Dad really, really wants to go back to his home (which is now up for sale), but it's not safe for him to live alone anymore. He has dementia and reasoning with him is impossible. I feel like I've started to lie to him about everything -- that Mom's at the store (she died three years ago), that his house is being fumigated, that his car is in the shop.
I feel so guilty, but it's truly the best way to keep the peace. How do I deal with the guilt?
It's a big challenge to handle Alzheimer's behavioral and memory issues. The guilt you feel coincides with your need to spare his feelings, cope with your own, and make everyday life as smooth as possible. Let's break each of these apart and look at them one at a time. You might not be able to "solve" them, but I hope you can come to some measure of peace.
It hurts to see the confusion and frustration in your dad's eyes when you have to tell him that his wife is no longer here, or that he can't drive any more. I've walked that same road with my mom, so I know how hard it is to have to say those words. And you don't just say them once (which is painful enough), but over and over. So you avoid, lie, and do everything you can to soften the blow.
There are great ways to deal with Alzheimer's behavior that can help, but they don't "fix" anything. You can distract ("Why don't we walk to the mailbox?") or redirect ("Would Mom have liked this scarf?") or even get to the deeper feelings ("You miss Mom, don't you? Me too"). But you know that five minutes from now you may have to do it all again.
And while your dad may or may not fully feel his losses, you do. In many ways, what you're feeling is grief. You're trying to work through the emotions of letting go of who Dad was while embracing this new Dad and new caregiving life. Impossible? Not really. I know that it's far, far from perfect, but life can still hold much sweetness.
Vent to a girlfriend, to your journal page, to your support group when you need to. That's deeply important. Sign up for Steps & Stages here at Caring.com and share what you're going through with other caregivers. It helps to realize you're not alone. In other words, do all you can to give yourself the support you need to get through this. It will make you a better, braver, more relaxed, and even more hopeful caregiver.
Next, I can't begin to tell you how important it is for you to get out and take a break. Start with five minutes. Sit on the front porch -- alone. Drink a whole cup of hot tea and do nothing but rock and enjoy the birds. Or put on some music so that you can sing while enjoying an extra-long shower.
Begin to see your life as separate from your dad's. That doesn't mean you don't love him or that you're not a good caregiver. It means that you're a separate person, which you are. Do one thing for yourself, outside the home, each week. Sign up for a yoga class at the local rec center, join a book club, surround yourself with something new and with people outside the caregiving world. You need to see that life does indeed go on. This will actually give you more joy and energy, rather than taking it from you. You'll come back renewed, with something different to talk about, and you'll find that you appreciate your dad much more.
Focus on what's good. Learn to be grateful for the smallest of things: if your dad smiles at one of your jokes, if his face lights up when he watches a particular show or pets a kitten. Be grateful for your home, a comfy mattress, a friend you can always call. When you start to wander to the "bad neighborhood" of your mind, pull back. Go for a brisk walk, bake muffins, or put on music and literally drown out the voices of doom and gloom. In some ways, it's about staying one step ahead of the stress and loss that tries to gain on you.
Now, the guilt. Guilt is something we choose to embrace. I know it doesn't feel like it now, but guilt is just a series of thoughts. You have to accept that you didn't cause Alzheimer's, and you can't fix it. All you can do is to make your dad's life as comfortable and safe as possible, while balancing your own needs and those of others you may be responsible for. Guilt only feeds your dad's emotions and creates a vicious cycle. Yes, his wife is gone; true, he can't drive; no, it's not safe for him to live alone. All that hurts. No way around it. All you can do is to offer alternatives -- you get to run errands together, he gets to be a part of your family now, or he's in a care facility where he's safe and can make new friends and connections. Not owning a home can be a good thing, since there's a lot of responsibility and even loneliness that comes with living alone. I know it's not ideal, but all we do is make the best of our situation -- each of us. Your dad can't reason this all out, but you can.
Every time you feel guilty, see it as battery acid being spilled on your life -- eating and corroding the joy and sweetness the days have to offer. What would you do with something that toxic? You'd clean it up fast, get it out of there, and try to preserve what's left.
