Did anyone think of how long they would be caring for their loved one at home before they started?

Yes, and it didn't change my mind either. If not family, who? Its impossible to pay anyone to care the way you do.

Aleeta: I'm so sorry to hear about your daughter. What a terrible, tragic loss. I am so sorry.

My 87 yr. old f-i-l choked, passed out, flat-lined and was 'shocked' back to life 5 months ago. He already had significant disabilities (mild dementia, poor vision, weak left side, and no speech -- all due to a head injury accident 30 years ago.
He choked because muscles in his throat (as I understand it) were getting progressively weaker. He was put on a ventilator and received a stomach feeding tube. After a week in ICU and 5 days on the regular hospital wing, he was sent
home to us. He is too weak to do much more than squirm a bit. His days are spent calling out the only word he can more of less speak -- my husband's name (his only child). He's lived with us 5 years, since his wife died. With a strong heart beat and clear lungs, he is nowhere near death -- just in what seems to be a permanent state of confusion and vague discomfort. Hospice helps, but my husband is the 24/7 caregiver. I have a chronic neurological disease.
Our only child died suddenly 4 years ago, leaving behind a husband, young son and a career she loved. It is hard to have a positive outlook on life, living with grief and despair . Sometimes it feels like the future is slowly dripping away ala some Poe horror story. Friends & distractions are temporary diversions; but sorrow is the undercurrent that never leaves my heart. Sound like bad fiction, doesn't it?

TSo sorry to hear your plight. Just today i told my mom I would only be by if she needs help. Ifelt like i was being smothered and your story sounds similar. Its so hard to put up with all the pettiness and everything I did was wrong. She is very frugal, etc. I think it would be tolerable if the person wasnt your mother Ithink. Thank God i will be working parttime pretty soon. She is not happy about this but she won

I never dreamed in my worst nightmare that me and my sister would still be taking care of my father. He had to have a trach put in due to thyroid cancer, the tumor was 5 cm. Me and sis thought that after a few weeks he would be back to normal and our lives would be too. Boy, were we wrong!!!! We had no idea what we were in for. We were so blinded.... Next week will be 2 years we have been taking care of him. And i am so tired of it all. I can't believe we are starting on our third year. I just have to wonder how long this will drag out. And then when i think about that it scares the sh$# out of me. Love and hugs stormyyy

I thought it would be 6-1 yr and then of course mom would ease into some type of assisted living. Now 3 yrs ltr and going. Mom's still in the "I"M GOING TO GET BETTER" mindset (she has Stage 4 PD). Her therapists and drs play along and encourage this because I guess it's "positive thinking". It may be positive but it's not reality. IF I had known 3 yrs ago I would have worked my tush off encouraging mom to go into assisted living. (In her positive thinking mind she thinks that if it becomes too hard for me she'll go to AL but truth is she'd need NH -- not AL at this point and beyond. I love my mom and I'm glad I got to do right by her but I think it's time to pass the torch! Wish she did.

I too fell into care giving for my parents; it started slowly with my father’s heart problems and became full time for my mother after my father passed. I was working full time in the “corporate” world and they were on their own with a little home care to get them breakfast and dinner and us siblings took care of lunch. My parents were from the “old” school, my mother never had a checking about and she was never away from my father. My father provided very well for her and us six siblings.
My mother moved in with me the day my father suddenly passed. We had some of the best times together until she started to get chronic UTI’s. I left my “corporate” job after 20 years to be with my mother and care for her. The sad part is there was no direction given to me; no one told me where the local resources were and how to access them. I had no clue on the Area on Aging let alone the VA Aid and Attendant Benefit that would have helped me a lot. I made a lot of wrong turns but did the best I could with what I knew. I can say I was a real bitch at times trying to figure out how to manage day to day and go on some days. It was not easy and I did not take care of myself and that is the ONLY thing I regret, a care giver must take care of themselves..!!!

I placed my mother in a rehab center so I could get some respite time, not sure why since I was there from 8 am to 8 pm. I had the mindset that no one could take care of her like me and I was the best. Very funny thought now, knowing everyone could have done this I just spoiled her. LOL She was placed in her bed wrong and was killed in the facility two days before coming back home. I miss care giving for her daily and would do it again in a heartbeat. I would just change some things like taking care of myself and not ending in the hospital for 5 days with PTSD after three years of caring for her every need and then some stranger placing her in bed wrong and she dies..!! A cover up ensured; however it was quickly found by the coroner and then I was informed of what “really” happened. Needless to say it has been 18 months and I am still angry at the facility and most important is I did not get to say goodbye..!! It was taken out of my hands. Cherish every moment you have with your loved one.

