I am dealing with the guilt of needing to separate myself from the day to day emotional stress of overseeing 100% of everything for my mother who has had dementia for 9 years and has been in 5 facilities for the past 8 years. I am the power of attorney, the trustee on her trust, the executor of her will and the only child living close to her, about 10 minutes away. I also have a brother and sister but they are worthless. While I am not a perfectionist, I do see nuances of care that would not make any supervisor proud. The old adage of innocence is bliss is true, but when I visit mom and see the little things that they let slip through the cracks, when i am not there to advocate for mom in any way shape or form, then mistakes happen, neglect happens and injuries grow and fester. I literally could write a book, or open a consulting firm for all of the rules and regulations, and personalities I have learned. My deal here is that I am the only one putting any effort into managing my mother's affairs. She is in a private pay memory care unit of an assisted living facility which has a decent reputation. Not the best, but affordable and certainly not the worst. I have been with them for close to 4 years now and know all the staff intimately. Our conversation extend beyond mom's care, to salaries, care for other residents, shift changes, other resident's problems etc. They consider me part of the family they feel comfortable enough to talk with. For the past 8 years, I have moved my mother 5 times and across state lines. I have had to negotiate secondary insurance for her pay her bills, do her taxes, order and deliver incontinence supplies, lotions, gloves, changing pads etc. I negotiate her secondary insurance each year as well as any new drug plan. On top of all this she had developed a larger foot ulcer/ sking disease from constantly rubbing he foot on the bed, no matter how we position her. That large open gaping wound is now 10 cm x 6 cm and growing, It an best be described as a pressure ulcer. It gets re-bandaged every other day and we see the wound specialist every month. The wound will probably never heal as it is on the foot where blood flow is less. All this stress had made me depressed, get a full head of grew hair, became over weight, and lazy. I want my life back where I can enjoy it where I don't have to feel guilty for now seeing mom every other day. Or am on a waiting mission till she dies?

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I was a full time caregiver for my mom, first in her own home and then we moved together into a house of my own. As her health declined I gradually became her everything, I was able to personalize her care because I was both the manager and caregiver. When I reached a point where I was unable to care for her and placed her in a NH I was devastated, giving up that control and allowing her to become one of many instead of the only one was incredibly hard. There are plenty of things that happen there to get upset about, but I look around me at others there who are even worse off than my mom and I see that nobody has died of neglect. I have had to learn to let go and understand that there are some things that are just not ours to control, and to trust that the staff know how to do their jobs, not perfectly, but well enough. There is no cure for the frailties of old age. Mom seems content, and that has to be enough, is all that really matters.
Helpful Answer (30)

Hi all, first thank you for your responses. By the way, I am a man, not a woman, for those who made reference. Sorry I did not mention that. I am single, no children, by choice, and as far as religion goes, I will just say that that has not been a part of our lives and leave it at that. I do not visit her every day. And I go away for weeks at a time. Why? Because I had to quit my job and move across the country to oversee her affairs. So I have the time. I travel extensively. And I do let the facility which is a memory care unit of an assisted living facility do their job. It is just that I feel so responsible for her. It is hard for me to let go and let them make mistakes which will always look like they are not giving my mother the attention she deserves. Especially for what we are paying. That being said, I do not have her in a private facility with only a few residents so she can get better one on one care. We had her in one of those but it got way too expensive. So I am just trying to juggle guilt of not making sure she gets the best of the best with putting myself first so I can be there for her. This is such a terrible terrible disease. Her brother and sister in law had it also and both died within 6 weeks of each other last year. My mother is the last of the last. And it is not like cancer where you know there is going to be an end, sooner rather than later. With dementia she could live another 5 to 7 years with no quality of life whatsoever and yet we have to keep our loved ones alive as that is what we do in this country. It is cruel and a waste of money and resources. I love my mother dearly, but she never would have wanted this for herself, she said so, and yet what can we do? She has her good days and bad. But mostly she just sleeps in her wheelchair, or in bed and gets up for meals where she is fed on a pureed diet. It's just all so sad and being immersed in this for the past 8 years and no end in sight has really taken a toll on me. So I am thankful to be able to share all this.
Helpful Answer (25)

