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My father lives in Funny River near Soldotna and Kenia. I live in Maryland and need to find resources to refer my mother and brother to so that they can get the help to start dealing with what is happening with my father.
I follow this Q and A closely. Ferris1 usually hits the nail on the head squarely. Please evaluate her abbreviated advice with respect. Many of the entries are wordy and mean well, but they miss the target.
I recently attended a webinar on dementia, it reminded me that some dementias are due to underlying medical issues and once these are cleared up the dementia also clears. We all know how UTI present as dementia in the elderly. Also there are now meds to slow the progression, so time is key. Ask primary care for complete work up and referal to neurologist. Finding the cause brings treatment. There is a lot you can do to help, just do it quickly for best results
I disagree with Ferris' remark about your hands being tied. Your hands are not tied. you are empowered to provide your dad with the best possible quality of life that can be made available to him. My mom has had Alzheimer's for 10 years and she still laughs, and has fun, and has things in her life that she enjoys....She's still a full person...smh. As an aside, our neurologist told us that everyone's dementia progresses at a different rate. The other thing you can do for yourself--it's a big one--don't get some worst case scenario stuck in your head that will likely never happen. I'm 10 years ahead of you, and the 2 biggest things I feared never happened. Granted, I don't know what tomorrow will bring, but when I think of the sleep I lost needlessly.... I know better now. Learn from me. My other fear was my mom "ending up" in a nursing home. Well, she *is in a nursing home, but she loves it, and she's happy. and she has friends there. Those are the main things. Good luck to you.
First, I want you to know you're not alone. Many of us on this forum have been there, including me. Here's some basic info. Alzheimer's is only 1 type of dementia. Thomas0611 is absolutely right that there are a lot of conditions that can mimic dementia, including, in older adults, a UTI. Dementia is defined as being "activities of daily living disabled." when you are unable to properly perform 2 of the ADL's, you are considered to have dementia. ADL's include eating, dressing, ambulating, showering, and toileting. So, for example, someone with dementia may stop bathing or not clean themselves very well, wear clothes that are not appropriate for the weather or season of time of day (PJs outside, street clothes to bed), not clean well (or at all) after using the toilet, etc. "The 36 Hour Day" is the book everybody recommends, and with good reason. Be warned, however, that it explores all the worst case scenarios, and it could be tough to read. don't force yourself. I know very few people who have read it end to end, but a lot of people who use it as a reference, reading chapters as they feel they need them.
You should see your PCP first, so he can rule out other causes. More likely than not, he will refer you to a neuropsychologist for neuropsychological testing, and a neurologist. Your dad may be given an MRI and/or a PET scan to see what's happening in his brain, along with a "mini-mental." If after all that, he is dioagnosed with "age-related memory loss" or "mild cognitive impairment (MCI)," you've got some time; maybe a lot of time.
The best advice I received in my journey is "plan for 2 steps ahead." For now, that means educate yourself. There are 2 drugs that are give to people with Alzheimer's and dementia: Aricept and Namenda. My mom has taken both and they both helped her immensely. She did Namenda first, when she was at the "mild cognitive impairment" phase, and the Aricept 4 years lated when she had a "likely Alzheimer's" diagnosis. Talk to your dad's neurologist about these meds, pros, cons, timing, possible side effects, contraindications, with other meds.
Schedule a consult with an elder law attorney for some medicaid pre-planning, in case your dad needs a nursing home one day. The sooner you do this the better, as far as preserving his assets is concerned. Again, the purpose is for you to be fully informed.
Start looking at options for in-home care, should you every need to bring someone in a few times a week. Do you have friend who have gotten care for their elderly parents? Did they like the person? Would they recommend them, perhaps when their parent no longer needs the aide? Know your options. My mom went on community medicaid and we were able to get 24 hour in-home care that way, but we had no choice of aide and a lot of them were lousy. To boot, many of them were unprepared to deal with someone with advanced dementia.
I'm going to skip over assisted living, because by and large, they are no suitable for people with any kind of cognitive impairment. I'll go straight to nursing home.
If your dad needs nursing home care in the future, unless he's in a wheelchair, he will need a "secure (or locked) dementia unit" so he can't leave the facility and get lost or hurt. Go to alz.org and look up nursing homes in your area. Go to the medicare/medicaid website and make not of the facilities that have at least average rating, then start calling to see if they have a secure dementia unit. If they do, set up a tour and ask a lot of questions. Get a feel for each of these facilities.