I realize this is easy for me to say since I miss my mother and she was take in such a tragic way; however if a care giver take care of themselves first, it may be more enjoyable for them along the journey. Finding support groups, this website, and local community resources can help. I am now a Patient Advocate for seniors and families in my community. I help families find care and local resources to care for their loved one. No one helped me, so I will help others now. I feel the tragic way my mother passed was a sign from God that I am to help others so they do not go through what I have gone through. Paying it forward and securing myself a place next to my parents in heaven..!! Anyone need help in Indiana, send me a note.
Blessings,
Bridget

Nope sure didn't... But it never crossed my mind to even ask the question...jumped in with both feet and continue learning as I go along. Always knew I would take care of parents when the time came...soooo. Have learned to get time for myself to fresh body and soul..but still trying to figure a few days at a time.. Oh wel. We do what we do because we love our family and want them to be in the best place for them...we give up our lives and sometimes our selves but we keep on going.... The energizer bunny ya know!!

I keep reading and hearing people equate caring for their parents as pay back for them caring for us. It is not the same. They were raising me up to be an independent functioning adult. I am faced with handling 2 unreasonable parents who are suffering the consequences of living a life isolated in their younger years where their house has been their only source of involvement. They didn't take me to 3 doctors appts a week, fight to give me medicine, get headaches from yelling at me because I wouldn't wear a hearing aid - I could go on and on about the differences. I am not a part time employee. I am a daughter who wants to spend time with her parents watching a movie, talking about old time. I am not a taxi cab driver, a nurse, a personal grocery shopper, a mail man, a landscaper, a maid. Realize there is something really wrong with letting your parents kill you with taking care of their needs that should be outsourced. It is different than it was when my mother cared for her mother. She needed care for 6 months, my parents have no health diseases. They have stubborn personalities and will continue a slow deterioration over the next 7 years or more and they will make me deteriorate with them unless I set boundaries and not enable them to use me in the name of "care taking".

No I never dreamed I would be taking care of my mother this long. God forgive me but I am so tired of it. I'm having my own health problems. Since I am her full time care giver I have no income for insurance so I am up a creek. She has always been excuse the phrase a bit of a bitch and it is worse. I'm not even her favorite child. I really try hard to make sure she gets what she needs but her being uncooperative doesn't help.

Seventeen years!!! Oki my goodness. So glad that you don't have ill feelings towards him. That's got to make such a big difference. I think my situation would be easier to take if it was a parent that oi phase so much respect for.

I have been caring for my father for 17 years, since he was 84. He's 101 years old now. So the answer to your question is no! Never in my wildest dreams did I think this would be going on so long. It has affected my marriage, my kids, where we live, what we're able and not able to do, the list is endless. We seem to be floating along pretty well but I would certainly urge anyone considering this option to remember that this can be an open-ended project and you can never know what the future holds. One thing I try to remember is that if I had a child who needed so much of my care, I would not hesitate to do it and would do my best to keep my child out of an institutional setting for as long as possible. I've become my parent's parent now, so I'm doing the same for him as I'd do for my child. Unlike many of the people who've posted on this website, I am fortunate to have a parent whose infirmities are manageable at home; he doesn't require skilled nursing (until recently), his mind is sharp as a tack, although he's nearly blind and deaf and can't get around too well. If he were seriously ill, or had dementia, I surely would not be able to keep him at home. (I am amazed at the bravery of children who are trying to care for parents with Alzheimers or dementia.) Also, he was a very good parent and I have no resentment at all toward him, just love and respect and thanks for a happy secure childhood. He is still very good natured, and we both have a pretty good sense of humor (so does my husband, thank God). The past few years have been one long extremely slow decline. It seems never-ending, for us and for him too. Thank you for listening.

