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He needs meds and support now. He's been experiencing dementia symptoms for a few years and kicked into high gear 8 months ago...in the middle of Covid-19.
I went through this with my mother during the height of the pandemic. You need to be the squeeky wheel sometimes to get what is needed in a timely manner. I also have been using aromatherapy and herbal support for my mother. For anyone who does not believe in these things I can tell you that they have all helped my mother (and me) tremendously! There is no cure for dementia but the symptoms can be dealt with for sure. After just a year her attitude has changed, minimal angry outbursts. Has been more involved in her care when this time last year she just wanted to sit in her chair and watch tv. Now she looks forward to taking a walk, showering, helping with meals. She has even started doing some small arts and crafts things again. The 3 best things I have given her are ginger/tumeric with black pepper (for digestive and inflammation) and melatonin for sleep and calm emotions. Prior to thus I was ready to pull my hair out. She still has some bad days but they are much less and not as severe as they were. No lore swearing and throwing things. Maybe you can talk to DH's primary care about some holistic options. Stay strong and don't let the doctors dismiss you or his needs.
Oh, you poor dear! You are dealing with 2 sides of the coin --which are not functioning as a whole. One, the Dr. is not working the system. He's playing it. I imagine that the Insurance Companies have a 6-month period forced on the medical people. Your Dr. is not being agressive enough for your husband's needs. However---getting an appointment with another neurologist may also take six months. Now it's time for you to get assertive. Call your Dr. or Zoom with him. Don't let the receptionists tell you it can't be done. Explain CLEARLY what is going on. Ask, how can we get help for DH? The sad part of this whole situation is that your husband is in a different space and time. YOU already know what tests will tell you in six months --he is declining. Peace be to you and your DH. Your road might be as hard as his.
First of all meds are no cure for dementia. No proven cure. As far as meds to control his actions, that's certainly another question altogether. Is your husband currently agitated and out of control? Or is this just a question of memory loss (because that cannot be helped with early medications; there honestly are no medications that can prevent it. Is this a neuro-psyc doctor? I would change doctors. You may end up needing placement for your husband. Medication cocktails are extremely difficult to get as far as the right combo, extremely difficult to get ones that KEEP working over time, and they need adjusting all the time. Your husband, if there is a lot of acting out will also be difficult to place. I hope that you told your Doctor that your husband, as currently medicated (or not) is impossible for you to control and live with, and will need placement and medications both under present circumstances. If he is still of the "see you in 6 months" bent it is time to seek other help. He isn't the right doctor for your case. Inform him of this and request transfer of all records when you find another neuro-psyc doc. This has to be impossibly difficult; I honestly cannot imagine. I certainly do wish you the best of luck.
Sounds like you are dissatisfied with the neurologist. Find another and get a 2nd opinion. I would suggest you might find some help by calling your local Alzheimer's Assn...not because he has that necessarily, but because they often know of the local resources. Even better is going to 1 or 2 support group meetings with others who will not only offer support but will be able to speak freely about who is a good MD in your area. Just beware that many put all their hopes in the meds as the answer and they often are not. It may offers some improvement, but don't count on it.
It looks like lots of honest answers here about there may not being medicine to help with your DH's stage of Dementia. You may need more hands on support in taking care of him.
Be sure to take advantage of resources and support and their online classes for caretakers you might find through the Alzheimer's Association. They can help guide you toward what you need and what is available in your community.
What sort of meds, more especially what sort of support?
I take from your post that the neurologist has just done a baseline assessment, which is of course the essential first step in tracking progression. But even though you can't have a valid comparison for six months, you do still have the assessment; will that not be enough for any applications you need to make regarding support for day-to-day life?
The meds for Alzheimer's don't do much. There isn't anything that can stop the progression of this awful disease. We all want to do something, but in the case of dementia there isn't much that can be done. Other comments are correct about the need for meds if there is much agitation or violent behavior. Keep in mind, too, that every drug has side effects. We always have to weigh the benefits vs the risks of any drug or other medical intervention.
I always recommend the book by Dr. Nortin Hadler, Rethinking Aging: Growing Old and Living Well in an Overtreated Society.
