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Topic: Aging Parents Anonymous

Forum: Complementary and Holistic Medicine and Treatment — Complementary medicine refers to treatments that are used WITH standard treatment. Holistic medicine is a term used to describe therapies that attempt to treat the patient as a whole person.

Posted on: Mar 21, 2011 06:09AM

althea wrote:

Hi.  My name is Althea, and my mom is 83 years old.  Her health is failing, and I'm getting more involved with day to day matters with each passing month.  If I had to choose a tipping point, I would say things really took a noticeable turn for the worse July of '10 when she took Cipro for a urinary tract infection.  I've been with her to every doctor visit since then, and I've been her personal chef for dinners since last summer.

I am starting this thread in the Alternative and Complementary section only because this is where I put most of my own posts.   I envision this thread to be an 'aging parent support group'.  Things that concern me most are the lengthy list of prescriptions her doctors prescribe and the quality of care she receives.

I realize this is off topic.  I know many other bc sisters have aging parents and I think it makes sense for us to have a thread to discuss our concerns and share our experiences.  

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Mar 21, 2011 06:27AM althea wrote:

Ok, I get dibs on being the first to post.  My first big question is this:  when someone is taking several medications with side effects that cause mental confusion and forgetfulness, how does anyone know if it's side effects or dementia when forgetfulness is occurring? 

Listen with a questioning ear. quote from George Ohsawa, founder of macrobiotics

Dx 12/22/2004, ILC, 5cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 21, 2011 06:42AM Member_of_the_Club wrote:

When my mother started getting forgetful I took her to the doctor for a medication review.  This is a huge problem and sometimes elderly people take too much of a medication, due to forgetfulness, and it becomes a bigger problem.  If your mother has access to a geriatrician that would be a good start, they have particular expertise in how the elderly can react to medication.  Another possibility is depression, which can cause confusion as well.  Also minor infections like UTIs.

Turns out my mother had brain cancer, a possibility I wasn't entertaining when considering dementia versus meds. 

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 21, 2011 06:42AM Esti wrote:

Hi Althea,

I sold my home almost two years ago so that I could move into my parents' home to take care of my mom who has late-stage Parkinsons with dementia. My dad would take care of her while I was at work, and things were going fairly smoothly until I was diagnosed last June. My sister and two brothers don't involve themselves (they've all told me they 'can't face it').

I took a leave off work, but I still took care of my mom which is a full-time job (she's in diapers and I need to make sure that I mover her in bed and walk her to keep her limber).

Because she would see me in scrubs half the time (I'm a lab tech) in her dementia she thinks that I'm her nurse. It was funny when I lost my hair because she would see me either bald, in a wig, hats or scarves and she'd ask me if 'that's the fashion' (I'd say yes, I'm bald because it's in fashion these days!)

It's difficult, I don't know how I did it through chemo, but I always said that it would be involved with my parents' care (I even said 'over my dead body' not thinking I'd be tested on that!). I also consider it an honour to do it.

Jenny

The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep.

Dx 6/1/2010, IDC, 2cm, Stage IIIa, Grade 2, 2/2 nodes, ER+/PR+, HER2-
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Mar 21, 2011 06:42AM Member_of_the_Club wrote:

I don't mean to scare you about the brain cancer.  Pretty rare possibility.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 21, 2011 07:18AM althea wrote:

Jenny, you're providing an amazing level of care.  Kudos to you!  I plan to do as much for my mom as I can, and I don't know where my 'limit' might be.  I'm five years out from chemo, and frankly I was more tired AFTER it all than during.  I still fizzle out easily, but I've been feeling progressively better for the last year and I'm glad I can rise to the occasion of lending a hand with my mom. 

I wonder if you're aware of how your mom's dx of dementia came about?  To my mind, my mom is dropping clues daily that she's not in possession of all her marbles anymore.  Yet, her doctor doesn't seem to notice.  

