May 302013

Caregiving can be extremely rewarding, but all caregivers will eventually feel some degree of frustration, anger and guilt. These are all normal emotional responses to an incredibly emotional journey.

As a caregiver, you may feel frustrated and angry at your chaotic life, or your lack of control over the disease’s progression. Anger often evolves into guilt. You may feel like there isn’t a light at the end of the tunnel, and have the guilty thought, “how much longer can this go on?” But understand, feelings can’t be denied. They can however be changed to some degree by adjusting your perspective; for example, you may feel less frustrated with your loved one’s acting out if you can remind yourself that they are not doing it on purpose, it is part of the disease.

Feelings can also be softened by certain self-care strategies. Journaling your feelings and daily relaxation techniques can be helpful. Identifying guilt triggers can also help. Does missing a child’s activity make you angry, with guilt setting in as you are later abrupt with your loved one? Maybe you need to find a Plan B so you can balance caregiving with your other roles. Respite is a great strategy to reduce guilt.

Are you feeling guilty about thoughts of sending Mom to a care home because you can no longer do it all? The thing you need to remember is that there is a difference between caring and doing. You may love. You may care. But at some point, sooner or later, you won’t be able to do. And you need to figure out a way to live with that. Those “unable to do moments” may come in increments; today you may need a respite day and decided to send your spouse to day-care for the day. A month from now, you may need to incorporate day-care twice a week in your caregiving calendar. All of that’s OK. The important thing is that you try and identify those points, those limitations you can’t get beyond, prior to actually being confronted by them.

So how do you do that? First, get support. Join a support group, if possible focused on the disease stage of your loved one. Participate in the AlzConnected online support caregiver guiltforum and read everything you can. Share your feelings and gain others’ coping strategies. It will help. Another tip, live in the day; focus on any positives from that single day. Look for a sign of your loved one’s remaining personality – perhaps a smile in hearing music – and connect with that. Prepare for, but don’t dwell on the future. Don’t just grieve for all the losses, but reflect on the good memories, maybe by sharing a photo album with your loved one and others. Let go of unrealistic expectations. “I should never take time off to enjoy a movie with friends when it upsets Dad so much,” is just not realistic in the long haul.

Bottom line is to listen to your feelings and know they are normal. Focus on the helpful and positive differences you have made in your loved one’s life, not on the things you didn’t do. And remember, as the disease progresses and you find yourself no longer able to have your loved one at home, that isn’t giving up. It is just a different way of caring.

About the  author: Stefanie is a family care specialist who blogs regularly for Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Stefanie, click here.

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  6 Responses to “Taking Care of You – Dealing with Caregiver Guilt”

  1. They are understood as unskilled and uneducated laborers working the actual planet labor industry.

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  2. I completely agree that it is so important to take time for yourself and give your brain a rest from the demands of being a caregiver. It can be such a challenge if you are still trying to run your own life. Let go of the guilt that is associated with being human and acting like it sometimes. It doesn't do you, or them for that matter, any good at all.

  3. I am so thankful for your comment of "Focus on the helpful and positive differences you have made in your loved one’s life, not on the things you didn’t do. " I have been doing just the opposite. Reminds me of Philippians 4:* Finally brothers what is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable — if anything is excellent or praiseworthy– think about such things." Thank you for your encouragement of caregivers. Your article gave me new perspective. Again thank you!

  4. “Welcome to Great Expectations Home Health Care Family! We have provided quality home health care to seniors in Washington, D.C., Northern Virginia and Maryland for over 20 years. While our main office is in Alexandria, V.A., we also have offices in Bethesda, M.D. and Washington, D.C. We are eager to become a part of your family and assist you with all of your home health care needs. Give us a call or contact us! We are honored to serve you. Great Expectations Home health care agency in Annandale, Alexandria (Old Town), Arlington, McLean, Woodbridge, Manassas, Fairfax city and county in VA and Prince George’s Cheverly, College Park , Baltimore City/County, Charles County, Bethesda – Chevy Chase, Gaithersburg, Beltsville, Greenbelt, Rockville, Hyattsville, Indian Head, Laurel, Takoma Park, Upper Marlboro and Montgomery in MD.”

  5. Support groups for spouses of folks with early onset, now in the later stages (ages 62-75 approx) of Alzheimer’s, do exist. There is a fantastic one in Bloomington, MN. All who come are very experienced spouses and meet informally every other week for 2-3 hours. If you need help getting one going in your area, spread the word at memory care facilities for advanced stages. We are a different type of support group – a parent dying is much different than your spouse dying.

  6. Mom lives with us (husband, son, Mom and me). Four of us in a two bedroom home. I feel guilty because they have sacrificed a lot and so have I. I feel guilty because I resent my loss of freedom. We can no longer go anywhere as a family….no birthday dinners, no activities of any sort. Mom refuses to leave the house and doesn't enjoy it anyway. I resent my two brothers who live out of state and still have their freedom. I love my Mom dearly but she has gotten so much worse that I can no longer enjoy time with her or have conversations with her. She sleeps most of the day, yet I cannot go anywhere because she might wake up and need to use the bathroom and she wants only me to help her with that, or she may try to walk around on her own and fall. She has no quality of life (in my opinion) and I feel guilty for wondering how much longer she has. Paying for nursing home care is too expensive and I don't trust them to take care of her as well as I can. So there is my pity party full of guilt. I'm not looking for a solutions because there are none. I just need to get through these days, months, or years. I know I'll miss her when she is gone.

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