Re-adjusting after mom is in a nursing home (both mom and I).

Dear Nancy,

I could have written this post. My situation is EXACTLY the same except that my dad doesn't have trouble with his eyesight, he's hard of hearing. Oh, and he's a man (father) rather than a mother.

He lived with me for 5 years in my home until an accident at home led him to a nursing home. He's been there since the beginning of Nov. Once I wasn't a full-time caregiver I went back to work full-time and this cut into my time with my dad at the nursing home. He didn't like my working and made that very clear to me numerous times. He actually told me to quit my job so I could spend my days with him. He resented my working and he complained about it every time I saw him. My visits with him were negative and morose and dreary, he complained about my lack of time with him and I walked out of there feeling drained and depressed and guilty. There was nothing I could do about the job, I have to work so I can buy food and pay bills. When my brother would go and visit he and my dad had lovely visits and talked about books and tv and current events. I wanted THAT dad!

No matter how often I visit it's never enough and I've come to accept that I am my dad's touchstone. As long as I'm around, in his eyes, he's ok. I cared for him for 5 years and unknowingly formed a very strong bond that once my job as live-in caregiver was over that bond stayed strong. He shares everything with me. He's dying now and he still shares all of his fears, his emotions, his thoughts with me.

I don't want to be disrespectful to our loved ones by comparing them to children but when my daughter was little she wanted only me. Just mommy. Mommy made everything ok. My dad feels the same way about me and I'll bet your mom feels that way too. Even though they're in nursing homes we're still their caregivers. No one told me that would happen once my dad went into a nursing home. I was completely caught off guard.

Like you, after my dad went into the NH I felt I had my life back and I wanted to meet with friends and go to church and go out and actually do things and I felt guilty! If I had time to go to church I should use that time more wisely and go to the NH instead. I actually berated myself for this. I work in healthcare and if I work three 12-hour shifts in a row I am very tired by the end of those 3 days and I take the next day to rest. I beat myself up the whole day and tell myself I need to get up and get to that NH! It's horrible!

But it's getting better. I can't do anything about my dad's daily need to see me but it's now ok that I don't spend every spare minute I have with him. I had to make that ok. I talked with a friend about it and that helped.

Nancy, participate in your life. Go to lunch. Volunteer in community activities. And don't apologize for it. You have nothing to feel guilty about. When you visit your mom and you look around do you see families everywhere, visiting their loved one? Are there families roaming around everywhere you look? Of course not. We have to work. We have kids that need us. We have spouses that need us. We want to do volunteer work. We want to see our friends. And all of that is ok and normal.

My dad wants me by his side at all times and the only time he's ok, according to him, is when I'm with him. That's a huge responsibility that I didn't see coming and it's not a welcome responsibility but now that I understand it I've been able to accept it easier. Our parents are old and sick and vulnerable and their lives depended upon us at one time and for them that bond doesn't break when they go into a NH. It took me by surprise too.

I worked my way through the guilt but it's been rough and take it from me, it's OK to have a life now. We've earned it. My dad's dementia prevents him from remembering when I visit so each time I see him he says, "Well I haven't seen you in 2 weeks!" I used to hate other people overhearing this because I don't want them to think I only visit my dad every 2 weeks but now I don't give a damn what perfect strangers think about me and my dad. As caregivers we go through so much and I'm usually too exhausted or too worried to bother myself with what other people think. I still think about my dad constantly. I worry about him constantly. I've paid my dues and will do what I want, when I want because I know that I'm a good daughter. And so are you! I didn't anticipate the adjustement on my end once my dad went into the NH, or the adjustments I had to make in my life once my dad was in the NH.

I don't know if your mom has dementia but my dad does so anything I may try to explain to him is pretty lost on him. If you've tried to tell your mom that you have other priorities besides her and she won't accept that I don't know what else you can tell her. You're living up to your responsibility to her, you're visiting her, I'm sure you're in touch with the facility, that's all you can do. You cared for your mom for 8 years and that makes you a good daughter!

You are in a difficult position, and I know what you are going through because I am in the same position.

I too constantly get the "guilt trip" from my mother if I am not at the nursing home often enough.

For me, I also have the added issue that when I do go all that she can talk about are her physical issues. How often do you want to listen to that?

I know that it is boring for my mother, as it is with yours.

For me, the solution was within myself and not from anything outside. What I mean by that is that my mother is in the nursing home because she cannot do for herself.

I didn't put her there. Her physical condition forced her there.

In addition, I ABSOLUTELY DESERVE TO LIVE MY LIFE AND SO DO YOU. This is a mental shift you have to make...and that may be the toughest part of the journey.

What I try and do during my visits is focus on my mother and try and find out what she is watching on TV, what activities she is involved with...and focus the conversation on that. Keep her talking about herself.

In addition, I would recommend that you don't talk about you as much as possible. I don't mention any vacations, trips, parties, etc...that I go to.