Member, I almost didn't see your first post and wondered what the heck you were talking about.  I'll be so glad when the programmers straighten out the navigation gizmos.   I'm so sorry your mom was dx'd with brain cancer.  I did some searching months ago for a geriatric specialist.  I googled gerontologist and geriatrician.  If my city has any, I couldn't find them.  

Listen with a questioning ear. quote from George Ohsawa, founder of macrobiotics

Dx 12/22/2004, ILC, 5cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 21, 2011 07:49AM althea wrote:

Here's my next question -- what is the significance of an 'annual comprehensive exam?' Last week my mom received a reminder of her 'annual' exam.  Since I accompany her to every visit, I don't need to rely on her memory to know when her visits are scheduled.  This appointment was not communicated to us in advance.  The appointment we KNEW about is next week.  I tried to reschedule, but they refused to do so without charging a fee.  She's been going to the same doctor for THIRTY+ YEARS.  She wasn't feeling great last week anyway, so I didn't quibble, and agreed to the appointment.  Keeping that appointment was hugely inconvenient, and that was just the beginning of my annoyances.  

The substance of her 'comprehensive' exam included:  recording her weight, pulse, bp, temperature.  No review of medications was conducted.  The list of questions was a bit longer than a 'followup' visit, but not by much in my estimation.   An EKG was done. When the doctor finally entered the room (around 4:30 for a 1:30 appointment), he did pull out his stethoscope and listen.  There were some brief questions and answers exchanged.  And that was IT.  No labs.  No bloodwork, no urine samples, NOTHING for labwork was ordered.  There's been a variety of tests he conducts/orders when it's a 'followup'.  I hope someone can please explain to me what on earth is 'comprehensive' here? To describe it as basic seems like a stretch!  

I'm really in a quandry over this.  I've already ranted elsewhere about this 'comprehensive' exam.  Usually I rant, I feel better, then I let it go.  This one still bothers me.  I think I can let it go if I rant a time or two more about it, but part of my brain is wondering if I *should* let this slide.  

Listen with a questioning ear. quote from George Ohsawa, founder of macrobiotics

Dx 12/22/2004, ILC, 5cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 21, 2011 07:56AM Member_of_the_Club wrote:

Your mom needs a new doctor.  Seriously, that sucks.  A new doctor would have to review your mom's meds so you would get a new pair of eyes for that.  

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 21, 2011 08:03AM, edited Mar 21, 2011 08:04AM by althea

Member, I live at the end of the earth.  I'm not sure access to someone better is available. 

My question remains:  what makes a 'comprehensive annual exam' different from a 'followup'.  Her meds were reviewed last month at a followup visit.  

Listen with a questioning ear. quote from George Ohsawa, founder of macrobiotics

Dx 12/22/2004, ILC, 5cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 21, 2011 08:16AM sam52 wrote:

I think ageism is at work - certainly here in UK.

My dad is 92 and lives on his own since my wonderful mom died nearly 4 years ago.He does most things in the house, except for cooking (he gets meals on wheels).He takes NO prescription medications, though he takes glucosamine for his arthritic knees, and a multi-vitamin when I buy them for him.He is getting very slow on his feet and his memory is failing.

I persuaded him to schedule a GP appointment for a 'once over', as they are not routinely done here.I asked him to query whether it would be a good idea to take a Bcomplex, since I have read it is being hailed as useful for early-stage alzheimers.The GP was totally unhelpful and said 'it is just your age' and that was that.Again, no bloodwork, no urine tests, although he did tell her he needs to pee many many times at night.Just fobbed off with 'your age, blah blah'.

I am caring for him long-distance (a 3 hour drive away), and call him every day. My 2 brothers do very little (one does nothing at all).I cannot see him more often since I also care for my son who has an autistic spectrum disorder and recently also epilepsy.

Things are just about manageable, but I know they will not always remain so.It worries me greatly.

dx Oct 2001 IDC 1.6cm, stage II, grade 3, 3/11 nodes, ER+/PR+, HER2-

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Mar 21, 2011 08:26AM Esti wrote:

Althea,

(Thank you for the kind words!)

