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A fair percentage of people with Parkinson's will develop dementia but not everyone. Lewy body dementia is most common. Sometimes it's "mixed" with Alzheimer's disease. There's no doubt the the chances of developing dementia are greatly increased in someone with Parkinson's. It's something that needs to be watched for.
meatjeanne, my heart goes out to you! You must be going through all kinds of "what ifs" now. What if he'd had a more accurate diagnosis? Would is treatment been better? Very possibly, but the final outcome would have been the same.
I am not sure how much consolation it is, but a HUGE number of brain autopsies reveal incorrect diagnoses, even from some of the best dementia centers in the country. Finding biomarkers that will enable better diagnosis earlier is one of the hot topics in research right now. Last year I volunteered for a spinal tap for a study conducted by the M J Fox Foundation for that very purpose. Researchers are taking this very seriously.
I understand the "what if" scenarios you must be going through. Know that this misdiagnosis was Not Your Fault, and also not the fault of the medical professionals doing the best they could with what is now known. Someday we may be able to diagnose neurological conditions through blood tests or body scans or spinal taps, etc. Science is just not there yet.
My wife was dxd with Parkinson's in 2007 but it has progressed very slowly but in the Summer 2012 she started thinking our home had become a PD Care Home & I was one of the staff members. Actually, she thinks I one of about 5-6 different people (her husband, an old man, a younger man, a woman, & others that work in the "home." At first I tried convincing her that his is our house & home, that no one lives or works here but us two people -- husband & wife. All to no avail. So I have taken the advice of many caregivers and caregiving websites -- if her belief is not hurting her or someone else just go along with her. I must admit at first I felt like I was lying to her but I've come to realize that is her reality and I am just entering into it and agreeing. Her dementia is much more stressing than the PD is. Her dementia was dxd as Lewy Body Dementia and the symptoms are different from Alzheimer's but care needs are the same. I have come to realize that: "that Love covers all" Those we care for didn't ask for the disease (and we probably were not asked to be the caregiver) but at the end of the day (or life) no matter what has to be done our love and loving care is all that counts.
I think a good part of it is when they get the full diagnosis of Parkinson's. My dad had shaking hands for 30+ years. Then all the rest started developing in his 70's. He is 89 and the reason I can take care of him is his mind still works which I am thankful for. His biggest problem is he sleeps off and on all day and dreams. He wakes and tries to act out his dreams (turning off TV, moving walker, looking for dog, telling me to look at squirrels when there are not any) once he fully wakes most the time he realizes he was dreaming.
Both my father and his older brother (my uncle) have had Parkinson's (my father died a few months ago after 35 years with Parkinson's and my uncle just got his diagnosis last year). My father had some dementia (thinking he was still 30 although he was 65 and could clearly tell you things that he saw that were not there or that he was still working although he hadn't worked in 30 years, etc) and my uncle is now having "episodes" like Daddy. It comes and goes but there are some things that definitely make it worse for both: Medication levels (their bodies seem/seemed to need to have med levels changed now and again because their bodies would learn to compensate so levels of every day meds would have to be changed by the doctor), dehydration (even the smallest level of dehydration would cause them to think "differently"), diet (too much salt adds to their dementia episodes) and even a cold (my father had his most dangerous dementia episodes when he took cold meds with psuedoepherine in them (Sudafed) - he put his shoes on and walked out of our house thinking he was back on the farm and we we in the city and he was ready to walk out in traffic because he "saw" the farm and only grassy fields and was going to do chores). Dementia is a part of Parkinson's but can be handled if you research and talk to doctors. Prayers are with anyone that has a loved one with Parkinson's --- it is a HARD disease to go through for everyone involved.
Now 93 y/o dx'd w/Parkinson's, but orig had tremor after bypass heart surg w/stroke on the table in 1998. VA dx'd Parkinson's later; recently dx'd w/dementia in July 2014. Having the same sleep problems which means nothing other than getting the mail (and misplacing it) is getting done. His bdrm is a disaster area; supposed to be sorting out 40 yrs of paper and doesn't want help with it. I am working full time and trying to sort out what happened daily when I get home. I believe his dementia dx was actually a result of not wearing his hearing aid which I tried to warn him about by documentation I read, but he refused to comply.