I just don't want Mom feeling that she is left out.

I hope these tips help.

Wow... guilt & negativity - our mothers must be related. When Mom lived in my home, it just wasn't a good situation for any of us - she is intensely negative and it was making everyone in my home miserable. It got to the point that my kids & grandkids didn't want to come over - they were sick of her crap, to put it bluntly. She refused to help herself get better, yet spent all day complaining about her plight. When she was diagnosed with a DVT in her thigh & sent to the hospital (and then skilled nursing) I made the decision right then & there that she couldn't come back to my house again unless there was absolutely no other alternative. The weight that lifted off my shoulders after that decision was immense, and for the first time in a long time I feel like my home is MY HOME again. This is the point that you need to be, for your own sanity.

Your mother has done a good job of keeping you chained to her side instead of building relationships of her own outside of yours. This isn't fair to you! You have a right to live your life the way YOU want to live it - without her permission to do so. You don't have to "help her understand" anything at this point - you're an adult and want to come and go as you please and not have to answer to your mother. I agree with Tony above me - don't tell her anymore details than you need to tell her about what you do outside of the nursing home when you're not with her. In other words, don't fuel the fire and give her reasons to pile on the guilt - you have NOTHING to feel guilty about! If you are visiting her daily, stop. Start going every other day instead,..every 3 days sometimes. You won't have time to get used to your new-found freedom if you don't give yourself a chance to enjoy it.

You say you don't go out of town because you're afraid she'll need something - realize THIS IS THE GUILT TALKING and it is not based in reality. Anything she may "need" can be arranged or dealt with before you leave, and let the nursing home staff know you will be gone for "X" number of days. Don't tell her you will be out of town until the day before you leave, and let her calls go to voicemail that way you can screen them. In other words, reclaim your life...and DON'T feel guilty about it!! :)

Dear Nancy, I too could have written this post. As awful as it sounds, I cannot even begin to describe the relief I felt when my mother went into a nursing home and, even worse, when she recently mercifully died. The first weekend she went into the home, I took a short weekend trip--the first time I had been out of town and/or out of her clutches for more than ten years. I limited my visits to once a day and for no more than 45 minutes to an hour. I just let the constant bitching and railing go in one ear and out the other. I feel now as if I have been let out of prison; I more than served my time, and I refuse to feel guilty. I have also vowed never, never to do this to my own child. Please try to enjoy your freedom. God Bless.

I sit here at home, where I am my husband's caregiver, wishing that it were possible for me to put him in some kind of residential setting. I would like to believe that my life would change dramatically if I were no longer responsible for his care 24/7. However, reading these posts and hearing from others in similar situations, I understand that the feelings one has as a caregiver, do not go away as soon as someone else is responsible for that person's day-to-day care. When the person you care for dies, you can grieve (even when there are also feelings of relief) and, after a period of time, move ahead with your life. When the person you care for is still alive, however, it seems that the worry and guilt persist, even when it is now possible to live a full life. I don't know what the answer is other then going to a support group or working with a therapist who has experience with situations like this but somehow, it must be possible to break out of the paralysis that sets in when you have been a full-time caregiver for an extended period of time. I am 68 years old and feel that I may not have that many good, healthy years ahead of me. I am therefore determined to do everything I can to shift gears once I am able to get my husband into residential care. (I am working with an elder law attorney to make him Medicaid eligible so that is possible.) I can see from these comments how hard this will be and hope, with the support of groups like this, friends and perhaps professional help, that I will be able to enjoy the rest of my life after my husband is in residential care.

Nancy, my heart goes out to you, as you are living my life. However, I am now managing mine quite well, and I will share how I got it under control.

With her dementia and physical limitations, Mom has been in a skilled nursing facility for the last 2-1/2 years, and is receiving excellent care. However, she still has her lifelong narcissistic, negative, manipulative and controlling personality. I check on her needs weekly, bringing only positive energy and family news (which many times requires a great acting job and some lying). The minute she starts to go negative, if I can't quickly turn it around, I leave. I do NOT stay around her and enable her bad behavior. The longer the visit remains positive, the longer I stay, and we both benefit.

Now, likely, you will need to be honest (in a kind way) but firm about why you are leaving after such a short visit, and it will take multiple sessions to change the relationship dynamic, but you need to set boundaries for yourself, as the journey from here will not get any better.

Hugs to you!

I've had a somewhat similar experience. My 90-year-old father berated me, threatened me, and told me he hated me when he felt I had "abandoned" him to a good home. After a few months of anguish and depression over this, I finally told him I wasn't going to put up with his endless criticism when it was obvious he was doing better in the home than with me or on his own. I then backed off and let weeks and even months go by without visiting or calling. Well, a remarkable thing happened: he got nicer! He was so happy and grateful when I *did* get in touch that he didn't say a negative thing -- and the few times he started to, I cut him off and said I had to go. I gave him positive reinforcement by staying longer while he was nice, and negative reinforcement when he wasn't. This is still a work in progress for us, but I feel better than I have in at least five or six years.

