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jewelisfabulous

Is this dementia, selfishness, or something else?

11 years ago

My Mom is in her late 80's and is a spectacular example of excellent physical health in an elderly person. She also has her doctorate and taught university until she was in her early 80's. Because of her love for traditional continued education, it's been a disappointment for her that most of her children and none of her grandchildren (except one) have not pursued their bachelor degrees.

However, her only grandchild (my son) to matriculate received his bachelor's degree in engineering last month. None of the other grandchildren are in college. Even if they started on their degree(s) right away, it's unlikely she'll live to see another grandchild graduate given her age.

Through-out my son's senior year, she expressed enthusiasm about attending commencement in May. A week before graduation, she joyfully informed me that she'd arranged a car pool with other relatives to attend. Then, ONE DAY before, she called me to say she wasn't coming. The other relatives came without her and were also puzzled as to her about-face.

Her shoulder and hip hurt, she said. She was depressed at being old, she said. She didn't want to be away from home for so long (3 days), she said.

However, when I called to check on her the next day, she was cheerful as all get out and said she'd just come in from washing and waxing her car in the driveway!

A few days later, she called to ask if I would accompany her on a cross-country trip to attend a family reunion in July. Her shoulder and hip were fine, she said. She was feeling great, she said. The reunion would last 4 days, she said.

If that wasn't upsetting enough, she also has expressed ZERO interest in my son's commencement or what he's doing now that he's graduated.

In addition to this episode, my Mom has demonstrated some forgetfulness and confusion periodically over the last two years. For example, she mixed up the dates of my upcoming visit to her 3x now, and my nephew who sees her for lunch about once a week has reported she is repeating the same stories or comments 7-8x during the same lunch.

So, is her weird "turn about" about attending commencement a result of dementia? Or is was simply selfishness? Or, is something else going on?

(I did ask her to explain how she could justify attending the reunion when she didn't attend commencement, and she couldn't. Her response was, "I guess I don't know.")




Comments (22)

  • 11 years ago
    last modified: 11 years ago

    I'm sorry that you and she are going thru this. But if this is what you suspect, start by not taking it personally or expecting her to act rationally. Just don't expect it. If you can get over that hurdle, you can make your life much better. Don't fret, don't ask what she meant don't try to analyze her words or actions, and don't take it personally.

    Good luck. Here's an old thread. http://ths.gardenweb.com/discussions/2258768/a-discussion-about-dementia?n=85

    jewelisfabulous thanked sushipup1
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  • 11 years ago
    last modified: 11 years ago

    Based on what I saw with my MIL, this behavior sounds like it could be a result of dementia. I would urge you to be proactive in dealing with it. Cognitive decline exhibits in strange, surprising ways. And the person can hide it for years with lies, excuses, etc. The problem for you is that you have no way of knowing what is going on within her and at her house, possibly what is going on with her finances, etc. Thinking back to things that happened 15 years ago, I now realize there were early signs from my MIL that something wasn't quite right. My MIL was in complete denial that anything was wrong with her, and it made everything so much worse.

    I don't know what your relationship is like with your mother. Would she be willing to take a home test like this:

    Home test for Alzheimer's from the UK



  • 11 years ago

    Thanks, all. I just returned from a multi-day visit with her. There is definitely dementia or a cognitive issue of some kind going on. Her short term memory/retention is shot, so she repeats questions/comments/statements multiple times -- sometimes within seconds of the last time she said it. She had a couple home repairs done during my visit (that I arranged) and couldn't seem to grasp what was happening even with multiple explanations. At this point, my guess is that she may only vaguely recall the repair being done, if at all.

    Her long-term memory, however, is intact and she can still do some planning, but it's tenuous. I found it amusing that she's just as much of a strategist and "shark" when we're playing our favorite card game as always. I guess those skills come from a different part of the brain.

    On the advice in the old thread linked above, I refrained from saying anything like, "You've already told me that" or "Remember?" or "We just talked about this" or similar. I was proud of myself for being patient while hearing the same thing over and over again. I only reacted once, on the last morning, when I was trying to get ready for my flight home. I'm not a morning person anyway, it was super early (for me), and she repeated one thing 5 times, another thing 4 times, and the last thing 3 times. At that point, I said that she'd already told me! Multiple times! She just got mad and said she hadn't and that I was the one who'd been repeating things. :)

    Since being home, I researched her meds and discovered that the side effects for one are "short term memory loss and confusion". I don't think it explains the entirety of her forgetfulness, but may be the cause of some of it. So, I emailed her to suggest she speak to her doctor about it. I know this was a futile effort since: a) she doesn't believe she has any memory problems; and b) even if she recognized she had a problem, she'd forget all about my suggestion by the time her next appointment rolls around. But, I felt better giving her "warning shot across the bow" before touching base with her primary care practitioner to outline my concerns. Unfortunately, my experience talking with this person in the past about my Mom's memory issues wasn't positive (it's a small town and this person, who's really a P.A. and not a physician, isn't open to receiving info about her patients from their family members).

