How do I get my family to understand I have no life and being a caregiver is killing me?

Jeannegibbs, I don't think that is a good analogy. I think your LO, if he/she is of sound mind, should not refuse treatment if they rely on you for help with their daily living. My father made many poor choices regarding his treatment. For example, for a month he complained of having difficultly urinating, yet refused to see a doctor. The situation became critical. He was rushed to the ER. His doctor said he could have died because his blood chemistry was so messed up. So he ends up needing a permanent catheter. Add to my responsibilities: cleaning his drainage bags and flushing his catheter. Also made many fire drill trips to the ER because of a painful blockage or because the visiting nurse botched up inserting a new catheter. This is the most extreme example but there were others as well.

new question

My mom is in a nursing home. She is on oxygen 24 hours a day. She has 3rd stage kidney disease, heart disease, diabetes, copd, and (sever depression), that she will not admit she has. She was recently diagnosed with asperation. She has lost 8 pounds in the last month.She can hardly eat anything. She is sedendary and refuses any exercise, and I mean any. Maybe her speech theropy should count, she will do this or a least for the last few days. She is very hard to deal with, tells everyone off and refuses to try, except for the speech theropy. She seems to not want to live. I need advice on how to help her. She hates the nursing home, but has hated every home she has been in, this is her 4th nursing home since last June. She went home for about 6 months, but has been in and out of the hospital and in nursing homes since the middle of January of this year. She thinks she knows everything, she use to be an elderly sitter when she was younger. I have worked hard to get her meds for depression, and anxiety. She refuses to take them, and at times refuses to take any of her meds. She has called me and my brothers to come to be with her because she is dying, and she says today, or tonite or whatever. She crys wolf so much you just don't know, what to do. Any suggestions or reference materials will be appreciated, so much. Thanks bunches, Andra

Andra: You should post this question. Go up to the Caregiver Forum, click and the menu will come down. You will see "Ask a Question" Everyone will have a better chance to see it and answer it.

My grandparents had 7 children and 13 grandchildren and it fell on my mother and me out of the 20 to take care of them when they were older and sick. I was furious when my grandfather insisted on leaving things equally to all of his kids with nothing for the grandkids and told him so. At one point, my mother and I left him to tend to his own pancreatic cancer and I told him that if he wants to shell out things to the others who never even showed up to help in any way while we cared for the two of them (my grandmother had died by then) and spent our own money on them, then call on them and let them come.

This is making you sick. You have got to have help and the only time your siblings are going to show up is when they think there is money that is going to be distributed. Contact your local Department of Human Services and get a social worker involved. There are services available in most communities and they will be able to put you in touch with them. If your dad is on Medicare, there is some home help available. We had a nursing aide come in for my grandmother for free 5 days a week and a registered nurse once a week.

Call the social worker for adults and aging. You need help here, and to get home help set up.

Andra, your mother sounds to be seriously ill with a multitude of health problems. Any way she could qualify for hospice care while in the nursing home? Ask the nurse manager or social worker. This could help you as they give extra attention to the patient that they don't normally get.

I understand about the "crying wolf" - my mother has done this the past 30 years or so. Unfortunately, with this kind of behavior, you will never know when something is real or not; try not to worry about this if you can, as it is out of control. As is the refusal of medications. My mother does this all the time. She is in a nursing home for multiple health reasons and mental health issues.

What I have learned is we cannot control their behaviour or what they say. Take it one day at a time. My mother is also narcississtic. Our desire to make them happy is pointless. If they refuse medications, they will suffer the consequences. I, like you, tried for years to get my mother to take the required medications, but she would not. And often she refuses in the nursing home.

Take a step back, give yourself a break. I'm dealing with many of the same issues you are dealing with. I don't think there is any more you can do other than be there and just listen to her. They are very unhappy and sick people and no matter how we try, they won't change. Blessings to you and take care.

I have been crying for some help forever......now it does not matter anymore. I am beyond help. good luck

That is so wrong of the so called siblings. This post came at the right time because mom wants me and my husband to keep the her house but my sister, who lives right next door and doesn't lift a hand to do a damn thing, is the executor of her will. I'm planning on having it amended as per mom's request. I feel for you and understand what you are going through. I have no suggestions because your siblings are not going to help regardless of anything. These fools live their lives as if they were hatched from an egg...idiots. At least you'll get the house and everything else. They don't deserve any of your feelings, knowledge of any changes...ZERO!

To be completely honest. Those who don't already sympathise with you probably never will. This is something that most people will never understand until they go through it themselves. Don't expect much from those who don't deal with this day in and day out. They just don't get it and or they are too self absorbed with their issues to really imagine themselves in yours. The real question should be where can I go for help and support. You need to seek help outside of your family if your family is unresponsive to your reaching out in the past. Do not go at this alone or it can take you down a downward spiral.

Let go of your wishes for sib support. Grieve it or whatever but it will never happen, don't waste your time trying to get them to care about dad or you.

Take others advice here and have a sit down with dad and go over finances. Have a plan on what is reasonable and have him contribute expenses then tell him because of your health he will need to spend money on in home care a few hrs a wk or whatever you need. Give him ultimatum and tell him if he won't comply then he will have to go to asst living. Then act on it and immediately hire care and have him sign the contract for care.

Also check with local senior services center, will he go there each day for their activities, lunch? This would give you break. Some places have adult daycare that might be economical option for you at least a few days a week.

Take care of your health and well being first and foremost, let go of the anger with sibs ... That ship has sailed, create a new life for you as much as possible and join a support group if you can for caregivers. They will be a tremendous resource for you as we'll as helping you sort thru feelings.

