Saying no is terribly hard. Most of us go into caregiving wanting to help but we haven't got a clue how long it can all go on. Eventually, many of us feel we are the go-to person for everything and everybody. Self-care then means backing off at least a little and that is really a tough thing to do. Take care, freqflyer. You are so much help to others on this forum. We're behind you.
Carol

One tough decision I had to learn to make was to say "no, I can't do that", and to let the guilt just bounce off me.... it wasn't easy. Wish I would have learned that 7 years ago when my parents first started needing help. I now feel like I am on a tight-rope with no net to catch me.

I just never pictured my parents being elderly. I had nothing to base a comparison as I never saw my grandparents or aunts/uncle age due to long distance. Now it has happened, but there is no instruction book, it all trial and error.

goodenergy, it's not always easy to incorporate what we know intellectually into our behavior. It takes time. Keep working on it. Others pick up whether or not we respect ourselves and can use a lack of self-respect against us, even if they don't intend to. You're doing well recognizing your need to work on this aspect. Good luck!
Carol

I wish we could all have access to doctors, nurses, aides etc that are empathetic and can give us guidance. All too often I am reading threads where family and medical staff seem to be working at cross purposes... misunderstandings abound and distrust and bitterness result, especially if it includes hospice care and end of life.

I clicked on this article because it started with "respect yourself." I know that my inability to do so at times can kick in my "superhero rescue" mentality -- which is not good, as it just exhausts me and drives others a bit crazy! I really appreciated reading that I am entitled to respect myself for doing my best and continuing to learn. This reinforced what I know intellectually, but what can be lost in the pressure of making difficult choices and dealing with stress.

Thank you Carol,
I hope I'm doing the right thing. Whenever I have tried to ask my aunt about doctors or care, she wants it. I won't give up until she does.

I don't think that you're missing a thing. Hospice organizations are not all created equal ( sadly).

The doctor was right in that people not expected to live more than six months qualify. However, your aunt's reaction is not unusual. The older generation didn't understand the hospice mission very well and tend to think it's for the last days of life.

You are kind to care so much. Do what you are doing until she needs more care.

Take care of yourself, too
Carol

Thank you Carol. Because my Aunt is eating properly and still participating in activities, the memory care nurse sees no need to call hospice. Apparently they wait until the client loses the will to eat or has other significant decline before they call hospice. My Aunt still participates in the community activities and enjoys her company and walks and days out.
I will continue her appts. We had her pacemaker checked and her dental appt. to get her teeth cleaned is next week. I'm willing to care for her until she on some level decides to let go. We did call hospice at one point on the doctor's orders, but I don't understand how hospice works these days. My Aunt thinks when Hospice shows up she is dying right now.
She isn't able to understand differently, so I hesitate to scare her.
The hospice people introduced themselves and some are not real sensitive on dementia. The last "chaplin" from hospice had my Aunt in tears with her questions my Aunt couldn't answer. I would welcome hospice if my Aunt were near her time, but for now, I don't know how to introduce them without scaring my Aunt, or upsetting her. Why do you suggest hospice? What am I missing?

Twinflower1, to me comfort care means that you still do the little things. I'm not sure that the doctor meant to stop cleaning her teeth, etc. If he or she did, I find that unusual. But stopping any kind of care that would prolong life is different than providing pain relief and comfort.

Is your aunt under hospice care? If not, I'd call hospice right away. If you have more than one, I'd see if there is one that is non-profit. That's not a fool-proof guide but sometimes it does make a difference.

Hospice staff are experts on comfort care and they know what to stop and what to keep up. Certainly cleanliness is always a priority. Preventing bed sores, changing incontinence pads and other things is just part of comfort care.

Please keep us updated on how you and she are doing.
Carol

I liked this article. I was hoping to find something to guide me while I am caring for my Aunt. She is 97 now in memory care. She is enormously resilient and has no health problems other than short term memory loss and dementia. She is not able to initiate any activity, but responds heartily and enjoys anything that is suggested.
We take her out for walks and out to dinner and she eats heartily, and laughs if there is joking. She cracks jokes herself. Her wit is very present and she banters.
If left alone she is idle, and will sleep.
The doctor told me to stop her medical care when she recently went into memory care. I have learned that I'm unable to stop her care if she needs something. She's still using her teeth. Why make eating harder with pain and soreness and loose teeth which will happen if they aren't cleaned.
I just can't make decisions that will cause her pain because the doctor said to stop care. She is clearly in another world most of the time and doesn't seem to mind being there. I'm aware that she can't remember anything about her life, or even where she lives or people she used to know, even family.
At what point do you know when to stop even the little things? I can let go but I don't want to let go and cause her pain or suffering because of the ramifications of withdrawing care.One person commented on her relative feeling gleeful she was going home. Is that usual? If there are signs, what are they? My mother simply made a decision to let go and die and we supported her.
Am I doing the right thing? I can't just say she's old and we've stopped supporting her life. That doesn't seem respectful or right at all? Why would the doctor think it's the right thing to do? What guides other people in this decision?

Lucky1, you can't go on like this. You and your child both deserve more. Your parents need help that they won't allow you to provide.

