Dementia--If you suspect a loved one is in the early stages, what do you do?

[Harriet Vane]

Friends, someone dear to me is in the early stages of dementia. I have been in close quarters over many years with two others who suffered with dementia, so I can easily recognize the signs. The family are concerned and do not know how to approach this.

 

What do we do?

 

Who do we talk to?

 

In an ideal world, what tests and evaluations are best for dementia?

 

Be as comprehensive and specific as you can.

 

Thank you.

 

Edited to add some details:

 

Loved one is married and is very, very private about health concerns. Loved one's spouse will expect to be in charge (naturally) but will NOT provide needed detail to doctors and has exhibited some real denial about issues. Dementia has not been brought up with the spouse, but we still see clear and obvious denial of issues.

 

One child of the loved one is out of state; the other child is in state but inexperienced with these issues and living with some denial as well. Both adult children are distinctly non-confrontative.

[NicksMama-Zack's Mama Too]

Friends, someone dear to me is in the early stages of dementia. I have been in close quarters over many years with two others who suffered with dementia, so I can easily recognize the signs. The family are concerned and do not know how to approach this.

 

My estranged FIL has dementia. We were unaware of his condition until we were contacted by Adult Protective Services. His doctor and a caring neighbor had both contacted APS. In my FIL's paperwork we had found an recommendation/Rx from his general physician for him to get an evaluation from a neurologists and also found paperwork from the department of motor vehicles suspending his license until he was cleared by a neurologist. Apparently, his doctor reported him to both APS and the DMV.

 

What do we do?

 

I would notify this person's general physician in writing with clear details of the signs you are seeing. The doctor may not discuss the correspondence with you because of patient/dr. confidentiality, however he or she will likely request your friend to get a neuro evaluation and notify the local division of motor vehicles to suspend his or her license pending an evaluation. I would make a call and suggest that the doctor may follow this plan of action. The doctor and his staff will not tell you what they've done, again because of confidentiality (I know this from experience), but I know they will take note of your observations.

 

Who do we talk to?t

 

see above.

 

In an ideal world, what tests and evaluations are best for dementia?

 

FIL was hospitalized and examined by the hospital psychiatrist. She determined that he was suffering from a chronic form of dementia and could not live on his own.

 

We were lucky that my FIL lived near John Hopkins, because they have a dementia center. He still had dementia, but they were able to get him medicine to cope with some of the behaviors and anxieties that accompany it.

 

Be as comprehensive and specific as you can.

 

Thank you.

 

[Halftime Hope]

I have about a penny's worth on this, so I hope others can chime in. <Paragraph break> If possible, have the family call the relative's primary care physician; the PCP may not be able to discuss due to HIPAA, but the physician sure can listen to the family's report. The next time the relative gets checked, the physician can assess and then do what they can, including order tests, to get a handle on the problem. My FIL was having symptoms, and one of the things the PCP had checked was blood flow to the brain through the carotids. That was compromised, so surgery was done. <P> I'm sure each patient would present differently, but the PCP can often help.

[Momof3littles]

Yes, I'd fill in the PCP if possible and encourage the family member to start there. Have the loved one bring a list or all of their meds in a bag for the MD to review, as medication interactions can sometimes cause issues that can look like dementia. Are they dehydrated? My husband's grandmother had a bad fall at one point, and after that was fearful of getting up a lot during the day. As a result, she was getting herself chronically dehydrated, and we were seeing more confusion and unsteadiness. Have UTI and other more pedestrian things ruled out as part of the differential done by PCP. Go from there in terms of whether to pursue testing with a specialist. Get the basic things ruled in or out first, as even a specialist will likely want that info (CBC, etc.)

 

eta: Do you have a list of meds right now? If talking to the MD you may want to review those with him or her, especially if the person in question here is not going to be able to handle that reliably. You may also jot down before calling the MD when you noticed the onset of symptoms, whether they are rapidly or steadily getting worse, staying about the same, fluctuate, etc. Is there any pattern to it? What episodes have been most concerning? That type of info will be helpful if you are doing this long distance and the person on the other end may not be reliable in terms of conveying that information to the physician.

[dakarimom5]

My two cents is from being my grandmother's primary caregiver for several years. First, only one person needs to be in charge of money, medical and household decisions.. We had different people taking my grandmother to different doctors that diagnosed opposing things. To this day two of my aunts will argue that she doesn't have alzheimer's, they say she has a glitch in her brain that will eventually be fixed with blueberries and turmeric. Decisions need to be made while there is still lucidity.

 

I think my family is probably the saddest example of what happens when decisions aren't made early enough. I have horror stories about my grandmother being lost for 9+ hours in a car, siblings putting each other in jail, and money being stolen.

[Orthodox6]

Consult a gerontologist, not a PCP. Sometimes consult a neurologist, as well.

 

(I'm not a doctor, but am caring for a mother with close-to-advanced Alzheimer's.)

[QumaCote]

In addition to dealing with the medical issues, you need to address the legal issues if at all possible. Who will make medical decisions when the person is unable to make them for themselves? Should assets be taken out of the individuals's name? Should someone else to be added to the accounts, house, etc? Should someone take over the bill paying, etc? If this person is still driving, should his/her license be revoked? Many counties will have a senior/elder care group that you can talk to and get additional information or at least some items to consider. If you can find a support group in your area, they often have great resources also. These are not easy conversations to have but not addressing them can be catastrophic. I wish you the best as you navigate this challenging situation.

