Dprouty58: Perhaps you can schedule a dual appointment, e.g. one for yourself AND one for your wife; maybe that way she will not be suspect of any appointment and 'we both need prescriptions signed off by the physician.'
So many great and caring answers to your question. Seems many of us have the same issues with this disease, the most prevalent is seeing Dr's. My wife refused to go. OK, so to remove that problem put her on Hospice In-Home Care. I didn't know it existed. I only knew Hospice came in at End Of Life Care. Since she wouldn't go, I took her with me to my appts, same doctor (previously set up). He engaged her in conversation and made a preliminary diagnosis. He ordered Hospice In-Home Care. Medicare and Supp Ins pays for it all. They are wonderful. So now she sees a highly-skilled nurse every week for her meds and health check up. If necessary, she can have weekly personal hygiene help, social worker, and spiritual connection. Hospice will pay for ALL the meds related to her diagnosis including her pain meds. They will also order her other meds but we still pay for them. Life is SO much easier not having to fight to get ready for appointments. In the end, the 'official' diagnosis doesn't matter unless you need it for the ridiculous insurance requirements. She refuses to give me a DPOA. During a rough patch in our marriage she gave her alcoholic son a DPOA and turned over financial control to him. In the next few years he stole over $62K from her retirement funds. She finally asked me to help find out what her finances were, that's when we found out. Thank God he committed suicide (yes, in this case it was a blessing) and she got most of it back. So now she refuses to give me one. Yes, it will be a huge problem down the road, but until then I'll make sure she is loved and cared for at home. Best to you in whatever decisions you make. It is really a disgrace that our government and insurance companies continue to extract their pound of flesh when we most need the help or better yet, be left alone!!
You need a diagnoses to be able to make some POAs effective. Also, there are medications to help with symptoms. Knowing what kind of Dementia the Doctor is dealing with insures the person gets the correct medications.
I had a terrible time with this with my father. I had several conversations with his doctor and was told I couldn’t force him to go. The only thing I could do was to get AFS involved, which I hesitated to do because I was worried he’d be so mad he’d shut me out. Finally he fell down his stairs and couldn’t get up. His neighbors found him 3 days or so later nearly dead. He was taken to the hospital and finally diagnosed and I was able to take him home with me after he recovered enough.
There is nothing to be done about it from my experience. There is , however, a word for it; “anosognosia” and it means “without knowledge of disease”. Took me a week to learn to pronounce it correctly. I am slowly learning to, "let go and let God". One thing I did do was to make an appointment with her doctor and tell him what I was experiencing with her. Just a heads up so he could be tuned in to symptoms. As she has been failing she wants me with her during doctor appointments (even though she does not know who I am 80% of the time), so I make excuses to leave the room so he can evaluate her without me interfering.
I couldn’t get my father to go to the doctor either and I needed a DX letter from 2 doctors to activate my DPOA. So I told him his health insurance called and he is overdue for his physical and routine tests. If he doesn’t get examined they would cancel his insurance. Once we got the first DX from the first doctor he said the doctor was wrong and didn’t know what he was doing (very common with ALZ), so I said I didn’t like that doctor either so we should get a second opinion. That’s how I got my second DX letter that I needed. Since then I don’t push him to see a doctor anymore. He refuses to go and my feeling is what’s the point unless he is in pain.
Can you do a zoom call for you and your Mom together to the doctor to get a diagnosis? He would ask her a series of questions that you can not help her with. Also, taking a video discreetly and sharing it with her doctor might help. It could be during a family celebration so it wouldn’t look so obvious. I too would recommend getting someone in part time to give yourself a break. You can also apply for a 750 dollar respite grant through the Alzheimer’s Association. It would provide some funding to pay for a caregiver so that you can have a day out. Adult Day care might be worth a try. I would go with her at first. Or, you could choose to be mostly reactive and minimally proactive with the whole situation. All the best.
So what will you do with a diagnosis? The key is to be patient and kind with your love one no matter what! When the time comes you can not care for them they may need a care facility. If anything you are the one who needs to get training. There will always be moments they can remember something just cherish those moments.
Yes this! Well said… my mom was never officially diagnosed. She did not want to go to the doctor and would have been miserable in the testing. She passed a week ago here at home and happy and we had no problems caring for her, only hospice at the end.
I have been thru this with mom as well. Before the Dementia took hold, mom and I made an agreement that she would go to dr last year for UTI and physical, and she continues her macular shots. Otherwise she refuses to go. She does not want to be kept alive using artificial means. She wants to enjoy what she has, especially great grandchildren, and that it that. Don’t waste money on dentists as well - so we agreed as long as she is not in pain we let it go. She has friends who go to the dr literally every day. She doesn’t want that and her wishes are clear. Her dementia is progressing fairly quickly, I just realized the problem in December 2021.
You might call your local area agency on aging and/or your state health department, a local medical school if you have one nearby or an elder care attorney licensed in your state near where you live. Many states -- as well as local area agencies on aging or medical schools have -- "doctor home visit programs" for the frail elderly. An elder care attorney (perhaps the one who drafted your POA) may know of other physicians who do "at home" or "video visits" with the frail elderly. This may be one approach.
