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Yeah. I know. Especially when I can't help fantasizing about deactivating my father-in-law's pacemaker. By the way, if you know how to do that, please do not tell me.
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Caregiving is a very difficult job. So often our best efforts don't produce the results we wanted. Often we don't know what to do or how to do it for the person we love. Sometimes we get irritable and snap at our loved one and then regret it and feel guilty. There are tons of opportunities to feel frustrated and to be unhappy with ourselves.

Get a good night's rest, and start over in the morning. Do your best. Get help when you need it.

A caregivers' support group can be a great source of support and encouragement.
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Care giving is not an easy task. You try your best and never feel frustrated.
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You need to go to another room, or outdoors and focus on anything but the problem that is frustrating you. Do not go back until you've calmed down. I have done that and it helps. Sometimes I blow it first. It's ok to be frustrated, it's just how you handle it that counts. Someone once told me, "this too shall pass away". Things do get better, and the problem won't last long. Hang in there!
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Actually, with dementia is doesn't get better. And it will pass away when my husband does. I don't forward to that. I imagine it is similar with other chronic conditions.

I am not trying to be negative here. Just realistic. It is not comforting to here, "there, there, things will get better," when the reality is that things will get worse. What can get better is our coping skills, our self-acceptance, and our reslience. The specific incidents that cause us frustration may be over quickly. But they also may recurr over and over. Getting away into another room or outdoors is good, practical advice. When we are calmer we can generally handle things better. But the things themselves might not get better, and that, I think, is at the heart of our frustrations.
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I agree with the above. I have been caring for my disabled husband for over 30 years now and it is tiring, wearying and all of the above. I find strength by getting help and support. I find strength in faith. I also find strength in respite. There is a cabin I go to for 48 hours. No phones. (Although I can be reached in an emergency.) No computer. No TV. Just nature, a rocking chair, a comfortable bed and trails to meander. I usually sleep for the first 24 hours and cry for several more hours until I am all cried out. Somehow it helps. I only can get away twice a year, but it is better than nothing. Short breaks include going swimming twice a week and to a movie. For me it is being somewhere that no one can interrupt or demand anything from me at all. A mix of being alone and silent and being with good friends who love me and understand without being pitying. The grief doesn't go away. It is just something you have to get strength to get through. I pray you find the strength you need.
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Oh & I forgot to say, be gentle with yourself. You are human. Many people will try to see you as a saint which can be a burden in itself. I repeat, you are entitled to be human, and humans get tired!
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When I feel I can't handle the present situation of caregiving another minute, I hop on my bike and take a 15 minute ride around the neighborhood, looking at flowers, letting the wind blow through my hair, and looking at nature. I pray a lot while I ride and ask the Lord to give me strength. I sometimes do this 3 times a day. It is my solace. I am very often frustrated and feel "trapped" with this responsibility; ready to get on with my life yet everything is on "hold". Try to take one day at a time and draw strength from God.
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I agree with this advice but be would like to highlight respite care. There are sometimes groups in your community that provide free respite care but even if you have to pay for it, it can save your sanity. Especially if you set it up on a regularly scheduled time. Just knowing those couple of days are coming up can provide you with the extra strength you need to go on. Caring for a loved one with dementia is especially challenging as they are, yet are not the person you have loved and supported all these years. If you are not in a position to be in hospice, assisted living communities often can take in your loved one for a respite program or there are home care companies who specialize in care for, dementia patients. Take care of yourself and please feel free to contact me if you need to problem solve one on one.
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Part of our guilt comes from feeling that somehow we are 'not doing enough' no matter how much we do. We almost feel like we ought to sacrifice ourselves willingly or we compare ourselves to people who have much worse positions (in our eyes) to put up with. It sometimes helps me to remind myself that my parents did not do even a fraction of what I do for their own parents and yet they expect more and more from me, but I know that their seeming 'selfishness' is because they are now unable to connect with my world and don't see the difficulties I have. Once I have rationalised things like this it does help a bit and makes me realise that I am not the bad person that I think I am just because I don't really want to be in the position I am.