I walked into this blinded. I guess I had no time limit. I think in the beginning it was denial of the seriousness of it? Yes, I quite understood about dementia. I worked in home health for years, and dealt with elders. But soon enough I learned the hard way. I thought I could beg my siblings to help. When reality hit me hard, I knew I was in it for the long haul. I am a people pleaser so this experience has mentally overloaded me. But on the other hand I do see the positives. It took me two years to see the "bright side" I have learned that if I turn off the negatives and only focus on positive, I feel lighter, less stress. Which in turn makes me a better caregiver.
Many of times, I pity myself, I look at my mother and think, How selfish am I? There lays a 66yr old woman who has been robbed of her life. While most her age are retiring from there jobs and planning that ever needed vacation,enjoying their grandkids. My mom is confined to a bed, 100% dependent on me. She is a shell of a woman thats just "here", Her mind is off in a distant place which I hope is at peace. All I can do is comfort her physical body and let God comfort her emotional body. Cause in the end no matter what I do, its in God's hands and always have been.

Through all the craziness over the last few years, I now look back and see my personal growth. Its was a struggle to get here but it was well worth it. The "things" I gave up are just "things". Someday, when the season changes I will have things again. Familes are priceless, I hope that this experience has taught my children how important unconditional love is!! And sometimes we have to make sacrifices when it comes to family, regardless of issues. Let the past in the past, and be present in the present. God has a plan for all of us!!

However, I think it is not worse than writing something very meaningful then losing it in cyber space. Redundancy is common in my house, since hubby is hard of hearing. I said... Just kidding:)heehee

I apologize for the double post. When I post from my iPhone it is a nightmare. I am a glutton for punishment.

Ditto, what Lilli said. Sometimes It seems that I failed all the lessons throughout my life about boudaries, humility, priorities, etc. So Someone said, "Christina, dear child of My Heart, you are past mid point of your life on earth and you have not learned what you have read about in magazines, watched on Oprah, got
hammered in your pocketbook by therapists, heard from all the people who
helped make "The Secret". This is sad and pathetic, Christina. I will make you a



Caregiver for the person who caused you the most pain, frustration, and who was never there for you growing up. This will be your ultimate lesson. You must not complain, you must sacrifice many things until you learn to rebalance and juggle. It will give you time to reflect, and you will want to project; you will continue to
want and try to make sense of your Mother's bizarre lifelong behavior, but this
will not work. My, you are a slow learner, yet you seem to have endurance. You
tire and complain, but I have given you a sense of humor, albeit somewhat
obnoxious. Oh well. No one is perfect on the planet. I have surrounded you with
less than ideal siblings, not only in relation to caregiving, but intelligence, drive
and ability to do hard physical and emotional work. You must forgive them, for
they actually know what they do, but they won't change, and this Is another part
of your lesson. Oi Vey, I exclaim. He knows what I mean.
So, I figure we have time to figure it out, as these difficult parents seem to have a very strong life force. I am absolutely amazed at what they endure, especially if any of them read minds. I think they must be in on "The Lesson". Partnering with you know who, maybe? That is my take on it, Dear Friends:) hugs, Christina xo

Ditto, what Lilli said. Sometimes It seems that I failed all the lessons throughout my life about boudaries, humility, priorities, etc. So Someone said, "Christina, dear child of My Heart, you are past mid point of your life on earth and you have not learned what you have read about in magazines, watched on Oprah, got hammered in your pocketbook by therapists, heard from all the people who helped make "The Secret". This is sad and pathetic, Christina. I will make you a
Caregiver for the person who caused you the most pain, frustration, and who was never there for you growing up. This will be your ultimate lesson. You must not complain, you must sacrifice many thingsuntil you learn to rebalance and juggle. It will give you time to reflect, and you will want to project; you will continue to want and try to make sense of your Mother's bizarre lifelong behavior, but this will not work. My, you are a slow learner, yet you seem to have endurance. You tire and complain, but I have given you a sense of humor, albeit somewhat obnoxious. Oh well. No one is perfect on the planet. I have surrounded you with less than ideal siblings, not only in relation to caregiving, but intelligence, drive and ability to do hard physical and emotional work. You must forgive them, for they actually know what they do, but they won't change, and this USA other part of your lesson.

It is unrealistic, on so many levels, to promise a parent that they will not need the assistance of others and perhaps another living arrangement. So I wish families would stop makeing that promise to their loved ones because it spells disaster from the start.
I, too, started this journey 4 years ago, thinking I could do it all. The reality hit me within the first few months. It takes a village to care for an ailing elder. Times have changed. Extended family no longer lives in the same town, both husbands and wives work full time to make ends meet, and for some reason we are afraid to ask the younger members of the family to pitch in for fear they will become "scarred" by the experience. The result is usually one family member who steps up while the others step back, and that is not fair.
I say do this for as long as you can on your own. Then add paid help. Then consider a facility whose staff can do it better. Then you can go back to being the loving, devotd child who is still looking after his or her parent.
To turn yourself into the fall guy so that your sibs can live a life of freedom does not sound like a good plan to me. Everyone should be pitching in - and if that doesn't happen, then protect your health and future. Honoring a mother and father does not mean making brutal self-sacrifice and losing ones own marriage and family in the process.