[Orthodox6]

In addition to dealing with the medical issues, you need to address the legal issues if at all possible. Who will make medical decisions when the person is unable to make them for themselves? Should assets be taken out of the individuals's name? Should someone else to be added to the accounts, house, etc? Should someone take over the bill paying, etc? If this person is still driving, should his/her license be revoked? Many counties will have a senior/elder care group that you can talk to and get additional information or at least some items to consider. If you can find a support group in your area, they often have great resources also. These are not easy conversations to have but not addressing them can be catastrophic. I wish you the best as you navigate this challenging situation.

 

 

:iagree: Locate an honest attorney -- (and this does require some hard-core research, sadly, to find an honest person) -- to assist the loved one with drawing up Medical Power of Attorney and Durable Power of Attorney, listing the specific individuals he or she wishes to have the associated authorities.

 

Recently there was another thread in which MPOA and DPOA came up for discussion, and a clearly knowledgeable WTM member chimed in with good advice. I hope she will notice this thread.

[Halftime Hope]

Consult a gerontologist, not a PCP. Sometimes consult a neurologist, as well.

 

(I'm not a doctor, but am caring for a mother with close-to-advanced Alzheimer's.)

 

This is good advice, too, but sometimes (depending on the insurance) the PCP is the gatekeeper. FIL had wonderful retiree health insurance through his former workplace, much better than what he could have gotten through the best Medicare/Medigap all-comers plans or through the VA. Once I came on board as his caregiver, we quickly switched from VA (a nightmare in his case) to the other. The only glitch was that he had to see a PCP before he could be referred to specialists, but once he saw her, and she was *wonderful*, then she could refer him to any specialist he needed, and her referrals were worth their weight in gold. We got lucky with her. YMMV. <P> You mentioned neurologist: agreed that is certainly warranted once the basic causes (blockages, blood chemistry off, etc.) have been ruled out. Or if the symptoms clearly point directly to a neurological issue.

[Orthodox6]

You're right. We successfully have avoided HMOs, so I forgot about this set-up for some plans.

 

 

This is good advice, too, but sometimes (depending on the insurance) the PCP is the gatekeeper. FIL had wonderful retiree health insurance through his former workplace, much better than what he could have gotten through the best Medicare/Medigap all-comers plans or through the VA. Once I came on board as his caregiver, we quickly switched from VA (a nightmare in his case) to the other. The only glitch was that he had to see a PCP before he could be referred to specialists, but once he saw her, and she was *wonderful*, then she could refer him to any specialist he needed, and her referrals were worth their weight in gold. We got lucky with her. YMMV.

 

[OrganicAnn]

These may all seem obvious, but

 

Don't let the person drive

Don't let the person alone or in some place where they could wander off like a Mall

Don't let the person use the stove or the microwave unsupervised.

 

Try to have some trusted family members visit to provide a break for the caregiver.

 

Look into the all the possible services in the area. Even if they don't want them now, let them know what is available for the future.

 

If possible arrange things like housekeeping help, lawn care etc. These things can be easily outsourced whereas the care of the person with dementia may not be so easy.

 

In some areas and with some insurance, you can have a geriatric nurse/consultant. They will ask a lot of questions and assess the situation and give some good advice. Not everyone is willing or able to do this.

[Serenade]

 

Loved one's spouse will expect to be in charge (naturally) but will NOT provide needed detail to doctors and has exhibited some real denial about issues. Dementia has not been brought up with the spouse, but we still see clear and obvious denial of issues.

 

 

Just curious, but if the spouse is well and able, why is it important to get involved at all? Is the spouse not taking care of things that are necessary? Honestly, my opinion on these types of things is that it is up to the spouse to decide what to do, unless the spouse is not mentally capable, either. If the spouse is capable of taking care of the loved one, whether or not the loved one has dementia, why is it important to side-step the spouse and go to doctors? What is the purpose or the desired outcome? To put the loved one in a home? If I were a mentally fit old person, I would be livid at "youngsters" trying to micromanage my life or that of my spouse. Now if there is true danger involved (and not just the vague danger that someone "might" wander away, or something "might" happen), that is a different story entirely.

[Harriet Vane]

Just curious, but if the spouse is well and able, why is it important to get involved at all? Is the spouse not taking care of things that are necessary? Honestly, my opinion on these types of things is that it is up to the spouse to decide what to do, unless the spouse is not mentally capable, either. If the spouse is capable of taking care of the loved one, whether or not the loved one has dementia, why is it important to side-step the spouse and go to doctors? What is the purpose or the desired outcome? To put the loved one in a home? If I were a mentally fit old person, I would be livid at "youngsters" trying to micromanage my life or that of my spouse. Now if there is true danger involved (and not just the vague danger that someone "might" wander away, or something "might" happen), that is a different story entirely.

 

 

No one is trying to side step the spouse. No one wants to stick the loved one in an institution. The desired outcome is to get the loved one and the spouse some help. The desired outcome is also to provide any possible medical interventions in order to keep the loved one as lucid and happy and comfortable as possible.

 

The much-loved family member is not keeping up with her home and more importantly, is a danger in her car. Between the hearing loss, poor vision, and definite early dementia signs (confusion that is not related to hearing or sight issues), her driving is awful. More than one person has noticed. The spouse is in denial and the loved one needs medication to slow down an ugly process and help to maintain the life that she loves in the home that she loves.

 

Furthermore, the spouse simply is not the only one with any say. Adult children who love their mother do have every reason and right to want their mother to be safe, happy in her own home, and well cared for.

[Serenade]

No one is trying to side step the spouse. No one wants to stick the loved one in an institution. The desired outcome is to get the loved one and the spouse some help. The desired outcome is also to provide any possible medical interventions in order to keep the loved one as lucid and happy and comfortable as possible.

 

So it sounds, then, as if the spouse needs help? Is the spouse unable to adequately monitor the loved one? That is a different issue, then.

