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We have a family friend who knows she has it. She is telling people and giving her goodbyes. She's amazingly positive about it. She says, I know that I won't know you some day and I hate that, but please know that you have been a dear friend and I wish I could keep the memories. And I'll see you in the hereafter. I'm not sure I could be that accepting.
It seems about half the people who are becoming demented are not aware that they are having increasing mental problems, and about half know there's something wrong with their thinking. I learned this when I attended a recent great presentation by Teepa Snow about builiding a Alzheimer aware and Alzheimer friendly community. teepasnow/Teepa Snow is a dementia and Alzheimer's care expert who trains and helps agencies, facilities, and families
If they are aware, I think there are good strategies for working with and for them. If they are not aware, or in denial, don't try to rub their noses in it. That won't help and will likely make it worse for all.
My mother's awareness seemed to come and go. Sometimes she'd pull out a clippping about Alzheimer Disease she'd saved and ask me "Is this what I have?. I want to be dead if it is." Some periods she just lived her life... not worried (no more than she'd ever done, that is). And sometimes she'd put the blame for her problems on devices she'd used for decades - a broken phone, a non-working stereo system, ...
The blessing of dementia is that you don't know you have it. Oh sure, early on you notice forgetfulness and get aggravated, but mid to late stages, you don't have short term memory and you retain very little.
Many people will try and convince a person they have dementia. It's usually a waste of time and just upsets the person. In early onset dementia people can be made aware and even prepare in some ways but usually by the time dementia is diagnosed a person's ability to reason is diminished and to them things are just fine.
Jkling....I commend you for trying to be proactive w/the Dr re: your father's care. I would ask the Dr. about medication(s) for anxiety, depression, behavior since so many others on this forum have said these have been a godsend for them and their loved one.....night and day difference and, no, I'm not speaking of sedating your Dad into total lethargy.....just allowing him to relax, lessen anxiety, elevate mood, reduce bad behavior. I would also urge you to search the Forum Topics on this site. I suspect you will find at least 1 article that will prrovide you a starting point for creating your list of Q's for the neurologist. In answer to MaryKathleen's original Q, I can only share my experience w/my Mom (94, moderate dementia, now in ALF). Mom was dxd at 88 w/MCI (Mild Cognitive Impairment). She was still living on her own in condo, driving, very socially active....BUT...."memory issues" were becoming increasingly concerning: missed appointments, "lost/misplaced" keys, wallet, credit cards, purse, keys locked in auto, etc. Then bills weren't getting paid, credit cards turned off....Dr. appts....MCI dx. W/caregiver help, and my sibs and I taking over bill-paying ( POAs in place), Mom was able to stay in her condo until 91 YO. Still, during this time, she did exhibit a lot of anxiety (which greatly distressed me) when she couldn't find her purse, her wallet, her keys, etc. She even went thru a (thankfully) brief period of paranoia....calling the police to report things "stolen".....of course, whatever was "stolen" was found in her condo....laying under a sweater on a BR chair, etc. My Mom always, to some degree, acknowledged her "memory problems" but usually in an off-hand joking way....never seeming to recognize the truly serious problems they caused her. What was an even bigger concern to me was the rather rapid (over a few months) decline in cognitive function. This, my Mother has never recognized. She began to tell me more and more frequently, that things weren't working: the brand new hairdryer, the brand new iron, the home phone, the TV remote, etc. In every instance, according to her, they were broken and had to be repaired. She never made that "reasonable" deduction that "she" was the common denominator.....she was no longer able to do that. Funny story tho.....one of the last times I visited Mom in her condo, we went out. I was driving her car (she had stopped driving, Thank God!, but we hadn't yet sold the car). I opened the center console compartment looking for the garage opener. Reached in and 1 by 1 started pulling all these "missing" and "broken" things out: the TV remote, the home phone, her Jingle cell phone....Each 1 I held up to Mom, saying, "Mom?? What the heck?". Mom just looked at me and then started laughing....saying...."Oh.....I've been looking for all of these!". Well.....Together, we had a short but good laughfest.....needless to say, once back in the condo, they all worked perfectly....
My husband is 75 and has vascular dementia. He was diagnosed in 2011 so it has been a long time and he is way down the road. When our kids were little they blamed everything they did wrong on "Little Joe". So when he does really weird things, we blam it on the "Little Joe" part of his brain. This helps him to feel it is not him, but Little Joe. I think it helps. Just today I told him to tell his Little Joe brain to tell his Little Joe legs to move. Did it really help? Who knows. He moves when he feels he can.
My dad exhibits what we (as in his caregivers and my mom and his doctor) are calling "memory problems" or "memory issues". He has an appointment with a neurologist in a few weeks. MaryKathleen, I'd like to see more people chime in on your question so I can ask the doctor some questions when I take him to his appointment.
Currently my dad does not remember what his doctors and others tell him (whoever takes him has to write things down), can't think of words that he's trying to say when talking to someone and forgets where he puts things. He does remember that he had items at some point but just can't remember where he put them. He does not drive because he gets confused easily.