Barb - It sound as if you were "eased" into it just like I was. I know and understand - you dream about the day when you will not have to be a caregiver anymore, then you feel guilty for having those thoughts because the only solution to the problem seems to be the death of the parent and it seems as if you are looking forward to that, but of course you are not. Catch-22, right? The only solution is for somebody to die! So, you feel boxed in and just about feel as if the top of your head is going to blow off. I do try and work in some hobbies especially in the morning. In the summer I also have garden duties which at least gets me out of the house for awhile, in the winter time I retreat to the basement and work on my projects - modelmaking, refinishing, repairing while listening to music or wathing a movie, and I work in a couple hours two days a week with a personal trainer (my one great self-indulgence) while mom takes a nap (she has Lifeline and hospice care too). It does not beat having friends or especially travelling, but it is something for myself, as is this site, which I appreciate being able to vent on from time to time.

I completely understand where you're coming from. I moved back home "temporarily" to help when my father was diagnosed with dementia. We finally got him into a good skilled nursing facility. I was planning on leaving when he passed, and then my mother's eyesight suddenly went due to macular degeneration. Then she fell. And fell again. And now it's 10 years later.

I'm only 47, and yet I feel about 80 myself. I have lost contact with all my friends, and I have no time for hobbies or things for myself. I love my mom dearly, but honestly I dream about the day when I won't have to be a care giver anymore. Then I feel guilty for thinking that way. I know it's only human, so I try to cut myself some slack. I realize this truly is temporary, I just didn't realize temporary could feel so permanent.

I brought my Mom to my home 6 years ago, thinking she only had a few years to go. Well we don't know do we. I think I did well the first 3 years or so. But this last year has been rough. I now realize the toll its has taken on me and my marriage. So now I am doing something about it because complaining doesn't fix it. Siblings try but they can't fix it either, they can help but I am the one to make plans. I now have an agency that supplies me with reliable sitters one time a week. Mom pays for this. And I just found a daycare program in a local assisted living facility and within the next few weeks I plan starting out with a few hours maybe one to two days a week, then if all goes well maybe two or three full days. The fee for this is by the hour and very reasonable. I am very blessed at this point that Mom can afford this and it will keep her in my home for a little longer. I think its all about having a plan, not to far into the future but maybe just a few months at a time. I will like to say "God Bless the Caregivers" You are all so special"

No I didn't. I figured 6 months or so. Its been a little over a year,and was wondering what I had gotten myself into after the first month. When I read the average is 7 my heart sinks. And no, there is no way out of my situation at least. All I can do is pray for mercy. Strength. Mine is elder is 86 post stroke. Typical diabetes, hypertension. Probably a getting dementia,although this would be very early as I notice it, but people who come visit don't. I hope things get better for you.and for DT. Its the same kinda, I promised to take care of her so she didn't have to go to a nursing home. The living arrangments are such that things can't be changed because of decisions made on the thinking of this is only temporary. Not knowing how permanant temporary can be somtimes.

I agree with so much of what everyone is saying. Each situation is unique and you have to create your boundaries based on your needs. My father's situation was an unexpected serious illness which is very different from the day-to-day care my mother needs. I am already arranging for respite care for myself, people who can sit with Mom for short periods of time, and someone who can allow me to have an
out-of-town vacation. I am doing this because of what I have read on this forum. My mother drives my husband crazy, so I hope I can spare him the majority of her care unless she is truly ill like my father became. He does not have parents who are still living. I just think we have to select what might work for us as we read suggestions from each other.

BTW, are there nursing/retirement 'homes' that offer adult day-care in your area where your mother might spend a day or two each week? Maybe private home-care places, which you can check out before using. Check with local hospice organizations for information or suggestions. Nursing homes can be satisfactory permanent living arrangements, especially if you live nearby and stay involved with your mother's care plan. Since your sister is reluctant to move your mother to a facility, split the lodging & care duties with her; if her house is unsuitable, arrange for her to regularly take your mother on simple outings for a few hours a week. Sounds like your mother is experiencing dementia, too -- which is not uncommon among elderly smokers, who are on oxygen because they are not getting enough oxygen to the brain.