 

The much-loved family member is not keeping up with her home and more importantly, is a danger in her car. Between the hearing loss, poor vision, and definite early dementia signs (confusion that is not related to hearing or sight issues), her driving is awful. More than one person has noticed. The spouse is in denial and the loved one needs medication to slow down an ugly process and help to maintain the life that she loves in the home that she loves.

Gently, here, but not keeping up a home unless it is unsanitary is not a critical thing. The car thing could be a problem, if the spouse isn't willing to keep her from driving. Is she driving worse than a 16 year old? That, IMO, is important. If we wouldn't take the keys from a 16 year old, we shouldn't take them from an elderly person, either.

 

Furthermore, the spouse simply is not the only one with any say. Adult children who love their mother do have every reason and right to want their mother to be safe, happy in her own home, and well cared for.

 

Well, this is easier said than done. We have a problem in-law situation in a different state, and we found out there is really not much we could do without the spouse's blessing. In our case, the spouse (wife) is an alcoholic and was driving, but that is difficult to pinpoint and prove. Florida has some rules about how to commit a person, but it was nothing we could manage from afar. Unfortunately, in our case, the one in need of the most care was the non-alcoholic spouse, whom the alcoholic spouse would not care for, so he constantly ended up in the hospital. The doctors knew his wife was an alcoholic, but they also would not or could not do anything. It was/is a tough situation, but FIL is finally in assisted living (wife put him there), and we have no clue what his alcoholic wife is doing, but we do know she has hired a driver for herself, so I guess that is good at least. She refused to move into assisted living with FIL. We wanted to move him to our state, but could not do that without spouse's blessing, so there he rots, alone. His wife is AWOL, but she's still in charge. My husband, the son, can't make any decisions unless she abrogates that responsibility.

[G5052]

So much I could say here, but here's what I'd do (and did when dealing with this):

 

Find an eldercare attorney. There were none in the town of my relative, I had to go to a nearby city. My lawyer was *wonderful* and saved me so much time and expense in the long run. Even being an hour away, she dealt with many cases in my relative's town, so the distance wasn't an issue at all. She handled everything I needed over the phone. Yes, it was some $, but not bad, considering.

 

Educate yourself on guardianship and medical privacy issues. When mine was wandering the town at all hours dressed crazily, there was nothing I could do. Some of the local businesses even had restraining orders against my relative, and police got involved several times. Nothing I could do. There was nothing I could do about the lost checkbooks and money sent to lost causes. But I wrote her doctor frequently on the various issues, and sometimes the doctor took my input seriously. Sometimes.

 

Contact the state medical officer of the DMV to see what the law is and if there is a way of reporting the driving issue. Usually such reports are sealed unless there is a court order. I wrote the primary that I had contacted DMV. When my relative came wanting the medical sign-off to keep driving, the primary sent them to the neurologist. The neurologist diagnosed them with mid-stage vascular dementia, and refused to sign on the driving without further testing with a neuro-psychologist. And my relative failed that, so they lost their license. When I heard that they were still occasionally driving, I worked with a family friend to get the car sold, and that was that. Going the DMV route was the only way that I could force my relative to get a diagnosis and to ultimately get them off the road. Keep in mind that if an elderly person has an accident where they were at fault and if someone was injured, a court may order a medical evaluation. If they are found to be impaired, they could be 100% liable because they chose to drive impaired. This didn't scare my relative, but it motivated me.

 

Call Adult Protective services to get familiar with the rules there. I went this way too because my relative was abusing their spouse. Keep in mind that they will only intervene if there is strong evidence of a problem.

 

And find out about local services. The Area Agency on Aging can help. Mine fired every service that I hired. I tried. Truly.

 

It can be a long haul. A very long haul.

[Harriet Vane]

So it sounds, then, as if the spouse needs help? Is the spouse unable to adequately monitor the loved one? That is a different issue, then.

 

Gently, here, but not keeping up a home unless it is unsanitary is not a critical thing. The car thing could be a problem, if the spouse isn't willing to keep her from driving. Is she driving worse than a 16 year old? That, IMO, is important. If we wouldn't take the keys from a 16 year old, we shouldn't take them from an elderly person, either.

 

 

 

Well, this is easier said than done. We have a problem in-law situation in a different state, and we found out there is really not much we could do without the spouse's blessing. In our case, the spouse (wife) is an alcoholic and was driving, but that is difficult to pinpoint and prove. Florida has some rules about how to commit a person, but it was nothing we could manage from afar. Unfortunately, in our case, the one in need of the most care was the non-alcoholic spouse, whom the alcoholic spouse would not care for, so he constantly ended up in the hospital. The doctors knew his wife was an alcoholic, but they also would not or could not do anything. It was/is a tough situation, but FIL is finally in assisted living (wife put him there), and we have no clue what his alcoholic wife is doing, but we do know she has hired a driver for herself, so I guess that is good at least. She refused to move into assisted living with FIL. We wanted to move him to our state, but could not do that without spouse's blessing, so there he rots, alone. His wife is AWOL, but she's still in charge. My husband, the son, can't make any decisions unless she abrogates that responsibility.

 

 

 

Your posts are confusing me. I asked for advice for how best to proceed with a loved one with dementia, and find myself questioned as to whether I have the right to do anything? I haven't threatened to split up any marriages or put anyone in any institutions. I am seeking information so that a loving family can have the hard conversations that need to happen so that this loved one can be comfortable, happy, and cared for. Not one of us wants to see the spouse (who is equally loved) shoulder this burden alone.

 

First of all, yes, her driving is much, much worse than my 16-year-old's driving. She has had quite a few minor accidents. Another individual (an out of town guest) who recently drove with her was visibly shaken when she got out of the car and pulled me aside to talk to me about it. She is a danger to everyone on the road. You haven't see her; I have.

