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One of the key things I see in your plea, is the ability to give up control to others. It is hard...when you have that personality type. I know, because I do! But again, I've said it many times...you are only responsible TO your parent, not FOR them. I think the so called "guilt" comes from wanting their lives to be perfect. But the sooner we accept that no life is perfect then why should their life be that way? It's as if we put a higher standard on their life than we would for our own. You definitely do not need to be visiting every day. Why would you unless again you can't give up control. Accept that some things will not go how you want. When I get uptight, my sister who is an RN, asks me "is he bleeding from an orifrice or dying"? If the answer is NO, then I don't need to dash over there. Are they fed, given meds, clean?? That has truly helped me set priorities. I too am the only child living by dad so I do all the bills, bank accounts, etc. but I set aside one day a month to do that. I don't let it consume me every week. Most bills I have on auto debit. My sister does negotiate the Medicare supplement annually for him. I take his taxes to an accountant and let him pay for that service. I don't need to be doing that. It's little things like that, that take some of the burden off. Two things I suggest since you say you are not a man of faith which is ok. BUT, get yourself to a therapist and learn to daily meditate. Meditation actually changes the brain. Give it a go for 10 minutes a day. There is a great app and website called Headspace. Try it and best to you. The only thing you can truly control is yourself. Remember that. Bless you on this hard hard road!!
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Tattoochick-I really feel for you. I get into bed when I am not traveling and just watch Netflix and zone. I make excuses not to go out because all I really have to talk about is my mother and people are sick of it. But having another disease on top of others is one more headache. I am so sorry for you. We are on our 5th assisted living so I understand, but each time they move you have to train a whole new bunch of CNA's, and learn their way of doing things, which prompts even more anxiety because you don't know if they will be as good or worse than the last one. SO you pay attention more and look for the little things they do right or wrong. People suggest I get a job, even a part time one. I guess I could, a real part part time one. Or volunteer. Well I do volunteer at with my mom, full time. I work for my mom, full time. And when I go on my trips, I need them so much and if I let myself enjoy myself away from mom, I can finally de-stress. I think the key to all of this is to find the right facility and that is so hard because they all pay really bad and the turnover rate is horrible for CNA's. And if management sucks, well, then it is really bad. It's an industry where you have to keep on top of things if you are at all a caring caregiver, a responsible one or even a meticulous one. But if you can be around enough to let them know that you are going to be around, that you make sure things are just as you want them, then little by little, take more time off between visits. I am trying to do that. They are all asking me now when I come in 'Where were you yesterday? We have not seen you in a few days, why haven't you been here for lunch?" etc etc. I have trained them to see me so much that they take care of mom especially well. But I am weaning myself off of my visits so I can get my sanity back. I have to. And then I find my visits with mom are much more quality visits instead of monitoring.
I am in physical therapy for my knee to hopefully prevent surgery. That is giving me some motivation to eat better and exercise more. With that I stay out of bed or off the couch more. But you talk about motivation? I have a desk/dining room table with un=filed papers on them for my by life and my mother's because they are just too much to look at all the time. They have been there piling up for almost a year now. I make sure the relevant ones get paid, or given attention, but I am just so over it all. My brother and I had a good visit with my mother last evening and I think she even recognized him, even though he has not seen her in a year, so that was real sweet to watch. All for now. Thanks for reading.
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OMG, add diabetes to the mix and it sounds like my mom. I certainly have not been at this as long as you, just a year and half. However I feel my mom has put me through a life time of caregiving already. On her 3rd assisted living, and just lots of refusing of care, she likes to be in control. I don't do anything to help myself, I own a small business which is failing as I haven't been giving it the attention it needs. I just sit on the couch and watch TV when I am home. Can't get myself motivated. I get it, I wish I had advice.
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sdbike, thank you so much for the info! I tried the necklace thing because she had a hallucination for two days the she had gotten pushed around by teenagers in her front yard. There are no teens in her neighborhood but I thought it was a good chance to bring up the necklace. When I got it set up, she didn't even remember that it was there and when asked she said she didn't need it! Now I have to send it back.
We went to her attorney today to sign her health care proxy and to transfer her house into my name (for Medicaid purposes), to add my her grand daughter as a beneficiary and to sign papers to move some of her assets to a trust fund that no one can touch. You would not believe some of her answers to the attorney when she was asked to sign! When he asked her if I was taking care of her, she said "not really" so he had to ask her the question in a different way! Then he asked her if my niece and I were honest and would she trust us with her money and she said "maybe"!! Boy, did I feel embarrassed and shocked. It's her independent streak I guess. The worst part of the signing process was when the associate started talking about assisted living and Mom's ears perked right up and she told asked him what that meant. Meanwhile, I'm shaking my head and mouthing "don't say those words to her". We managed to slide over that blunder.
I wish your mom a very happy birthday and I hope you all enjoy the day with her! If you would like to carry on this conversation privately, please feel free to PM me.
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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.
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Sdbike, thank you so much for sharing your story. My mom is not in a memory care unit of any nursing home right now, but I am working with a facility close by. I, too, feel guilty. Sometimes I feel that I am not doing enough for her, but everyone I talk to tells me that I am an excellent daughter for caring for Mom. The emotional stress is very overwhelming. It's going to get harder for me when I have to approach her about going into the memory care unit. I have no idea how to do that, without making her hate me.
You mentioned that your mom is in a self pay facility. I don't know where you live, but have to checked to see if your state has Medicaid benefits? I am working with my mom's attorney now to try and get my mom on it. That should save me some money. I feel for you. This is such a devastating disease. Please keep us posted.
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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.
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SDBike--

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.
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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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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 .
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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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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.
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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!
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How about going every third day?

Do you enjoy visiting with your mother? I think that should be your main focus while you are there.

I don't know much about pressure ulcers; have they tried using a sheepskin on her foot?
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