That said having worked "in an Alzheimer's wing" you know that a conclusive diagnosis about the type of dementia may be hard to get without various other medical imaging and/or other tests, but a physician trained in the general diagnosis of dementia and ruling out other things such as UTI, could be helpful.
Another question is where does the diagnosis lead. Is this a hope about a treatment option -- obviously that depends on the root cause as but there are not many except for a few that may delay further for a bit. Is the diagnosis needed for execution of the POA (?), is that needed for you to fully step in? Is the diagnosis needed perhaps for a facility permanent placement or seeking other benefits?
All to say how this is approached depends in part of what the diagnosis is needed for, other benefits and triggering of the POA then perhaps an elder care attorney is best to advise. If placement in a facility, then perhaps more of an Area Agency on Aging call if "she is NOT safe" and "you cannot safely provide care for her."
Perhaps another option is trickery (sorry), work out with a geriatric physician ahead of time. Tell her that you need to go to but you want her to come with you and as part of your assessment she needs to be there to answer questions too. Obviously, the appointment is really for her, but if you can use a bit of trickery to say it is for you as long as the doctor is in on it then that may be an option. I recommend a board certified geriatric physician as they often have lots of experience dealing with these situations whereas a regular family MD or internal med MD may not. My mom's geriatric internist works with both a geriatric psychiatrist and psychologist who can be helpful in handling the cognitive/psychological exams -- a huge starting point even if she won't go for any imaging tests -- later may be a bridge too far.
This is a sad/hard option, but an option. If she has a fall, her behavior becomes irrational/dangerous in that she is not mental or physically stable, call 911, say she fell/hit her head, is irrational, not safe. They can take her to the local ER for a basic assessment and imaging (if she hit her head). This basic imaging may be able to see if there are any TIAs (mini strokes that might rule out one problem). Obviously this is not a full neurological work up with contrast imaging nor other types of imaging, but it is something. The can do blood work and urinalysis (is there a UTI or other blood related indicators of other conditions that may mimic dementia or worsen it?). Make sure they know she is on no meds or won't take any, which is of concern. Urge them to admit her for 24 hours, tell them your concerns about clear cognitive decline/impairment/irrational behavior give examples, ask for a psych assessment too. Then as part of discharge refuse to take her back and insist on discharge to a Rehab hospital for physical and occupation therapy, maybe some emergency psychotherapy, medication management (if they put her on any Rx meds). If you have an elder care attorney see if they can help too work with the hospital social workers or area agency on aging for a Rehab stay at a facility that can also do the dementia work up there. I had to use this option w/my mom (84 then), the dementia work up was done/confirmed at the Rehab/SNF facility. Then, we go a permanent placement for her after a spend down. Good Luck w/this.
Hello, I’m sorry you are having difficulty with your wife. As you know It can be challenging on a daily basis to deal with someone in this situation. Other than a confirmation of Alzheimer’s, what good would it do to have her diagnosed? Unless a diagnosis is required to place her in an assisted living facility. Perhaps you might consider hiring someone to come in and provide you some relief a few days a week or for a few hours to get you out and about at least for a walk. It’s amazing what a little time away can do to help deal with the stress related to caregiving. I too know the signs and have an elderly husband that has not been diagnosed but clearly has vascular dementia. I shower, shave, dress and feed him daily and just roll with the flow as challenging as it can be, but I have been there for him for six and a half years. So in my opinion, if she is healthy otherwise I’m not sure it’s really necessary for her to see a doctor unless she clearly has other medical concerns that need attention. I wish you the best, but be sure to take care of yourself too.
I am experiencing the same issue. It’s my mom and she lives with me. She refuses to let the doctor evaluate her for cognitive issues. She analyzes the doctors notes and harasses the staff to remove anything related to dementia. I do not have a POA I would have to take her to court and the emotional and physical toll on me would be too much right now. I found a program in my state called REAP. Referral Education Assistance program. It is run by state Department of elder affairs and Service Link. It’s for seniors and the social worker comes to our home, like they are a ‘friend’. I made my mom think it was for ‘all of us’ to talk about getting along better as a family. Maybe your state has a similar program? She’s been able to slowly evaluate my mom with the same tools the doctor would use. She then shares the results with her doctor. I’ve been trying to get her diagnosed for close to a year. Help in the community is scarce in my state. I want to use her health insurance for homemaker care or something similar but I cannot do that unless she is diagnosed it’s very difficult. I completely understand what you are experiencing.
I'm so sorry that you are experiencing this struggle. Living with a spouse that has dementia is so difficult. Trying to problem-solve every day. Problems that seem to have no solution. Some people on this forum have told their spouses or loved ones that their medical insurance requires an annual physical with their primary care doctor or their insurance will be cancelled. Might be worth trying.....
I would call your council on aging and talk to a social worker to see if they can have someone come into your home to analyze her for dementia. They can give you direction on who to call and what to to do. There are services in areas that can help you.
What is the situation here? Is this your parent? Do you have a POA? What signs are you seeing of dementia? Have you spoken to the doctor of this person? I need more information to give you an idea of how you might go about this. Do you live with this person? Do they live with you?