 

As for her home, I am not sitting here in judgment on the untidiness. Rather, because this is someone that I dearly love and who I know well, it is obvious that she is having difficulty keeping up with the things she loves, and that this is distressing her. It is a symptom worth noting because it is not only not normal for her, it is absolutely opposite to the person she is and totally out of character. She is the quintessential housewife who has always taken pride in her home, and put a lot of time and loving care into keeping it just so. The fact that she cannot keep up and that she seems bewildered by the routines that were normal to her for decades is a symptom that is worth noting. She hates visual clutter and is stressed by it, but seems bewildered by how to fix this. The change in her habits is definitely a reason for concern.

 

As for her spouse, yes, he has some real denial issues. It's not that he is not able or even willing to care for her, but that he does not see a need for extra care or concern. How long do we wait for him to notice? When she has a serious car accident and hurts someone? When she gets lost or hurt in some way? Are we really all supposed to stand around with our mouths shut until he wakes up or something bad happens?

 

Dementia has many causes, and there are drugs that can help slow down the process. Those who love this person want her to have all the resources possible to ease her difficulties.

 

If you have any practical suggestions or information as to what to expect from a medical evaluation or how best to broach a painful topic within the family, feel free to comment. That is what I asked for. Otherwise your posts are far from helpful.

[Tammyla]

I would have a meeting outside the home with the spouse and family first and focus on helping them reach out and get help. I'd bring information and go out of my way to be reassuring and offer to help with questions, medical appointments and calls. Going around the spouse is likely to cause additional stress in the home and family' I would only go this route after working with the spouse.

 

 

:grouphug: Dementia is awful.

 

 

I think addressing the driving issue wouldn't be that difficult. Call the DMV or even the non-emergency police and get their recommendations.

[Guest inoubliable]

No real advice, except to agree with others that consulting an attorney might be a good idea.

 

Hope you figure out something soon. Dementia can be tricky to deal with when family members who *should* be involved are in denial.

[Serenade]

 

 

Your posts are confusing me. I asked for advice for how best to proceed with a loved one with dementia, and find myself questioned as to whether I have the right to do anything?

 

 

 

I think you're being a little defensive, but I'll be happy to back out.

 

Have a nice day!

[Danestress]

 

 

Furthermore, the spouse simply is not the only one with any say. Adult children who love their mother do have every reason and right to want their mother to be safe, happy in her own home, and well cared for.

 

 

 

Having been an adult child of a parent with dementia (now deceased) I agree that children have a right to "want" certain things. But our rights to insist upon them are pretty limited.

 

In my opinion, the most important thing to do is to try to talk to both parents regularly and early about what is being observed. My greatest regret is that I found it so hard to talk to my father about his own memory loss. I think we were partly protecting his male pride (real or imaginary) when we might have done better to just really talk about "What would happen if this progresses, what would you want, what do you fear?" Also, it was just painful to see him face those demons, and avoiding it was easier. My older sister actually did much better with this. Later, we had to guess a lot about what he would have wanted, and we argued at times about decisions great and small, because we were assuming we knew what my Dad would want if he could advocate for himself.

 

As a child of a parent with dementia, who still has a spouse, absent a very clear and binding legal decision made by the patient while she is still capable of making legal decisions, the spouse is going to ultimately make decisions, and your job is so push and prod if able, but mostly to comfort, assist, and provide support, even when you don't love the decisions being made. I constantly thought about how I would feel if the tables were turned. If DH or I were incapacitated and our parents decided they had the right to interfere, demand medical record access, insist on access to finances, etc. The situations are not exactly the same, but the level of boundary observing, respect and discretion required is the same. They might see things they hated (messy house, spouse drinking depressed, delayed medical treatment) and just have to live with it. Marriage is special. When you marry someone, you are often choosing who is going to make decisions for you and care for you 50 years later! Buyer beware.

 

Also, after my father died, I think only then did I realize how much stress my Mom was under. I was involved in Dad's daily care, so it's not like I just swooped in occasionally and observed the situation. I also was under tremendous stress. It was a dreadful couple of years at the end. And I did well working with my Mom - she really did a great job. But there were times I was annoyed at her - felt she should advocate more forcefully for my father, insist on various tests, spend more time with him, supervise what he was eating, ask more questions, etc etc. Looking back, I know that my father was failing and my mother was in the absolute depths of depression and despair, and actually did well considering. I see this a lot in other families, and I think it is common for adult children to judge somewhat harshly the "healthy" parent as not being a good caregiver. I always tell them to give a lot of emotional and physical support to the healthy parent - take that person meals, make sure that person has sleep and healthcare and rest. Enable that person to be as good a caregiver as possible, and if that won't be particularly good, talk early and often about how you can be involved.

[Harriet Vane]

I would have a meeting outside the home with the spouse and family first and focus on helping them reach out and get help. I'd bring information and go out of my way to be reassuring and offer to help with questions, medical appointments and calls. Going around the spouse is likely to cause additional stress in the home and family' I would only go this route after working with the spouse.

 

 

:grouphug: Dementia is awful.

 

 

I think addressing the driving issue wouldn't be that difficult. Call the DMV or even the non-emergency police and get their recommendations.

 

 

 

Yes, a meeting is what needs to happen. I am seeking information to bring to that meeting. What options are there for evaluation? What will a doctor expect to do? What information should be given to the doctor?

 

I have not at any point threatened to go around anyone's spouse. I am not sure how that became a matter of debate in this thread, so let me just clarify:

 

I want information and advice so that two adult children and the spouse of the loved one can have an intelligent conversation about how best to manage the loved one's apparent difficulties.