Gratitude is the antidote to guilt. It won't undo the damage, but it keeps it from spreading further. You have your dad, and you can choose to love him just as he is, and you can embrace all that you've lost -- while focusing on the good that remains.
I am not sure how I lucked out and came upon this site ( define intervention) ? I am facing this situation with my mother and without any support from family. Our relatives have passed on and the rest of them live away. I appreciate reading the posts above they have provided comfort. I will seek a support group in my town. I agree with the last post . I, also am glad I found this website.
I wish people would not even use the word lying in speaking about communicating with a person with dementia. Lying which carries all sorts of judgmental, emotional baggage that is irrelevant here. If you lie to gain an advantage over or hurt someone,THAT is a moral issue. Trying to find a way to HELP your parent - or other person - who can no longer remember some things - anyway helping them to come to a way to live in the world as they see it is a GOOD act, an act of kindness. We don't go around assaulting everyone around us with cold hard facts - the facts only as we see them, by the way. CA_Claire called her explanations Alzheimer's Stories, a great idea. What we engage in are stories which incorporate your parent's memories into something that helps them make sense of the now baffling world around them. All the suggestions in the article - about pulling away the welcome mat for guilt, considering the real life alternatives, and living a life beyond caregiving - are so on target.
Mom was the one with dementia in our family. When they were moved from Independent Living to Assisted Living, Mom thought they were on a vacation, and thought that I was on vacation with them (took many vacations with them and my spouse before they had to move to independent living). So we just started acting like we were on vacation and would be going home 'soon'. Never defined what 'soon' was. Then Mom would ask if I had my own 'suite'. I would tell her yes, that I did - my home was actually 7 miles from their facility. Dad had trouble with it - never quite got the idea of just going with the flow (he's an engineer). I never considered my telling stories to Mom and Dad as being lies - even cleared this with my Bishop. Having to deal with someone with one type of dementia (ALZ) like my mom, and someone with atypical dementia (Dad), is difficult at best. When in the "Land of Alzheimer's", stories are important, and much easier than agitating someone with a truth they are incapable of dealing with. Consider what you say to be "Alzheimer's Stories" rather than lies. The distraction techniques work well, and saying that "later you'll be back home" can deflect a lot of grief for you.
I told my mother she has Alzheimer's disease. I told her she will be confuse. Be honest with your dad..tell him the true...dont forget to tell him daily how much you love him...
We had to deal with this issue with my mother. The problem is that with dementia comes confusion. We tried to reason with her, but learned that it serves no good purpose to argue and make mom more upset. She wanted to go home and dad would argue with her that they were already home. The argument would only upset her more and there was no way to reason with her. I suggested that her put her in the car, ride around the block, and take her back home. He did not want to do it, but after many frustrating arguments, he did it and it worked. There are many examples of how we used this approach to make mom feel better about her circumstances that I will not go into here, but I will expand on this subject at www.memoryofmom.com. I know the guilt of lying is hard, but I would suggest that another emotion at work here is denial. Dad kept believing that she would snap out of it if kept telling her the truth. Once he moved from denial to acceptance, he found it much easier to fib to her and avoid the arguments. He finally accepted that he could not reach her and bring her back. Acceptance is very painful, but a necessary step for those caring for someone with dementia.
See my latest article about the myth of Alzheimer's based on Dr. Whitehouse's book of the same title: http://bogotafreeplanet.com/index.php/articles-health/12020 Dr. Ethelle Lord Pioneers in Alzheimer's Coaching http://remembering4you.com
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@ Tennismom ~ Sorry, the coach referral source that was printed is not what I intended to give you. That was a book I was ordering for my library. Here is the coach referral source that is free to you: http://www.coachfederation.org/clients/crs/ and then specify that you are looking for an Alzheimer's coach. You can also Google the words: Alzheimer's Coach for caregivers.