Dementia tends to develop slowly and comes in waves, but as her daughter, you'll notice that something about her behaviour seems 'off'.  I first noticed when my mom became flustered following a cake recipe that she had made for years.  And then a series of small errors like putting butter in the freezer, regular dish soap in the dishwasher (it makes it flood into a foamy bog on the kitchen floor) making a cup of coffee and leaving it on the counter until it went cold, repeating things and difficulty finding words etc. to the point where I noticed she wasn't taking her meds properly.

Long story short, I took her to a geriatrician who did a comprehensive mental exam and my mom failed the test.  It was heartbreaking to watch. The geriatrician will be able to look over your mom's meds and give you an idea of what might be going on. Certain cognitive functions decline with age, but only to a point.

The health exam you mentioned doesn't sound adequate for your mother's health concerns.  Like Member-of-the-club mentioned, a check-up with a geriatrician would be better.  You will need to answer questions about how she is able to complete routine tasks like hygiene, cleaning her house, cooking etc. Step back and try to objectively evaluate how well she is taking care of things.

Jenny

The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep.

Dx 6/1/2010, IDC, 2cm, Stage IIIa, Grade 2, 2/2 nodes, ER+/PR+, HER2-
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Mar 21, 2011 08:34AM Esti wrote:

Althea,

A 'comprehensive' exam should be like your annual physical where they get a baseline reading on how you are with full-panel bloodwork, EKG, giving you requisitions for diagnostic tests, physical exam etc With an elderly person it also includes a mini-mental exam.  A follow-up just goes over any ongoing issues, prescriptions, results etc.

Jenny

The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep.

Dx 6/1/2010, IDC, 2cm, Stage IIIa, Grade 2, 2/2 nodes, ER+/PR+, HER2-
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Mar 21, 2011 08:42AM NatureGrrl wrote:

I was living with/caring for my mom when I found out I had cancer.  So I know how hard this is -- even if you aren't living with the person.

Althea, I don't know what a comprehensive should include and only know what I went through with my mom -- which was that her "regular" dr. didn't tests of any kind unless mom had a specific complaint or was showing alarming symptoms. I have no idea if that's standard or not. The only time she had bloodwork done was when she was in chemo, and that was by the oncologist's office, of course.

I think I would give that physician a call and register your concerns, politely and without anger but firmly. Some physicians do listen when they hear complaints.  Tell him what you expected to be done and why you're concerned that things weren't done.  Seems the most basic thing to do would have been to check her meds -- how can they renew her scripts if they don't know how she's doing on them.

I have a friend who takes her mom to all appointments as well, and one dr. tends to be in and out very quickly -- so one day my friend moved her chair in front of the door and sat down. The dr. got the hint and took the time to address all concerns. Sometimes drastic measures are called for!

Also, when you go to the appointments in the future, if you don't already, go armed with a copy of your mother's meds and any complaints she's had lately and the things you think should be addressed, appropriate to that appointment. I always gave the nurse or the dr. the list of meds when we went back to the examination room and asked them to review things with us present if they didn't ask when we checked in. If the dr. doesn't bring up something on your list, do so yourself. I know this doesn't help for the appointment you just had but maybe it'll help in the future.

As for finding a dr. that deals with the aging, could you ask for a referral? I'm sure it depends on how small a community you're in -- we're about 90,000 here and I found 6 geriatricians on a quick google -- if that gives you any idea how your community size might stack up. If your community is really small, is there any place close enough you could go that does have someone?

Not sure if any of that helps but I wanted to try.  Hang in there...

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Mar 21, 2011 08:50AM YramAL wrote:

I am so glad you started this thread, althea. I find myself worrying more and more about my aging parents and my aging inlaws. My parents are actually the oldest-83(mom) and 80(dad), but they are still in pretty good health. They live in a one story handicapped accessible home that they had the foresight to move into about 10 years ago. They live about 10 minutes away from my home. They are just starting to need help with housework, and they still do almost everything on their own. Mostly I worry about whether I will will be able to care for them the way they need it, when they need it-whether I'll be a good daughter when the time comes. 

