May 302013
 
lotus pose

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.

This post originally appeared on www.alzheimersblog.org.

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Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

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