@ Tennismom ~ I would recommend you go to a coach referral and request a trained Alzheimer's coach. You need to interview about 3 prospective coaches so you can see how they work and if it is a good match for you. The coach referral I would recommend to you is: Quiet Leadership: Six Steps to Transforming Performance at Work. Another great way to see what an Alzheimer's coach does is to review the common sense questions posted at: http://practicalcaregiversurvival.blogspot.com/2012/03/dr-ethelle-g-lord-pioneering-alzheimers.html ~ good luck in discovering the joy and benefit of having a coach when you are a family caregiver.
I have to be very careful with the tone in my voice. He gets shakey and acts hurt, makes my feel terrible. i'm not the only one. I know my daughter can't put herself in our place 24/7
@ lere ~ I'm sorry your daughter told you to keep a positive attitude at all times. It is really not humanly possible to do that. We all know that, right? I encourage you to follow your heart, stay with this group as it is always therapeutic to share information, and when it came to anxiety and stress, I did call on a herbalist near me and she made me a great formula. As soon as I felt stressed out and short with my husband, I would immediate take it in a little water. It saved me many times from loosing my temper. Good luck to you. Stay strong. There is much reward in the end.
I sincerely thank all of you for your comments. Yes i will seek all the help i can get. One thing i will add. i have tried two drugs and both have caused more problems then i care to share. The Dr. took him off as soon i reported the side effects..Now my husband and i are in this together for the long haul. I had never heard of an alz. coach. My daughter told me i should ALWAYS give my husband a positive attitude.Well i'm sorry, this doesn't always happen.
@ lere ~ I am a professional coach myself and knew how to get the right referral. I needed the same help as you do because I cared for my husband for 10 years. He has Alzheimer's but is now in a nursing center. Now I am training Alzheimer's coaches at remembering4you.com and also give out a lot of good information for any family caregiver. Let me know if there is more you need after you check that information.
Eglord, Where did you find your coach?
@ lere ~ Sharing this information is vital to your children's ability to prepare themselves for the eventual outcome of their dad's condition. A great source to give them, because they are all adults, is the Alzheimer's Playbook which is available online and at Amazon. Let them know what stage their father is in now so they can map the present and future. I understand when you say you feel you are talking behind his back and the sorrow is unbearable at times. One of the ways I coped with my sorrow and tears is to write a journal. Once I wrote the thought and feeling down, I did feel much better. Now I know, from experience, that finding the right people to talk with helps tremendously. That is why having an Alzheimer's coach is so important because I became extremely desperate, even depressed, and know that unless someone understands, it may come across as complaining when in fact we just need someone to talk with, right? Someone who will be patient and listen. Good luck to you and do stay strong because your husband will need you to be that way too.
Is it right for me to let my children know how bad their dad's memory is getting. May-be i should spare them the decline i see everyday.. Also i feel like i'm talking behind his back.. They are grown and have busy lives, but my life is consumed with all the changes in our life.I have no sisters or anyone to share my fears and concerns with. My prayer is for God to bring someone that understands into my life..
This is all part of talking Alzheimer's. My fear was that I would generalize the "lying" with other people in my life, but it did not happen. I spoke like that just with my husband. Because his judgment and reasoning were faulty, it was really not possible to be completely honest with him. By learning to talk Alzheimer's I was able to avoid a lot of arguments, justifying, and repeating all the time. This is one of the first lessons I learnt while taking care of my husband.
I wish I would have known about this site when my mother was alive. I lost her a year ago. There were so many times, prior to her death, that I felt alone and completely guilt ridden. She was in a care facility and I was there every day supporting her in every way I could. Still, there were days that I came home crying because I couldn't make things better. In other words, I couldn't change the course of her disease. Intellectually, I knew I couldn't, but emotionally I struggled with that knowledge. Of course, I wasn't alone. I have a loving husband, family and friends but they didn't have the unique relationship with my mother as I did and therefore, couldn't, and shouldn't, have experienced all my emotions and feeling of loss. I've been through my own battle with what was diagnosed as terminal cancer 21 years ago and other challenges and losses but never anything like the experience of losing my mother a little each day until I could barely remember what she was like before this horrible disease. Thank God for a site like this. I'll share it with all my friends.
This hits home...I was just talking about this the other day. I posted this to my facebook page. Asking my friends and family members to read this, I hope they do. I am glad I found this website.