I finished a two week vacation a week ago and all I can think of is "Oh my God, how can I make it through another year before I have time off again!" I have felt bad before but this is the worst it has ever been. I too have siblings and one lives with us but as far as sharing the care giving, that just isn't happening. I too am the one not working but disabled and everything has fallen on me.

I have POA but unlike you I will not inherit everything that is left when my mother passes away, it will still be divided between the 3 of us if anything still exists. I am really having to think at this point about what I am going to do, I have been doing this for 4 relatives for over 10 years and I am at my wits end. I have no life but I want to change that, I have to change it.

I am considering paying someone to come and stay every once in a while and I think I need to have a sit down with my sisters and lay it out that I cannot and will not continue to do this. I too have epilepsy and panic and anxiety as well as other ailments but I cannot let this take my life away from me, I have a child who needs their mother and as much as I love my mother, my child will not lose me in the process.

Well, recently I did start taking time for myself. Unfortunately, things took a turn for the worse for my father and I. The landlord changed agents, putting his son in charge. After getting a good zap on the dryer outlet when I was installing a new dryer due to an uncovered outlet, I sent a request for repairs, in the list I put in the other repairs they promised. He immediately called me yelling at me. I gave him 30 days and then called the city, who did a full inspection, and the house failed, and the city inspector sent him a list of 30 repairs needed, oddly enough, the same day he showed up with a termination of lease.

We had to figure out a way to move and to a place we could afford. Unfortunately the house is a slum as the new landlord has not finished the add on they did so it is falling apart.

Now my fathers health took a turn for the worse, when we were pushed out of the other house in retaliation, he had a heart attack, he developed diabetic wounds on his foot recently and may be losing his foot.

I have given up on my siblings, and my father has professionals come every day to dress his wounds. I have his DPOA completed, but not his revocable trust.

As far as the Irrevocable trust, it terminates at the time that my father and his siblings are all deceased.

My father has a lot of costs due to meds not covered by medicare and a lot of doctors appointments, recently he has had to pay most of the bills too though I do all I can. I may be moving out, and he will also find a different place, but will be sure it will be very close to a lady he is very good friends with, or near me.

Please don't blame yourself. Your siblings know darn well that if they were helping out, that they would receive part of the inheritance . It is one thing if a sibling lives in another state and/or has an extremely demanding job, and literally cannot help out much, but it sounds as if your siblings do indeed have the time. Everyone has time to help out for a couple of hours every so often. In addition, I think some siblings use their children as an excuse not to help out. They unjustly feel that since they have raised children that they are off the hook when it comes to caregiving for their elderly parents. I understand how you feel, as my sister will literally not help out at all, and several times I have asked her if she would watch our mother for a couple of hours while I went to the local mall, but "she doesn't have the time," yet she was in FL for a week this past February. There are no compromises with her. I have tried to manage the resentment I have about my sister's arrogant attitude, but I have come up at a loss. I do want to say that you do deserve all of the inheritance, as your sisters know if they stepped up to the plate and offered to help, they would get compensated for it. They could have changed the situation and helped out, but they chose not to, so to heck with them.

hI s10sleeper, I was just checking your profile to see the latest updates. Thanks for letting us know. Any possibility of trying to also apply for Medicaid? I understand from my reading around this thread that a person can have BOTH Medicare and Medicaid. If you can get Medicaid, you can put him in a nursing home or a memory care unit. Please call around - starting first with your local Senior Citizen gov't department. We have one here on island in the middle of the Pacific. I'm hoping that you would have one. Ask if there's any programs to help you. Truly with your "disability" and father's "old age", you both should be able to qualify for the federal housing program. Please be Proactive. Talk to your doctor for recommendations. They will know something. I'm so worried about you. {{HUGS}} Book

wow! i agree with all the above answers. you need to find a good, reliable elder law attorney. you should become the poa and reimburse yourself for all of the money that you have spent out of your own pocket towards the care of your dad. your dad should also pay for the attorney. and he should be paying rent and putting money towards food, etc. there are all sorts of ways the elder law atty can help you protect your dad's assets. some things need to be set up x number of years in advance. don't know how much longer your dad has but the atty can advise. their knowledge is priceless! keep good records too. also - you really need to get him settled in somewhere else and visit from afar, like jeannie said. you are killing yourself. keep looking for help until you find it. and keep posting here. there are alot of knowledgeable and compassionate people here. God Bless you!

I am in a very similar position. I care for a 90yr old uncle who is ...well...abusive...at best begnin-ly neglectful...same can be said for my family. It has all been a guilt trip 4 me. He took me in (not w/o pressure) when I was in need. But he is an absolute downer. He is dependent on me now...and NEVER can be thankful...yet reminds me of my bad times. Huh?
I have enlisted visiting help (aides, visiting MDs/nurses). Handle his meds. I cook and clean 4 him. FOR NO PAY. He cannot afford it. All of his benefits go towards HIS care. I too am at the end of my rope. My health (physical, mental and spiritual) are bad. HE IS A FULL TIME JOB!!!!!!!!!!!!!!!!!!!!!!!!. Yet he and my family say...find one. Ummm...huh?

Dear Derpina,

I am very sorry to hear of your struggles. I know you have done a lot and you've now reached a critical point. Please consider talking to a social worker, family therapist or counsellor. Is it possible to move your uncle to an assisted living facility or nursing home?

I hope you can get some sort of respite. It is a lot for one person to be responsible for caring for an elderly person. Your uncle might have some dementia and maybe that is why he said these hurtful things.

I hope you can get more help and find a better balance. Thinking of you. Sending you hugs.