Try not to judge yourself. Good luck.
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Thanks for the info on respite care. My mom is pretty "crisp" and does have a fairly good memory. She has some issues with her short term memory. I think I would feel very uncomfortable asking her to go to an assisted living facility so I could get away. I have to think about that. I know it would hurt her feelings and enforce her thinking that she is a "burden" to me. I have thought about hiring someone to come to my home but it would also be difficult to have a stranger live in my house for 3 days. It is a dilemma for sure! Thanks for sharing.
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I guess I knew all of the suggestions that everyone has made...but... what if you don't have a relief person and the stress is so bad you have nowhere to turn. I guess like a mom and a baby... you make sure the baby is in a safe place and you go into the other room and count to 10...or a billion... and start all over again. I have lost the person I used to be... confident, reliable,empathetic and just plain human... I am numb in my emotions I can't think past whatever the next minute brings me... financially can't afford respite help and personal insurance does not cover that kind of help. I am just venting today... I am very frustrated and very tired and wish I had just a fraction of my life back!! Sorry for the negativity.
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as caregivers we do all we can for ower loved ones and have no life but do take time to comfert your self people undre stand. you are the only one that can do this cause you have the love and strenth if you feel like your not doing all you can think. they is only 24 hrs in day .

all the love to you ...
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Thats right...if nothing else walk away and be alone to recharge for a while. Do tough have a friend who could come over and "babysit" for just an hour every once in a while so you could get a break?
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See if your local senior citizens center has some programs/suggestions. Sometimes they know of qualified and reliable people who can give you a break. Also contact a reliable home health agency, they usually have a list of services theyy can provide you for reasonable costs. I feel for you, sometimes taking care of my husband's mother makes me want to drive myself into a bridge! Her and I are on completely different pages as far as personal cleanness such as bathing, etc. She thinks even though she wears Depends and frequent accidents that she only needs to shower once a week if then. She calls me the drill sgt! Keep looking for resources so you can get a break even if it is just every other day while someone else gives her a bath. Remember it is so very hard to take care of an adult who sometimes is a child and will just continue to slid further into childhood. Give yourself a break and have a friend or two that you can call any time and vent to even if it seems to be over something trivial. Remember that every one on here knows where you are coming from, we are all in the same boat. GOD bless you, you will be in my prayers
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I love my 95-yr old aunt dearly, owe her so much . . . yet there are days I fantasize about taking her out in the woods and letting her go. However, since I put up some posters around the house and started taking care of myself (yoga daily, gardening, zumba 2x aweek) things are much better. I also moved my aunt to an adult day care which engages her mind as opposed to the other one which just had her sit all day, doing nothing. When her mind is tired, she's in a much better frame of miind. The posters are: "Do you want to be right, or do you want peace?" - "Don't sweat the small stuff, and it's all small stuff" - and (my favorite) "Blessed are the flexible, for they shall not get bent out of shape." How they've affected me is, if she doesn't want to shower, end of story. We don't discuss it. She'll accept a sponge bath, good enough. She doesn't want to sleep all night? Fine. She's willing to stay in her room, so I'm grateful for that. I keep her supplied with magazines and she gets 5 candies at night. Good enough. I got one of those SAD lights and shine it on her up to 3 hrs a day - has practically eliminated sundowning. And finally, a great piece of advice from a therapist, "You can think whatever you want. You don't have to say it out loud." Roll with it, you are doing an impossibly difficult job. Why burden yourself with thinking harshly about yourself too?
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I love your comment..."You can think whatever you want. You don't have to say it out loud." This is very true and I have found that sometimes within 30 minutes they are on a different track and often in the complete opposite direction. Frustration? Everyday. Guilt? Yes...but I am trying to work through it because I know I do everything I can for my mom. Just the last few days after spending four nights and days with her, I have decided that I do have to set boundaries, call in help, and not jeopardize my job. I have also decided Asst. Living is the best place for her. She will have people 24/7 which is what she wants from me and I can't give it. So...we continue the journey...do our very best and still try to come out alive. As above...my faith in the Lord and the strength He gives me carries me through the nights and days of no sleep and complete mental, physical and emotional exhaustion. I love this site and knowing we are not alone, have similar issues, and feel the same emotions...and...it is OK! One thing I do...is play music! Music soothes the soul as does prayer. Love you all!
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I feel all alone my sister will say she will take mom to the store so I can get some rest but then doesn't do it I do everything and my brother is her p.o.a.and does nothing lm so tired .Where is my life i feel they are so selfish.And my husbund will want to do something I can't because she has a appt or needs to go to the storeor needs her meds .I have tried to get someone to sit with her a few hours a week but she won't let them.I really don't know what to I have no life with my husbund and he wants to go do things and I can't .
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This is to everyone, but especially to bbrady. I have been in your shoes ~ still am ~ and it truly is an awful place to be standing. We have cared for three of our parents over the past 10 years in our home. All have had dementia and physical problems. My mother-in-law passed away after 5 years of absolute nightmares from a controlling, nasty woman that only got worse as the dementia escalated. During that same time, my mother was slipping so I was at her house 2-3 days a week. Six months after my mother-in-law died, my mother had a major meltdown and she came to live with us until she passed away after a year and a half of constant, 24 hours a day watching and care. Now my father-in-law is here and he is rapidly slipping mentally and has urinary incontinence that is a major issue. So, I have had my years of frustrations, believe me! Each one presenting a different set of challenges, yet all similar.