My in-laws, on the other hand, even though they are younger, are in much poorer health. My mother-in-law(73) is in the early stages of vascular dementia, caused by years and years of uncontrolled diabetes. She is living in an assisted living facility and is on Medicaid. She is on more medications than I can count, and I often wonder if she could go on a safe medical detox and start all over again! My sister-in-law takes care of the day to day issues for her, and I have assumed responsibility for helping with her finances. My father-in-law(77) lives in a trailer park with his 2nd wife, and they are not in the best of health either. 

I just feel like it's all going to come down on me one of these days, and I might not be prepared.

Mary 

Mary-Oncotype Score 11

Dx 12/7/2009, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 21, 2011 09:13AM NatureGrrl wrote:

Mary, I know I wasn't prepared to care for my mom at all -- but once I saw what I was into, I just dealt with it.  You'll do what you need to do.  Helping my parents when my dad was still alive was often stressful (those ambulance calls, dealing with phone calls when they panicked over something that was really OK, etc) but once my dad was gone and my mom was declining and I moved in with her, I was in over my head.  Like I said, you just do what you need to do.  I would urge everyone, however, to get more support than I had.

I hope y'all don't mind if I share some of what I went through with my mom's dementia...

Regarding recognizing dementia from other issues, it isn't always easy, and I would heartily recommend getting parents seen by someone who specializes in aging.

We didn't recognize my mom's dementia at first because it seemed like it was just more of mom's behavior, only worse -- but when I moved in with her I realized something was really wrong.

She completely covered it up when she saw her regular physician by being flirty (the Southern belle in her never turned off) and by not talking much but her oncologist saw her frequently (as did the on-staff therapist and the nursing staff) and since they saw her often, they saw what was going on and talked to me often (to provide mainly emotional support, which I was so grateful for).

If anyone is dealing with a parent with dementia, here's a website that helped me a lot:

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=391

It gives some really good tips on how to communicate with someone with demetia.

If you are concerned about a parent, there are some widely-known short tests. If your parent is resistant, for at least some of the questions you can just work them into conversation (in my mom's case, I couldn't tell her I was testing her, because she was already convinced I was trying to have her certified as "crazy" so I could steal her house. Sigh. And that was one of the easier parts of her behavior to deal with. It still makes me cry). The tests are the SLUMS and the MMSE tests. They aren't meant to make a definitive diagnosis but may help you decide if you have something to be concerned about or are just dealing with aging forgetfulness.

Some examples of my mother's dementia, which may or may not apply to others:

--She couldn't tell time from a digital clock at all, and from an analog clock only if she counted the numbers and tried to remember what each mark meant.

--She couldn't understand a monthly calendar. I cannot tell you the hours we spend looking at her appointment calender, trying to help her understand how to read it (at her insistance -- she knew she used to be able to understand how to read a calendar and was very frustrated that she couldn't do it any more).

--She couldn't write a check properly.  She knew what they were for and generally what went on them but didn't know what went where.  And she sent empty bills out.  She couldn't use a check register and used her deposit slips to record the checks she was writing, but frequently without putting down the right/needed information (she really didn't want me to help with any of this although I was cleared to write checks, but sometimes when she got too confused she let me help).

--She became quite paranoid at times.

--She became very mean and hateful to me at times (but not all the time).

--She hallucinated (she saw lightening bugs as big as dinner plates, for example) or couldn't interpret what she was seeing.  She saw water on the  patio when it was dry, or rain when it was a cloudless sky.  She saw people (toddlers, relatives who had died, etc.) in the house that weren't there.  (Here's one, much of what mom did upset me or made me cry but at this I laughed so hard:  I was in the middle of chemo and so tired I could barely get up the stairs, and she called my brother and told him I was sneaking men through the front door (is that really sneaking, if it was the front door?) into the house every night.  Can you imagine??? Like I even had the energy to THINK about a man!!  Ah, mom.)  