How old is your mom?
Don't move her anymore unless it's a work thing for you and when you travel it's a long period of time or whatever your circumstances are.
Why are you going there daily? Visit like hospital visiting hours every 2-3 days. Your mom is being taken care of there, you are pleased with the place, let the staff do their thing.
One can't control everything and you will drive yourself crazy trying to. It's hard to adjust your standards down especially in a health care setting, so if you are feeling that your mother is getting good attention and care at this facility, good for both of you. Let it be unless her condition warrants otherwise. 
Regarding the pressure ulcer, that is a pretty significant size. It will take months to heal. Try to encourage protein to form new tissue. I assume your mother's facility has RNs to change the dressing on that ulcer? That's important and wound care is a skill.
If I were you, get back to your life now, little by little try to draw away from the AL/NH (whichever it is). They will turn and reposition her and get her out of bed, dressed and fed. 
Don't let your entire life be wrapped up with your mother's care. Do the best you can to see her but begin to relinquish the "all hands on deck " scenario to the staff there.
Get your hair done, pedicure, etc - anything that puts a tiny bit if not more focus on you as you count too!
Helpful Answer (19)


You have turned your life into mom's life--caring for her and making her life "good" has taken from you your independence and joy. Maybe you need to step back and let the NH do their job--and find some things that YOU like to do.

I'd agree with the 2-3 visits per week. If things get worse with mom, they'll call. You are paying for all this care, let them do the caring. Some facilities welcome family "help" many are simply annoyed that family is stepping in and "criticizing" the care. You need to know which kind of facility she's in now.

And yes, your mom won't live forever. Nobody does. It doesn't sound like she is really even aware of your presence--and this isn't anyone's fault, its the way it is.

Stop beating yourself up over what you could or should be doing. Do what you can, be realistic, and get a life for you. You are pre-emptively mourning mom's passing, and that is normal, but it really just stretches out the grieving period and makes "living" for you very unpleasant and stressful.

How wonderful you love your mom so much. And how wonderful you have been to her! She must be very special to be so in the forefront of your daily life. BUT--she would want you to have a life.

As for the MIA siblings--pooh to them. You have had good memories with mom and they haven't. You're sure not alone in that.
Helpful Answer (17)

It sounds like your life is very full ,of helping your mother, and has all the pressures of anyone person's life that they should have to have. You sound like a very loving daughter, if your mother could tell you she would tell you how much she loves you. And there are no words left in any language to express the thank you for carding for her and looking out for her best interest. After saying that there are no easy answers to all your needs. Except for faith in God and Jesus Christ to be exact. America needs to re-think the care of the older generation and this generation is taking care of them, and what is going to happen to them? But there are places out there like support groups, your faith ,church, friends . I know you probably don't have time for friends literally. I could say I'm your mother in away, because I'm in her situation. And my daughter she's you because she's in your situation. I have my mind right now . But I am totally bedridden. I do live at home. But she fixes my breakfast fixes my lunch fixes my supper changes my bed. Go to the bank .talks with me. Gives me encouragement. I hope you find some help. And I hope my words of letting you know how much I appreciate all that you do ,my heart goes out to you thank you so much for what you do. Because I love my daughter so much and I don't want her to have to do this all for me. And I know she worries what will happen when she no longer can take care of me. So now is the time that we are going to talk about it! A lot because of what you just said, I realize this is the time for us to have conversation. so she does not end up feeling and working so hard like you do . Because your life is very important to, so you do have to look into group help. And support from family and friends and church. Thank you again for your kindness. your mother was there for you when you were born. It's loving that you're there for her now .
Helpful Answer (16)

I too cared for my dad at home until I could no longer do it by myself and I placed him in a decent nursing home. I waited for the relief but none came as I found out that when we place our loved ones in a NH the caregiving doesn't end, it just gets different. Having my dad in a NH became a full-time job for me. Like cwillie said, giving up that control was very difficult. With me my dad was the center of everything. Every little need or want he had was met by me. In the NH he was just one among many and I had to let go and accept this.

At first I visited my dad everyday, then every other day, then every couple of days. My brother would visit on the days I couldn't but there were days when neither of us visited our dad and that was OK.

I have experience with pressure ulcers and the one on your mom's foot may never heal completely if she continues to rub it against the bed. There are what I call "moon boots" she can wear. It's a huge, squishy boot that attaches with Velcro and it's worn on the foot at night to protect the skin. We're talking a huge boot and most people don't like to wear them but if the staff can get one on your mom's foot your mom probably won't be able to take it off herself. The downside is that it's so squishy and foam-y that it's not a good fit and can come off on its own.