That's how you plan for two steps ahead. Honestly, I hope you never need to take my advice, and you may not, but I recommend doing all this stuff now because you *really don't want an increase in need to catch you by surprise and have nowhere to turn. You want to be fully prepared for anything.
hi gajjrkemj, Alaska is is remote, even the big city of Anchorage is like a small town in the lower 48. i googled Funny River Council on aging, this is what i got... http://www.kpnfcsp.org/resources_for_family_caregiver.aspx there are a lot of helpful sites. i see the population is under 1000 for the town. Please keep helping as much as you can long distance, time passes slower in the state of Alaska. We spent time in Palmer this May and 10 days seemed like a month. My husbands uncle has Alz and we were invited to stay with him and his wife. Well, she also has memory issues. they have a person that comes almost every week day to observe and "help" they play cards or watch old movies. he works for some government branch and fills out reports on their progress or decline. I wish you the best with your family, hopefully you getting some action for assessment in home can help get your folks the resources they need in place.
Our family is in the same boat. Dad has memory issues but has not been diagnosed with any reason as to why. So we are in limbo for now dealing with the symptoms of whatever is causing his memory issues. The internet links mentioned by others are great. There is so much good information out there but make sure it's from a reputable website. Here's what we've done: My mom went to an Alz support group and she learned quite a bit. She was badgering my dad to go get tested, but after hearing other people's experiences, she has backed off. But I would suggest that for your mom. Their primary doctor also suspects but it's like he's in the beginning stages. Dad keeps an extremely detailed diary for himself. I bought him one of those Dayclox that displays the day of the week (not abbreviated) as well as the date, year and time. He was forgetting what day of the week it was and I was afraid he'd overdose on his meds. His memory gets worse when he's tired and overwhelmed. My mom, brother and I also communicate about what we've learned and how it applies to dad. It's takes an enormous amount of patience but the more you and your mom learn, the better. I hope to hear what works for you and others.
Why doesn't your mother and brother know about doctors in their area? Have them look for a neurologist specializing in dementia. Other than getting a diagnosis, there is no cure for dementia and it is a terminal illness. Give as much support as you can, but ultimately your hands are tied.
I agree about eliminating other medical issues. We managed Senior Living Communities and I can't tell you how devastating UTI's can be - it will totally change someone's personality. For some reason too often we had to suggest that the family request the appropriate testing or get a testing kit and do it at home. Too many physicians miss this obvious diagnosis in Seniors and it's treatable. This is only one diagnosis that may alter personality - definitely journal and talk to your physician.
There are dozens of medical conditions that mimic dementia. Get your PMP family doctor to rule them out. The dementia diagnosis is definitely trial and error. It could be Alz or vascular (small vessel or TIAs), or Lewy Body. The Meds are definitely trial, error, adjustment, changes, etc. Everyone agrees Lewy Body patients are extremely sensitive to Meds, so be aware.
Good advice from everyone here. Learn all that you can about Alzheimer's and other types of dementia. Ask your mother to journal about daily issues so that the doctor will have something to go by. If you go to www.aging.gov, and click on Alaska (under state services) you'll see a whole list of aging services. Follow thorough on that.
Please let us know how your whole family is doing as time goes on. Carol
If your father has a longstanding relationship with a physician, family doctor, then you could start with him/her. Sometimes, they refuse to accept a family's concerns. I see that you are in Maryland, John Hopkins has excellent diagnostic and treatment facilities. Dr. Peter Rabins, the author of "The 36 Hour Day," has a newish center affiliated with John Hopkins. If you are on the Eastern Shore or near Sykesville, Intergrace has excellent diagnostic capabilities. The Easton facility has an outstanding memory clinic, which I have visited. However, getting a clear diagnosis often takes a couple years because the path to such diagnosis is not a straight one. Your father may have underlying medical conditions, which are showing up as ALZ symptoms. He might be depressed, and then a physician may treat the depression first. Only an autopsy reveals whether a person truly has Alzheimers (sorry if that sounds insensitive). If your mother can keep a diary of your father's symptoms, then she can share it with a physician or neurologist who is diagnosing your father's condition. A diary that records the date, time and your father's ALZ behaviors can be very helpful in obtaining a diagnosis. Let us know if you need more assistance as I live in Washington, DC area.
Try the website: www.alz.org. It has many resources. Also, communities usually have a separate organization that's local of the above national one. Good luck.