When my mother lived with us, I was on 24 hour watch because she could not be left alone for a minute. The most I slept in any 24 hour period was 2-3 hours. I was exhausted and at my wits end before she died. You love that person with all your heart and soul, but your heart and world are ripped into a million pieces caring for this shell that was once the vibrant person you used to know. You want to give them the very best quality of life possible; while you watch your life going down the drain. It isn't fair and you find yourself wishing it would all just plain end. Then you feel the guilt for having those wishes. You don't really mean it, but you are just so sick and tired of what your life has become and you don't see any way out in the near future.

Putting our parents into nursing homes is something we just can’t bring ourselves to do. Yet, I keep asking myself when is it going to be our turn to have a life? We are in our 60’s and have spent our “Golden Years” caring for parents, who, at our age, were living the good life free to travel, play golf, winter down south, visit grandchildren and enjoying their retirement. We missed ours caring for them, yet I am not sure I could put them into a nursing home either. One time we went into one and my father-in-law sadly looked around at the people in wheelchairs with blank stares and said, “This is what happens to the throw away society.” So, we care for them in our home.

Is it worth it? I honestly don’t know. Selfishly, it is the hardest, worst experience I have ever been through, yet when the nurses and doctors kept telling me my heath was being ruined and I needed to put my mother in a home, my only response was. “I can’t do that to her”. I felt she was more important than whatever I had to endure for her. Most of all, I would have missed sharing some extremely precious and treasured moments had she not been with me. Like the occasional times she would pop back from her other world, take my hands in hers, hold them to her face and kiss them, telling me how much she loved me. Then she would slip away again. Those were moments I may not have had if she were anywhere else. I cherish moments like those today and they continue to bring tears of love, sadness, joy and missing such a precious person.

However, having said that, on this side of the equation, maybe I should have listened to the doctors and not had her with us. Would the activities of another environment been more stimulating for her, would our times together been more meaningful, would they have given her better care, would she have been happier and healthier over all? Either way, the guilt consumes you. I did my very best, but to this day feel guilty for not being able to do more. Did I let her down in some areas, could I have been better and more dedicated? And then there are the ugly thoughts that you never want to admit to allowing yourself to have. Like wishing it would all just end so you could have your life back. When I was away trying to catch two minutes rest, my mind would revert to the person she used to be and I would be overcome with guilt, I still am today. However, all the times I would have to run down two flights of stairs because she stirred (we had a monitor in her room so I knew if she was sleeping and just rolling over or if I had to run to help her) and I would be faced with the monumental challenges of who she had become I would understand my ugly feelings. I kept telling myself to remember and realize who the woman before me was, what she was like and that this is what my mother said all her life she didn’t want to be. Why were we kept in this state of digressing, limbo hell? There was no way up and out, only down and down would we continue to spiral into this God forsaken pit. I wanted it to all go away so we could be happy and normal again.