Try every 3rd day. Do some work on yourself with that time. You deserve it.
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Coralmae, thank you for reaching out. We are very fortunate to not need medicaid. My mother was extremely well planned out with long term health care insurance and investments that are able to pay for her care. I won't be as lucky but I can't think about that now.
As to how to talk to your mother about moving into a facility, I will tell you that about 99% of all children who have to have this conversation will tell you they never knew what the meaning of stubborn meant until having that conversation. I can't tell you how many times I talked with people about how stubborn my mother was about wanting to stay in her own home and die, or about not wanting to wear the "I've Fallen But Can't Get Up" necklace, to getting mad at me when she couldn't find things and i told her exactly where they were and she would argue with me that they weren't there and I would patiently ask her to go to that drawer or closet and she would find the item and say "I hate it when you are right"!! I always loved that one. But it took over 8 years of visits to nearby facilities, invoking Susie Roman's name and advice, several falls and finally I asked her pastor (she used to volunteer at a church) to visit her and gently talk to her about the advantages of having professionals take care of her 24/7 so she would be safe and her children would not worry. She saw through that move like a person with x-ray vision. It was hysterical. While the pastor was in the house, I was out in the driveway waiting for them to finish their conversation. The front door opens and she steps out and says, "Don't you think I don't know what you are doing here, get in this house immediately". And the 3 of us talked. I think I was about 51 at the time and she scolded me like i was 10. In any event, the crowning blow as it were, was a fall in her bathroom while she was alone and she remained on the floor all night until the doorbell rang the next morning, and her part time CNA coming sit with her. When they saw all the bruises I got a call immediate and flew from California to South Carolina immediately and with a week she was all moved into a facility nearby that I had been secretly working with.
I hope it does not come to that with you, but it does take some creative efforts. I wish you well. Today is her birthday and the family is in town to celebrate with her.
Helpful Answer (13)

Amen to mom helper123. You are 100% correct. I recall my brother telling me he does not feel sorry for me having to take care of mom because she is in a facility. Talk about a good belly laugh. No one and I mean no one can know or understand how much work there is to overseeing the care and finances of another human being, especially one with dementia unless they have done it also, for at least a full year if not more. I could say I could write a book, but so could thousands of other people caring for their loved ones. I have a couple of cousins who went through the same thing and we had each other to commiserate with. They understood and did not mind at all if I unloaded on them.
As far as Don'tAskforHandout's comments, I could never in a million years resign from taking care of my mother. There is no one else out there in my family who could do what I have done or would pay as much attention or worry about the details as me. All that being said, i have given notice to the facility that I will be seeing mom only once or twice a week from now on when i am in town. They laughed and said they would believe it when they saw it and I told them I had to for my own sanity and they finally understood.
And guilt is probably not the best definition of what I am feeling. I feel a bit guilty that I want this all to be over with. I am jealous of my cousins who have their lives back. But in the end, I will be able to say that I was there for my mother in her time of need and was able to spend quality time with her, and I will never have to feel guilty about not doing enough.
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It sounds like you derive a lot of pride from the caregiving of your mother. And that a lot of the time being her advocate has been rewarding. It might be unrealistic to extend such extreme measures for an extended time period. No doubt you are weary and need to reduce your time commitment and stress level. If that, makes you feel guilty, I might discuss it with a therapist. They might be able to help provide you with some tools and exercises to get your life back. I think the easy answer is to just say, do it. But, it's not that simple a lot of the time. People have ingrained routines, reactions and opinions that are hard to break. You'll likely need to fill your time with other interests, hobbies, activities.  Maybe, a therapist can point out why that's important for your own mental health.  
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"GUILT" - Let's talk about the common thread of having some degree of guilt because you think there is, and yet, even MORE that you could do. I would offer up to all of us the following: The ones who LEAST should feel any guilt are those of us who are posting on this blog. Why? Because we are obviously the ONLY CONCERNED members of the family. The others (who should feel guilt) are those who are so removed from "the loved one's care" that they don't even know what to feel guilty about. THEY THINK that if the loved one is living in a Residence, that there is NOTHING LEFT to do for Mom or Dad. Let's all have a good belly laugh about that. I may not physically visit my Mother in MemoryCare every day, but YESTERDAY I spent half a day working on getting her expensive RX for 1/10th the price through a GoodRX pharmacy, and today I'll work on that endless load of her paperwork.

I suggest that we must "tamp down" any feelings of guilt that we are not doing more - We are doing PLENTY.
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