Its my wife I do have a poa signs are wandering rummaging asking if I have a girlfriend getting angry forgetfulness losing things yes I live with them married 42 yes yes spoke to Dr hasn't seen him in three years refuses to go I have same dr
Lie! Tell them that their prescriptions are up and need to go to the doctor to get them refilled. This is how I got my Daddy to go to the doctor everytime!
Hi there, I was wondering if you yourself have seen your Doctor? General check up stuff for yourself & to mention your concerns regarding your wife? Sometimes that can be a way forward. Hopefully the Doctor has suggestions for you? Or maybe you could bring your wife along to YOUR next appointment? The Doctor can just meet her, hopefully some build trust.
THanks but we both have the same Dr she just refuses to go and she currently is not taking any prescription medicines .I have talked to the doctor and he said he would need to see her but she refuses
There is nothing to be done about it from my experience. There is , however, a word for it;
“anosognosia” and it means “without knowledge of disease”. Took me a week to learn to pronounce it correctly. I am slowly learning to, "let go and let God". One thing I did do was to make an appointment with her doctor and tell him what I was experiencing with her. Just a heads up so he could be tuned in to symptoms. As she has been failing she wants me with her during doctor appointments (even though she does not know who I am 80% of the time), so I make excuses to leave the room so he can evaluate her without me interfering.
Cindy
Her dementia is progressing fairly quickly, I just realized the problem in December 2021.
You might call your local area agency on aging and/or your state health department, a local medical school if you have one nearby or an elder care attorney licensed in your state near where you live. Many states -- as well as local area agencies on aging or medical schools have -- "doctor home visit programs" for the frail elderly. An elder care attorney (perhaps the one who drafted your POA) may know of other physicians who do "at home" or "video visits" with the frail elderly. This may be one approach.
That said having worked "in an Alzheimer's wing" you know that a conclusive diagnosis about the type of dementia may be hard to get without various other medical imaging and/or other tests, but a physician trained in the general diagnosis of dementia and ruling out other things such as UTI, could be helpful.
Another question is where does the diagnosis lead. Is this a hope about a treatment option -- obviously that depends on the root cause as but there are not many except for a few that may delay further for a bit. Is the diagnosis needed for execution of the POA (?), is that needed for you to fully step in? Is the diagnosis needed perhaps for a facility permanent placement or seeking other benefits?
All to say how this is approached depends in part of what the diagnosis is needed for, other benefits and triggering of the POA then perhaps an elder care attorney is best to advise. If placement in a facility, then perhaps more of an Area Agency on Aging call if "she is NOT safe" and "you cannot safely provide care for her."
Perhaps another option is trickery (sorry), work out with a geriatric physician ahead of time. Tell her that you need to go to but you want her to come with you and as part of your assessment she needs to be there to answer questions too. Obviously, the appointment is really for her, but if you can use a bit of trickery to say it is for you as long as the doctor is in on it then that may be an option. I recommend a board certified geriatric physician as they often have lots of experience dealing with these situations whereas a regular family MD or internal med MD may not. My mom's geriatric internist works with both a geriatric psychiatrist and psychologist who can be helpful in handling the cognitive/psychological exams -- a huge starting point even if she won't go for any imaging tests -- later may be a bridge too far.
This is a sad/hard option, but an option. If she has a fall, her behavior becomes irrational/dangerous in that she is not mental or physically stable, call 911, say she fell/hit her head, is irrational, not safe. They can take her to the local ER for a basic assessment and imaging (if she hit her head). This basic imaging may be able to see if there are any TIAs (mini strokes that might rule out one problem). Obviously this is not a full neurological work up with contrast imaging nor other types of imaging, but it is something. The can do blood work and urinalysis (is there a UTI or other blood related indicators of other conditions that may mimic dementia or worsen it?). Make sure they know she is on no meds or won't take any, which is of concern. Urge them to admit her for 24 hours, tell them your concerns about clear cognitive decline/impairment/irrational behavior give examples, ask for a psych assessment too. Then as part of discharge refuse to take her back and insist on discharge to a Rehab hospital for physical and occupation therapy, maybe some emergency psychotherapy, medication management (if they put her on any Rx meds). If you have an elder care attorney see if they can help too work with the hospital social workers or area agency on aging for a Rehab stay at a facility that can also do the dementia work up there. I had to use this option w/my mom (84 then), the dementia work up was done/confirmed at the Rehab/SNF facility. Then, we go a permanent placement for her after a spend down. Good Luck w/this.
Perhaps you might consider hiring someone to come in and provide you some relief a few days a week or for a few hours to get you out and about at least for a walk. It’s amazing what a little time away can do to help deal with the stress related to caregiving.
I too know the signs and have an elderly husband that has not been diagnosed but clearly has vascular dementia. I shower, shave, dress and feed him daily and just roll with the flow as challenging as it can be, but I have been there for him for six and a half years. So in my opinion, if she is healthy otherwise I’m not sure it’s really necessary for her to see a doctor unless she clearly has other medical concerns that need attention.
I wish you the best, but be sure to take care of yourself too.