Everybody has to decide for themselves (or their loved ones) how much medical intervention is desirable for them.
This is a great place to come to for support and encouragement. We all wish you and your husband well. Hope you can find a local support system as well.
I’m pretty sure I’m in the same situation with my own DH. Memory issues, both long-term and short-term. He passes the mini-mental easily so neither Banner Alzheimers nor Barrow’s will give us a diagnosis. I think meds ARE available to help with the memory issues. The system is broken, but we have to march on. Meanwhile DH forgot how to make pasta! So he read the instructions on the box and carefully measured 2 qts of water. Same day, he forgot how to get to the dog park where we are regulars in our small town. Etc, etc. Bottom line, WE need to plan ahead, introduce other caregivers now, whether relatives, friends or paid, and just assume he has Alzheimer’s, which causes MOST dementia. Even without a label WE have to face that our primary relationship has changed and we must figure out how to provide appropriate care. WE must not let them drive without us, or maybe not at all. Even if the neuros give meds (ours focuses on daily aerobic exercise and eating healthy instead of prescribing meds that could help with memory ) and a diagnosis, it won’t change what I must do. At this point I just assume it’ll keep progressing. Sorry, let’s keep sharing concerns and forget about the neuros, who aren’t helpful.
Certain meds help only in the beginning. As the desease progresses they really don't help. If your DH is having night terrors or hallucinations that upset him, then yes a medication may help. If he is getting aggressive or violent, he definitely needs something because now he could hurt you. If he has anxiety, meds will help. These things do not show up on tests.
But normal progression of the desease, nothing will change the fact that his brain is dying. He is probably already experiencing short-term memory loss. Can't be reasoned with, having problems processing what is being said, shows no empathy or appreciation in what u do for him. Maybe seems more like a small child than an adult. This and more are the natural progression of the desease. No med is going to reverse it or stop it.
What sort of meds do you feel DH needs? My mother has been suffering from dementia since 2016 and there are no meds that will help her with memory issues. Unless he's acting violent or having hallucinations, IDK if there ARE any meds he can be prescribed. But maybe there are, based on symptoms you haven't mentioned. Just don't expect a miracle drug to kick in and stop his dementia........it would be nice if such a pill existed, that's for sure.
How you tell the neurologist is by saying, "Doctor, neither of us can wait 6 more months to see if there is further memory decline from the tests just run, he needs meds now, please." Just like you said here. My husband & I have been going back & forth to doctors for the past 9 months, right in the middle of the virus, nothing stopped really, just for a short period of time and then everything picked right back up.
What are the main behaviour issues? Any violent behaviour needs immediate action to keep yourself safe.
Then my safety list is as follows; Fires, falls, fear, fraud (the 4 Fs).
If he mobile around the house, is he a danger cooking/heating in the kitchen? Is he falling? Is there paranoia/fear - risk of wandering from home? Access to money/credit cards & risk of using inappropriately?
Any of these need support in the home support as soon as can be arranged. If not able to manage in the home setting, then early placement into care may becomes necessary.
Don't wait for neuro report for support. Get onto a dementia counselling service or area of aging now.
Just tell him/her that you live with DH and know him best and think he needs more help in the form of meds. If that doesn’t work, get another neurologist!
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.
Countrymouse made a great point!
It made me think that perhaps you need to see a Geriatrician!
Just food for thought!
Seek a second opinion and in the meantime document everything that is going on!!
Perhaps a Nanny cam or cell phone video along with your day to day diary!
God bless!!
I also have been using aromatherapy and herbal support for my mother. For anyone who does not believe in these things I can tell you that they have all helped my mother (and me) tremendously! There is no cure for dementia but the symptoms can be dealt with for sure. After just a year her attitude has changed, minimal angry outbursts. Has been more involved in her care when this time last year she just wanted to sit in her chair and watch tv. Now she looks forward to taking a walk, showering, helping with meals. She has even started doing some small arts and crafts things again. The 3 best things I have given her are ginger/tumeric with black pepper (for digestive and inflammation) and melatonin for sleep and calm emotions. Prior to thus I was ready to pull my hair out. She still has some bad days but they are much less and not as severe as they were. No lore swearing and throwing things. Maybe you can talk to DH's primary care about some holistic options. Stay strong and don't let the doctors dismiss you or his needs.