I'd check first with Social Services and see what can be done. If you can't get help for them while you are still trying to cope with their issues, don't go over for awhile and call Adult Protective Services to check on them.

Not everyone can provide hands-on care for their parents. Your history with them and their extreme dysfunction all of your growing up years (foster homes) is sad. You are amazing to even try to help them. However, it doesn't sound as if you can really do what needs to be done.

For yourself, your child and your parents, it's time, in my opinion, for them to be turned over to the county and get their help from social services. Then, you can choose when to visit and how to resolve the relationship if you want to. Take care,
Carol

lucky1, you could start by asking their doctor to evaluate them, but I would tell him ahead of time what is going on. I hope you have medical and durable POA for both of them. Also, I think you could call social services and have a social worker to come over and evaluate the situation at home. It sounds to me like your parents need more help than you are able to give. Take care of yourself and your daughter as you take care of your parents and see that they are safe.

I an a Certified Nursing Assistant who, with my young daughter, moved to CA to help my parents. My father is on dialysis 3xweekly and has serious foot/walking problems, and my mother has mental/emotional issues. Mom has a defibrillator implant, and Pop has a pacemaker. I have been live-in caregiver since 6/26/14. I need to know who to contact to determine if the conditions my parents are/have been living in are signs of needing more help than I can offer, at this point. Neither have drivers license. My mother prefers to stay in bed and let me handle the "selected" cleaning, cooking, laundry, cat crap on the floor and clogged toilets. They both appear to be unaware of the odor in the house which is pretty bad. Im sure its coming from their room. They are working on becoming mormons and I take them to church on sunday. It is 3 hours long. My mother took some meat out of the freezer that had expired years ago, (I simply hadn't time yet to go through that stuff). As it defrosted on the counter, it gave off the decaying meat smell. I alerted them to this fact but they both denied smelling anything. My mother proceeded to cook it, which filled the house with yet another horrible stench. She makes as though I am just being mean to her. Both me and my daughter yet again retreated to the room I occasionally stayed in as a child, to escape the fumes. I took my kid out to eat elsewhere. When we returned, it was discovered that the meat had been thrown out after its removal from the oven.
My parents did not take care of me and my younger sister. We went through foster homes due to my parents neglect and mothers abuse. They even now hardly bathe, and my father clogs the one toilet regularly which is then left to me to deal with, and it hasnt been pretty or as simple to deal with as one might expect. They have a toilet in their room also but hasn't the flush capacity, and my mother leaves clutter on the floor there, which is what I know as a "fall hazard". She simply doesn't care 90% of the time, and my father enables her about 70% of the time.
So, I find myself in the position of determining the proper steps to take, if they need to be taken, but I need confirmation from a source that I can trust.
Suggestions?

Acceptance of what is and gratitude for what we've had are at the core. It's terribly difficult to let them go, but further suffering is worse. Take care, all of you. I've been through this several times and will go through it again.
Carol

There is only so much we can do as caregivers and these decisions are definitely hard. I am going up against one as well regarding whether further treatments should be taken or if it's time to just let things be. I consult God and am content with what His decision is. We just have to listen and accept.

Coolieslady, blessings to you and your family. I'm thrilled that you have had support with all that you've been through.

The fact that your mom feels giddy and like she wants to go home probably does mean that it's time. Hospice people see this often. You can let her go knowing that you have done your best and that she will still be with you - only she will be out of pain. Take care of yourself,
Carol

Mom's hospice nurse, chaplain, and social worker have applauded my sister and I with the job we are doing. Mom suffers from an extensive brain injury and has been combative at times, very lucid at times, in some other decade...etc. We are now at the crossroad of how much more do we try. Your article has shown me that we are on the right track. As of this morning she has described to my sister the house she is going to go live in. She said Mom was "giddy". With a huge smile she told me that "He is calling her home". All we can do now is keep her comfortable and let her go.

Carol, thank you again for your insight. I think your advice is solid. A short visit would be a good start. I have always been kind to her, even when refusing to do things for her. She is who she is, and as long as I don't allow it, we should be able to have a relationship without her taking over again. I'll just have to work on my husband as I ease back into contact with her! I appreciate your help!

This will be something that you and your husband will have to work out. From an outside view, I rarely like to see people cut family members out of their lives, but in many cases strict boundaries need to be set up.

Some positive feed back for her since she followed your advice may be a short visit if that isn't too unpleasant. However, do not allow her to take over your life again.

She's shown that she will accept help and your sister-in-law is suddenly "allowed" to help. Interesting. I'd say just keep her at arm's length.

It's natural to feel angry for awhile, but that can lead to resentment that only hurts you. I'd say give it a little time, then try to forgive her for what she is and protect yourself with very strong boundaries. You don't need to love her - or even like her. Just be kind without giving in.

