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.

  18 Responses to “The Gift of Perspective”

  1. 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.

  2. 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.

  3. “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.

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

    • I can relate… My uncle, (my mother's brother) He comes in and if shes having a good day, he says, "she's getting better, its a miracle"… I explain briefly with hard facts, but if he continues to insist then i just let him believe what he wants to believe because if I dont it will turn out to be a 2 hour debate (and he gets the last word anyway,) and I'm too tired for that… i guess it helps him deal with it better.. i also think the denial helps him deal with his own aging process… he's worried that he's going to get alzheimers too and that eventually we'll be watching and analyzing him the way he analyzes my mom, so i dont really argue with him… Plus… you cant really argue with an old Italian man… Its hopeless…..

    • I agree. Then it is the "shoot the messenger" syndrome. The courageous do not deny, and so you know you have courage facing the situation. Eventually, even the deniers get it.

    • Imo they didn't know the person at all. If they stayed around long enough to notice changes they wouldn't say something so stupid.

  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.

    • Been there, done that and have the T-Shirt. So sad when a family member that is not around at all thinks absolutely nothing is wrong. It HURTS!

    • Good point Karen, but I doubt if you would find any doctor that would pbescrire HRT to a woman who had breast cancer or in a high risk category (hope not anyway). Women with the following conditions are not candidates for HRT: * Blood clots or clotting disorders * Breast cancer * Gall stones or gallbladder disease * Liver disease * Other estrogen-dependent cancer (such as endometrial or ovarian cancer)

  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..

    • God Bless you, Maria. I am an RN who works with dementia patients & it takes a special person to be able to deal with this day after day. Seek Respite services in your area…..many nursing homes offer this esp during the holidays.

    • So sorry Maria, sounds like my same story. It's the saddest longest goodbye there ever is. God bless you for being there for your Mom. Dad said my name 2 days before he died. It's not easy afterwards either. I have PTSD from the whole ordeal. I have never seen such a horrible disease in my life. I sold my home to move in with my Mom and Dad to help her and she died unexpectedly 4 moths later. Being their only child, (53) it was all on me. But I would do it all over again in a heartbeat.

    • I realize that HRT may be good for many women, but anoyne who is thinking of it should take everything into account, including the greater risk of breast cancer. After having BC, my oncologist/gyn told me that HRT for me, (and anoyne else in a high risk situation), should definitely not be taken.

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