--Family history got revised quite a bit her last few years (and that was one of the things my brothers did see, because she felt safe talking about the past -- everyone learned very quickly not to contridict her!).

--She didn't know what day or month it was most of the time; she covered that up by keeping the paper by the phone.

--She couldn't comprehend most of what she read, she couldn't follow a TV show or movie plot, and she often couldn't comprehend a photo.

--She got very confused about her meds and when to take them.  Also, a few times her pills disappeared (I suspect she was tossing them without realizing it; if she'd taken them at the rate they were disappearing, she would have gotten ill or died -- she had been given some short-term, heavy duty pain meds for a back issue and I finally hid the bottles -- at her suggestion; she knew the pills were vanishing but had no memory of doing anything with them -- so she only had a day's worth to deal with and couldn't toss the rest).

--She would go into confused spells -- it's called "sundowning" because it frequently happens at that time of day; for mom it was usually a bit later at night -- she would go into a confused state of mind and talk to me for hours to try to understand something.  I can't tell you how often I sat and cried through these.

It was really, really hard to deal with, and it was really hard to deal with her anger and meanness; one thing that kept me going and helped me focus on just being as kind and gentle as I could was the thought that this wasn't really my mom any more. It was a very sad time of my life.  She died while I was in rads.

BTW, my mom was only on one blood pressure med (I'm taking the same one now) Undecided, and her fish oil, and that was it, except for the short time she was on the pain med.

Whether or not a parent has dementia (my dad stayed very sharp until he died), helping them during this time of their lives is really stressful and difficult. It's also a blessing to be able to help.  Most of all, though, everyone, please remember to take care of yourselves.

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Mar 21, 2011 09:14AM NatureGrrl wrote:

(Yikes, sorry so long!)

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Mar 21, 2011 09:25AM YramAL wrote:

NatureGrrl-I think the meanness is what is so difficult about my mother-in-law. Her special target is my sister-in-law, who has been the one to take her to doctor's appointments and other places. My mother-in-law is convinced that my sister-in-law is jealous of her. She's also convinced that a 22  year old kitchen worker at her assisted living facility is in love with her, and won't leave him alone. Poor guy. 

Mary 

Mary-Oncotype Score 11

Dx 12/7/2009, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 21, 2011 09:32AM NatureGrrl wrote:

I think the one taking care of the the parent is the one who gets the wrath.  I know it's not funny, but sometimes I just had to laugh at some of the things, or I wouldn't have been able to deal with it.

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Mar 21, 2011 09:35AM awb wrote:

NatureGirl----your post really resonated with me. My Dad is almost 86 and has Alzheimer's, my mom is 82 and cares for him. He has a lot of the same issues you mentioned. The hardest thing is living about 5 hours away from them. My sister is closer, but still 2 hours away. We try to stagger our visits in order to give my mom time to her self; respite from the daily caregiving. Thanks for the link.

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Mar 21, 2011 10:54AM Esti wrote:

Naturegrrl,

What you described is exactly what I went through/am going through with my mom.  The first time I saw her hallucinate was at night during one of her hospital stays.  She told me that firemen were in the room, and she was insisting on it.

The nurse came in the room and I asked if she understood what my mother was talking about - maybe for some reason firemen were in while I was down in the hospital cafeteria and she was just mis-communicating?

The nurse said no, and she asked my mom if there were firemen in the room, and if so, where were they? And my mom pointed to the empty bed next to her and said 'they're all sitting there!'

The nurse walked over to the bed and said 'out everyone!' and she escorted the imaginary firemen out of the room. That's how I learned to deal with her hallucinations.

I used a lint roller on her duvet at night to get rid of the imaginary bugs, invited imaginary people in our backyard in for something to eat at her request (grumbling to myself the whole time), and repeatedly tell her that long-dead relatives are safely at home when she asks about them.