His reactions from all of this are: throwing fits at home and in public, severe frustration, severe aggravation and feelings of hopelessness. One thing he always says is "Oh God" in a very depressed and hopeless tone. I would like to know when this will go away.
I'm guessing he has realized that he has a problem but has not come to terms with it. I'd like to know more about this condition so that I will have some good questions for the neurologist, and so that I can help him.
My mother doesn't admit to anything. If she knows she has dementia, it's not something she wants others to know. So we tiptoe around the issue. Actually it is the side effects of the dementia -- the unsteady gait and falling potential -- that cause more problems than the brain deficit for her. I think the brain problems are hardest on me. It can feel like the conversations that are actually twisted are supposed to make good sense. She remembers things that never happened and rewrites things that do. Yesterday is the same as last year. There are obsessions on things that she feels explain problems she is having. She wants them fixed right now. It's like living in a land where things don't make good sense and trying to stand firm not to be thrown this way and that.
She may feel like she is fine, though. I have become the competence she's lost, so she probably feels like things are pretty normal. She and I don't talk about dementia, since it would upset her. I only correct her if it is important or drives me particularly batty.
From what I've seen and read, it appears that, mercifully, the dementia patient is at least partially unaware of their condition. And as time goes on, they are less and less aware.
My MIL has no idea. We have told her many times, which is heart breaking for her for about a half hour then it's gone. She asks every single day. Why can't I drive? Why does the nurse have to come? If she pushes it, we tell her, but most of the time now we just stay vague and say "for your safety" or "because we love you". Sometimes I am jealous that she gets to forget. I think about it 24/7! Which I know is not healthy and something I am working on :)
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
If they are aware, I think there are good strategies for working with and for them. If they are not aware, or in denial, don't try to rub their noses in it. That won't help and will likely make it worse for all.
My mother's awareness seemed to come and go. Sometimes she'd pull out a clippping about Alzheimer Disease she'd saved and ask me "Is this what I have?. I want to be dead if it is." Some periods she just lived her life... not worried (no more than she'd ever done, that is). And sometimes she'd put the blame for her problems on devices she'd used for decades - a broken phone, a non-working stereo system, ...
I would also urge you to search the Forum Topics on this site. I suspect you will find at least 1 article that will prrovide you a starting point for creating your list of Q's for the neurologist.
In answer to MaryKathleen's original Q, I can only share my experience w/my Mom (94, moderate dementia, now in ALF). Mom was dxd at 88 w/MCI (Mild Cognitive Impairment). She was still living on her own in condo, driving, very socially active....BUT...."memory issues" were becoming increasingly concerning: missed appointments, "lost/misplaced" keys, wallet, credit cards, purse, keys locked in auto, etc. Then bills weren't getting paid, credit cards turned off....Dr. appts....MCI dx. W/caregiver help, and my sibs and I taking over bill-paying ( POAs in place), Mom was able to stay in her condo until 91 YO. Still, during this time, she did exhibit a lot of anxiety (which greatly distressed me) when she couldn't find her purse, her wallet, her keys, etc. She even went thru a (thankfully) brief period of paranoia....calling the police to report things "stolen".....of course, whatever was "stolen" was found in her condo....laying under a sweater on a BR chair, etc.
My Mom always, to some degree, acknowledged her "memory problems" but usually in an off-hand joking way....never seeming to recognize the truly serious problems they caused her.
What was an even bigger concern to me was the rather rapid (over a few months) decline in cognitive function. This, my Mother has never recognized. She began to tell me more and more frequently, that things weren't working: the brand new hairdryer, the brand new iron, the home phone, the TV remote, etc. In every instance, according to her, they were broken and had to be repaired. She never made that "reasonable" deduction that "she" was the common denominator.....she was no longer able to do that.
Funny story tho.....one of the last times I visited Mom in her condo, we went out. I was driving her car (she had stopped driving, Thank God!, but we hadn't yet sold the car). I opened the center console compartment looking for the garage opener. Reached in and 1 by 1 started pulling all these "missing" and "broken" things out: the TV remote, the home phone, her Jingle cell phone....Each 1 I held up to Mom, saying, "Mom?? What the heck?". Mom just looked at me and then started laughing....saying...."Oh.....I've been looking for all of these!". Well.....Together, we had a short but good laughfest.....needless to say, once back in the condo, they all worked perfectly....
Currently my dad does not remember what his doctors and others tell him (whoever takes him has to write things down), can't think of words that he's trying to say when talking to someone and forgets where he puts things. He does remember that he had items at some point but just can't remember where he put them. He does not drive because he gets confused easily.
His reactions from all of this are: throwing fits at home and in public, severe frustration, severe aggravation and feelings of hopelessness. One thing he always says is "Oh God" in a very depressed and hopeless tone. I would like to know when this will go away.
I'm guessing he has realized that he has a problem but has not come to terms with it. I'd like to know more about this condition so that I will have some good questions for the neurologist, and so that I can help him.
She may feel like she is fine, though. I have become the competence she's lost, so she probably feels like things are pretty normal. She and I don't talk about dementia, since it would upset her. I only correct her if it is important or drives me particularly batty.
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