Dec 232011

There are some topics on our message boards that pop up to surprise us, while others follow a pretty predictable cycle.

Every year, around the holidays, calls to our helpline and posts on our message boards indicate many family members notice the signs and symptoms of Alzheimer’s disease or advancing dementia. This is especially true of out-of-town family members who don’t see the person with dementia every day; they compare behaviors to previous times — and the difference may be startling.

The out-of-town family member may react by offering uninvited advice and opinions to family members who are dealing with dementia on a daily basis. And that’s when we see posts like this one:

“How dare she fly in here from thousands of miles away and say what our mother needs. I’m the one who does everything every day for her. Who does she think she is?!”

I think that it’s very natural to resent the advice of someone who is less aware of the daily needs of the person with Alzheimer’s and how much work it can take to meet those needs as the disease advances. But what’s harder to do is to accept that these family members are offering caregivers something very valuable – something that they cannot provide for themselves. They are offering perspective.

When you’re very close to something and looking at it, you see all the details. You can see the lines and veins in a leaf, for example, only when you’re close to it. You can see the effect of a slight breeze as it meets the leaf and moves it, even slightly. But what you can’t see, is the size of that leaf with respect to the whole tree — or a whole forest. For that perspective, you need some distance. And distance is something that daily caregiving just doesn’t allow.

So when the family gets together and someone offers opinions from a more distant viewpoint, it can help to try to see it as information that reflects a different perspective — one that can only be seen clearly when the viewer isn’t too close to the details. And sometimes, that view can even encourage caregivers to take a step back and incorporate additional resources they may not have considered before.

For the holidays,  a little perspective can be a wonderful gift.

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Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

  19 Responses to “The Gift of Perspective”

  1. Perspecive is very vaulable I take care of my grandmother who is in the late stages of Alzheimers, when you deal with them on a daily bases you dont see things that may work I sometimes find myself at a wits end and it takes those out side persepctives that spark new ideas how to deal with something. I cant say I have had that how are you feeling or issue ever near the holiday season all I feel watching someone I love is wishing there were a Miricle cure to give her back everything she has lost to this disease.

  2. “How dare she fly in here from thousands of miles away and say what our mother needs. I’m the one who does everything every day for her. Who does she think she is?!” We hear that all the time, in fact just yesterday when meeting with clients. This a great blog post and is an important read during the holidays when families are getting back together.

  3. And on the other hand, you can have the same sort of issue with relatives who DO live in town, and have seen the person with Alzheimer's on a more regular basis. Even though they live a few minutes away, it's very hard for me to listen to their advice when I'm the one who lives with my mother. I know they have good intentions…but good intentions don't help much when it's 2 a.m. and you're the one who has to help her back into bed.

  4. IMO, the most counter-productive and frusrating are the "I don't see any changes." The deniers.

  5. Those grown children who notice symtoms early, either because they live closer than other siblings, or happen to have shared more activities over the years with the parent, or simply because they KNOW, need to be cautious and have support nearby when revealing concerns to out-of- town siblings that a parent may have Alzheimer's or a related dementia.

    Sometimes, when you mention that you have noticed changes, siblings who live out of the area can summarily dismiss you, and acuse you of catastrophizing or looking for trouble. That can be very hard to take, on top of the concerns you have for your parent. You turn to a sibling, and sometimes they not only dismiss your concerns, but can criticize you for "making it up."
    The double isolation can be awful, as you are reaching out for help.

    Eventually, the truth becomes irrefutable. But until then, line up OTHER support systems BESIDES siblings before you embark on this journey.

  6. My husband gets up early in the morning & pulls all the sheets, blankets, etc off the bed. This morning he Pulled the curtain off the window. Sometimes he complains that the house is falling apart & the stairs are gone.. I had to take all the lamps, decorations, etc., out of his room, for safety reasons.. Sometimes this goes on for over an hour. Does anyone have any suggestions on how to calm him down or do I just watch him so that he is safe, until he goes back to bed? Sometimes it is very scary.. I am only 5 feet tall & weigh 105 lbs & he is 5'10" tall & weighs 170 lbs.

  7. I notice that alot when people come to visit my mom. It could be someone who sees her often or someone who sees her every few months. They all have something to say. I dont take it too seriously, I just think they dont know any better and I have an answer for everything. ( which I learn from day to day experience and from reading.) When my mom was first diagnosed I went right to the internet and instead of looking up what comes next, I looked up the entire process. All the stages, and what to expect from each stage. So when they say something to me, I just tell them what I read and try to make them understand in a nice way. They are hurting too and they try to help in their own way. The only thing I notice that I dont like much is that I can tell the guilt that some people have when they dont come as often as they should and then when they come they talk like they know it all… or when they tell me i should do this or do that or do it another way… I shut them up really quick… I tell them they are welcome to come and give it a shot if they think it will work their way because I could certainly use a break…. My mom is in stage 7, on hospice, bed ridden and down to 90 pounds. Doesnt recognize anyone, has to be fed and diaper changed… I am her 24/7 caregiver with a homemaker who comes for 2 hours a day..

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