I think it does take humour and some imagination.

The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep.

Dx 6/1/2010, IDC, 2cm, Stage IIIa, Grade 2, 2/2 nodes, ER+/PR+, HER2-
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Mar 21, 2011 11:01AM mrsnjband wrote:

I am kind in the same place.  My mom is 83 and had a stroke in April. She was doing really well until a couple weeks ago and she had another spell. As it turns out she didn't have another stroke but has forgotten a lot again.  The good part for me is my brother is taking care of her as I live 400 miles again.  But it is still stressful since I don't have the energy for me let alone here.

So I understand where you are coming from.  Sending love & support your way. NJ

Norma June, Bi-lateral MX 2008, Bi-lateral DIEP 2011

Dx 1/10/2008, IBC, <1cm, Stage IIIb, ER-/PR-, HER2-Chemotherapy 01/25/2008 Adriamycin, CytoxanChemotherapy 03/10/2008 TaxolChemotherapy 05/29/2008 TaxotereSurgery 07/10/2008 Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left)Radiation Therapy 08/11/2008 ExternalSurgery 08/15/2011 Reconstruction: DIEP flap (Right)Surgery 08/15/2011 Reconstruction: DIEP flap (Left)Surgery 12/12/2011 Reconstruction (Left)
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Mar 21, 2011 11:18AM YramAL wrote:

Those of you who have experience with dementia and delusions, a little advice please. 

As I said before, my mother-in-law is obsessed with a 22 year old kitchen worker at her assisted living facility. This came to the family's attention last summer when she claimed he was coming into her room at night. We really didn't think that was happening, but of course it had to be investigated. The poor kid was mortified that anyone would think he was carrying on a romance with a 73 year old woman. We have all tried to tell my mother-in-law that he is NOT her boyfriend, and that she needs to leave him alone, so he can do his job. She sits near the kitchen where he works and tries to keep him from clocking out! She claims we are all jealous of her and are keeping them apart.

What should we be telling her? It sounds like what works is to sort of play into her delusion, but I don't know what that would look like.  

Mary 

Mary-Oncotype Score 11

Dx 12/7/2009, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 21, 2011 11:19AM NatureGrrl wrote:

First of all, if anything I said helped anyone, I'm really glad.  Thank you for sharing that.

mrsnjband -- I'm really glad your brother has stepped in. So often that care falls to the women in the family or is neglected.  Do take care of yourself.

Esti, thank you for your stories. I sometimes wish I could do it all over with my mom, with more insight, but I know my focus was always to be loving and kind and that I did the best  I could.

My heart breaks over and over when I think of my mom. I miss my dad something terrible, but at least he was present and could tell me his true feelings.  But  I don't know which is best -- to die aware, or to die in another land.  My conclusion is usually the same: there is no good way to die, and no good way to watch someone die.

But, I stand by my thought that it's a gift to be part of this part of someone's life.

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Mar 21, 2011 11:26AM NatureGrrl wrote:

Mary, that's such a fine line.  My one brother and SIL agreed with all my mother said -- to my detriment, and it made my dealing with my mom SO much harder.

The trick seems to be to say things like "Oh, is that how you feel?" and then to try to divert them.

Arguing is completely pointless. 

The staff of where she is should be intervening more.

Best thing:  find a therapist/counselor who is experienced in dealing with aging issues and get guidance from them. Also, check out the link I provided above; it helped me a lot.

Best of luck and a warm hug.

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Mar 21, 2011 11:50AM Esti wrote:

YramAL,

I was told that the hallucinations that some dementia patients have are very real to them, so there's no point in disagreeing with them. 

My mother's geriatrician said that as long as my the hallucinations were causing no harm (eg. scaring her, putting her or others in danger) they would not be treated by anti-hallucinogens.