Now it's time for you to get assertive. Call your Dr. or Zoom with him. Don't let the receptionists tell you it can't be done. Explain CLEARLY what is going on. Ask, how can we get help for DH?
The sad part of this whole situation is that your husband is in a different space and time. YOU already know what tests will tell you in six months --he is declining. Peace be to you and your DH. Your road might be as hard as his.
Is this a neuro-psyc doctor? I would change doctors. You may end up needing placement for your husband. Medication cocktails are extremely difficult to get as far as the right combo, extremely difficult to get ones that KEEP working over time, and they need adjusting all the time. Your husband, if there is a lot of acting out will also be difficult to place. I hope that you told your Doctor that your husband, as currently medicated (or not) is impossible for you to control and live with, and will need placement and medications both under present circumstances. If he is still of the "see you in 6 months" bent it is time to seek other help. He isn't the right doctor for your case. Inform him of this and request transfer of all records when you find another neuro-psyc doc.
This has to be impossibly difficult; I honestly cannot imagine. I certainly do wish you the best of luck.
Be sure to take advantage of resources and support and their online classes for caretakers you might find through the Alzheimer's Association. They can help guide you toward what you need and what is available in your community.
I take from your post that the neurologist has just done a baseline assessment, which is of course the essential first step in tracking progression. But even though you can't have a valid comparison for six months, you do still have the assessment; will that not be enough for any applications you need to make regarding support for day-to-day life?
I always recommend the book by Dr. Nortin Hadler, Rethinking Aging: Growing Old and Living Well in an Overtreated Society.
Everybody has to decide for themselves (or their loved ones) how much medical intervention is desirable for them.
This is a great place to come to for support and encouragement. We all wish you and your husband well. Hope you can find a local support system as well.
I’m pretty sure I’m in the same situation with my own DH. Memory issues, both long-term and short-term. He passes the mini-mental easily so neither Banner Alzheimers nor Barrow’s will give us a diagnosis. I think meds ARE available to help with the memory issues. The system is broken, but we have to march on. Meanwhile DH forgot how to make pasta! So he read the instructions on the box and carefully measured 2 qts of water. Same day, he forgot how to get to the dog park where we are regulars in our small town. Etc, etc. Bottom line, WE need to plan ahead, introduce other caregivers now, whether relatives, friends or paid, and just assume he has Alzheimer’s, which causes MOST dementia. Even without a label WE have to face that our primary relationship has changed and we must figure out how to provide appropriate care. WE must not let them drive without us, or maybe not at all. Even if the neuros give meds (ours focuses on daily aerobic exercise and eating healthy instead of prescribing meds that could help with memory ) and a diagnosis, it won’t change what I must do. At this point I just assume it’ll keep progressing.
Sorry, let’s keep sharing concerns and forget about the neuros, who aren’t helpful.
Barb
But normal progression of the desease, nothing will change the fact that his brain is dying. He is probably already experiencing short-term memory loss. Can't be reasoned with, having problems processing what is being said, shows no empathy or appreciation in what u do for him. Maybe seems more like a small child than an adult. This and more are the natural progression of the desease. No med is going to reverse it or stop it.
How you tell the neurologist is by saying, "Doctor, neither of us can wait 6 more months to see if there is further memory decline from the tests just run, he needs meds now, please." Just like you said here. My husband & I have been going back & forth to doctors for the past 9 months, right in the middle of the virus, nothing stopped really, just for a short period of time and then everything picked right back up.
Wishing you the best of luck.
Then my safety list is as follows;
Fires, falls, fear, fraud (the 4 Fs).
If he mobile around the house, is he a danger cooking/heating in the kitchen? Is he falling? Is there paranoia/fear - risk of wandering from home? Access to money/credit cards & risk of using inappropriately?
Any of these need support in the home support as soon as can be arranged. If not able to manage in the home setting, then early placement into care may becomes necessary.
Don't wait for neuro report for support. Get onto a dementia counselling service or area of aging now.