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Alzheimer Awareness Week- Nurture Independence
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Helene Bergman, LMSW posted:
Today, July 12th, ends Alzheimer Awareness Week and it was more than coincidental that it coincided with July 4th, Independence Day.
Alzheimer's Disease often compromises ones independence even at its early stages. Initial symptoms such as short term memory loss or disorientation often concern family members and friends enough to precipitate their involvement. This begins the transition of 'independence' into 'interdependence' and is the most difficult phase as caregivers are challenged to balance their loved ones 'autonomy' with their need for 'protection'. At this time there may be a tendency to 'over protect' with families assuming responsibilities that the individual may be able to still manage independently. This can result in a 'learned helplessness' and lower ones sense of self esteem and control. It is recommended that a differential assessment always be made: that is, evaluate what your loved one can maintain control over and then assist with what he/she cannot manage effectively. This phase of 'interdependence' will gradually change as the disease progresses but the individual's strengths will be nurtured and his/her dignity retained.
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millie828 responded:
I'm interested in participate in a study about Alzheimer's . my mother's side of the family all 7 brothers and sister had it including my mother started with my grang mother, and now in my generation we are finding also Alzheimer's . I know is genetis and in my family looks is the only one . thank Millie
 
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Byroney_WebMD_Staff replied to millie828's response:
Dear Millie828,

I'd contact the Alzheimer's research society and let them know of your family history and interest. You might also want to check for any medical research facilities or hospitals who are doing research on Alzheimer's and ask about participation.

Best wishes to you and your family,

Byroney
 
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MacGreggor responded:
I am just beginning my search for info as I enter into the world of challenges with this disorder. Unfortunately, in addition to the Alzheimers with my mother, I am dealing with my father who is in the Autism Spectrum. They are both nearly 70. Both are in the stage of "interdependence," but for different reasons. They are both completely in control of their own finances, and technically able to make all of their own decisions. Unfortunately, neither is able to care for themselves without assistance. Neither one of them has a definitive diagnosis yet - after researching on my own, it appears my mother is already in stage 4-5 of Alzheimers, and my father's ASD symptoms are worsening now that my mother can no longer help him compensate for his disabilities. (We have several other confirmed diagnosis of ASD in our family, and my father is a classic High-Functioning case, although he has never been formally evaluated or diagnosed. He does not recognize these symptoms in himself.)

When I reallized how bad things were with them six months ago, I left my job in a different state, and moved to be near them. It has been a difficult transition, but at least now I am living next door to them. My goal is to be near to assist them more, but they are still in a stage where they deny they need any help at all. (Up until a month ago, my mother was still driving a car!) Due to my father's communication deficits and rigidity, it is impossible to have that "frank discussion" about their needs. I am very used to working with people of various levels of ability with a variety of behavioral challenges, and there is nothing they are doing at this point that stresses me out, or I feel I cannot manage. I am striving to treat them with the dignity and respect that they deserve, but have not been effective in influencing any significant improvement in their circumstances. For example, my mother often will not eat during the day, and when I try to encourage her to eat at regular intervals, she gets upset saying she will eat when hungry (but she is never hungry, and can go more than 24 hours without eating.) My father gets explosive because I have upset my mother (he cannot handle the stress) and obviously, I do not feel I can "force" them to do the things they refuse to do. I have not been successful in persuading my father to let me take my mother in to see a neurologist for a diagnosis so we can get them more help. He cannot accept that she is not the same person she has been for the last 50 years, and cannot do what she has always done. He keeps saying she is fine, and I am the one causing all the problems. (I somewhat force him to acknowledge them, which he does not like.) He denys that her behaviors as as deficient as they are even when provided with concrete evidence, and he is still the one in charge of them, and makes all of their decisions. He will not consider letting any of us children have any input into decisions, any type of legal authority, and will not seek professional counsel outside the family.

I am a behavior analyst by profession, and bound by a certain code of professional ethics. I am beginning to worry that if they will not allow me to help them, and will not seek help elsewhere, and something happens due to my inaction when I know how bad the situation is, I could be held liable in some manner.

I am really at a loss for how to proceed next, and any information or guidance anyone can provide would be greatly appreciated! (especially with the legal ramifications for family members if elderly people harm themselves due to not having adequate care.)

Thank you so much!!!
 
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cjh1203 replied to MacGreggor's response:
I'm sorry for the situation with your parents. It sounds very difficult, especially since you have made such a major change in your own life in order to help them.

Because of your training, I wonder if you're trying to deal with your parents rationally, when they aren't able to process the logic in what you say. I don't know much about ASD, but people who have Alzheimer's often can't be reasoned with. This is an example from my family: My uncle has dementia, as well as fairly advanced emphysema and COPD, and he had throat cancer 7-8 years ago. He continued to chain smoke, and being told by doctors and his wife that he had to stop smoking for his health didn't do any good at all -- it just made him angry. A new doctor told my aunt to put a nicotine patch on him and tell him that if he smoked while wearing the patch, it would make him very sick, and he hasn't asked for another cigarette in the three or so weeks since then. After years of people trying to reason with him about smoking, all it took to actually get him to stop was telling him that if he had one, it would make him sick. He never even questioned it.

Instead of trying to talk your mother into eating, maybe you could prepare something, set places at the table for the two or three of you, and just say "Lunch is ready", and guide her to the table to sit with you. Make it a simple routine, rather than a discussion about how she needs to eat more. Have you tried getting her to drink Boost or Ensure? Maybe if she likes milk shakes, you could freeze them and then run them through a blender, or add ice cream to them.

