone to take care of them all their life. (my mother, mostly): I have the impression they did not have children, but future caregivers! I went to therapy when I was young (10 years of therapy!) and I was better afterwards, but I always have the feeling that i OWE something instead of having the feeling that i HAVE THE RIGHTTO HAVE SOMETHING, so i guess my mother's training was efficient! When I hear stories like yours I wonder why we don't pack a suitcase and go away immediately, but as we have decided to stay, please get some help someway. At the social services, they know this kind if dynamics, be sure of that. We are not the only ones. So they can certainly tell you how to get some relief.
I can't read all the posts tonight, I have to work (I live in Italy and I work by night) but I shall do it and I hope that day by day I will manage, together with the other caregivers, to convince you to be more "Selfish" and take some care of yrself.
Lots of hugs by a soul sister,...
I was so upset w/ my s-dad for allowing Bailey, my dog, to escape from the saftey of his house. All b/c I'd been trying to help two people who seemed to just assume I'd be there to do everything for them for their eternity here on earth, I almost lost my dog and my health (physically and emotionally) has suffered horribly. My s-sister was very nice to me and Bailey...at first. After about 2 weeks my s-sister got a boyfriend and there was suddenly no room for me. She needed some private time to "be with" her new boyfriend, so I was once again kind of in a homeless situation. On more than one occasion, I sat in my car, in 33 degree weather, for more than 4 hours at a time, just to give my SS her "private time"... Her new boyfriend had just gotten out of prison about 2 months prior to his getting together with her. Her place was/is very very small. I understood about her needing her privacy, and I did all that I could without getting frostbite, to do what she wanted me to do, to keep the peace. By the third week I was at her place, I saw her hit my puppy. I couldn't believe what I was seeing. My puppy wanted to play with her cat, gently, but since the cat was sitting on my SS's lap, she started to smack him! I knew I couldn't stay there anymore, but thought I'd try b/c I had no place else to go. I'd just keep my dog with me at all times, or take him to a sitter if I really had to do something. It was a Saturday and I had nothing to do, so I thought I'd do all of the laundry (mostly towels and her stuff), etc... I'd already cleaned her apartment, did all of the dishes, etc... I tried to do everything right so I wouldn't be a burden. By this time my mom had accused me of being a horrible person b/c I left her and my s-dad's house. On my 3rd day gone, my mom called me to let me know how awful of a person I was and to let me know that "I never did anything to help them!" That really hurt b/c I did 'everything' to help them. They weren't grateful at all. Then she told me she wanted "her dog" back! She was doing anything to hurt me. By the 2nd week gone, my mom had called to apologize to me. Everyday at my SS's was so hard, b/c I knew I was now the third wheel and in the way. I also knew she didn't like my puppy, who is honestly so sweet and so good. Anyone who knows me, knows that the best way to hurt me is through my dog. On my third week at my SS's, I was talking with my mom again, and I decided to do the laundry, get groceries, etc... for my SS, to give her a break from having to work full time and do those chores. I got to her house late that night and I was locked out. I had to call her on her phone to let me in. She helped me to put the bags of groceries inside and the two baskets of her laundry, and then she went back to bed. No "Thank's for helping" and no "Thanks for doing my laundry..." I didn't help her for her to say thank you, but it hurt that she seemed to be angry with me and I didn't have a clue as to why. I put her groceries away and gathered the few things I had at her place, and left. It was late late at night, and I couldn't go back to my mom and s-dad's house in the middle of the night, so I kept the car warm for Bailey, and sat in my car, in a convienience store parking lot, from about 1am until 530am, when I felt I could go back to the parents house and not cause a crisis b/c of waking them up too early. I made sure my puppy was very warm and comfortable, and I froze! I'd already paid my SS $200 rent money and left her a detailed note as to why I left. The next morning she was over at my mom and her dad's house, and came into my bedroom with a very agressive attitude, and "told me' to get out to the kitchen and we're going to talk!" - She was so angry that she was shaking. She was really angry with me for leaving and b/c of my reason's for leaving that I wrote on the note I left for her. Firstly, she left me alone overnight with her new ex-con boyfriend, which I really didn't feel safe with. I told her that I didn't appreciate her smacking my dog. She told me I was lucky that she didn't put her f**t up his rear. I remained calm and refused to get angry, which is what she wanted. She wanted a fight and I wouldn't give her one. She told lots of lies, which isn't something new for her. I'm glad my mom was there to witness her behavior. Her dad went into the livingroom and pretended to be asleep. He was discusted with his own daughter. Later that day he told my mom to tell me to stop paymt on the check I gave to her. I didn't. I didn't want anymore trouble from her. My SS can pretty nasty. She never had any intentions of helping me with my mom and her dad. So, here I am again. I have no help with the caretaking of my mom and/or s-dad. I'm worn out, exhausted, have a lot of my own pain and am feeling so depressed and alone.