Smoking around oxygen can be an explosive situation, as you more than likely know! My 80 year-old mother, a smoker with COPD and on oxygen, lived (quite miserably) for 5 years, going downhill steadily, but only once burning a hole in her oxygen tube, thankfully. If your mom lives with you, advise family & friends not to bring cigarettes to her -- and screen every visitor for contraband cigarettes. So what if you are labeled intrusive, insensitive and an ogre, she's complicating her health problems, compromising your sanity, and putting the house at risk of fire. That said, cigarettes are so addictive, at least to some people, that your mother will be miserable, belligerent, threatening, inventive and sneaky if you do insist she quit smoking while living with you. Just hold steady, don't argue, weather the storm. Nothing, from cold turkey to patches, gum and Chantix, helped wean my mother off nicotine. Your mother may be the same. But you are responsible for keeping the property safe for everyone.

I was kind of "eased" into it, for want of a better word, but mom has not made it any easier. I really had to make a change of location for other reasons, including a more affordable place for my own retirement than where I was, when I arrived mom was still pretty mobile, but that did not mean that I had a lot of time to myself. While my dad was alive she had a focus for her neediness, when he died and I moved back here to "look after" her, she had to change focus - me. I was suddenly 12 years old again, and please don't get all warm and fuzzy about me always being her "baby", it is demeaning and insulting (I was 58 when I arrived and used to living on my own, I am now 68 with a few medical problems of my own), because you do not know the extent she carried her neediness, which was to the extream. As time went on she slid farther downhill, though I always wonder how long she could have been mobile if it had not been for me to order around, I think she would have been a lot longer. Anyway, she has been fairly incapacitated for about 2 years now, she will not take physical therapy to give her limbs any strength, content to let me do it with criticism. In short, I was last able to get away for a vacation in '03, and not much hope of ever getting away again. No, there is no one else to help. She keeps having bad times in which she has to stay in hospital for a few days, but she keeps on keepin' on - she is 94 now. To answer the question, I did not know how long it was going to be for, I bought the house from her and promised her a place to live for her lifetime, so that ws OK, but not only did I not consider the time but the conditions under which I was to serve my time.

Most caregivers believe their commitment will be around a year, while in reality it averages about 7 years. So the answer is yes, it is alot longer than many thought. While I love the the ideals of RLP, the reality for most is very different. 90 years ago families were very large living in small communities. Sharing the responsibilities of caregiving can energize and be the focus of a family, being isolated and alone has the extreme opposite affect. It sounds like you need some help.

This is Rebecca again. If your mother is driving you crazy, confront your doctor with what the experience is doing to you. It is amazing how fast they can find room at a nursing home if pushed a little. Anyway, my great-grandmother who was born in the 1880's, had to be placed in a nursing home because she was just plain MEAN. So, not every situation is the same and ask for help from doctors, nurses, case managers, and DFACS until you find what both of you need. Best Wishes!

Yes, my father's case manager made certain I understood how long it could be. My mother is still mobile and relatively independent. I am considering the fact that she and I will be together for the "long haul" and have started finding people to provide respite care and a kindly listening ear. The issue that try to remember is that taking care of elders was just a part of family life until around 90 years ago. My grandmothers took care of their mothers. My mother and I share many common interests, and I hope that both of us can explore them. The long term care I give to my mother may be the very care I need in 30 years. I am going to try to turn this into something good.

I never expected it would continue as long. I am not handling it as well because it is so hard watching mom do her thing because it’s her life not mine.
Her memory is short! I do know that what she says it at the moment but she gets so mad at me because I say she should be back on the oxygen after two cigarettes. Some days she realizes it others she fights it. I have told her that I will have to stop buying her cigarettes.
I know I am the person buying them but she said she will have someone else get them for her.
I am going insane inside because I feel that I am the person that has allowed her to smoke to this point. She said she doesn’t want her children taking her cig. But that it will be ok when she goes into a nursing home. That is a line of bull shit.
I don’t know what her own choice is or is she playing games with me when she says she doesn’t remember.
I am not good for this job because I cannot turn my head and ignore what she is doing any longer.
I have to put an end to it or I will be going with her into a nursing home only the mental ward for me.
It’s either get someone in there or get her into nursing care. I cannot keep putting myself through this hell! There are no nursing home that have room for her right now and sis is reluctant about makeing that move anyway.