As far as getting her to a neurologist, instead of trying to convince your father that it's necessary, what about just making an appointment and telling them she's seeing a new doctor, who just wants to check her out and make sure she's healthy? There's no reason to go into a lot of detail.

Your parents are both obviously in denial about your mother's deteriorating condition, and I think that's something that every family affected by Alzheimer's has to deal with. Trying to convince them that she is showing signs of dementia is probably only going to upset them. They don't want to face the reality of the situation, and they will resent you for trying to make them face it. They will probably be more accepting if it if they hear it from someone like a doctor.

I can't imagine that there would be any legal ramifications for you whatsoever. For one thing, you're not treating them professionally -- you're a family member. To get into legal trouble, I think it would take way more than having a hard time convincing them to eat or go to a doctor. The only times I have ever heard of family members getting in legal trouble for lack of care of another family member is when they intentionally abused or grossly neglected that person. Every family affected by Alzheimer's goes through the same thing you are, where it seems almost impossible to get the person to do what's necessary for her health. It's one of the most frustrating parts of the disease.

One of the best things you can do for yourself is to find an Alzheimer's support group. Besides the emotional support, the people in the group can tell you how they dealt with some of the issues you're dealing with now, and will be facing in the future. There's nothing like the voice of experience.

My best wishes to you and your parents.
 
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cjh1203 replied to cjh1203's response:
Another thing that might help, with eating as well as other things, is not asking her open-ended questions. For instance, instead of asking her if she's hungry or if she wants to eat, just say "I'm making some sandwiches. Would you rather have peanut butter or ham?"

Often, when you ask a yes or no question, the answer you get is no. If you skip that part and just present it as something that's happening, but give her some say in it, a battle is less likely.

You could try the same strategy for other things. For instance, instead of asking if she's ready to take a shower, tell her you turned the water on for her and you'll lay out her clothes -- would she rather wear her blue shirt or her red sweater?

Of course, there's no guarantee any of that will work, but it does seem to work for us, more often than not. I think the key is trying to remember that she probably isn't capable of making proper decisions on her own, so the more you make for her -- while giving her a couple of choices, when possible -- the easier it is for her, and the less overwhelmed she'll feel.
 
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An_190716 responded:
I have a question about supporting independence with my mother in law. She I believe is a moderate Alzheimer's patient. She lives alone in one part of the state of PA and I in another. I was given Power of Attorney over her because her son, my husband is gone away for a year. I go to visit her every other week or no more than 7to 10 days apart. We do grocery shopping when I come, make sure all of her bills are paid and I try to stimulate her as much as she will allow me.

My mother in law is stubborn about what she can do and does not what anyone to come in and help with her care like an in home care agency person. She has friends in her home town and some in law family members. They don't really care give her only call and invite her some family functions. One member of the family will take her to play bingo and she still plays bridge every other week. Her license has been taken away from her doctor. She refuses to ask for help when she needs food or she needs to go to the bank. I have the key to her van. She gets really upset with me or her son or her grandchildren (who all live in different state's) because she does not have the key. She says she needs to have the key because if someone wants to take her to the store she wants to use her van. The truth is anyone who would take her to the store or errands have their own cars and would want to use there cars.

I am really concerned because I live 3.5 hours away and I can't be there all the time. I am looking into some outside help from an in-home care agency but she gets really mad at me and says no way. My mother-in-law holds the purse strings. I am trying but I am really at a stand still. I really think she could use the help because her sun downing is really bad. She repeats herself every 5 minutes. I am concerned about her taking her medications, cooking or eating for that matter. Her daily schedule is: She gets up early, eats her breakfast (coffee and muffin, Sundays she eats a bigger meal), turns on the TV for company, reads magazines, and will play solitare on the computer for hours. She may or may not eat lunch. Has a drink at 4pm and then starts to watch the news and maybe will eat some dinner. She loves soup, steak and veggie, makes soup sometimes. She can still bath herself, dress herself and takes care of her hair. Her sister in law takes her to have her hair cut once every three weeks. What should I do because I still want her to be independent like you write about. She does wear a emergency necklace and I have numbers of a neighbor, a friend and one in law. I have an emergency book by the phone with all instructions of who to call and doctors etc.

I am still very worried and fear that she will hurt herself if she should forget to turn off the stove etc.

Thank you for reading.
 
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cjh1203 replied to An_190716's response:
You're in a difficult situation, since you don't live that close to her. It's very kind of you to take on this responsibility in your husband's absence.

It definitely sounds like your mother-in-law should not be living alone. If the decision is left up to her, though, she will never allow any help. She's not capable of making the best decision for her own well-being.

I would suggest letting her doctor know your concerns, and contacting the Alzheimer's Association in her area to see what resources they can recommend that might help you.

My aunt, who is the caregiver for my uncle, who has Alzheimer's, recently hired a case manager who specializes in patients with dementia. She's an RN who works closely with my uncle's doctor, and having her on board is really helping. My uncle likes her very much and he seems to accept what she tells him. After two years of getting very angry at the suggestion of bringing in someone to help my aunt, he was fine when she said that my aunt needed someone to come in every morning to help him bathe and dress -- she told him that's the only way he would be able to continue to live at home.

Sometimes, Alzheimer's patients are more willing to listen to someone outside the family, especially when that person just says, "this is what has to be done." When it's a family member telling them something like they can't drive, or can't live alone any more, I think they see it as mean people trying to ruin their lives.

Best of luck to you -- this sounds like quite a stressful situation.


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