I received this in an e-mail from someone new to reading our boards. Although this person is not ready to join in our discussions yet, I asked for,and was granted permission to print it, because I felt it spoke right to the heart of our stuggles.
As always, honest comments are appreciated.
Thank you.
joang
Do we, as caregivers, try to do too much? Seriously, are we trying to do more than one person was ever meant to do? All around me, in person and online, I see caregivers who are all but killing themselves trying to take care of a spouse with dementia. No matter what the problem—wandering, incontinence, inability to do any of their own personal care, rages, multiple medical problems—we keep trying to take care of all of this, usually with very little or no help. Year after year we do this, even when our own health declines, and we are ready to drop or have a complete mental breakdown. It seems like we feel like we have to do this.
I'm beginning my ninth year of caregiving, and I'm starting to wonder if doing all this is the right thing to do. Do we really owe our spouses every drop of energy and spirit and time that we have, not to mention most of the family's financial resources? There are two people in a marriage relationship, even if one of them is ill. (With my own medical problems, and those I've heard of with other caregivers, I sometimes find it quite ironic that we are called the "well spouse".) Isn't the caregiver entitled to some sort of life, too? We are not guaranteed that off-in-the-distant-future "after" that we like to think about to get us through some hard times. These may be the last years of our lives, too. Aren't we entitled to have some enjoyment out of life? We do our best to make sure that our spouses are taken care of and as happy as possible, while denying ourselves the same care. Why do we do this? Do we think that we will change the outcome of the disease if we try to keep going and going until we literally drop?
On the one hand, what I've written might seem heartless or selfish. On the other hand, I think that our own survival instincts sometimes kick in and scream to be heard. We shouldn't feel like we have to apologize because we want a life of our own to wake up to in the morning. That is not selfish. We do have a right to survive, and I believe, to have some rest and relaxation and freedom to actually live the one life we have been given. And I don't mean that we have those rights after our spouses no longer need us, but right now and for the rest of our lives.
One day recently I was sitting at the kitchen table with my head in my hands, too exhausted to even get up and move to a more comfortable chair, and I thought: "I can't do this any more. I'm so tired I can barely remember my name. I'm too tired to try to get to bed so I can take a nap. I don't think I'm going to be able to keep my husband at home any more. I just don't have anything left to do it with." After a pause, I thought, "But I'll feel guilty if I haven't done everything I can do to keep him at home". Then the tiny voice inside me pointed out that I had already done everything I can.
It's not just me I'm thinking about. I keep hearing other caregivers tell the same story of exhaustion and stress and hopelessness. I'm finally starting to wonder if we even should be doing what we're trying to do. We talk about abandoning our spouses if we don't provide full-time care for them. What should we call the way we are destroying ourselves? Murder? If anybody else was doing this to me, I would have them arrested for abuse. But I'm doing this to myself.
This is wonderful!!! I never even thought of some of the things that she/he had said. especially the last two paragraphs. My hope is that some day soon this person will feel up to writing us more. The outcome of the disease is going to be the same no matter how much we knock ourselves out. There has to be something said for being balanced.
This new person has realized what some of us veterans eventually come to realize ... and what some of us veterans will never realize ... because the decision to place a spouse in an ALF or NH is often too painful and guilt-ridden for many spouse-caregivers to deal with. Some might think that it is only an easy decision for those lucky enough to be in a situation to mine ... with a long term health care policy that covers the costs of ALF or NH. But among those in my actual and online support groups, I have found that this decision is just as painful and guilt-ridden whether there is a health care policy in play or not. I know what I can do and what I can't do to take care of my wife. My wife and I have discussed this together and she knows that when the time comes when I feel that I can no longer handle things with her at home, that is when she will go into an ALC. That is why we took out the long term health care policies in the first place. For EACH spouse caregiver, this is definitely the most personal and difficult decision that, eventually, must be made. And, as far as I'm concerned, whatever decision ANY spouse caregiver makes is, by definition, the correct decision.