    Going forward: what's the next step? My Mom can still bath herself, dress herself, remember to take her meds, pick up around the house, prepare meals (if she has to), make calls, conduct herself normally in public, and know where to find info. She *thinks* she's still adept at running projects -- household or volunteer -- although her brain is a sieve when it comes to retaining the details. She is extremely independent and will not voluntarily let anyone help her with medical or financial matters.

    Graywings123 -- your comment about how people can hide their condition for years is right on. And, as I read in the book Still Alice, the smarter the person is, the more "work-around" skills they have and the longer they can keep their condition from becoming apparent to others. And, no, because she is so independent and in denial, she won't take any kind of test from me. She'd probably even fight the P.A. or a neurologist about it.


  • 11 years ago

    Do not rely on your mother to mention the medicine to her doctor. Call her doctor, being aware without POA they can not give you her info, and tell them that you noticed she was confused and having short term memory problems.

    Statins for high cholesterol send me into lala land and I have severe memory problems even on low doses. I would rather die of a heart attack or stroke than not be able to function day to day.

  • 11 years ago

    Does she still drive? Who takes her to the doctor appointments?


  • 11 years ago

    Since I called her medical provider once in the past about this same issue (a nurse practitioner -- it's a small town in no-where-ville, so that's about all they can get around there for standard services) and was totally blown off to the point that I wanted to climb through the telephone line and strangle her, I laid out my concerns in a letter this time. It goes in the mail today. She may be able to ignore my calls, but I think she'd have a harder time explaining how she ignored documentation in writing. I acknowledged that HIPAA prevents her from revealing anything about my mom's condition TO me, but it doesn't prevent her from receiving the info unsolicited FROM me. We'll see. I'm guessing she'll ignore it.

  • 11 years ago

    Health care professionals won't give you the time of day unless your mother specifically gives them written permission to discuss her information with you. I did the same thing you did for years - a one-way conversation with the doctor, telling him what I thought he needed to know. I don't think your mother's NP will ignore the information, but it is possible she already knows that your mother is impaired.

    Some things you need to think about: Does she drive a car? Do you know about her finances? Does she have any serious medical issues that need to be dealt with?

    Until and unless you can get your mother to agree to have you involved in her personal situation, there is very little you can do unless she wants you to do it. People will give you advice about taking away her car keys or otherwise taking control. Truth is, that is near impossible until she is declared incompetent, and that is a high bar to cross.


  • 11 years ago
    last modified: 11 years ago

    ** there is very little you can do unless she wants you to do it**

    You're spot on with this. How I wish my Mom was more "lead-able", but she's not. Very stubborn, very inflexible. My brother tends to be more effective at dealing with her, but she'll fight even him on this. We're hoping to establish a conservatorship, but it'll be a good while. She's able to put up an excellent front with people who aren't trained to ferret out or spot inconsistencies in her memory. And, to be fair, like with most dementias, she has many days where she's still super sharp. We do have several people outside the family that can attest to her forgetfulness, though, if need be. Just hate to go that route; would be so much easier if she would volunteer to seek help.

    Graywings -- since you've been through this with your MIL, what is your story? Did she ever voluntarily seek help or voluntarily give POA for health or financial matters? Was there a defining moment when your husband's family had to go against her wishes in order to protect her?

  • 11 years ago

    Stubborn and
    inflexible - I hear you. My MIL feared
    change of any kind, and it grew worse as she grew older. We dealt with her dementia for over a
    decade. She would ask for help with
    narrow areas of her life, but would not let us in to help beyond that. The first serious issues were minor car
    accidents, which, because she needed a new car, revealed her finances were in
    bad shape due to reckless spending with credit cards. Every interaction with her was difficult and
    frustrating. She was secretive and could
    make up a lie at the drop of a hat.

    She signed papers giving my husband power of attorney in the event that she
    became incapacitated, but professionals told us that essentially if she knew
    what day it was and who the President was, we were not going to be able to
    force her to do anything she didn't want to do.
    She was adamant that she would not leave her house, but she did allow my
    husband to take over her finances, pay her bills, and give her an allowance for
    food, hairdresser, etc. So for years, we
    just waited for phone calls at any hour of the day - from a problem with her TV
    remote, to she fell and hit her head, or a call from the hospital saying she
    was there. Her neighbors were great, but
    they could not understand why we were not placing her in a nursing home. But we couldn't do it against her will. About once a year when she would visit her
    sister for a few days, I would enter her house and clean it - you can't imagine
    how she was living.