Is your MIL on any anti-hallucinogens? Maybe that's an option?  The way that I avoid my mother getting into harm's way is to 'baby-proof' the house.  Perhaps your MIL can be somehow blocked from interfering with this employee?

In the intial stages of dementia, my mom did fight the treatment.  She was suspicious of the meds and the efforts to make my parents' home safer for her.  Perhaps that is the stage your MIL is in.  I just had to calmly, firmly, repeatedly tell her the truth of the matter; that the meds were necessary to make her feel better, and no: no one was breaking in through the basement...things like imaginary bugs can be played along with.

You have to affect a leadership or even parental role in a loving way.  I had to fake acting like I was in control of everything so that my mom would relax and accept that I was helping her.

I know that you probably see your MIL as the strong, vibrant, caretaker she may have been and it might be hard to  switch roles so that you are now her caretaker. I don't know her diagnosis, but she might have child-like attributes and she needs loving, but firm treatment. 

The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep.

Dx 6/1/2010, IDC, 2cm, Stage IIIa, Grade 2, 2/2 nodes, ER+/PR+, HER2-
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Mar 21, 2011 12:09PM Esti wrote:

Naturegrrl,

What you wrote means a lot to me. I go to sleep every night thinking of how to make things better for my mom and I've learned so much from people in the same position. 

I wondered the same thing about my mother dying this way, and I agree with what you wrote: 'there is no good way to die, and no good way to watch someone die. '

(Although I am secretly hoping that my exit will be courtesy of a wayward bus or a brain aneurysm...).

One small mercy is that my mom has never really been aware that I've had cancer and the world she lives in seems to be a happy one despite the imaginary bug problem. 

The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep.

Dx 6/1/2010, IDC, 2cm, Stage IIIa, Grade 2, 2/2 nodes, ER+/PR+, HER2-
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Mar 21, 2011 01:03PM Joy_ wrote:

Althea, thanks so much for starting this thread which is obviously much needed.  I was going to start one but didn't think I'd make a good OP.  I don't see this is OT as many have to deal with this while having treatments or just the ongoing worry of our diagnosis. There's no general section for this type of issue so this is as good as anywhere.

My mother is 83 and in the early stage of Alzheimer's. It's six months since we had her moved to a hostel room in a care facility as she was insisting she was taking her medications and insulin injection but the insulin was still in the fridge untouched.  We had to wait for a crisis to have her hospitalised so she would get properly assessed.  She had a brain scan that showed changes and ruled out vascular dementia, but the questionnaires they gave her were never bad enough to prove dementia as she got very good at answering them correctly.

It's common for health workers to not recognise the dementia when it's plain to relatives, as the doctors don't know their history so don't realise how crazy some of their answers are.  They manage to sound so plausible.  

Mum was always very independent, secretive and suspicious so it's not surprising she thinks my sister and I have plotted to have her home taken away so we could steal her belongings.  In one funny incident she couldn't find her toothbrush and said she was sure someone had come into her room and stolen it.  Yes, a used toothbrush is just the thing a thief would want Surprised and illustrates that their reasoning is damaged as well as their memory.  

Sibling rivalry comes into full force in these situations and it has been sad to see how some siblings are willing to sit on the sidelines, rarely visit or help in any way but complain about everything.  It seems we should have had her assessed sooner, even though some lived closer, yet we should have kept her at home longer.  She wouldn't let us manage her medications and the insulin was the deciding factor. That was the bottom line.  Yes, she hates the hostel, but from what I've read that is a desire to feel in control and in a familiar place.  My father in law remained in his home of 50 years but still always wanted to go "home" after he got dementia.

The most useful thing I found out from the manager of the home is that none of them have a clue that they have dementia, thinking they have a poor memory but nothing more.

My main tools are distraction, diversion and just being very upbeat and happy.  I hug her a lot and smile and say how good it is to see her.  I point out the beautiful landscape and flowers in season.  It is keeping me in the moment, enjoying what time we have left. It's instant feedback whether I speak from a happy place or a disgruntled one, constantly steering me back to what works.