I hope to be able to be welcomed back here. I need all of you and I hope that maybe some of my experiences might be able to help others as well. I'm here. I hope you're all holding up okay considering the Holidays... This time of year can either be 'good' or 'not so good'...
God Bless & thanks for being here!
Kathy K.
I've thought about you and was hoping things were ok, Sorry to hear about all that mess.
Consider it all a valiant effort to improve things, and move on.
So. time to figuire out how to get the place more tolerable. Sounds like there's a good chance now that S-dad has shown some decency. Mom is gonna have to accept your help whether she wants to or not, IF you want to give it, and You seem to be the only one in the whole bunch with a head on your shoulders and a heart in your chest.
Stay Strong. Be as minipulative as you have to be to create some kind of livable peace in the house.
Remember that we are here, every frikking day, so vent, cry laugh or tell us off as you need to.
Please contact your local Area Office on Aging. If you can't find the number in the phonebook, call your local Welfare Department, or any nursing home in your county. They will have the number. A social worker can evaluate the home situation and your mom and S-dad's ability to handle their activities of daily living. Let the agency know that you are no longer able to do housekeeping, laundry, personal care. They have contracts with different agencies. At least one of these agencies would have a male caregiver who your S-dad could not make advances to. I would think the Agency could ORDER caregivers to come in. And if the parents refuse, I think there is something they can do. My relative receives services from them.. She is almost 93 and lives alone. I help when I can, but I am not caregiver material, and told them that I don't cook, and I won't do hands on care. Since she can't live on her own without help, she gets three hours per day help, every day, including holidays. The one caregiver gets her breakfast, Mobile Meals brings lunch and I get her supper. They can also ORDER Mobile Meals if you are unable to provide meals for them.
You can also contact your local Welfare Department and speak to someone in Adult Protection. They can inspect the home situation and, if necessary, there are things they can do. Please do not feel that you need their permission to do these things. You need to take care of yourself, and these are some things you can do to try to get some help in this manner.
I don't understand how the Welfare Department can count their income in determining eligibility. Are you paying rent to your parents? If you are paying so much towards your housing there, I would think they should not count their income. In some states, if someone on Social Security is not paying their own way, they are not eligible for full benefits. If you are not getting as much Social Security as you feel you should, ask if they are giving you any sort of reduction because you are not paying a sufficient amount toward rent and utilities. It sounds like you should be able to qualify for Medicaid, perhaps with a spenddown. You say you have Medicare, so you should be eligible for a Part D plan to get prescriptions. If you cannot afford the little premium they charge you, or the copay on the prescriptions, you can apply for "Help" with this through the Social Security Administration. Also, some states have special prescription programs for reduced cost of prescriptions. Also, prescription companies have programs for free prescription. There are income guidelines, and they probably take into account housing costs. Then there are the $4 prescriptions at Walmart, Walgreen's, Kroger's, or whatever store there is in your area.
I was given this site to look for help with medicines, http://www.needymeds.org
I agree with LME, someday you need to stand up for yourself, you have a GREAT start, and you need to keep it going, we are ALL hear for you. Hope so of her ideas and this web site can help you.
Blessings,
Bridget
God Bless,
Kathy K.
The problem with a lot of the caregivers here are they dont take the bull by the horns and tell the patient it will be my way or the highway. They don't have as much choice as they think they have. Just walk out on them for a couple of days and see how they will change their attitude. I am grateful for every bit of help we get from our daughter who has two small children at home. Everything doesn't have to be done every day. We have made do when we were well and should be able to do that now too. Be glad of what you have folks before you lose it.
Don't wait too long for hospice. It is not giving up but a way of getting more help. You don't have to go into a facility, they provide care in the home. It is paid by Medicare or private insurance.
Of yourself. Make yourself a priority and get some help. The doctor or SW can help. You are not alone. Thinking of you.