    Eventually
    it all came to a head this Spring. She
    was 88. Her dementia got a lot worse,
    she had never taken good care of herself, and both body and mind were going. She started going to the neighbors' house
    late at night to ask what time it was. As
    the family was coming to the decision to force her from the house - temporarily
    having her stay with her much-younger sister - the neighbors called Social Services about her
    being an abused/neglected elderly person. That worked to our benefit because the social
    worker visited her at the sister's house and told her she could not live alone
    anymore. It took the pressure off the
    family because she could direct her anger at the neighbors (who had been saints
    to help her for years). After an
    emergency room visit for a heart problem, where she "went off" at the staff,
    we took her to her doctor and he prescribed an anti-psychotic medicine which calmed
    her, though we had to sneak it into her food.

    jewelisfabulous thanked graywings123
  • 11 years ago

    cont.

    She moved in
    with us, and began going downhill quickly.
    I think that once the fight to stay in her house was over, she lost her
    will to live and stopped eating. As she
    grew weaker, we began home hospice and she died a week later.

    I tell
    people that my MIL was a cautionary tale in how not to grow old. Dealing with her was a matter of waiting for
    the next problem to arise, and realizing how limited we were in being able to
    help her.

    jewelisfabulous thanked graywings123
  • 11 years ago

    Just a bit of knowledge; Nurse Practitioners and Physician Assistance can not practise alone. They have to have an actual physican over them. This is the person you need to speak to if the NP or PA is not listening or helping you. They can listen to your concerns without giving out personal information to you about a persons healthcare. Good luck. It's a tough row to hoe for sure.

  • 11 years ago

    Thanks, Krystal. I'm not having any luck finding out who the physician is that this NP is reporting to on the medical center's website. Is there any kind of registry (on-line) that you are aware of?

  • 11 years ago
    last modified: 11 years ago

    Jewel, just call and ask. Don't mention a patient name. They should tell you.


    But could be that she works for "staff" in a large practice?

  • 11 years ago

    Can you talk to your mother about planning for the future -- more as a just in case than suggesting that she needs help now? In my view, everyone should have at least one other person listed that doctors can talk to. Even better would be to add a medical power of attorney that at least gived the named person the ability to make decisions -- decisions which can be as general or as limited as necessary. Do you belong to Costco? Their website has a computer program called WIll Maker. I used it to prepare some documents for my dad (he wound up not using them) and had it available when a friend's mother would up in the hospital needing surgery and the doctors were telling my friend there was a better than 50% chance her mom wouldn't make it. If her mom had difficulties or didn't make it, my friend would be in a terrible position. You don't want to go there.

    Both my mom and MIL had Alzheimer's and my dad had another form of dementia caused by heart issues. Don't count on being able to get conservatorship until you are past the point where your mom is likely to have had significant problems, injuries or losses. Besides that, taking your mom to court to take away her control and her dignity is not something you or she really want to have happen. I would strongly encourage you to talk with her while she is still competent and get her to at least list you and/or your brother on the medical information release forms so the doctors have someone they can talk to if she should fall or be in an accident. We all need that. If you can get a power of attorney, that would be much better. The power of attorney can be a way to approach discussion of end of life choices too. It will really help both of you if you know what kind of care she wants and her preferences both in terms of medical treatment and in terms of what happens with her property, a funeral, etc.

    These are hard things to deal with, but time is slipping away from you and you don't know how much time you have until your mom may not be able to help with these things and you are forced into the nightmare of taking away her control and trying to guess what she would want. If you know what she wants, you have a basis for making the difficult decisions. I cannot overstate how important that is. I lost my parents less than 5 months apart. That was difficult enough, but at least we all knew there was a plan for how to deal with all the unplanned things that kept coming at us. I know my dad feared that and wanted to stay in control, but in the end it as especially reassuring to him that I knew and he then saw me honoring his wishes and protecting them.