I can't believe this question. I got autopsy results just yesterday, husband died in November. Diagnosed with Alzheimer's in 2008. "Parkinson's disease with features of Alzheimer's disease." I specifically asked for the brain to be checked, the only true way to know. Bob lost his ability to speak, communicate, facial expressions very early, in 2009. It was very difficult to tell what was going on with him, but I always spoke to him as if he understood. My biggest fear was that he might be misdiagnosed. I don't know if Parkinson meds would have been better for him than the Alzheimer's meds. I shouldn't beat myself up, but I have been crying since getting this report. I always felt Bob knew more of what was going on than what one would assume from an Alzheimer's patient.
My patient had second stage dementia or so they said, my personal opinion was age related short term memory loss with depression anyway, he was than dianosed with Parkinsons years later. This is not uncommon and probably some how related because dementia is a from of Alzheimers
My brother had memory problems for years before he had physical symptoms and was diagnosed with Parkinson's. For some years he was in good physical condition, could take care of himself fairly well after his wife passed away, but couldn't drive because he began getting lost (totally unlike him!), would tell old stories over and over, and had short-term memory problems (once left a room to answer the phone and came and was surprised to see me there; had forgotten I was there). By the time of the diagnosis, he would skip back and forth in time in a conversation; could suddenly be totally "with it" for maybe five minutes, and then lapse into the past.. He eventually couldn't walk, and at the end developed total rigidity. He still usually recognized people, was still sweet and funny and cooperative. His son had a caretaker for him to backstop the family; a very nice young lady who loved old folks and called him "grandpa".( I believe she went onto another similar position after he passed away.)
Also, my father-in-law, who lived with us for many years, also had Parkinson's, but in his case the typical hand tremor was the first symptom. He loved to walk, would go visit family in another part of town (and then call us to pick him up). When his balance got to where he could fall simply changing direction in the middle of a room, we couldn't let him walk outside alone any more, which broke his heart. His mind was clear all along, but also had type 2 diabetes and high blood pressure. I did his meds every day and gave him a small envelope with the next batch. He loved to eat (was about 200#) and couldn't understand the dietary restrictions for the diabetes, but he did insist that we not salt his food. (In fact, he would hover in the kitchen and say "No salt!") We did find a care facility that had staff that understood his native language--his English was unreliable--but the first week he kept escaping, and we brought him home. Within a few days, he apparently had a heart attack in the night and we found him gone in the morning.
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.
Take care,
Carol
I am not sure how much consolation it is, but a HUGE number of brain autopsies reveal incorrect diagnoses, even from some of the best dementia centers in the country. Finding biomarkers that will enable better diagnosis earlier is one of the hot topics in research right now. Last year I volunteered for a spinal tap for a study conducted by the M J Fox Foundation for that very purpose. Researchers are taking this very seriously.
I understand the "what if" scenarios you must be going through. Know that this misdiagnosis was Not Your Fault, and also not the fault of the medical professionals doing the best they could with what is now known. Someday we may be able to diagnose neurological conditions through blood tests or body scans or spinal taps, etc. Science is just not there yet.
Condolences on your husband's recent death.
(her husband, an old man, a younger man, a woman, & others that work in the "home." At first I tried convincing her that his is our house & home, that no one lives or works here but us two people -- husband & wife. All to no avail. So I have taken the advice of many caregivers and caregiving websites -- if her belief is not hurting her or someone else just go along with her. I must admit at first I felt like I was lying to her but I've come to realize that is her reality and I am just entering into it and agreeing. Her dementia is much more stressing than the PD is. Her dementia was dxd as Lewy Body Dementia and the symptoms are different from Alzheimer's but care needs are the same. I have come to realize that: "that Love covers all" Those we care for didn't ask for the disease (and we probably were not asked to be the caregiver) but at the end of the day (or life) no matter what has to be done our love and loving care is all that counts.
I don't know if Parkinson meds would have been better for him than the Alzheimer's meds. I shouldn't beat myself up, but I have been crying since getting this report. I always felt Bob knew more of what was going on than what one would assume from an Alzheimer's patient.
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