Whoever wants to become like we see so many parents today? We keep their bodies alive while the brain slowly dies. It is tragic for everyone involved. I have come to believe it may be better to allow people to die when they should and not do the heroics just to be left with a shell that drains everyone emotional, physically and financially. I brought my mother back from the brink of death three times. Sadly, through the following months and year, there was more than once I questioned the intelligence of those decisions, not only for myself, but more to the point, for her. In reality, what quality of life was she having? Sure there were times she knew what was going on, but two seconds later, those memories were long gone and forgotten.

I have to admit, like I said, I found myself wishing my mother’s time on this earth would be allowed to come to an end. She was the sweetest person on the face of the planet, yet I watched her mind torture her, telling her to do and feel things that were only imaginary, yet so real to her. There was no getting through what the brain was doing and at times it was ugly. I felt so sorry for her and knew it was only going to get worse and prayed God would take her from this awful state her mind had her trapped in. I hated myself for feeling this way and I still hate myself for having those thoughts today, but why do we all have to be put through the torture of watching our loved ones endure this kind of hell on earth? What quality of life do they have? NONE!!!

And look what it is doing to so many families. Their lives and health go right down the drain. My mother scrimped and saved a lifetime to be able to leave a small inheritance to her grandchildren. If I placed her in assisted living or a nursing home, they would soon take every penny. If I placed her on Medicaid, her finances would all be taken away by the government and what she worked and gave up for so many years to leave for her family would be gone and she wouldn’t want that either. I was between a rock and a hard place and felt it didn’t matter what I had to give up, I was going to honor my mother for the beautiful woman she was and do my very best to preserve that which she wanted to leave for her grandchildren. I did that, but at a tremendous cost to my life. And now we are also honoring my father-in-law so he doesn’t have to go “Where they throw away society”.

Was / is it worth it? Who truly knows? In an idealistic world, we would all live happy, productive lives enjoying our family and friends until out last second on this planet. But, in reality, that isn’t even close to what happens to so many of us. We each have to do what is best for our individual situation and live with the good and bad of each decision. I have loved each parent with every fiber of my being and did / am doing all I can to preserve their happiness. But, is it worth the feelings of wishing it would all end so each of us can finally find peace from these tortures? I guess it must be or I wouldn’t do it. Yet, there does come a point where the burden is way too heavy to bear any longer and it is time to save yourself, mentally, physically and however financially possible.

Bbrady, you didn’t say much about your situation. Can you apply for Medicaid and place your loved one in some sort of facility so you can have some peace, even for a short time? We have a program here called PACE, it is similarly financed as Medicare for nursing homes, with the exception the person is only at the facility during the day. You have to spend down until you lose all the savings, etc. and qualify for Medicaid. It isn’t a 24 hour a day, full-time placement, they go in every morning and come home to be with you through the evening and night. That might be an option for you so your days are free to work, sleep, play and call your soul your own. If you are married and worried about losing everything, I know some people have divorced to preserve some of the income. Don’t know legalities and I STRONGLY suggest seeing an estate planning attorney for guidance in ALL these matters as they are extremely complicated and change with the wind. Or if your loved one qualifies for Hospice, they are a tremendous source of help. When I finally consented to having Hospice for my mother, I found it the BEST decision of my life and sanity. Our Hospice gave us 16 glorious hours a week of respite care and it kept me from being committed. They also had a Hospice house I could utilize if I needed 24 hour care for some reason………..like the birth or our grandson which I would have missed without them.

Sorry I have rambled on so long, but I know exactly how you feel and how trapped you are on all sides. There isn’t a feeling I didn’t have and still face today. DON’T beat yourself up about it, you are completely justified in those feelings. You are losing so much, giving up so much, working so hard, for what? They are only going to slowly get worse and worse, taking you with them and, sadly, the only peace and rest for any of us is their death. Not knowing how much and how many years both of you going to have to suffer before that time comes is the worst part.