I'm so glad that things are at least a little better!
Carol

Carol, thank you! I have stuck to my guns, and she has finally agreed to a home health aide. However, they are only going to come for 3 hours, once a week, but it's a start! I haven't had contact with her since I found out about this. She has allowed my sister-in-law (whom she previously accused of having keys to her house and stealing from her) to take her to the store and help her since I stopped.
I still feel somewhat angry, as it seems that I was just a means to an end, rather than a person who actually mattered to this Aunt. I am not sure how I am going to handle things, as I don't want to be taken advantage of anymore. My husband (who's Aunt this actually is), is very angry at her, and thinks we should have nothing more to do with her at all. I think of giving her a second chance, but don't really know if it's a good idea. I would appreciate your insight into this if possible. This woman is very self-centered, and I don't know if I want her back in my life now that she has done what I asked her to do.

OnTheEdge, I know it's hard to let go, but sometimes "tough love" is all you can do. Until she finds out for herself that she needs to hire some care, you will be stuck. You have tried so hard that guilt is unnecessary (yes, I know you'll still feel it - detaching takes lots of practice). Keep up with what you are doing. If she is really in trouble and calls, then help, but if it's daily chores, stick to your guns.

This is hard stuff, but sometimes necessary. Good luck,
Carol

Wonderful article and thank you! Knowing that my strong willed father's time with us was "borrowed", my plan was to make whatever time he had left, beautiful, happy and filled with love. He was so determined to drive, even when he no longer should. He was a man who insisted on "calling the shots" and when it became clear that he would be a danger to himself and others on the road, I found myself so stressed that I raised my voice in protest. Afterward I felt so guilty. I kept feeling like I failed. I was trying to provide a perfect, happy environment for him and be the perfect daughter. After looking back, I realize that I was a wonderful daughter(always).. Just not the perfect daughter that I strived to be. It's an unattainable goal. I did my very, very best and I have found peace with that.

Jinx4740: Thanks for your comments. She has since called and asked me to take her to the store, as if I never gave her an ultimatum in the first place. I let my machine get it, then called her back, and asked if she had obtained a home health aide yet. She said no, then I told her I was sorry, but I couldn't help her yet because she hadn't done what we had asked her to do. My husband seems to think this is the best way to handle it because otherwise she will just continue to expect me to give in and do everything for her again. I do feel guilty, but I agree that he might be right. She has no friends, clergy or others to help her understand. She is a very private, very untrusting person who has already told me she only wants one person involved in her care, and that's me. She treats me as if I owe her, and like I am hired help, not a concerned family member. I am leaving her to her own demise for now. I have sent her cards and letters, and she tears them up and ignores my words. I even cried once while talking to her about this on the phone and she made fun of me for crying. She has hurt my feelings so many times, and while I know much of her cruelty is to try to maintain some control over her life, I feel like she has taken over my brain! I think about her constantly, worrying if she is okay, but I really just need to find a way to let it go!
This helps, so thanks for your concern and your response! It was good advice!

On The Edge,

Many times, our elder, who is still "competent" but unwise, cannot be convinced. We have to step back and let the chips fall where they may. She will either do fine until she dies - unlikely but possible - or end up with a medical emergency that wakes her up to her need for help.

You have explained the risk she is taking. You have offered help and have been rejected. Is there a friend or professional - doctor, lawyer, clergy - who might persuade her?

Make a peace offering in a letter or card telling her that you hope she is doing well, and you would like to hear from her sometime. Include cookies or flowers if you want. Then step back and enjoy the calm before the storm!

My advice may not apply to your situation. If not, then why not post your own question with more details? There is a lot of stored wisdom available here.

i credit carols writings with changing my mind on the subject of " doing our best " . i learned in the army as a 17 yr old kid that sometimes my best was a cop out and that my best wasnt enough. like everything, its not all cut and dried. elder care is so emotionally taxing that remaining sane and finding solutions to the problems that arise probably is the best you can do. thanks carol. ( yea, were on first name basis now, steady cappy, you can do this . )

Madeaa, not sure what any of that means, except that my soul is out of patience and the good in this situation is nowhere to be found. I never signed up to be this woman's caregiver, she just expects me to do everything for her regardless of my own obligations to MY immediate family. So, I'm sorry, but what you wrote doesn't really help or apply to my situation. Thanks anyway!

I find caregiving to be a journey of my soul. The bad has been an evolution process for me, I always try my best to practice acceptance, looking for the seeds of opportunity in adversity, and practicing defenselessness, or not needing to be right, assert my opinion or convince you that I am right, wrong, good or bad.

Good information, but what do you do when caring for a Great Aunt, by marriage, who refuses to listen to reason? When you explain to her that she needs to obtain a home health aide and she then tells you that you're not her mother or father and are not even really related to her so you have no say in what she should do. I have given her an ultimatum, basically a "tough love" approach to obtain care or lose our help, and she has cut off all contact. Do I leave her to her own demise or call social services and have them step in? I feel lots of guilt about this because she is totally alone, but at the same time, I can no longer provide the kind of care she needs. She never had children, her husband passed away over 8 years ago, and she is approaching 92 years old, still living in her own home and refusing to face reality. How do you get through to this type of person?

Bronwyn - can you write the doctor a letter before your next appointment?

If he/she won't listen, what about a new doctor?

Sorry, none of this is easy.

that was one of the most concise and information wise articles ive read in years. damn, the woman can write.
hell yea, learn from your mistakes and move onward. thats common-sensical and dam rational.