Sometimes hospitals have referral services, on their websites or by calling. You could research the hospitals in Kenai, Soldatna, Funny River, and perhaps Sterling, then contact them to ask which doctors of specific specialties (neurological, geriatric, etc.) are affiliated with them.
You might also contact the Alaska Area on Aging, Commission on Aging, and/or the Department of Aging. They may not have specific lists of doctors but might be able to direct you to sources that do.
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.
Ferris1 usually hits the nail on the head squarely. Please evaluate her abbreviated advice with respect. Many of the entries are wordy and mean well, but they miss the target.
You should see your PCP first, so he can rule out other causes. More likely than not, he will refer you to a neuropsychologist for neuropsychological testing, and a neurologist. Your dad may be given an MRI and/or a PET scan to see what's happening in his brain, along with a "mini-mental." If after all that, he is dioagnosed with "age-related memory loss" or "mild cognitive impairment (MCI)," you've got some time; maybe a lot of time.
The best advice I received in my journey is "plan for 2 steps ahead." For now, that means educate yourself. There are 2 drugs that are give to people with Alzheimer's and dementia: Aricept and Namenda. My mom has taken both and they both helped her immensely. She did Namenda first, when she was at the "mild cognitive impairment" phase, and the Aricept 4 years lated when she had a "likely Alzheimer's" diagnosis. Talk to your dad's neurologist about these meds, pros, cons, timing, possible side effects, contraindications, with other meds.
Schedule a consult with an elder law attorney for some medicaid pre-planning, in case your dad needs a nursing home one day. The sooner you do this the better, as far as preserving his assets is concerned. Again, the purpose is for you to be fully informed.
Start looking at options for in-home care, should you every need to bring someone in a few times a week. Do you have friend who have gotten care for their elderly parents? Did they like the person? Would they recommend them, perhaps when their parent no longer needs the aide? Know your options. My mom went on community medicaid and we were able to get 24 hour in-home care that way, but we had no choice of aide and a lot of them were lousy. To boot, many of them were unprepared to deal with someone with advanced dementia.
I'm going to skip over assisted living, because by and large, they are no suitable for people with any kind of cognitive impairment. I'll go straight to nursing home.
If your dad needs nursing home care in the future, unless he's in a wheelchair, he will need a "secure (or locked) dementia unit" so he can't leave the facility and get lost or hurt. Go to alz.org and look up nursing homes in your area. Go to the medicare/medicaid website and make not of the facilities that have at least average rating, then start calling to see if they have a secure dementia unit. If they do, set up a tour and ask a lot of questions. Get a feel for each of these facilities.
That's how you plan for two steps ahead. Honestly, I hope you never need to take my advice, and you may not, but I recommend doing all this stuff now because you *really don't want an increase in need to catch you by surprise and have nowhere to turn. You want to be fully prepared for anything.
Alaska is is remote, even the big city of Anchorage is like a small town in the lower 48. i googled Funny River Council on aging, this is what i got... http://www.kpnfcsp.org/resources_for_family_caregiver.aspx
there are a lot of helpful sites. i see the population is under 1000 for the town. Please keep helping as much as you can long distance, time passes slower in the state of Alaska. We spent time in Palmer this May and 10 days seemed like a month. My husbands uncle has Alz and we were invited to stay with him and his wife. Well, she also has memory issues. they have a person that comes almost every week day to observe and "help" they play cards or watch old movies. he works for some government branch and fills out reports on their progress or decline.
I wish you the best with your family, hopefully you getting some action for assessment in home can help get your folks the resources they need in place.
It's takes an enormous amount of patience but the more you and your mom learn, the better. I hope to hear what works for you and others.
Please let us know how your whole family is doing as time goes on.
Carol
However, getting a clear diagnosis often takes a couple years because the path to such diagnosis is not a straight one. Your father may have underlying medical conditions, which are showing up as ALZ symptoms. He might be depressed, and then a physician may treat the depression first. Only an autopsy reveals whether a person truly has Alzheimers (sorry if that sounds insensitive).
If your mother can keep a diary of your father's symptoms, then she can share it with a physician or neurologist who is diagnosing your father's condition. A diary that records the date, time and your father's ALZ behaviors can be very helpful in obtaining a diagnosis.
Let us know if you need more assistance as I live in Washington, DC area.
You might also contact the Alaska Area on Aging, Commission on Aging, and/or the Department of Aging. They may not have specific lists of doctors but might be able to direct you to sources that do.