 

When I say that the spouse is exhibiting denial, I mean that he is attributing her cognitive difficulties to other factors such as hearing or vision loss or lack of confidence or other. We want him to see that an evaluation is needed but think that this will be a difficult discussion.

 

Also the spouse is one who never, ever gives needed details to any doctor. We have a very legitimate concern that his innate reticence coupled with his denial will result in a doctor not having the information that is needed to accurately assess the situation.

[sparrow]

 

 

Yes, a meeting is what needs to happen. I am seeking information to bring to that meeting. What options are there for evaluation? What will a doctor expect to do? What information should be given to the doctor?

 

I have not at any point threatened to go around anyone's spouse. I am not sure how that became a matter of debate in this thread, so let me just clarify:

 

I want information and advice so that two adult children and the spouse of the loved one can have an intelligent conversation about how best to manage the loved one's apparent difficulties.

 

When I say that the spouse is exhibiting denial, I mean that he is attributing her cognitive difficulties to other factors such as hearing or vision loss or lack of confidence or other. We want him to see that an evaluation is needed but think that this will be a difficult discussion.

 

Also the spouse is one who never, ever gives needed details to any doctor. We have a very legitimate concern that his innate reticence coupled with his denial will result in a doctor not having the information that is needed to accurately assess the situation.

 

 

 

First :grouphug: . My mother passed away last month after struggling with Lewy Body Dementia for the past few years. It is absolutely the hardest thing I've ever had to deal with in my life.

 

I don't think anyone is questioning that your intentions are in the right place. I think that people that have been there are trying to give you realistic expectations regarding how this can play out. Unfortunately, family meetings and doctor consultations, while they sound reasonable to *you*, may not be an option unless the spouse is on board. Many are not. The spouse may see the writing on the wall, but admitting it is easier said than done. I tried gently suggesting things over the years, but honestly, there had to be major breaks in behavior, and minor emergencies, before anything was done.

 

So, all of this to say, do the best you can, but you may need to back-off, despite it being in this loved one's best interest.

 

I agree to start researching a good eldercare lawyer now.

[Tammyla]

Oh, I hope I didn't add to your stress here; I believe your heart is in the right place. :grouphug:

 

I've had experience working within the family dynamic of a spouse burying their head in the sand, while their loved one needed medical treatment.

 

Even with the best of intentions, the spouse often will not cooperate if they don't feel in charge and that just leads to more heartache and problems for everyone. The medical system is set up to put the spouse in charge (in most cases) and getting them on board just makes life easier all around.

[Orthodox6]

OP is not being defensive. Good grief! She asked about early stage dementia but received comments about alcoholism and spousal abuse. Major disjunction.

[G5052]

I agree that the family should try to meet first to come to agreement. That may or may not go well, but one can hope. In my case, I was left alone to act, and I did. The others didn't want to be involved. The spouse completely denied the problem.

 

And when you meet with the individual, it can help to have a neutral third party. There are actually eldercare mediators that you can hire for this sort of thing and the family meeting, but that wasn't available in the area where my relative lived. I was fortunate that the next door neighbor was a social worker specializing in elder care issues. We had been in communication over the issues for months, so I involved her as an expert and as someone who genuinely cared about the situation. The spouse refused to be present. Unfortunately, that did not go well either.

 

If you communicate with the person's primary care doctor, I would give specific examples of your concerns and let them choose how to handle it. They can do what is called a "mini mental state exam involving memory and cognitive skills." My relative actually passed this with flying colors, but the doctor decided that the incidents related were serious enough that a neurologist was needed. If they refer to a neurologist, there will likely be MRI's and longer testing of memory and cognitive issues. My relative had at least 8 areas of dead brain tissue on the MRI's and was marginal on the neurologist's in-office testing. Then the neuro-psychologist flagged physical, memory, and cognitive issues, and flagged them at "moderately severe" or Stage 5 on the dementia scale.

 

The whole thing can be very, very stressful, and may not go well. People who have dementia are often paranoid and lack the ability to think through the results of their actions, so it is very hard to talk to them about these things. Ultimately I decided that I had to do the right thing for the person despite the consequences.

 

It isn't easy to talk about how wrong this can go, but in my circle of friends I only know of one family where it went smoothly. That is in probably a dozen or more cases. So it doesn't hurt to work out what the options are if it gets difficult while you hope for the best. I wish that I had done more research up front instead of having to do it on the fly while voicemail was filling up, and I was trying to decide if I needed to get on an airplane.

[Orthodox6]

I hear you. Truly. Fact remains, however, that the spouse has the legal rights at this point. He must come to terms with the situation. You can gather the useful information to provide when he reaches reality and is receptive.

 

BTW, dementia medications are not as life-changing as the advertisements would have us believe. My mom's gerontologist -- (one of the finest physicians we ever have worked with) -- has discussed with us how the medications help for a few years, then safely may be discontinued because they no longer are providing benefit. Frankly, the meds did squat for my mother. She now has had Alzheimers for over sixteen years.

 

Do as much as you can, nonetheless. For example -- and I do not know whether this is legal or not -- you could document (witnesses needed) her driving problems and present the information to the DPS with your concerns about continuing to drive.

 

If you can rearrange the house for safety, try to do so. Think of the details which are helpful for all elderly people, not just those with dementia. (e.g. lamp wires safely placed to prevent tripping) Two-key deadbolts on the exterior doors are good, in case she ever develops a wandering tendency. Not all dementia patients do, although this is a stereotype.

 

Until/unless a neurologist or gerontologist provides a well-educated-probable diagnosis of dementia (and there are various types), you can learn a great deal from http://www.alz.org/

 

 

 

 

 

No one is trying to side step the spouse. No one wants to stick the loved one in an institution. The desired outcome is to get the loved one and the spouse some help. The desired outcome is also to provide any possible medical interventions in order to keep the loved one as lucid and happy and comfortable as possible.