This writer is spot on. We Caregivers do too much. I think It starts out as habits we develop while coping with the early behaviors, before Dx. At Dx, we then go in to hyper drive in Caregiving, just as we would if our LO had been injured or had a crisis illness. Once on the Caregiving track, we get so buried in the doing, that we fail to see the fact that this isn’t a broken leg or appendectomy we’re helping them through. I made a New Year’s Resolution here on Spouse, to try in every way I could to advocate for more support for Caregivers. But you know, along with that goes the willingness of Caregivers to accept, use, and seek support. Nobody says—not even our wedding vow say-- we have to do it all ourselves. We are not the only person who can feed, shave, style hair, do dishes, laundry, etc., etc. There are things only we can do. They should be our focus. Taking care of our own health and well-being—mind, body, and spirit—should be of high priority on our Do Lists. IF WE DO NOT TAKE CARE OF OURSELVES, WHO WILL THERE BE TO TAKE CARE OF OUR LO? This is not an idle question. We have to get over our ego, that no one can do for our Los as well as we can. Others maY DO THINGS DIFFERENTLY, but they still get done. I see no logical reason to feel guilt over placing An LO who’s needs have escalated beyond what one person can do. Good care cannot be provided by a Caregiver who is too tired; depressed; and/or dealing with ill health. We are Caregivers, and we are still Caregivers when we are advocating for them in a NH. The difference is we have a whole crew doing the work, while we supervise and can also spend quality time with our LO. That’s nothing to feel guilty about. Sometimes I feel like a broken record or a nag, when I respond to another poster to make lists of things to be done and draft the persons who offer,”If you need anything . . . “ Search out sources for help. Ask. You’re no worse off if the answer is No, but it might be Yes,. We had a life of our own before we married. We still had it when we promised to share it with our LO. We bound them together—we didn’t give ours away. And when they are forced to leave us, we will still have our lives to finish living. Trying to preserve our lives and shape an AFTER isn’t unreasonable, selfish, or frivolous. It is another part of being a GOOD Caregiver.
dear Writer, thank you! I am so tired and sore and "down" from all the heavy work I have been doing to get our house on the market that while reading the original post I thought it ass something I had written. Because I have certainly frequently had these thoughts. And I am becoming more and more certain that I can not too this for years to come. We do have an excellent LTC policy which will now pay for full time in home care but my not all that helpful helper has missed so many days and now is cutting his hours in half. I am moving us to Richmond, VA where we have a house we can either move into or sell at significant loss. I am trying to get us to a place where the ALFs and AD support is quite superior to here.
Carosi is so right on in my case it started out with me in hyper caregiver mode. I threw my whole life into getting him the best situation possible, giving him everything he could want....after all he and AD and I didn't. I lost me in these four plus years of being his "cruise director" and I feel very proud of what I have given him. he's been very happy in this music, nature and art filled resort town. But whoops......turned out only one of us was on vacation and the other is slowly dying.
There are some of you who are fortunate to be able to place your spouses in wonderful facilities where your spouses get the care that is needed. Some of you place your spouses in good facilities even though you can't afford it, because it is the right thing to do. Some of you have had to move your spouses two or three times until you find the right facility. YOU ARE STILL THE CAREGIVER. The fact that it isn't in your home doesn't lessen your role....just your load...as it should be.
There are some of us who are fortunate to be able to keep our spouses at home - and pay for in-home care while we work full time. Like me. I go out to lunch with my friends...and have some fun...and I have five days of respite a month, and can go out with my girlfriends and have fun. It is true that for three weeks a month I am home every evening and the weekends taking care of my husband, but it has been my choice. I don't see taking care of my husband as a chore. There are some who are 24/7 caregivers and enjoy their homes and will continue to take care of their spouses at home. Again, we all choose what is best for us and our spouses.
We all make our decisions based upon many factors.....and taking good care of our spouses, however we choose to do it, is the main thing. I don't look at it as if my life were on "hold" - I'm living my life NOW....I have many good friends who support me, and whom I support; I have my work at a job I love; I have a home that I enjoy; and the man to whom I have been married for 49 years and 8 months is no longer in the body that I am caring for, but I will take care of that body until the Lord chooses to take him.
Yes, I rant, I rave, and I cry.....but never in front of him....and it doesn't last long....I have Joan's place to come for solace among my "family" here....
I would love to hear more from this writer. Yes I have had same thoughts, many days of physical pain from lifting etc. I knew this journey would not be easy. Trying to keep DH home so will not be financially ruined but only God knows future and I just pray for strength each day."Life sucks and Elvis is dead! Just trying to do the best I can. I do love DH so very much.
Thank you , Joan, I think this is a valuable topic for our local group meetings. We sometimes touch on this but not in a way that is as meaningful as this essay might lead the discussion.
"Although this is an old topic, it seemed to go along with a couple of other topics that are current right now.
ttt"
Thank you, Jan. I, for at least one, had missed this discussion earlier.
This subject is one that plays, and sometimes torments me, on some deep level inside this part of my mind that I too often try to supress. The what ifs; I DON'T take good enough care of MY physical and mental well being?, I don't do the "right" thing? I "break down" from the sheer mental and physical anguish of it all? And many more anxieties that often times you didn't even realize you had until POOF, there they are.
Maybe, when all is said and done, the best that can happen is that this kind of discussion is kept "ttt" periodically. Even if sometimes we can only follow it here, or keep it alive as one of those conversations we sometimes have with 'me, myself and I'.