However, it will come. I just hope what you may have lost in health and finances aren’t beyond repair, because there isn’t a caregiver out there who hasn’t lost either large or small on both counts. However, most importantly and above all else, remember the day will come when you will yearn to give that person just one more hug, looking into their eyes, saying how much you love them to their beautiful face. If only I could give my mother just one more hug, see her smile and be able for us to tell one another “I love you.” ~ just one more time. As seemingly as impossible as it might be for you right now, try to remember this will all end someday and you won’t be able to feel those precious hugs of I love you ever again.

I know this probably didn’t help much because you are still in the middle of a horrible situation neither you nor your loved one asked for. I know, when I heard or still hear words like these from others, even though I know in my mind they are right, in my exhaustion, it’s hard to relate. When we are cleaning up after my father-in-law today and I watch many of my beautiful things being peed on and ruined, when we take him to the ER and doctors offices for the bazillionth time because he won’t do what he is supposed to do, it is still difficult and I still wonder why God is so cruel to all of us.

The one thing in my life I NEVER wanted to do was care for the elderly and so far that is what I have done for the past 10 years, and it isn’t over yet. So, bbrady, allow yourself to feel, even the crappy stuff, it is all part of the equation. Do what you can to get away for a few moments peace. And talk to an attorney, social worker, senior services and everyone in your community who might be able to lend a hand and offer support. It might not be a lot, but every second counts sometimes. It is then I have to remind myself to go get just one more hug.