 

The much-loved family member is not keeping up with her home and more importantly, is a danger in her car. Between the hearing loss, poor vision, and definite early dementia signs (confusion that is not related to hearing or sight issues), her driving is awful. More than one person has noticed. The spouse is in denial and the loved one needs medication to slow down an ugly process and help to maintain the life that she loves in the home that she loves.

 

Furthermore, the spouse simply is not the only one with any say. Adult children who love their mother do have every reason and right to want their mother to be safe, happy in her own home, and well cared for.

 

[Tammyla]

Senior services may have the information you need for your state; I'd check on-line first and go from there.

 

When you get to the meeting stage, prepare your heart for the spouse not to agree with your findings. A neutral third party is a very good idea along with an agenda to keep the conversation focused. There is a possibility the spouse is correct and it isn't dementia; the evaluation will help the loved one either way and that's the goal.

 

The spouse might be open to you writing up the symptoms and concerns; then you might be able to e-mail them before hand to the office, eliminating the worry of remembering them during the visit. This would also allow the doctor to prepare for the exam and lessen the stress on your parents. (I'm thinking this is your parents and sorry if I'm wrong.)

 

 

 

Yes, a meeting is what needs to happen. I am seeking information to bring to that meeting. What options are there for evaluation? What will a doctor expect to do? What information should be given to the doctor?

 

I have not at any point threatened to go around anyone's spouse. I am not sure how that became a matter of debate in this thread, so let me just clarify:

 

I want information and advice so that two adult children and the spouse of the loved one can have an intelligent conversation about how best to manage the loved one's apparent difficulties.

 

When I say that the spouse is exhibiting denial, I mean that he is attributing her cognitive difficulties to other factors such as hearing or vision loss or lack of confidence or other. We want him to see that an evaluation is needed but think that this will be a difficult discussion.

 

Also the spouse is one who never, ever gives needed details to any doctor. We have a very legitimate concern that his innate reticence coupled with his denial will result in a doctor not having the information that is needed to accurately assess the situation.

 

[Orthodox6]

My respect goes out to you for how hard you worked for your family!

 

I'm in the middle of all this, and have posted about it before. My father was the sole caregiver for my mother (with Alzheimers) for fifteen years. He nearly died. I rushed him to the hospital when I arrived in March 2012 and found him so weak. That month, my mother moved into a care facility up near us, and my father moved in with us. Mom will turn 90 on Monday. Her care has ranged from good to criminally liable, no matter what the price tag of the facility. I cannot let up on keeping careful watch on her, but ultimately she is helpless -- and this is killing me emotionally. My father turned 91 in May. He is frail, but wholly mentally competent. Even so, his full-time care drains me and the entire family. Truthfully, though, it is a royal blessing to have him with us.

 

 

Having been an adult child of a parent with dementia (now deceased) I agree that children have a

right to "want" certain things. But our rights to insist upon them are pretty limited.

 

In my opinion, the most important thing to do is to try to talk to both parents regularly and early about what is being observed. My greatest regret is that I found it so hard to talk to my father about his own memory loss. I think we were partly protecting his male pride (real or imaginary) when we might have done better to just really talk about "What would happen if this progresses, what would you want, what do you fear?" Also, it was just painful to see him face those demons, and avoiding it was easier. My older sister actually did much better with this. Later, we had to guess a lot about what he would have wanted, and we argued at times about decisions great and small, because we were assuming we knew what my Dad would want if he could advocate for himself.

 

As a child of a parent with dementia, who still has a spouse, absent a very clear and binding legal decision made by the patient while she is still capable of making legal decisions, the spouse is going to ultimately make decisions, and your job is so push and prod if able, but mostly to comfort, assist, and provide support, even when you don't love the decisions being made. I constantly thought about how I would feel if the tables were turned. If DH or I were incapacitated and our parents decided they had the right to interfere, demand medical record access, insist on access to finances, etc. The situations are not exactly the same, but the level of boundary observing, respect and discretion required is the same. They might see things they hated (messy house, spouse drinking depressed, delayed medical treatment) and just have to live with it. Marriage is special. When you marry someone, you are often choosing who is going to make decisions for you and care for you 50 years later! Buyer beware.

 

Also, after my father died, I think only then did I realize how much stress my Mom was under. I was involved in Dad's daily care, so it's not like I just swooped in occasionally and observed the situation. I also was under tremendous stress. It was a dreadful couple of years at the end. And I did well working with my Mom - she really did a great job. But there were times I was annoyed at her - felt she should advocate more forcefully for my father, insist on various tests, spend more time with him, supervise what he was eating, ask more questions, etc etc. Looking back, I know that my father was failing and my mother was in the absolute depths of depression and despair, and actually did well considering. I see this a lot in other families, and I think it is common for adult children to judge somewhat harshly the "healthy" parent as not being a good caregiver. I always tell them to give a lot of emotional and physical support to the healthy parent - take that person meals, make sure that person has sleep and healthcare and rest. Enable that person to be as good a caregiver as possible, and if that won't be particularly good, talk early and often about how you can be involved.

 

[sparrow]

Oh, and I have a copy of The 36-Hour Day that I would be happy to pass along to you, if you pm me your address. My mom's neurologist let me borrow it and she has since retired. It would be nice if it could help someone else.

[Harriet Vane]

 

 

Having been an adult child of a parent with dementia (now deceased) I agree that children have a right to "want" certain things. But our rights to insist upon them are pretty limited.