    Please try. For both of you.

    jewelisfabulous thanked lascatx
  • 11 years ago

    It's important that your Mom should see a gerontologist or neurologist who can evaluate her for dementia. Do not rely on just a mini-mental status exam which her PA or MD can give her for this type of diagnosis. She should have a full physical with blood work, an evaluation of her medications, probably a home visit and possibly an MRI or CT scan. There are numerous different types of dementia, Alzheimer's disease the most common, followed by Vascular Dementia (due to small strokes), Frontal-Temporal Lobe Dementia, Parkinson's Disease and Lewy Body Dementia. At age 80 there is some expected normal cognitive decline. My Mom had Alzheimer's for 13 years. In the early stages folks are very good at compensating for their cognitive deficits. Her activities of daily living may be intact, bathing, hygiene, dressing, etc. But you may need to look deeper at her independent activities of daily living. Are her bills being paid? How old is the food in the fridge? Is she taking her medication on time and in the correct dosage? Is she isolating herself? Her response to not going to your son's graduation may have been a compensatory mechanism because it may have been too much for her and she may have been overwhelmed by being at such an event especially if she is aware of her memory deficits. Look into going to a Adult Children Support Group, you can go the Alzheimer's Association.org for a local listing of support groups. I have been facilitating one (as well as a Spouse's Caregiver's Support Group) since 1985. Get the 36 Hour Day it's the Bible for Caregivers of a person with dementia.

    ljsphd

    jewelisfabulous thanked ljsphd
  • 11 years ago

    The problem is that my Mom won't willingly go to a doctor for these kinds of tests. Kicking and screaming (and disowning me in the process) is what I could expect if I force the issue. And, I have to wonder, what good would it do at her age to be officially diagnosed given that there is no effective treatment and no cure? She knows she has a problem even if she will hardly admit it to herself. I actually think it might be easier to get a POA for health and financial matters if we go about it from the side somehow versus head on as she tends to dig her heels in. Does that make sense?

    The deeper issues of bills being paid, food expiration dates, etc is definitely something I can keep an eye on and I appreciate the support group recommendations.

  • 11 years ago

    Yes, it makes perfect sense -- and if she knows something is not quite right, you don't have to hit her over the head with it. You can honestly say that someone you met talked about the documents their parents had prepared just in case something happened and the parents needed help and you were wondering if she had anything or had thought about anything like that. Or you could tell her you came across some info on the internet about documents everyone should have -- like a living will and a health care power of attorney (AARP has some info on their website (look under home & family, care giving and legal tabs -- in that order). Let her know that you want to be there if or when she needs you - and you want her doctors or otehrs know who to call and be able to talk to you freely if something should happen to her. She may not realize that the legal limitations on doctors or hospital sharing informaton have changed and that it could make her getting prompt care more difficult. In fact, if you do not have some of the documents, a hospital is likely to want her (if conscious) to sign their forms on admission so she has something in place -- and their forms are or their purposes and may not do what she would prefer if given the chance.


  • 11 years ago

    I agree with you about getting POA for Health & Estate. Yes there is no cure for Alzheimer's disease, but there are medications which will help manage the symptoms. Also the diagnosis is important for care management. Different types of dementia have different sequelae and may need different behavioral interventions. My Mom lived in a rural farming area in Kansas and people kept an eye on her. Siblings would visit her weekly. When we felt that she needed a more defined diagnosis, we blamed it on the doctor. "It's out of our hands the Dr. wants you to have these tests." When it was time for placement because she wandered in her nightgown across a freeway to "go home" to the old farmhouse where we used to live, we blamed it on the doctor. Yes there was kicking and screaming when she wouldn't bathe at home. It became evident that she could no longer live by herself. I'm not trying to give you a negative picture, but sometimes you have to use some tough love if you think that your Mom cannot live independently. BTW you are doing a great job. I hope you are taking care of yourself.

    jewelisfabulous thanked ljsphd
  • 11 years ago

    I'm sorry if I'm over-stating, I just can't go back and reread this whole thread. People, especially the medical profession, are too quick to give an easy diagnosis of Alzheimers to every sort of dementia or mental problem that an elderly person presents. My husband was finally diagnosed with PSP - Progressive Supranuclear Palsy. Of course, the first diagnoses were Alzheimers and Parkinson's. I knew right away that DH didn't have Alzheimers but the doctors wouldn't believe me. It took a new-age neurologist to recognize what was really wrong.

    As you totally recognize, your Mom has a problem and needs help. The kind of help she needs first is from you, but a close second is proper diagnosis. I especially like some of the suggestions others have made to get her to a doctor - hopefully a good neurologist at a teaching hospital. Finding a good-enough doctor won't be any easier than getting her there.

    My best wishes for success, Kate.

  • 11 years ago

    Don't think anyone has mentioned it above but have your mom have blood tested for thyroid problems. There has even been a movie where a woman was in mental hospital & new dr. came in & noticed her symptoms & it was her thyroid. May not be the problem but it is something easily treatable if it happened to be.

  • 11 years ago

    ljsphd, using that "tough love" and forcing a parent to do something isn't possible until the point your mother reached (wandered in her nightgown across a freeway to "go home"). My mother-in-law didn't get into a bathtub for the last 10 years of her life except for twice when I all but strong-armed her into it. Not bathing is not sufficient for proving incompetency.

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