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I think it depends on the individual case. When my father was diagnosed with AD, it was the advice of his care team that he be told and involved with his health care decisions as long as possible. We had a family meeting with a geriatric care specialist who told all of us what to expect and gave all of us counsel on how to interact with my father. This also let us retire the car keys from him and, deal with a few other safety issues with the support of the care team. He was started on Aricept and did well for a number of years after diagnosis. My stepmother was the driving force in getting him to a physician, in involving geriatric specialists and setting up the family meeting. I look back now and realize what a good job she did. With my mother, I can't get her to a doctor, I'm afraid to say the D word to her and my out of state siblings are non supportive and in denial. I think maybe by the time she is diagnosed, there won't be a point in telling her. I have read that with some forms of dementia, medication can maybe delay progress -so to me, that's a good reason to try to seek early diagnosis and be able to involve the patient but it's just not always possible. I think sometimes early signs are not that clear and consistent, are thought of as just normal aging things and not picked up on until viewed in the rear view mirror. With the PPA, your mom must be under the care of a doctor so I think you should call her doctor and discuss your concerns and go from there. You can also talk to a geriatric care specialist who could give you some thoughts on whether disclosure to your mom, who has limited communication capability to discuss her fears and concerns, is a good idea or not.
Dementia comes in all shapes and forms and PPA is one form. In the beginning stages it basically affects speech and so communication is an issue. Does mom understand you when you speak? How is moms at reading? Have you tried different forms of communication such as flash cards, index cards or even the computer? Over time she will have some memory problems- if that is the case now, if she knows she is also having memory problems what will that mean to her? Often times people with memory problems forget that they have them- so before telling her you need to understand and ask yourself what purpose will this serve?
You dont tell her, at least I never told my Mom. I said this once before but you know those days when you feel happy or sad but you have to think of why you do? Its like you have something on your mind and then you remember "Oh ya, Christmas is coming" or "oh ya, I might lose my job" Its those feelings that stay with them but they cannot remember why. My sibling once told my Mom at the beginnings of her dementia/alz, that she owed her money and that she make a mistake not putting her in charge. Ok now here we are years later and my Mom once in a while will start to cry and mutter "mistake" to me. Oh it infuriates me to no end that she planted this in my mothers brain and my Mom cannot express things. Why tell your Mom that she might have it? What good will it do, no good, thats what. When my Mom said she forgots things in the beginning and I told her I do too, she laughed and said "oh you always make me feel good" and to this day I still make her feel good, we are "both" forgetful in a funny way, thats all we have/had ever discussed. Just keep your Mom happy and dont plant things in her mind, they will stay there and make her a sad person thru her illness at times. Just my opinion, its a long road :(
She may not have dementia. Aphasia is a specialized kind of stroke. What you may think is dementia could be caused by her aphasia stroke. Please contact an Aphasia center. There is one in Baltimore, MD. They work with these people and give them back their voice and life. If you need further info on aphasia I'll be happy to provide it and or the address/phone number for the center in MD.
Why not have the doctor explain this to her, same as s/he would to another patient? Your mom must have noticed she is confused sometimes; the explanation (in that moment, at least, and whenever she is able to recall it) will make her feel a little lss nuts, I would think. Good luck to you all!
My 79 year old wife has serious dementia. I can see no value in talking to her about this. In fact, I see it as cruel to do so. She is also incontinent. I simply handle the situation. She knows, so why would I want to bring it up?
As a practical matter, a person suffering dementia wouldn't remember such a discussion anyway.
Please, ask yourself what can be gained by such a conversation.
Thank you all, Mom does know she gets confused and loses things etc.. She's crying for things one usually will just be mad or concerned about, thats why i'm trying to see what others would do and why. She is on Zoloft for depression and seeing a speech therapist we bought her a speech and language binder and frequently show her how to use it but its almost like she wants to make it harder on everyone,seems strange but sis and I are realizing a bit of manipulation is getting to a lot of manipulation. she can say some phrases and write but getting bad at writing. My father found out in 2002 abt. him having ALZ and he went downhill right away never said hardly a word for 7 yrs. he died because he couldnt swallow god awful way to go, Mom thinks this is what will happen to her too, so she wants to "end it" I don't want to cause her any stress..Long road is right, but sometimes their is a fork in the road. Thank you everyone.Leslie
tltimme, which part of my answer do you disagree with? That I wouldn't tell my mother? Or that I did tell and do discuss it with my husband? Or that each case needs to be judged on its own merits?
If your view is that what was appropriate for you mother is also best for everyone else who gets dementia, then indeed, we do disagree.
Jeanne, I honestly don't think in a case like this there is a one size fits all answer. Where as you wouldn't discuss it with your mom, I know that through out my moms life she was very independant and in charge type of person. When the changes associated with dementia started getting worse, she wanted to know what was wrong with her.By telling her and keeping her "in control" of her health issues she is able to retain her feeling of independence and her pride. I think that honesty is called for, even if it has to be tailored to fit each case.
Well my mother with Primary Progressive Aphasia, ( we suspect dementia0 Is crying before christmas showing me the old neurologist diag. papers; She wants to go to another one ;I tell her I understand and she wants to be diagnosed for dementia; I have a feeling a diagnosis is needed for her Long term care policy to be used soon ; she knows everything is going badly. Really strange she is a bucket of water for 2 weeks then I can see a clear mind for the day really perplexing.
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.
As a practical matter, a person suffering dementia wouldn't remember such a discussion anyway.
Please, ask yourself what can be gained by such a conversation.
Planeman
seeing a speech therapist we bought her a speech and language binder and frequently show her how to use it but its almost like she wants to make it harder on everyone,seems strange but sis and I are realizing a bit of manipulation is getting to a lot of manipulation. she can say some phrases and write but getting bad at writing. My father found out in 2002 abt. him having ALZ and he went downhill right away never said hardly a word for 7 yrs. he died because he couldnt swallow god awful way to go, Mom thinks this is what will happen to her too, so she wants to "end it" I don't want to cause her any stress..Long road is right, but sometimes their is a fork in the road. Thank you everyone.Leslie
If your view is that what was appropriate for you mother is also best for everyone else who gets dementia, then indeed, we do disagree.
Is crying before christmas showing me the old neurologist diag. papers; She wants to go to another one ;I tell her I understand and she wants to be diagnosed for dementia; I have a feeling a diagnosis is needed for her Long term care policy to be used soon ; she knows everything is going badly.
Really strange she is a bucket of water for 2 weeks then I can see a clear mind for the day really perplexing.
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