 

In my opinion, the most important thing to do is to try to talk to both parents regularly and early about what is being observed. My greatest regret is that I found it so hard to talk to my father about his own memory loss. I think we were partly protecting his male pride (real or imaginary) when we might have done better to just really talk about "What would happen if this progresses, what would you want, what do you fear?" Also, it was just painful to see him face those demons, and avoiding it was easier. My older sister actually did much better with this. Later, we had to guess a lot about what he would have wanted, and we argued at times about decisions great and small, because we were assuming we knew what my Dad would want if he could advocate for himself.

 

As a child of a parent with dementia, who still has a spouse, absent a very clear and binding legal decision made by the patient while she is still capable of making legal decisions, the spouse is going to ultimately make decisions, and your job is so push and prod if able, but mostly to comfort, assist, and provide support, even when you don't love the decisions being made. I constantly thought about how I would feel if the tables were turned. If DH or I were incapacitated and our parents decided they had the right to interfere, demand medical record access, insist on access to finances, etc. The situations are not exactly the same, but the level of boundary observing, respect and discretion required is the same. They might see things they hated (messy house, spouse drinking depressed, delayed medical treatment) and just have to live with it. Marriage is special. When you marry someone, you are often choosing who is going to make decisions for you and care for you 50 years later! Buyer beware.

 

Also, after my father died, I think only then did I realize how much stress my Mom was under. I was involved in Dad's daily care, so it's not like I just swooped in occasionally and observed the situation. I also was under tremendous stress. It was a dreadful couple of years at the end. And I did well working with my Mom - she really did a great job. But there were times I was annoyed at her - felt she should advocate more forcefully for my father, insist on various tests, spend more time with him, supervise what he was eating, ask more questions, etc etc. Looking back, I know that my father was failing and my mother was in the absolute depths of depression and despair, and actually did well considering. I see this a lot in other families, and I think it is common for adult children to judge somewhat harshly the "healthy" parent as not being a good caregiver. I always tell them to give a lot of emotional and physical support to the healthy parent - take that person meals, make sure that person has sleep and healthcare and rest. Enable that person to be as good a caregiver as possible, and if that won't be particularly good, talk early and often about how you can be involved.

 

 

So much of your post has really resonated with me. Thanks for sharing.

 

In many ways I have already walked this road. My grandmother had dementia, and my dysfunctional relatives would not do one thing about it. The level of denial was truly unbelievable, and it took some scary incidents that culminated in a police station for anyone to address her needs meaningfully. My aunt (more like a sister due to our close ages and growing up largely in the same home) died of a brain tumor two years ago. Prior to her death, I spent eight years caring for her children and being the main back-up for her care. I had no actual power in either situation. I do understand the dynamics of power and control and boundaries, and I do understand supporting the main caregiver because I did that for my aunt's family.

 

In the situation I am facing now, I have a lot of day-to-day savvy about dementia and dementia care, but no official knowledge of what the drs do and how they evaluate. I have a lot of knowledge about identifying behaviors and such, but very little practical experience with having the hard conversations with the family. I also have very little practical experience on accessing the help/support systems that are available.

 

The few times I attempted conversations in my grandmother's case, it went really badly. However, I fully expected it would go badly, as the people with whom I was attempting to converse were/are very, very difficult individuals.

 

In the situation I am facing now, it is clear that the conversations need to start happening. All of the people involved love each other and are good people, but two of the three are not emotionally prepared to face that this is happening, and one of the three can acknowledge it but is emotionally immobilized by it and helpless.

 

I am trying my best to get the conversations started. I want information and resources to feed into the discussion. The adult children involved don't just want me to say, "She needs an evaluation." They want me to explain what the evaluation will be like and what to expect.

 

Also the adult children are just. plain. scared. to talk about it with their parents.

[Candid]

I would read this excellent book: http://www.amazon.com/The-Boomer-Burden-Lifetime-Accumulation/dp/078522825X/ref=sr_1_1?ie=UTF8&qid=1371764642&sr=8-1&keywords=the+boomer+burden

 

One thing they show you is how to get everybody on board by starting with hypothetical questions. It's an excellent book for you to read first.

 

Like Danetress, I think it is very important to come to grips with the fact that there maybe be very little you can do.

 

Of the things you've mentioned, calling DMV and writing the primary care doctor a letter with your observations are two things that can be done now.

 

However, with my mom slowly deteriorating I have learned that the system is not really there in terms of support or willingness to act. Her doctor, a gerontologist, has acted like we are nuts to be concerned although he was surprised to learn she was still driving. We've asked for help for years, but until she started to fall a lot last summer, no help was offered just a shoulder shrug. And because the system puts the onus of proof on everyone else, she gets to keep going to Dr. Who Cares.

 

Just in the last few months they've basically said that the drugs used to treat senile dementia are not effective so there is no real treatment to offer. Just monitoring.

 

So I mainly recommend patience, read the book. If the person in question is still somewhat together, use the questions to help them detail what they would like to happen.

[TranquilMind]

Friends, someone dear to me is in the early stages of dementia. I have been in close quarters over many years with two others who suffered with dementia, so I can easily recognize the signs. The family are concerned and do not know how to approach this.

 

What do we do?

 

Who do we talk to?

 

In an ideal world, what tests and evaluations are best for dementia?

 

Be as comprehensive and specific as you can.

 

Thank you.

 

Edited to add some details:

 

Loved one is married and is very, very private about health concerns. Loved one's spouse will expect to be in charge (naturally) but will NOT provide needed detail to doctors and has exhibited some real denial about issues. Dementia has not been brought up with the spouse, but we still see clear and obvious denial of issues.

 

One child of the loved one is out of state; the other child is in state but inexperienced with these issues and living with some denial as well. Both adult children are distinctly non-confrontative.