I wish you the very best and send you tons of hugs and empathetic understanding.
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I have done some things in giving care to my husband that I'm not proud of, when I just reach the end of my rope and holler at him or storm off or something. Two realizations help :1) Tomorrow really is another day and will probably be better tho maybe just as challenging, and we just have to move on. 2) My husband probably won't remember what I did or, if he does, he thinks someone else did it! Instant out! No, seriously, sometimes you just have to let yourself feel bad and, as the others have said, get some respite. I think when we are super-frustrated it's a sign we need out of the caregiving situation even for a few hours. DAYCARE - find one near you and USE it. We're all in this together, and we're rooting for you!
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Many blessings... It is nice to hear when someone is saying exactly how I feel and what I am going through. My situation is only different in the age group of the person I am caring for. My daughter suffered a sudden cardiac death at the age of 23. She had a birth defect called "Wolf Parkinson and White" syndrome. An extra electrical current coming from her heart. It confuses the heart beat because the current pumps an extra beat. When the beat gets out of control the heart beats to fast to keep up,heart just stops then. That was in 2006. She was in a coma for the better part of 2 months with high fevers,infections,pneumonia and feeding and take tubes. It wasn't long before her husband abandoned her. I pretty much moved into the hospital and the rehab facility, neglecting my wonderful husband and younger daughter. We brought her home early in 2007. Out patient services of rehab, doctors, surgeries and brain injury. I have been so sure that God would have not kept bringing her through so much if she wasn't going to get better. After 6 years since the heart attack she is still not sitting up,rolling,walking or any of the things that life is all about. She will be 30 this year. Everything that you wrote is exactly how I feel. She is not on Medicare . Her x has to keep a cobra for her and it is really good ins. If we get any other kind of support the cobra will be cut off.
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I know what you are feeling... I had an absolutely terrible weekend... I am beside myself... and don't know what to do. My father passed away 2 years ago and it was apparent that my mother could not live on her own... both emotionally and physically. Cognitively she is absolutely fine but she has always been the vulnerable kind... never lived on her own, never dealt with finances. Moved from her parents house to live with my father and married for 55years plus. After several months of her living with me, we both determined it is working out fine... We had a terrible time selling her house due to the economy, drop in housing price, problems in the house due to its age, etc etc... finally sold it with closing one week ago... check barely in her account when I have my blood sucking gambling brother "after it'... setting up the manipulative words and basically poisoning her against me (btw, I have another brother and a sister who agree with me and none of us even talk to this brother... due to many trangressions, too numerous to type! Im so depressed because words were exchanged and now she is threatening to move out... (and i secretly want her to move out) but I know she will not succeed on her own and my housing situation is the best for her.... I have the space on the first level and it is in the same town as her friends/activities... I am totally crying inside...
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I forgot a couple things in my previous post that have helped me. First, call a friend when you have a bad day. I find that much better than a support group, because they'll listen to you and reassure you because they know you and love you. Also, we got help from a county grant program in problem-solving. I think part of the frustration as a caregiver is you're just reacting and never know what's going to be thrown at you next by the patient with health or behavior problems. I'm doing better now at analyzing what's causing a problem, coming up with a couple solutions and trying them out. For instance, my husband kept trying to get out of his recliner when I was busy, but he wouldn't put the footrest down all the way and would clamber over it and then not use his walker. Now I always have the cane handy for him, and if I'm really worried he'll hurt himself, just don't put the footrest up like when I'm in the shower. Plus I learned to add some pleasant events every day, like playing ball or doing a puzzle or just asking him to tell me stories from his past over lunch. Then you have good things to remember too, not just frustrations. Keep on trying, that's all we can do!
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Please if at all possible " TAKE A VACATION " I was feeling the same way after 3 mths of caregiving..I'm back and I feel so much better. Every now and then I have to remind myself not to allow that burn out feeling again.Praying you feel better..Cause I do understand
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Seems like we all are in the same boat without a paddle. Yes, it is so hard caring for a loved one. Why do they live so long. Because we take such great care for them. My mother sometimes looks at me like do something. It's so hard to talk to her everyday. I just don't have anything to say and all she talks about is the past over and over again. I listen but want to run away. I am able to still go out for an hour or so. She just sits in her stinky chair. I know it won't get any better, but I deal with it the best I think I can. Bless everyone. I love this website.
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I walk my dogs. We live across from a huge park with tons of trees and a beautiful lake. I hook up the dogs and walk at least a mile a day or more. It gives me a chance to center myself and blow off the stress. YES...I have to come back to the frustration of my 94 year old mother-in-law constantly repeating herself, asking the same question over and over (an obsession as to where the pets are at all times) even if I write it on her board, she forgets to look at the board. One time after a walk I was approaching the house and I could hear her crying and making a scene on the front porch. There was a man, a passer by, who stopped and was trying to calm her down. That was disturbing enough! But what am I supposed to do? Lock the doors from the inside? What about if there was a fire or emergency while I was gone? I swear...it's been three years and I feel ten years older than when I started. We've been "ready" to put her in a nursing home for some time...but when push comes to shove we don't have the heart to do it. In the mean time it's draining our emotional reserves and pretty much killed any spontaneity in our lives. We both would like to find her gone in the morning, but she doesn't go! She talks to herself in the bathroom. She says wants to go, wants to be with husband again...but she says, "Her angel isn't ready to take her yet!" ANY TIME IS FINE ANGEL! How sad...my husband says "this isn't my mom anymore, just some old lady that lives with us and drives us crazy." Life is so cold sometimes...it just is.
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Life is so cold, indeed, jackiebquick. All we can do is to try to warm our little corner of it.

I understand your husband's perspective, but this really is his mom, and she deserves the best care she can have at this point in her life. It sounds like that might now involve 24/7 supervision. It is unrealistic to expect to be able to provide this in your home without help. I suggest that you either bring in some in-home help (does she qualify for hospice?) or you place her where she can be cared for by trained professionals working in shifts. You say you don't have the heart to put her in a nursing home. Even if nursing home care is what she needs now? Would you say that you don't have the heart to see that she gets the best care? Placement is NOT THE SAME AS ABANDONMENT! Visiting her frequently would give you a chance to relate to her as a loving daughter-in-law and son, rather than as burned out 24-hour caregiver. I'm mostly thinking of what would be best for your MIL, but this arrangement would probably be best for you, too.

Until her angel is ready to take her, I hope you can come up with ways to see that she is not left alone, without giving up you necessary walks, and without aging another 10 years!
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