Feel at Peace: Lose the Caregiver Guilt

I've read your excellent book..and many of your articles. Carol, for all you have done and continue to do for others, inside and outside of your family, any guilt you carry is unfounded. Some people are simply a cut above, and you are one of them. Thanks for this article, it helps a lot.

Family caregiver doing the best I can.

This "scene" has been played over and over for the past 2 years with my mother whom we moved to assisted living about 1 month ago. It does help to know I'm alone in this.

Thanks for posting this article, Carol.

I am working on my guilt issues, currenly Mom lives with us and I feel guilty that I want to move her to assisted living. I was married a year and a half when she came to live with my husband and I, we got along great before she came...we are not getting along so well in the last several months. She has been here for the last year. She has severe dementia and a personality disorder...we originally bought a new home and finished the basement for her, have a woman that comes in 3 hrs a day (week days)...Mom decided she wanted to move upstairs into our personal part of the house even though we eat breakfast and dinner with her everyday....she just did not like the "basement", an ego friendly 2000SF brand new walk out living space. So now she has moved into a guest room that is right at the top of the stairs of our master bedroom. She eats all meals with us (me) now, she comes into our livingspace 20 times a day instead of 5-6....she needs the heat on upstairs, even in the summer. The basement heat stayed on, now she needs the heat on upstairs...and thats where the tv room is (needless to say my husband who hates it hot is muttering to himself the last week about the heat); and comes home from work daily and is instantly moody, I have been dealing with Mom all day (I work at home), she talks about me to her p/t caregiver everyday--its 50/50, she loves me but I can never do enough--I am trying to keep my husband happy (and positive-he is getting negative about things lately) and I feel like I am disappearing and I just want to walk out. So I have been considering assisted living which she doesn't have the money for so I will somehow have to figure out how to get assistance/or partially pay for...I feel guilty...and at the same time, I feel alone, hurt and close to my own personal break down.

This article hits home, I think, because caregivers are by nature kind and giving. I believe that is one reason that they have stepped up, so to speak, and taken on caregiving tasks. This trait of kindness can be exploited and abused, however, by other human beings. And caregivers need to remember to care for themselves too. That we count too. We need to own the right to say "no". And we need to be aware of when a person is trouncing upon a boundary which protects our human rights. And then we need to say no, if that is what we want to do and it is in the interests of our own self-preservation (of health and sanity) .And here's the kicker......We need to be able to tolerate the aftermath of our saying no. There will surely come consequences.....someone being upset with us, putting pressure on us to give in and do what we really don't want to do, saying things to try to make us feel guilty, or else even US the caregivers creating our own sense of guilt which is not helpful to ourselves. It is not healthy or deserved guilt. I am learning to listen to my own heart and to my own Creator, God, who is telling me what to do----not what people are telling me to do. And then, yes, I lose the guilt. I cannot be strong to take care of my parents if I am slowed down, or even crippled, by neurotic guilt. I have a job to do.

Brokenhearted, I can really relate to your comments. My mother is currently living in a nice apt. at a retirement community 5 minutes away from us. She sees us at least twice a day...I bring her over for lunches and for dinner, and socializing. When we have big family gatherings she is always right in the middle of it. But, she is always asking if she can come and live with us. We have room for her, where she'd have her own bedroom, sitting room, and bathroom. But my husband is reluctant to have this happen, because he is afraid that she'd want to be around us all the time, and forget the boundaries, etc. I think she'd be content to stay in her part of the home with her kitty, watching her favorite programs and napping (wich she does a lot of) but I am concerned that it might not be the case. Her memory is getting fuzzier all the time, and she tells me that she gets disoriented and can't quite remember what and when she's supposed to be doing things. She doesn't go down to any of the meals that the retirement village offers because she's afraid of getting lost, and not finding her way back to her apt. So, if we have other plans for dinner, or go out of town, I have her dinner delivered to her and make arrangements for my daughter to visit w/ her during the day. But, I am thinking that it may be time to have her come to live with us. I worry that if she was forced to go to assisted living (which they have a very nice one right in the same retirement village) that she would go down hill rapidly. She is very adamant that she does not want to go to assisted living. A big thing is she'd have to give up her cat, who she is very much attached to.) My intended approach is to give her a choice:
Either she can remain in her independant apt. w/ kitty and continue as we have been.
Or she can move in with us to a nice, comfortable basement apartment, but she will have to realize that there will be boundaries, and that my husband and I will need our space and time alone. I've talked to her about this, and she says she would definitely understand our privacy needs, and would just be content to be part of the family, and would not interfere or be in the way....but just be quitely around. ;)
Our home is in the country (somewhat isolated on 5 acres) so when we leave for social events now and then, she would be alone....for several hours maybe), and if we leave for longer periods I would arrange to have someone come to the home to be with her.
I'm just unsure if this plan is the right thing to do, or not. I want her to be happy, but I want her to be safe too, of course. And I have to consider my husband and myself, as well. We are in our 60's, so we aren't "spring chickens" either, and want to enjoy what good times are left to enjoy, so to speak. It's a big dilemna for me right now. A big decision to grapple with, to do the best thing for all of us. I keep feeling that Mom won't have too many more years left, but who knows......she's relatively healthy, but quite frail.
Anyway, thanks for listening. I appreciate everyone's experiences. It helps immensely to read about others' situations.

When my mother-in-law lived alone in that little house after her husband died, I felt much more guilt. I knew she was sitting there with all the curtains drawn (like always) watching TV alone, unable to go anywhere except walk her driveway a few times a day. I felt bad for her, cause that would drive me around the bend for sure if it were me. The guilt has eased off now since she's in asst living, but the thing that I got from the article that I just read, was' touch'. It has occurred to me recently, now that her husband is gone, she needs someone to 'touch' her. I have made a point to hold her hand in church every time we pray. I had to teach my husband (her #3 son) to do the same thing, so now he automatically reaches for her hand. I spend more time with her than anyone else, so I have started making a concerted effort to 'touch' her on a regular basis. I am NOT a touchy feely person by nature, so this is a learning experience for me too. Thanks for the reminder Carol of how important something so simple can be, to reach out and 'touch' the person who needs it.

I am helping my Dad get into a "home" in the next few days. I have had to process the guilt for weeks now. This is the only safe situation for him and my mother is not capable of caring for him daily any longer. I stepped back from the daily visits a few months ago to try to reclaim my life and that was a guilt trip for a while as well. It's all about the boundaries, and yes we with the nature for caregiving can really be taken advantage of. I broke it down to not being there for every want, but being there when they had a real need. My life is better for it and I believe they are happier not dragging me into every percieved crisis.

Thank you for your insight.
I also have dealt with guilt, but have it better under control now.
Some of our elders "play" on that guilt and can make an uncomfortable situation unbearable.
It's all about boundaries and balance. Getting there is the hard part.

Braida, since your mother is already situated in a retirement community, and you can afford it, it might be better to keep things the way they are. From what I've read on this site, if anything, the reality of an elder moving in with a family seems to turn out to be more stressful than the family had anticipated. Of course, there are cases where it works out. But you mentioned that you live out in the country......that might really pose a problem as time goes on and your mother continues to decline. She's going to need more assistance, not less. And that will require energy of you. Just something to think about. I wouldn't let guilt drive me in the direction of having her move in with me. It would have to be a reasoned decision that I felt firmly confident about. Good luck.