 

 

Well, I've been through this, and it turned out that the "dementia" was a longstanding infection that took months of antibiotics. She never returned to 100% but 80% was good! I started paying the bills, because they had been overlooked.

 

*** Elderly people do NOT present with the same symptoms of urinary or other infections as do younger people. So they are often overlooked. Check this out first!

 

Most importantly, treat the person THE SAME. If you have to repeat things a lot, or make notes around the house for reminders, just do so. If you have to swipe the car keys, just do it. But lots of people start babying elderly parents or acting like they are completely unable to do anything and they hate that.

 

We didn't do any tests or anything other than finding the infection, because our mutual doctor was sharp enough to realize that she had not been this way short months before. But, those were the days when your doctors actually visited you in the hospital. Today, they have hospital docs that don't know you from a hole in the ground, and the patient is usually loaded up with tons of useless medicine that merely makes it worse.

 

There was no spouse which is why I stepped up. If there is a spouse, defer to that person and just try to encourage him/her.

[TranquilMind]

Just curious, but if the spouse is well and able, why is it important to get involved at all? Is the spouse not taking care of things that are necessary? Honestly, my opinion on these types of things is that it is up to the spouse to decide what to do, unless the spouse is not mentally capable, either. If the spouse is capable of taking care of the loved one, whether or not the loved one has dementia, why is it important to side-step the spouse and go to doctors? What is the purpose or the desired outcome? To put the loved one in a home? If I were a mentally fit old person, I would be livid at "youngsters" trying to micromanage my life or that of my spouse. Now if there is true danger involved (and not just the vague danger that someone "might" wander away, or something "might" happen), that is a different story entirely.

 

 

I completely agree with every word of this.

 

Especially the part about potential danger not being true danger.

[QumaCote]

One thing we did in our family which may or may not be useful in your situation was actually write a letter to my MIL. All of the kids noticed things with my FIL, but there was major denial about what was happening. My MIL initially wasn't happy about the letter but finally realized we had her best interests at heart. We then helped with attorneys and doctors to try and minimize the "damage" as time progressed. One thing that I wished the family HAD done but did not was write down memories or special things the failing person would want his or her family to know. However, some people can't face the reality of what is happening or it is too emotionally painful to deal with the memories. We often found that it had to be a third-party (generally a paid professional) to suggest things before they would happen. All of the kids could suggest something, and it would be ignored. However, if someone was hired then the advice would be heeded. I wish you the best--this is a very difficult journey.

[Luckymama]

To all of you, :grouphug:

 

I lost my parents to disease but I can see us going this road with dh's parents.

[Orthodox6]

Unless a family is too dysfunctional at a whole to do so, families owe it to themselves to discuss eldercare and health issues early on. They owe it to themselves to have basic plans agreed upon, even though plans can change radically and without warning, depending upon the situation. They owe it to themselves to have Durable Power of Attorney and Medical Power of Attorney set up before the older person no longer can decide what he or she personally wants to be done. Decisions about end-of-life care need to be made. Does a parent want to have a DNR in place? ("Do Not Resuscitate") Whether or not someone wants this is a serious decision. Without a DNR (if one is desired), emergency personnel, nursing home and hospital staff all are required by law to attempt resuscitation. My son (fresh from EMT graduation) describes this as often a physically brutal action, in order to be successful. Wills need to be drawn up. Decisions about funerals and burial must be made carefully. Families need to do a lot of research about so much, and guard against being deceived or ripped off by commercial ventures and lawyers. . . .

 

These, and other issues, are avoided by many, many people. They do not want to discuss death and the associated subjects. I have the impression that this is a major problem in America.

 

My father now is 91, and fully mentally fit. Thanks be that he was the impetus for DH and me to work through all these topics with him. It is a HUGE set of tasks. He and my mother covered a lot of necessary territory back in the mid-1980s. There still remained plenty to do, and Dad, DH and I are working as quickly and as well as we can, given our already overburdened schedules.

 

The spouse of OP's relative may be as "well and able" as a physically healthy genius, but still be avoiding facing up to these life issues -- issues which are not going to go away by being ignored. As for consulting doctors, dementia diagnosis, or diagnosis of other conditions that exhibit dementia-like symptoms, is not something to postpone. The health of someone is at stake. Proper diagnosis and appropriate treatment and care are essential in providing as best-quality a life for the individual as possible. . . . The spouse may be capable of providing care now. Six years or longer from now, he may not be. I belabor the point, I recognize, but I never, ever will forget the sight of my father, who loves his wife to the point of investing fifteen years full-time to her care, by himself, so run-down, exhausted, and near-death by his loving self-sacrifice that I nearly burst into tears upon finding him in such pitiable state. (I do not live near my parents former home, and ongoing major illness in my immediate family long have prevented my visiting often.)

 

OP is unassailably correct to bring her concerns to the foreground for her obviously loved relative.

 

I'll stop now. Care for my parents is an issue currently at the center of my every single day, and at my emotional center. Definitely going to elicit passionate responses from me.

 

 

Just curious, but if the spouse is well and able, why is it important to get involved at all? Is the spouse not taking care of things that are necessary? Honestly, my opinion on these types of things is that it is up to the spouse to decide what to do, unless the spouse is not mentally capable, either. If the spouse is capable of taking care of the loved one, whether or not the loved one has dementia, why is it important to side-step the spouse and go to doctors? What is the purpose or the desired outcome? To put the loved one in a home? If I were a mentally fit old person, I would be livid at "youngsters" trying to micromanage my life or that of my spouse. Now if there is true danger involved (and not just the vague danger that someone "might" wander away, or something "might" happen), that is a different story entirely.

[Harriet Vane]

Orthodox6--thank you for your kind words and for sharing your story.