Luckily I did not have to place my father in a nursing home, I was able to care for him at home. But from his short stays in a rehab facility, he was not a happy camper. I don't think he would really ever be happy in a nursing home. The rehabs I picked were supposed to be quality rehabs but he hated his time there.

Good Luck. It is a difficult situation.
Elizabeth

Nancy, this difficulty you're experiencing is exactly what I went through. Mom was very combative, very negative and angry and was extremely difficult to be around. I have one other sibling who does see mom too, but only once a week because she has a very demanding job and simply cannot do any more. Mom has been at her nursing facility for almost 2 years now and while she is taken care of as well as can be expected (the place is by no means luxurious but clean and the staff is well meaning) she still cries when I come to see her. It is difficult for me too, but you must remember that you have to live your own life also! It is too much of a danger for her to be at home alone if you work and I don't think she would take well to a home caregiver either...besides, the expense is most often extemely prohibitive. Maybe this will help: I get talk therapy from a psychologist at Catholic Charities (they accept all faiths & ethnicities, are wonderful & base their fees on a sliding scale; they will make a place for you, I promise) and after many months of crying & feeling horrible guilt I've come to the realization that life is...simply difficult for everyone. We all have our crosses to bear, and while your mom is in a place unfamiliar to her, she has you to visit. Try bringing DVDs that the two of you can watch; perhaps the other residents will accompany you: I've found DVDs such as That's Entertainment I, II & III are well received; I've also brought South Pacific. Anything that doesn't have a long storyline, is colorful, musical and brings back memories of older days might help. Subscribe to magazines called Reminise and Good Old Days; bring them with you and the two of you can look through them together. Also, share your feelings with the staff: the activity directors and the CNAs who are most responsible for your mom. I've found that because I visit fairly frequently (and it is hard, very hard for me to do so too, so don't feel bad about it!) they are more responsive to me. I often bake brownies or cupcakes for the staff members and other residents; sometimes I bring lemonade or a bag of ground coffee--anything to give everyone there a break from the institutional food. And let me leave you with this: try your best not to engage when mom gets mean with you. Simply change the subject. If a visit is going badly end it on a cheery note that you must leave but that you will see her again soon, and maybe she will be feeling better. DON'T BEAT YOURSELF UP! Just do the best you can, take time to contemplate the cycles of life, and be good to yourself. You sound like a very conscientious daughter who loves her mom very much. Keep looking for the silver linings in the dark clouds, they are there I promise and once you start spotting them you will begin to take charge of your feelings. God bless!

Thank you all so much, it's not better now, I limit my visits to no more than every other day. She tries to make me feel guilty, because I have a life and she doesn't, she says. She still complains that I am too busy and basically she is suffering from it. Now, one sibling is here for a week and she constantly asks what are we eating, what are we doing. She keeps saying she is coming home for a day, but I am not up to it. She can't until my sister gets here next weekend, because I have a pinched nerve in my neck and can't help mom do anything, she needs help with the bathroom. I don't mention anything about home to her at all, if she asks I just say I have been working alot. My brother doesn't think she should come home next Saturday due to mobility issues, but I told him they are going to have to tell her. I am staying out of it. I know after she asks to come home for a visit, she tells the staff I said no and laughs. She is trying to wear me down and I am trying to not let her wear me out. I will try some of the suggestions, she can't see the tv, even the large flat screens because she has lost so much of her eyesight. I know the instructor for a CNA class, her students have been doing training there. She told me today that mom has gone down hill drastically in the past three months. She has noticed a huge physical and mental decline. I have to take care of me first, she is getting good care there, I still feel exhausted all the time.

Good for you, Nanc - you just need to keep doing what you're doing & don't let the guilt take over again. Your Mom really sounds very mean and spiteful - I like the suggestions above about limiting the visits as soon as negative things are said, and then re-enforcing the positive things with longer visits - it's almost like raising another child some days, isn't it? Good luck & hang in there.

I don't know how you did it for so long! I have only been my mom's caregiver since my dad passed in April 2012 and I want to run away screaming! I have decided to place her in a memory care unit at an assisted living facility. The place is very nice and the people seem genuinely caring. I have struggled with this decision for the last two months. Mom's dementia is getting worse and she is wanting to leave the house frequently to visit a (unknown to me) male friend of my brother's who "lives across the street" (but doesn't). She even bothered her sweet neighbor recently thinking it was his house.

Anyway, you should not feel guilty at all. You have been wonderful with your mom and have provided for her care for many years now. It is time to think of your life and your needs.

Congratulations to you for being so strong. You must be an amazing person. My best wishes for you.