Yes, Carol, a gift indeed to be a part of Mum's life when she most needs our companionship. 

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Mar 21, 2011 01:22PM YramAL wrote:

Thank you all for your replies regarding my MIL. I will pass them along to my SIL, who is her main caretaker (other than the assisted living facility). My husband and I help out as well, but my SIL is the real hero here. The facility is blocking my MIL's access to the employee, as much for his sake as for hers, but she talks about him constantly. I guess we all just need to listen. She is on anti-depressants and anti-anxiety meds, but no anti-hallucinogens that I know of. She is very canny, and seems to be able to pull herself together when she feels it is appropriate. 

It is so good to hear from other people who are going through some of the same things.  

Mary 

Mary-Oncotype Score 11

Dx 12/7/2009, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 22, 2011 01:59AM, edited Mar 26, 2011 02:48AM by molly52

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Mar 23, 2011 12:37PM althea wrote:

naturegrrl, thanks for the list you wrote.  My mom is still ambulatory, for which I am very grateful.  I noticed last year that she was running out of her prescriptions.  Her memory is very fuzzy.  She's been on a pill organizer that I fill every week since last november.  I fix all her dinners, and it seems to have escaped her notice that she doesn't cook anymore. 

At the eye doctor last year, I noticed she struggled when filling out the questionnaire.  What should've taken 5 minutes took her 30 minutes or more.  She's hard of hearing, so it's not always easy to tell if she's forgetful or just didn't hear something that was said to her. 

Listen with a questioning ear. quote from George Ohsawa, founder of macrobiotics

Dx 12/22/2004, ILC, 5cm, Stage II, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 23, 2011 03:20PM Joy_ wrote:

Naturegirl, the symptoms you describe are for a later stage of dementia, especially the hallucinations.  My mother was passing the mini mental tests for dementia yet could not function on her own.  

The chemist made up plastic bubble packs for her pills, so three pills for the evening were in one bubble with the date and one pill for the morning in a different bubble. Whenever I visited she had used the pills at the bottom, disregarding the date, and she was a week or more behind.  When I explained she must have missed lots she came up with logical sounding reasons that were just plain wrong.   

The same thing happened when she had the phone cut off because she hadn't paid the bill.  And she was driving an unregistered car as she couldn't find the bill and said it would be fine if the police stopped her, she would just explain that she needed to go out for food.

One day we went for a walk in town where she had lived for 12 years, driving and walking into town almost daily.  I wanted to see the shop my niece (her granddaughter) had opened.  First I found she had taken us in the wrong direction.  I suspected she was going the wrong way and asked a stranger.   He told me a short cut through the back of the shops.  My mother stopped to ask me to remind her where we were going about five times in the 10 minutes it took us to slowly walk there.  I was stunned by the time we got there.  It was the wake up call I needed that this wasn't just a small memory problem.  I let her drive me to the shops and she had no idea where she was at one time as we got to the corner near where she lived. But she insisted she knew exactly where she was.  It was months later when she passed all the mini-mental tests with flying colours.  They really need to re-design that test so they can send the patient back to the waiting room, engage them in some other activity and only then ask them to recall some major and minor events and words from an hour earlier.

Fortunately my younger sister, who is a nurse, had been attending all her doctor's appointments and pointing out Mum's memory problems, informed the Dr privately that she was a danger on the roads.  Once she lost her licence we had to act fast to move her and she knew she couldn't shop without her car. It was a devastating time for her and us sisters as she had a hoarded house and nearly lost her mind watching us go through all her belongings.  Other family members really believed we were doing the wrong thing so we met with hostility from all sides.

All this happened just after I finished rads.  I think my little sister was holding off telling me how bad things were till after the treatments ended.  I'm blessed to have a wonderful sister.  Thank goodness it's all behind us now and Mum is settled into the hostel, even though she complains as it's her nature.

Sorry this is so long, it's been so good to let out the stress though. 

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